# Vitamin D and Crohn's Disease



## David

> ScienceDaily (Jan. 27, 2010) — A new study has found that Vitamin D, readily available in supplements or cod liver oil, can counter the effects of Crohn's disease. John White, an endocrinologist at the Research Institute of the McGill University Health Centre, led a team of scientists from McGill University and the Université de Montréal who present their findings about the inflammatory bowel disease in the Journal of Biological Chemistry.
> 
> "Our data suggests, for the first time, that Vitamin D deficiency can contribute to Crohn's disease," says Dr. White, a professor in McGill's Department of Physiology, noting that people from northern countries, which receive less sunlight that is necessary for the fabrication of Vitamin D by the human body, are particularly vulnerable to Crohn's disease.
> 
> Vitamin D, in its active form (1,25-dihydroxyvitamin D), is a hormone that binds to receptors in the body's cells. Dr. White's interest in Vitamin D was originally in its effects in mitigating cancer. Because his results kept pointing to Vitamin D's effects on the immune system, specifically the innate immune system that acts as the body's first defense against microbial invaders, he investigated Crohn's disease. "It's a defect in innate immune handling of intestinal bacteria that leads to an inflammatory response that may lead to an autoimmune condition," stresses Dr. White.
> 
> What Vitamin D does
> 
> Dr. White and his team found that Vitamin D acts directly on the beta defensin 2 gene, which encodes an antimicrobial peptide, and the NOD2 gene that alerts cells to the presence of invading microbes. Both Beta-defensin and NOD2 have been linked to Crohn's disease. If NOD2 is deficient or defective, it cannot combat invaders in the intestinal tract.
> 
> What's most promising about this genetic discovery, says Dr. White, is how it can be quickly put to the test. "Siblings of patients with Crohn's disease that haven't yet developed the disease might be well advised to make sure they're vitamin D sufficient. It's something that's easy to do, because they can simply go to a pharmacy and buy Vitamin D supplements. The vast majority of people would be candidates for Vitamin D treatment."
> 
> "This discovery is exciting, since it shows how an over-the-counter supplement such as Vitamin D could help people defend themselves against Crohn's disease," says Marc J. Servant, a professor at the Université de Montréal's Faculty of Pharmacy and study collaborator. "We have identified a new treatment avenue for people with Crohn's disease or other inflammatory bowel diseases."
> 
> This study was funded by a grant from McGill University.


Source



> *Active Crohn's disease is associated with low vitamin D levels.*
> 
> Jørgensen SP, Hvas CL, Agnholt J, Christensen LA, Heickendorff L, Dahlerup JF.
> 
> Department of Medicine V, Hepatology and Gastroenterology, Aarhus University Hospital, Denmark
> 
> 2013 Feb 8
> 
> *BACKGROUND AND AIMS:*
> 
> Crohn's disease prevalence increases with increasing latitude. Because most vitamin D comes from sunlight exposure and murine models of intestinal inflammation have demonstrated beneficial effects of 1,25-(OH)(2) vitamin D treatment, we hypothesised that Crohn's disease activity is associated with low vitamin D levels.
> 
> *METHODS:*
> 
> In a cross-sectional study of 182 CD patients and 62 healthy controls, we measured serum 25-OH vitamin D. Stratified analysis was used to compare 25-OH vitamin D levels with Crohn's disease activity index, C-reactive protein, smoking status, intake of oral vitamin D supplements and seasonal variation in CD patients and healthy controls.
> 
> *RESULTS:*
> 
> Serum 25-OH vitamin D was inversely associated with disease activity: Median 25-OH vitamin D levels of Crohn's disease in remission, mildly, and moderately active diseases evaluated by Crohn's disease activity index were 64, 49, and 21nmol/l (p<0.01) and by CRP 68, 76, and 35nmol/l (p<0.05), respectively. Patients who took oral vitamin D supplementation had lower Crohn's disease activity index (p<0.05) and C-reactive protein (p=0.07) than non-users. Crohn's disease patients who smoked had lower vitamin D levels (51nmol/l) than patients who did not smoke (76nmol/l), p<0.01. Overall, Crohn's disease patients did not differ from healthy controls regarding 25-OH vitamin D levels
> 
> *CONCLUSIONS:*
> 
> Active Crohn's disease was associated with low serum 25-OH vitamin D. Patients who smoked had lower 25-OH vitamin D levels than patients who did not smoke, independently of disease activity.


Source

*Additional Papers and Reading:*
- http://www.crohnsforum.com/showthread.php?t=35151 Vitamin D and the NOD2 Gene.
- http://www.crohnsforum.com/showthread.php?t=47789 - Vitamin D helps macrophages target ecoli in Crohn's disease.
- http://www.crohnsforum.com/showthread.php?t=48140 - Interview with Dr. John Cannell of the Vitamin D Council.
- http://www.crohnsforum.com/showthread.php?t=48267  Track your vitamin D from the sun with your smart phone.

Anyone here supplementing vitamin D?  If so, how much, and do you feel it has helped at all?


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## Crohn's Mom

I don't supplement with Vitamin D, but I do with a multivitamin that contains it.  On the facts sheet it says "Vitamin D  1000IU (amount per serving)  250% (% daily value)".
Would this be what this article considers an equivalent to just a Vitamin D tablet alone? Or do you think it would have a better benefit if it were only D tablets alone?

I started taking the multi around a month a go hoping it would help with "something"/ anything actually.  I haven't noticed a difference in any of my health issues or energy yet tho.
I'd be willing to give Vit D by itself a shot tho if that would make a difference!


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## Lydia

The upper daily limit has been increased to 2000 IU per day. If you are deficient as up to  70% of people in North America are you may need even more than that. A blood test is a good place to start. I take 2000 IU per day plus the 400 IU in my multi. I used to take 5000 IU daily for a few months until my blood work showed my levels were good.

I give my 3 year old 1000 IU daily, plus whatever is in her multivitamin. I find it helps protect her during cold and flu season. I also give her 250 mg vitamin C during the cold and flu season.


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## My Butt Hurts

I have been so tired lately, I asked my GI to run blood tests for me.
I posted the results for my Crohn's friends to see and they mentioned that there was no check for vit D, and a lack can make you tired.
A friend of mine takes 5000 daily, but I hadn't had a chance to research it, so I just started taking 1 1000 IU pill on top of my multivitamin.

I am remission now, so I can't really say if it's helping my Crohn's symptoms.  I thought it helped my triedness for the first few days, but I'm now thinking that was my imagination. 

The ingredients are Safflower Oil, Gelatin, Purified Water USP, Glycerin, and Cholecalciferol, so I don't really know what the beneficial part is.  The last one maybe, since that is unrecognizable to me? 

I think I will have to look up and see what dose is safe for kids to have.  If my kids could have some protection against Crohn's, that would be amazing.


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## David

My Butt Hurts said:


> The ingredients are Safflower Oil, Gelatin, Purified Water USP, Glycerin, and Cholecalciferol, so I don't really know what the beneficial part is.  The last one maybe, since that is unrecognizable to me?


The Cholecalciferol is the vitamin D3.


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## Jessi

I used to take a Nature Made vitamin D tablet made with D3. It was 1000 I.U.
I recently switched to Wellesse vitamin D3 fast absorbing liquid. It is 2000 I.U.
I definitely notice a difference on the days that I forget to drink it. 

My dad was prescribed a 50,000 I.U. tablet twice a month for his MS. That's on top of his multi and an order to get outside in the sun for at least 20 minutes a day.

A recent study I watched on the news stated that of all the vitamin supplements, vitamin D is crucial for everyone to be supplementing with. It can prevent a whole world of autoimmune diseases.


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## Beach

Saw this neat testimonial about a Crohn's suffer from Australia taking vitamin D3 on Dr. Cannell's sight.  He reports that his condition improved greatly after 6 months of supplementing with 3000ius a day.    

"Mailbag: vitamin D and Crohn’s"

http://blog.vitamindcouncil.org/201...ns/?utm_medium=twitter&utm_source=twitterfeed


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## JohnnyRottenAppleseed

I tested at 33 ng/ml which is low normal range. I've been taking Carlson D3 drops 4,000 Kj a day and my depression went away. Chrohn's is in check. My gf tested at 17 g/ml and doc put her on 50,000 iu once a week till normalizes. An article the other week stated pregnant women need 4 ,000 iu a day. Ten times more than previously thought. Remember RDA's are bare minimums to avoid rickets and scurvy not optimum performance.


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## D Bergy

I took 10,000 iu a day in the Winter, and 5,000 iu in the Summer.  

When I slacked off taking it I got ill.  May be coincidence, but I am taking it again.

Dan


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## JohnnyRottenAppleseed

Dan have you had your levels  checked? I'm curious what the optimal range is. It cured moderate case of depression for me.


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## D Bergy

I had a test recently and my level was 40.  I had not been taking the D for a while.

40 is considered normal, but I shoot for 60 to 80 as the experts do not believe 40 is adequate.

I have never got above 40 even taking 10,000 iu, but I have not had very many tests.

The last thing I read on it was that the rule of thumb is 35 iu for each pound of body weight.  Sound pretty close to me.

Life guards typically have ranges from 60 to 80 of D.  

Omega 3 and quelling low grade inflammation using Ginger and Turmeric cured my depression.  The D should not hurt either.

Dan


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## DustyKat

Well Matt had his monthly bloods done last Thursday and since he hadn't been tested for Vit D in quite some while I asked that it be added to the path request. Lo and behold they were all normal except for Vit D, he is deficient...53 with a reference range of 60-160mmol/l. 

So the question is which way to go...

The GP has already suggested tablets, Ostelin 2,000 ui a day for month and then check levels. 
But since Vit D is a fat soluble vitamin and there is a degree of fat malabsorption due to the resection is it better absorbed as a liquid than a tablet? 
Or is it better given as an injection? Perhaps one of those annual mega injections? 

Any thoughts or suggestions? 

Thanks, 
Dusty. xxx


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## D Bergy

My suggestion would be to scrap the Ostelin altogether.

It is not the right form of D to begin with.  Ostelin is (ergocalciferol with ergosterol) or vitamin D-2.  

Vitamin D-3 (cholecalciferol)what is found in food and produced from sun exposure.  It is what is in over the counter D-3 supplements, which I am sure are way cheaper than Ostelin.

Vitamin D-2 is not even naturally produced by vertebrates, and it simply makes no sense to substitute what we are lacking, with something else we are not.

Do a little research on it.  I think you will agree that D-2 is not a good substitute for D-3  It is not absorbed well either, so the 2,000 iu is unlikely to even budge his levels.  

I use a liquid form of D-3 and when I can, I take it with Coconut Oil or a meal with fat in it, which is nearly all of them.

Dan


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## Beach

I agree with taking D3 in liquid form.  That seems to be the better kind of vitamin D for use in the body.  It has worked well for me.  And recall this article from a cardiologist on what worked best for his patients when supplementing with vitamin D.  He had poor results when tablets where used.    

"Getting vitamin D right"

http://www.trackyourplaque.com/blog/2010/01/getting-vitamin-d-right.html

Thought to add that I read Dr. Michael Hollick's book on vitamin D.  Here in America he is one of the leading researchers on the vitamin.  He mentioned that some crohns patients have had difficulty absorbing vitamin D supplements.  So what he has done in those cases is arrange for the patients to sun bath, or use a D3 UVB lamp, for 20 minutes every other day.  The nice thing about obtaining D3 naturally through sun light is that there are up to a dozen other substances created in the skin other than vitamin D.  They are little understood, but undoubtably have a purpose.     

His web sight is at:

http://vitamindhealth.org/


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## David

Dusty, isn't summer heading your way fast?  In addition to whatever is suggested above, how about suggesting he take 5 minute walks with his shirt off if he isn't on meds that preclude this. Then 7 minutes, then 10 minutes, and work up to 20 minute jogs?  Exercise and sun


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## Crohn's 35

In a past post a few years ago, there was findings that most people who got diagnosed had the bloods checked and was low.  I agree with DAN that you need to up the doses in the winter.  Now with hotter summers, most people stay indoors and their meds usually require to stay out of the sun with prolonged times.  Where my husband works he is in the mines where there is not much sunlight in the winter and he is underground so I make him take the Vitamin D3 and Fish oil.  I am sick enough for the both of us


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## LOSTnut

I take a multi (not sure how many IU's are in there) daily and one D3 with 5000 IU daily. 
Not sure if it made a difference but I was told by my GP to do so after blood tests showed that I was low.


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## Sunshine Cat

I don't go outside often enough so I take vitamin D every day. Hope it's doing some good.


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## Crohn's 35

Believe it or not there was a study done and put in the that women to take multivitamins do not live as long as their counterparts.  Didnt read is all but I dont take a multivitamin because I try to eat right.


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## David

Pen said:


> Believe it or not there was a study done and put in the that women to take multivitamins do not live as long as their counterparts.  Didnt read is all but I dont take a multivitamin because I try to eat right.


It was an observational study and infinitely more properly controlled studies have shown the benefits of proper supplementation.


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## D Bergy

That vitamin study was about as unscientific as they come.  There was virtually no controls of any kind.  It would never be accepted in any way by serious researchers.

It is one of those things the press ran with, without any investigation into the methods involved.

It certainly is better to get your nutrition from food, if that is possible.  Vitamin D-3 is something that is not in many foods.
Dan


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## Crohn's 35

I agree with the Vitamin D3 I gotta start taking it now, darker longer.  I just hate taking more pills than I need to.  I dont have food problems at the moment.  To make sure I am ok once in a while if I don't eat right I always have ensure on hand.  Cause I like the taste.

Yeah my daughter is in research now and she says when the publicize stuff, you have to follow the money... her professors have taught her well


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## JohnnyRottenAppleseed

Pen said:


> Believe it or not there was a study done and put in the that women to take multivitamins do not live as long as their counterparts.  Didnt read is all but I dont take a multivitamin because I try to eat right.


yeah because if you are vitamin deficient then you will be sicker and they can make more money treating you.

don't guess. have a medical doctor test you for vitamin deficiency and supplement accordingly. 

if you eat a balanced diet (it's not as easy as it sounds) then you might be good but you would have to be a rare hyper vigilant individual who cookes most of their own food and makes amazing choices.


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## JohnnyRottenAppleseed

to the Original Poster:  Carlson D3 drops are top of the line in coconut oil. I'm not a salesperson i'm a poor documentary filmmaker with crohn's. just last week an article in mainstream media mentioned pregnant women need 10x than previously thought. that article said pregnant women need 4,000 iu a day. so if you take into consideration the RDA of Vitamin C, and how much Vitamin C we take when we get a cold, 1000's of mg more than RDA, come up with your own conclusion.

The funny thing is all the naysayers of supplemenation.. in the history of vitamins, how many have died from vitamins? 10 people? 20 people? Pharmaceuticals kill 100,000 people a year and how many of us are Humira junkies or take black label meds. Take some vitamins for a few months and see if you feel better. It won't kill you, but a lot of other things will. Just my opinion.


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## Crohn's 35

JohnnyO said:


> yeah because if you are vitamin deficient then you will be sicker and they can make more money treating you.
> 
> don't guess. have a medical doctor test you for vitamin deficiency and supplement accordingly.
> 
> if you eat a balanced diet (it's not as easy as it sounds) then you might be good but you would have to be a rare hyper vigilant individual who cookes most of their own food and makes amazing choices.


I never said I agree with the statement , just that I try to get what I can for nutritional purposes rather than a pill. I get my bloods done regularly and never had a deficiency,only the B12 because I have a foot of intestine out.  

Since I am getting picked on here, I think it is time for me to hibernate like the bears do... :yfrown:


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## Beach

With the mention of taking a multi-vitamin, that reminds me of a problem that can develop between vitamin A and vitamin D.  Activated vitamin A can override the helpful qualities of vitamin D.  So if taking a multi, best that the A in the multi vitamin be in the form of beta carotene.  If instead it is vitamin A retinol, best to avoid.  

I've seen a few articles on this issue - one from Dr. Cannell that might be helpful. 

"Proper vitamin D–vitamin A ratio"

http://www.vitamindcouncil.org/news-archive/2008/proper-vitamin-dvitamin-a-ratio/


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## kiny

Beach said:


> With the mention of taking a multi-vitamin, that reminds me of a problem that can develop between vitamin A and vitamin D.  Activated vitamin A can override the helpful qualities of vitamin D.  So if taking a multi, best that the A in the multi vitamin be in the form of beta carotene.  If instead it is vitamin A retinol, best to avoid.
> 
> I've seen a few articles on this issue - one from Dr. Cannell that might be helpful.
> 
> "Proper vitamin D–vitamin A ratio"
> 
> http://www.vitamindcouncil.org/news-archive/2008/proper-vitamin-dvitamin-a-ratio/


I take 25k UI  of vitamin D weekly irrc (haven't got the box with me) and avoid taking too many multivitamines, although it is an easy way to get zinc.

This reminds me, multivitamins / spullements sometimes have iron in them, iron, although most of us have a deficiency, it's important to note that many bacteria need iron to survive. But, this is important, common probiotics (which might help crohn's, only mucosa, a tiny bit) often have no use for them and are actually better off with lower iron levels. Iron levels increase during inflammation and active disease in crohn's patients (even if there is a general shortage of intake), but when you're in remission it's important not to overdo iron supplements either.


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## DustyKat

Thank you all so much for your responses. 

I will look into the available liquids and then discuss it with Matt. At the end of the day it will be his decision and whatever he is gong to be the most compliant with is the way we will go. 

@Dan - Is it possible that Ostelin is different where you are? I wouldn't have thought so but here it is a cholecalciferol 25mcg gel cap (equivalent to Vitamin D3 1000 IU) and is available over the counter. 

@David - Yes heading into Summer. Getting out into the sun the was the docs first suggestion and I will have him do that but I did explain to him about the Azathioprine so he suggested the tablets as an addition. 

Dusty.


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## Beach

kiny said:


> I take 25k UI  of vitamin D weekly irrc (haven't got the box with me) and avoid taking too many multivitamines, although it is an easy way to get zinc.
> 
> This reminds me, multivitamins / spullements sometimes have iron in them, iron, although most of us have a deficiency, it's important to note that many bacteria need iron to survive. But, this is important, common probiotics (which might help crohn's, only mucosa, a tiny bit) often have no use for them and are actually better off with lower iron levels. Iron levels increase during inflammation and active disease in crohn's patients (even if there is a general shortage of intake), but when you're in remission it's important not to overdo iron supplements either.


Interesting about iron, inflammation and probiotics.  I know little about iron.  This is years ago, but remember reading at one time that iron can cause constipation.  So I had to give supplementing with it a try!  Downed a few tablets for a few days and ....no relief.  Recall though that it did dry out my skin pretty well for some reason.


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## steelek5

My doctors have never spoken to me about my Vit. D levels... is it standard for them to check...?? Should I ask them to check this or would they check if there was a concern?


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## DustyKat

It is not a standard test so I would ask them to run it regardless of their concern. 

Dusty.


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## kiny

steelek5 said:


> My doctors have never spoken to me about my Vit. D levels... is it standard for them to check...??


Nope, normally white blood cells and protein are tested to see if they can detect inflammation, they check for anemia by red blood cells and they check water levels. If you have TNF blockers they will check for antibodies and before TNF they will check for TB. But vitamin D is, at least where I go, almost never checked.


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## D Bergy

The company site says Ostelin is cholecalciferol, so they should know what is in their own product.  

It was misidentified on another site, or possibly their is another formulation over here.  I know doctors often prescribe D-2 over here for some reason, even though we can buy high dose D-3 over the counter pretty cheap.  At least for now we can.

You should be good, but the dosage is pretty small.  I hope the doctor tests the levels again, after some use.

Dan


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## DustyKat

His levels are being tested again after one month's use. 

Dusty.


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## JohnnyRottenAppleseed

Ask. Most doctors are educated overpriced idiots. Chances are you are deficient unless you have a nice sun tan. More Americans are deficient than not.


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## donaldburroughs

*vitamin usage*

Hi to all

I am using Vitamin D Jamieson (Chewable) 1,000 IU 25mcg (Chocolate Flavoured!). I am also taking Vitamin C (chewable) 500 mg Kirkland Signature (Costco house brand). I do not take a multi-vitamin anymore since I had heart surgery to replace a bicuspid aortic valve with a mechanical AVR (Aortic valve replacement) 2011. Prior to that event I was taking a multi vit. and I had emergency bowel surgeries in 2009 within two weeks of one another so I don't think a multivit really gives any benefit. After my second surgery and long (8 weeks) but successful recovery I started supplementing with the larger individual dosage of Vit D primarily because of the touted cancer fighting properties and thought it might help me with my Crohn's. Since that second bowel surgery I have been in total remission! I can eat pretty much anything without an event ,but am now also more conscious of diet since my most recent open heart surgery. I am paying more attention to salt, saturated, and trans fats. I am also making a more concerted effort to avoid process/ prepared foods, both for my heart and my bowels. So far these efforts are paying off. I am also back into an exercise regimen doing brisk walks, stationary bike, and rowing. I can't help but brag that I feeling both physically and mentally better. In my cardio re-hab classes we heard and spoke about maintaining a positive attitude, reducing stress, and viewing exercise as medicine. Sound familiar? These mantras are also good for us with Crohn's. We don't need to run a marathon or some other type of hereculean effort. Just do what we are able to within our means. You know there should be re-hab programs for people like us who live with Crohn's. I feel I am very fortunate to have had a successful outcome for both my bowel and heart setbacks. Vitamin D (and C) are a big part of my daily regimen as is my three day a week exercise program. Fortunately, I can now also eat more healthy for body, and its components, the heart and bowels. Peace, and hopefully my story will give courage to all the brothers and sisters who live with Crohn's.

Don


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## Beach

That is wonderful to read about the success you are having with the gut these days after supplementing with vitamin D.      

Thought to mention that vitamin D3 can help with aortic valve disease also.  A cardiologist I follow has written a few times about patients supplementing with vitamin D that have halted and in a few cases reserved aortic conditions.  One of Dr. Davis's articles:    

"Another case of aortic valve disease reduced with vitamin D"

http://www.trackyourplaque.com/blog...tic-valve-disease-reduced-with-vitamin-d.html


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## stupidbody!

I don't think my GI's checked for this. I think I should take vit D again though cause I don't get out much esp in winter. I didn't know deficiency could cause depression. I had a deficiency in my last semester of college and didn't think I could make it through I was so tired and spacey. Thanks for the info.


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## Beach

Yeah, during winter vitamin D3 levels can decrease, which then some believe is involved with causing the winter blues.  Additionally, a video I caught this evening about vitamin D and depression.      

"Vitamin D and Mental Health"

http://video.foxnews.com/v/1258778800001/vitamin-d-and-mental-health/


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## crankypants

See also this link from Canada's Globe and Mail: http://bit.ly/tGCKmN

This does kind of make sense to me... I've always wondered why Canada has one of the highest rates of Crohn's in the world, and we do have some of the longest winters around.  Tanning = full body Vitamin D injections - heheh... Might help explain why i get fewer flareups in the summer, as I'm a bit of a beach bum and spend a good chunk of my time suntanning on wreck beach... Next summer I'll have to give it a go for science!


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## kiny

crankypants said:


> See also this link from Canada's Globe and Mail: http://bit.ly/tGCKmN
> 
> This does kind of make sense to me... I've always wondered why Canada has one of the highest rates of Crohn's in the world, and we do have some of the longest winters around.  Tanning = full body Vitamin D injections - heheh... Might help explain why i get fewer flareups in the summer, as I'm a bit of a beach bum and spend a good chunk of my time suntanning on wreck beach... Next summer I'll have to give it a go for science!


crohn's is actually high in scandinavia too, quite cold up there since last time I went there I almost froze off my nose

there has been no explanation for the increased rates of crohn's in scandinavia compared to the rest of Europe, but vitamin D deficiency might do just that


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## bushydougie

Thanks for this post. I've just got some d3 spray with 3000 iu.


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## jack_t_barrowman

I was very interested to see this thread as I got my blood test results checked over last week and was told that they were all fine... apart from the vitamin D. I was told that Cod Liver Oil tablets may help which I have been taking.  Having never encountered this situation before, I'm giving it a shot.


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## Kacey

Hmmmm, interesting!  I live in Northern Ontario, could always use more sun!  
Just started Vitamin D with Calcium.  Not sure if's the right one or not, but I'm gonna try!


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## David

After doing some research on the relationship between vitamin A and vitamin D I came across a fascinating website by the Vitamin D Council.  I emailed the doctor there and got the following response:



> I suspect Crohn’s disease will be helped with vitamin D and even cured in some (?many) cases, if the dose is adequate.
> 
> Vitamin A needs to be stopped.  Accutane is a vitamin A derivative.
> 
> 25(OH)D levels need to be 70-80 ng/ml, which requires 5,000 – 10,000 IU/day of vitamin D3, to treat Crohn’s disease.
> 
> Vitamin D needs cofactors to work properly. If I had Crohn’s, I would definitely pay the extra cost and buy a vitamin D with the expensive K2, and mg, zn and boron. These are the cofactors vitamin D needs to work. For example, the vitamin D receptor is like a glove. At the base of the fingers of the glove is a zinc molecule. Most Americans are zinc deficient. The same is true for boron, magnesium and probably K2.
> 
> I recommend the new D-Plus from Bio-Tech Pharmacal. Make sure it is the new formula, not the old one. The dose is three pills per day for 5,000 IU, this is important as most people take only one or two and so are still vitamin D deficient. Take with largest meal of day.
> 
> Also, ulcerative colitis will also be helped by ADEQUATE doses of vitamin D.
> 
> You have my permission to post this email.
> 
> John J Cannell, MD
> Executive Director
> Vitamin D Council
> 1241 Johnson Ave., #134
> San Luis Obispo, CA 93401


I thought some of you might be interested in it.


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## JohnnyRottenAppleseed

Thanks for the new info about vit d. I've been supplementing for a few months and feel much better. Heavy Depression gone! In remission and quit half my meds. I tested 33 vit d level. My doc said that was low normal but I began takin 4,000-8,000 iu a day.


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## mnsun

The whole Vitamin A angle is interesting.  I don't particulary take A in vitamin form (perhaps synthetic betacarotene is the culprit?), but have been drinking 100% carrot juice for quite some time.   Will definitely have to research the affects of Vit. A and all its forms.  

I have taken Vit D off and on for a few years, but I just purchased some 5,000iu vitamin D (cholecalciferol from lanolin) last week.  It has 360 capsules and costed about $10--Healthy Origins.  I also bought a different K2 supplement. I think I'll continue with these for awhile.


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## D Bergy

My vitamin D test from last week was 35.  I have been taking 10,000 iu for about three weeks, as I could not take any while I had the Mycoplasma infection.  It would increase my pain considerably.

My nurse practitioner agreed with me that a range between 50 to 100 was the tarrget I should shoot for.  She also said I should continue at my current dosage.  She is the first health professional I have seen that has agreed with my own targets.  Although the experts on vitamin D have similar veiws.  Your average doctor thinks 40 is good enough for anyone.

I have a ways to go, but I plan on getting this tested more regularly in the future.  It really is a virtually no risk method of possibly improving symptoms of the disease.

Dan


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## Gav

I've taken a supplement of Vitamin D (Vitamin D3) with Calcium for the last year and within a couple of days of taking it I noticed a leap in my energy levels. Also aches and pains that I thought were a case of poor absorption of nutrients (due to me losing my colon) simply dissapeared. A coincidence perhaps? Either way I am still taking them! I wish I could have seen what effect they might have had on me before they have me my stoma, but you have to deal with the hand you are dealt. I am very thankful I take these each day.


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## Mountaingem

My doctor called yesterday and said my Vitamin D level was 32. He recommended 5,000 IU  twice a day. I have been very exhausted but thought it was because I had recently had a flare; plus lots of aches and pains that don't seem related to enteropathic arthritis.

I'm going out to pick some up; we'll see how it works. I'm hoping for Gav's results!


----------



## JohnnyRottenAppleseed

Wow nice doc! I was 33 and my doc said it was ok. Thanks to google I know better and have been supplementing for months


----------



## scl

Prior to my Crohn's diagnosis, my biggest concern was bone health.  I had suffered two wrist fractures (not at the same time) along with two rib fractures from a single incident.  I live in Hawai'i and get plenty of daily sun exposure.

My first vitamin D test (which I had to request) was 20.  Started on supplements and managed to increase it to somewhere around 38.  

It looks like I need to be more aggressive and start taking higher doses.  Does anyone take a once-a-month megadose?


----------



## JohnnyRottenAppleseed

i tested at 33 and started taking 8,000 iu per day of Carlson D3 drops. the D3 drops are a better form than the megadose D2


----------



## hangingon

my dr had me on 10,000iud of D a week for about 6 months. i didn't really notice any difference


----------



## ksjacksonjr

I have also had vit D problems. I had a bone density test done and they found out I was borderline for osteoperosis. They checked my vit D and it was a 6. I am currently taking 100,000 units a week. After a month at that dose it rose to a 19. So I have to keep taking it till it gets to normal. The good thing is my bones hurt less. Vit D deficiency is painful I discovered.


----------



## JohnnyRottenAppleseed

hangingon said:


> my dr had me on 10,000iud of D a week for about 6 months. i didn't really notice any difference


that's how much you should be taking each day, or a little less depending on your levels.


----------



## Gav

I don't generally need such a high amount as that. My supplement combined with calcium is only about 80IU per tablet and I have two a day. The other supplements I have are 400IU, they really helped to start with but now if I take them I find myself peeing a lot more often!


----------



## kiny

I saw those figures people are taking and had to say something.

Don't start swallowing Vit D like crazy plz, anything above 10.000 UI per day can cause liver damage, especially when you're taking other stuff or multivitamins on top of that. Stay below that 10.000 UI figure. You really don't want any liver issues on top of your crohns.


"Vitamin D intakes greater than 2,000 IU per day have generally not been recommended, and this is probably a conservative upper limit for safety."

http://www.hsph.harvard.edu/nutritionsource/questions/vitamin-d-and-chronic-disease/

Sometimes doctors recommend vitamin D cures, that do go up to 10.000UI or even over. But those are *temporary *, if you take 10.000 UI daily for extended periods you are going to get into serious issues with your liver down the line. 2.000 is recommended max, maybe a bit more for Crohn's, but just be careful.

*Also, just to make sure people know, overdosis vitamin D CAN KILL YOU, over a certain amount of daily UI it becomes toxic.* So be careful.


----------



## David

kiny said:


> I saw those figures people are taking and had to say something.
> 
> Don't start swallowing Vit D like crazy plz, anything above 10.000 UI per day can cause liver damage, especially when you're taking other stuff or multivitamins on top of that. Stay below that 10.000 UI figure. You really don't want any liver issues on top of your crohns.
> 
> 
> "Vitamin D intakes greater than 2,000 IU per day have generally not been recommended, and this is probably a conservative upper limit for safety."
> 
> http://www.hsph.harvard.edu/nutritionsource/questions/vitamin-d-and-chronic-disease/


Can you please provide a source to the liver damage assertion?  Thanks 

From the same link you posted above:



> Vitamin D intakes greater than 2,000 IU per day have generally not been recommended, and this is probably a conservative upper limit for safety. *In fact, recent evidence suggests that doses up to 10,000 IU a day do not cause toxicity*—but this does not mean that people should start taking 10,000 IU of vitamin D every day.


And more from that specific article you linked to:


> As always, it is important to discuss use of supplements with your personal health care provider. I suggest not taking more than 2,000 IU per day of vitamin D in supplement form without specific medical reasons until more definitive data are available concerning the benefits and risks. If you fall into one of the groups that are at a higher risk of vitamin D deficiency, ask your doctor to order a blood test for vitamin D, since your doctor may find that you need a larger daily supplement dose, on the order of 3,000-4,000 IU, to achieve adequate blood levels.


The people here who test low have specific medical reasons.


----------



## kiny

David said:


> Can you please provide a source to the liver damage assertion?  Thanks


http://news.bbc.co.uk/2/hi/4563336.stm

*"However taking more than 2,000 IU – 50 micrograms – a day could lead to the body absorbing too much calcium and possibly damaging the liver and kidneys, claimed Professor Garland."*

When you say "toxicity" you are talking about someone dying from overdose btw, liver damage is below toxicity still. So taking the toxicity limit of something doesn't mean there is no liver damage. It just means you won't die from toxicity.


----------



## David

Thanks for the link 


kiny said:


> When you say "toxicity" you are talking about someone dying from overdose btw, liver damage is below toxicity still. So taking the toxicity limit of something doesn't mean there is no liver damage. It just means you won't die from toxicity.


I was quoting the link you provided regarding the toxicity, not using my own terminology or definition.  But please provide a link to back up your assertion that something can cause liver damage but not be toxic.


----------



## kiny

Maybe you should read the articles first instead of asking me things taht are explained in there, David.

Those people who are allowed to take 10.000 UI a day, are people who have calcium issues, and they give them specific vitamin D supplements to help calcium absorption.

2.000 is currently the FDA top limit, not their recommended those, it's their limit.


----------



## kiny

Also, note that those people taking upwards to 10.000 UI with calcium defficiency are usually on temporary regiments.

My mom is on a vitamin D regimen for calcium defficiency, and they give her capsules of 1.500 daily.

Crohn's patients might benefit from 2.000 or even a bit more, but 10.000 a day is really really high, I have never seen anyone recommend so much, ever.


----------



## David

kiny said:


> Maybe you should read the articles first instead of asking me things taht are explained in there, David.


I'm asking you where it is stated that you can have liver damage from a compound and it is "below toxicity still".  If it's stated in one of those links, please share that as I didn't read it.


			
				kiny said:
			
		

> When you say "toxicity" you are talking about someone dying from overdose btw, liver damage is below toxicity still. So taking the toxicity limit of something doesn't mean there is no liver damage. It just means you won't die from toxicity.


----------



## David

kiny said:


> Crohn's patients might benefit from 2.000 or even a bit more, but 10.000 a day is really really high, I have never seen anyone recommend so much, ever.


5,000-10,000 is what Dr. John J. Cannell of the Vitamin D Council recommends for people with Crohn's Disease.  Is he correct?  I don't know and as always, any treatment regimen should be discussed with and monitored by a doctor.  My guess is for some people, it's fine and their liver enzymes will never so much as blink whereas for others, it might be too high.


> I suspect Crohn’s disease will be helped with vitamin D and even cured in some (?many) cases, if the dose is adequate.
> 
> Vitamin A needs to be stopped.  Accutane is a vitamin A derivative.
> 
> 25(OH)D levels need to be 70-80 ng/ml, which requires 5,000 – 10,000 IU/day of vitamin D3, to treat Crohn’s disease.
> 
> Vitamin D needs cofactors to work properly. If I had Crohn’s, I would definitely pay the extra cost and buy a vitamin D with the expensive K2, and mg, zn and boron. These are the cofactors vitamin D needs to work. For example, the vitamin D receptor is like a glove. At the base of the fingers of the glove is a zinc molecule. Most Americans are zinc deficient. The same is true for boron, magnesium and probably K2.
> 
> I recommend the new D-Plus from Bio-Tech Pharmacal. Make sure it is the new formula, not the old one. The dose is three pills per day for 5,000 IU, this is important as most people take only one or two and so are still vitamin D deficient. Take with largest meal of day.
> 
> Also, ulcerative colitis will also be helped by ADEQUATE doses of vitamin D.
> 
> You have my permission to post this email.
> 
> John J Cannell, MD
> Executive Director
> Vitamin D Council
> 1241 Johnson Ave., #134
> San Luis Obispo, CA 93401


----------



## kiny

David said:


> I'm asking you where it is stated that you can have liver damage from a compound and it is "below toxicity still".  If it's stated in one of those links, please share that as I didn't read it.


http://lmgtfy.com/?q=hepatic+toxicity


I also would ask another doctor about what your doctor said in that email.

*He recommends 3 times 5.000 UI daily, that is 15.000 UI, that is over 7 TIMES the maximum FDA limit.*


----------



## David

kiny said:


> http://lmgtfy.com/?q=hepatic+toxicity


I'm familiar with Hepatotoxicity.  Where on the page does it state that something can cause liver damage but not be toxic?  Or are we just miscommunicating or am I misunderstanding?

I'm not saying you're wrong about any of this, I'm saying to please back up your assertions and educate us.  I like what you share and appreciate your contributions, but due to the nature of it, it needs to be questioned and sourced.



kiny said:


> I also would ask another doctor about what your doctor said in that email.


Agreed.


----------



## Beach

One of the problems with putting an upper limit dose on vitamin D, 4000 is the recent highest recommended dose by the IOM, is that everyone is different in their testing requirement.  Some people can get by with 4000ius, some even less, but there are factors that may make for higher needs.  Crohn's suffers, with a poor ability to absorb nutrients, would be one group that could find a possible greater need when supplementing compared to the general public.     

Vitamin D is misnamed as it is a pro-hormone, and with that it is best to test to find out ones individual needs are.  I personally take 6000ius a day in order to reach a testing level between 60 to 70ng/ml.  I'm going to be testing myself again soon though to re-evaluate needs as I have been making an effort to get out into the noon day sun to generate some natural D3.  Hopfully I'll need to take less of the vitamin.  I'm older though, and with older skin I'm less able to generate D3 as a younger person is able to.  Personally, from what I've read, I feel it is better to obtain D3 naturally than with supplements when possible due to the other substances created in the skin besides just D3.    

As for toxicity with D3 supplements, I've seen several different sightings on what testing levels can cause health problems.  One article by the author of The Vitamin D Cure had this to say.      

"Vitamin D: Deficiency vs optimum level"

http://www.trackyourplaque.com/blog/2010/12/vitamin-d-deficiency-vs-optimum-level.html



> Dr. James Dowd of the Vitamin D Cure posted his insightful comments regarding the Institute of Medicine’s inane evaluation of vitamin D.
> 
> Dr. Dowd hits a bullseye with this remark:
> 
> The IOM is focusing on deficiency when it should be focusing on optimal health values for vitamin D. The scientific community continues to argue about the lower limit of normal when we now have definitive pathologic data showing that an optimal vitamin D level is at or above 30 ng/mL. Moreover, if no credible toxicity has been reported for vitamin D levels below 200 ng/mL, why are we obsessing over whether our vitamin D level should be 20 ng/mL or 30 ng/mL?
> 
> Yes, indeed. Have no doubts: Vitamin D deficiency is among the greatest public health problems of our age; correction of vitamin D (using the human form of vitamin D, i.e., D3 or cholecalciferol, not the invertebrate or plant form, D2 or ergocalciferol) is among the most powerful health solutions.
> 
> I have seen everything from relief from winter “blues,” to reversal of arthritis, to stopping the progression of aortic valve disease, to partial reversal of dementia by achieving 25-hydroxy vitamin D levels of 50 ng/ml or greater. (I aim for 60-70 ng/ml.)
> 
> The IOM’s definition of vitamin D adequacy rests on what level of 25-hydroxy vitamin D reverses hyperparathyroidism (high PTH levels) and rickets. Surely there is more to health than that.
> 
> Dr. Dowd and vocal vitamin D advocate, Dr. John Cannell, continue to champion the vitamin D cause that, like many health issues, conradicts the “wisdom” of official organizations like the IOM.


----------



## JohnnyRottenAppleseed

kiny said:


> http://lmgtfy.com/?q=hepatic+toxicity
> 
> 
> I also would ask another doctor about what your doctor said in that email.
> 
> *He recommends 3 times 5.000 UI daily, that is 15.000 UI, that is over 7 TIMES the maximum FDA limit.*


RDA's are recommended minimums. Even the FDA's upper limit is questionable. What is the RDA for Vitamin C? People routinely take many times the upper limit of Vit C. The FDA is OWNED by the pharmaceutical companies. You want to trust an Organization that routinely rubber stamps inneffective dangerous drugs and then pulls them when people start dying or they realize the insanely expensive drugs do nothing?


----------



## DustyKat

*Update*

Okay, so Matt has been on Ostelin 2,000ui daily for over a month now and his recent blood results show his Vit D level is lower now (51) than it was originally was (53).

He is compliant with his meds so we can rule that out. He could certainly do with exposing himself to more sun, maybe 10 minutes in the midday sun with his shirt off. I don't think that would be too risky with the Azathioprine. 

I would have to assume that the dosage is too low and perhaps I was unrealistic in thinking that it would at least halt the decline. (((shrug)))

The GP will be discussing the results with him on Friday.

Any thoughts or ideas would be very much appreciated. 

Thanks, 
Dusty. xxx


----------



## David

Sorry to hear his levels declined Dusty   Maybe what doctor Cannell (who has been all over the radio lately here in the states) said might be pertinent to Matt?


> Vitamin D needs cofactors to work properly. If I had Crohn’s, I would definitely pay the extra cost and buy a vitamin D with the expensive K2, and mg, zn and boron. These are the cofactors vitamin D needs to work. For example, the vitamin D receptor is like a glove. At the base of the fingers of the glove is a zinc molecule. Most Americans are zinc deficient. The same is true for boron, magnesium and probably K2.


Could he be low in some of those cofactors so his uptake is poor?


----------



## DustyKat

I guess he could be. I don't know about his zinc, vit K or boron levels, maybe they should be my add ons next time but I haven't seen a blood test for boron in the general, run of the mill list. I had his magnesium tested in this latest round and it is solidly in the normal reference range. 

I have always been wary of the fat soluble vitamins, A, D, E & K,  potential to be deficient since Sarah had her surgery 5 years ago. 

Thanks David, certainly food for thought. 

Dusty.


----------



## Crohn's 35

Hey Dusty, a good way to keep some of the nutrients in his body is getting good quality digestive enzymes, they help absorb his nutrients as well as break down his food.  As you say some minimal sunlight is good but wear sunglasses.


----------



## Beach

DustyKat said:


> Okay, so Matt has been on Ostelin 2,000ui daily for over a month now and his recent blood results show his Vit D level is lower now (51) than it was originally was (53).
> 
> He is compliant with his meds so we can rule that out. He could certainly do with exposing himself to more sun, maybe 10 minutes in the midday sun with his shirt off. I don't think that would be too risky with the Azathioprine.
> 
> I would have to assume that the dosage is too low and perhaps I was unrealistic in thinking that it would at least halt the decline. (((shrug)))
> 
> The GP will be discussing the results with him on Friday.
> 
> Any thoughts or ideas would be very much appreciated.
> 
> Thanks,
> Dusty. xxx


I'm not familiar with Ostelin vitamin D, but thought to mention that taking vitamin D can be tricky.  From what I've read many, even health gut people, will find that their vitamin D product is not absorbed.  Tablets in particular typically pass right through, not raising vitamin D levels.  So Matt did good.  He tested and found out his vitamin D product is not working at raising his testing level.  Best to try something new.  

This article can be of help.  It is about the experiences of a cardiologist on what vitamin D products worked and what did not for his patients when it came to supplementing with vitamin D3.   

"Getting vitamin D right"

http://www.trackyourplaque.com/blog/2010/01/getting-vitamin-d-right.html


----------



## David

That's a great article Beach, thank you for sharing it!  Dusty, give it a read as it looks like Ostelin is tablet form which the doctor recommends against.


----------



## Carrie630

I take 5000 IU of vitamin D a day.  I'm severely deficient without it.   I don't feel as hellish as I did when it was low so it's probably doing something good.


----------



## JohnnyRottenAppleseed

Me too I've been taking it for 3 months and noticed much more energy and I don't get depressed as easily or at all like I used to.  8,000 iu a day d3 drops.


----------



## Carrie630

Johnny, I used to use D3 drops, but couldn't find them last time so I switched to gel caps. I much prefer the drops!


----------



## DustyKat

Thanks guys. 

The brand "Ostelin" that is sold here comes in gel caps.

Sort of off topic but I wonder how that affects many people on here that take Calcium with Vit D. Since the Vit D is used to assist with the calcium uptake is it working as well as it should as I think the Vit D is in tablet form in most of these preparations. Hmmmm. 

So he went to the GP yesterday and he told him to add another cap and to get more sun. I'm glad we don't pay to go to the docs here......I see his GP in passing at work so I think I will tell him to read up on Ileal Crohn's and Vit D deficiency. :ybiggrin: 

Dusty. xxx


----------



## mickey

yes, take Vit D in addition to multi-vitamin.  Take a few 1000mg per day.  If not feeling well, up to 10 pills for 3 days and drop back down to 2 or 3/day.  Did you know this is a natural antibiotic?  perhaps that is why it helps us?  If pregnant women are sick and can not take meds, or nursing, they suggest 10,000 per day for 3-5 days.  Interesting stuff!


----------



## David

mickey said:


> Did you know this is a natural antibiotic?


I didn't so went googling and found this.  Interesting


----------



## mikeyarmo

I was supplementing with 1,000 IU of D3 during the winter the past 2 winters, but a couple weeks ago moved to 2,000 IU (2 tablets) each morning with breakfast. It seems like there is a big arguement for taking even more. During the summer I try to get a good 20 minutes or more in the sun each day but I usually try to supplement if I am not getting sun that day.

A blogger I follow has been posting quite a bit about Vitamin D3 including:

A review of different trials showing that even relatively low doses of vitamin D3 reduced overall mortality

Anecdotal evidence on how Vitamin D3 usage can lead to better sleep. When Vitamin D3 was taken in the morning by one person, she found that she slept well the next day. When Vitamin D3 was taken later in the day, she had trouble sleeping.


----------



## ctrl z

My last D tests showed I was a little deficient so I started taking 4,000 IU of D3 every morning. I was recently retested but I haven't gotten my results back yet. It's been a while. I'll call on Monday to find out.


----------



## JohnnyRottenAppleseed

What's crazy is my mom, fiancé , and several friends all tested low and are all supplementing. Must be true what they say about 80% Americans being deficient!


----------



## Emily

I don't know anything about  vitamin D at all, so I thought I'd ask. How much should I take? The shorter days are really getting me down. I'm not sure if I'm low, my GI usually takes like 500 vials of blood and checks everything, and hasn't notified me of a deficiency. Would it be overkill to take the maximum 5,000 IU? I'm the type that always wants to take maximum strength anything if it's available :ycool: What do ya guys think?


----------



## David

Emily said:


> I don't know anything about  vitamin D at all, so I thought I'd ask. How much should I take? The shorter days are really getting me down. I'm not sure if I'm low, my GI usually takes like 500 vials of blood and checks everything, and hasn't notified me of a deficiency. Would it be overkill to take the maximum 5,000 IU? I'm the type that always wants to take maximum strength anything if it's available.


Ask your doctor if you've been tested.  If so, let us know what your levels are.  If you haven't been tested, get tested.  That way you have a starting point to evaluate if the supplementation (should you start) you're taking is working for you or if you need to switch to a different form or dosage.  Good sources are stating get tested every 6 months to monitor your levels.


----------



## Emily

David said:


> As your doctor if you've been tested.  If so, let us know what your levels are.  If you haven't been tested, get tested.  That way you have a starting point to evaluate if the supplementation (should you start) you're taking is working for you or if you need to switch to a different form or dosage.  Good sources are stating get tested every 6 months to monitor your levels.


That's a good idea. I'm seeing him in a few weeks anyway, I will add that to my list of things to talk to him about. I'm curious to know if I am deficient because I'm sure it must have something to do with my fatigue, and biweekly B12 doesn't seem to make a dent in that. I'll let you all know. Thanks David!


----------



## kristyn

My Vit. D level keeps dropping below the normal range anytime I take less than 5000 IU per day.  My former primary care NP- Lisa Dimond FNP published an article about how most people than live in the northern regions of the US just don't absorb enough Vit D and should be taking lower dose supplements.  However people with immunosuppressive disorders often need much higher doses.


----------



## JohnnyRottenAppleseed

Emily, I grew up in Cleveland, same climate as you, and I used to get super depressed every winter. When summers came I always soaked up as much sun as I could. After high school I moved to sunnier parts and never got as bad fatigue and depression but still would get it. Now that I've been taking it for 3 months I have no fatigue and no  depression. I tested at 33 blood level in July and am retesting today. I've been taking 8,000 iu a day of Carlson D3 drops.


----------



## JohnnyRottenAppleseed

Saw my doc today and she was not concerned by my 8,000 iu a day. She told me it can be a problem with people taking 25,000 iu a day. Doctor from UCLA- very reputable. I am still going to get tested in January just to satisfy my curiosity.


----------



## Mountaingem

I've been taking 6,000 iu for two weeks and noticed a huge improvement especially in the joint pain and stiffness. I'm  not overly concerned about holding on to too much calcium because Crohn's causes my kidneys to leach calcium; I take hydrochlorothiazide for an off-label usage-to make my kidneys retain the calcium. I found this out during surgery prep; I also can't retain potassium.


----------



## JohnnyRottenAppleseed

Hmmmmnn. If u want to absorb more calcium then supplement with magnesium. Bananas and coconut milk are great sources of potassium.

Glad the vit d3 is helping! I can't wait to hear from you after 2 months! Imagine! I was surprised how much it's helping but it can take a few months to notice results as they are gradual.


----------



## David

Mountaingem said:


> I've been taking 6,000 iu for two weeks and noticed a huge improvement especially in the joint pain and stiffness.


That's fantastic!  I'm so happy for you


----------



## StarGirrrrl

My Rheumy just checked my level again, would be interested to see what the level is like. Last time was slightly low, but not low enough to worry about, we don't get much sun here in the UK!


----------



## Carrie630

Emily, I've been supplementing with 5000UI daily for over a year, and my vit D level is 60 which is normal, but not quite up to what the vitamin d counsel is now recommending.  its within doctors expected levels though.

eta: My rheumatologist had me prescribed at 10000UI a day for 4 months before going onto 5000UI permanently.  The FDA's levels are ridiculously low, IMO.  My various doctors all agree.  My (healthy) wife was put on 2500UI daily and her level is not low.


----------



## DougUte

My Neuro prescribed 50,000 I.U. 3XWeek when I was first determined to be Vit D deficient. (Yes, that is 5 followed by 4 zeros.) I now take 2000 I.U. to maintain my levels.  I have always been deficient.


----------



## JohnnyRottenAppleseed

Vit D is poorly absorbed Without magnesium. Probably can't get levels to normal without it


----------



## Lisa

I was just prescribed a vitamin D that is a once a week pill.....because my levels were 'very low' according to the doctor from my last blood work. I did get new bloods drawn yesterday and it will be interesting to see what the levels are (I will share when I get them).....and I can also post what the prescription is after I pick it up (hopefully tomorrow)....

Off to take some pills now that I think of it!


----------



## David

JohnnyO said:


> Vit D is poorly absorbed Without magnesium. Probably can't get levels to normal without it


Can you please point me to a reputable source that explains why this is?  I wasn't aware of the relation.  Thank you!


pasobuff said:


> I was just prescribed a vitamin D that is a once a week pill.....because my levels were 'very low' according to the doctor from my last blood work. I did get new bloods drawn yesterday and it will be interesting to see what the levels are (I will share when I get them).....and I can also post what the prescription is after I pick it up (hopefully tomorrow)....


Please do!  

For the record, the Vitamin D Council doesn't recommend anyone supplement vitamin D with PRESCRIPTION medication as that means it is a SYNTHETIC version of vitamin D (that the company could patent) and will not be near as good as the natural vitamin D3.  I can find that article if you like.


----------



## DougUte

JohnnyO said:


> Vit D is poorly absorbed Without magnesium. Probably can't get levels to normal without it


No, Magnesium levels have been good most of the time.


----------



## Gav

Mountaingem said:


> I've been taking 6,000 iu for two weeks and noticed a huge improvement especially in the joint pain and stiffness. I'm  not overly concerned about holding on to too much calcium because Crohn's causes my kidneys to leach calcium; I take hydrochlorothiazide for an off-label usage-to make my kidneys retain the calcium. I found this out during surgery prep; I also can't retain potassium.



Wow, that's excellent Mountaingem! What a great response! Long may it continue 

Incidentally my Vit D levels have been up over the last three months according to my last visit to my haematologist, who I had been seeing for a low white blood count. And rather excellently there has been a correlated rise between my White Blood Count Level (now entirely normal) and the Vit D level. He said this may just be a coincidence but stay on the Vit D and Calcium supplements.

I am not on high levels like most on here, I'm on 80IU twice a day, and I have been taking it for some time before the levels went up, but whatever I am doing overall I'm delighted to finally have a "normal" WBC. If the same in 6 months he's going to discharge me from his clinic (fingers crossed).


----------



## Baileyuk

Hi, Have been reading this with interest. Can anyone reccomend a supplement to take and where to buy from in the uk?
Many Thanks


----------



## Nosick

Speaking of vitimin D, a dear friend sent me a link to this very interesting article at WebMD.  Within the article is the following:

_Vitamin D Supplements and Crohn's Disease
Brian Bosworth, MD, of Weill Cornell Medical Center in New York City, reported results on the first 20 people in an ongoing study looking at the effects of vitamin D supplementation on Crohn's disease. All had vitamin D deficiency, defined as blood levels less than 30 nanograms per milliliter (ng/ml) of blood.

They took either 1,000 International Units (IU) or 10,000 IU of vitamin D3 daily.

After six months, average vitamin D blood levels were about 74 mg/ml in the high-dose group, compared with 32 ng/ml in lower-dose group. Levels above 30 are considered normal.

Scores on a standard test that measured the severity of symptoms fell from 7 points to 4 points in the high-dose group. There was no change in disease activity in the lower-dose group; their scores hovered around 6 points. Scores above 7 indicate severe symptoms, according to Bosworth.

The high doses didn't cause any side effects._

http://www.webmd.com/ibd-crohns-dis...southerners-may-be-less-likely-to-have-crohns


----------



## JohnnyRottenAppleseed

I think the Mercola site mentions magnesium as a cofactors of vitd


----------



## JohnnyRottenAppleseed

David said:


> Can you please point me to a reputable source that explains why this is?  I wasn't aware of the relation.  Thank you!
> 
> Please do!
> 
> For the record, the Vitamin D Council doesn't recommend anyone supplement vitamin D with PRESCRIPTION medication as that means it is a SYNTHETIC version of vitamin D (that the company could patent) and will not be near as good as the natural vitamin D3.  I can find that article if you like.


Dude it's on Vit D council website 

Magnesium has been found to influence the body’s utilization of vitamin D in the following ways: Magnesium activates cellular enzymatic activity. In fact, all the enzymes that metabolize vitamin D require it. 3 4 Low magnesium has been shown to alter, by way of decreasing, production of vitamin D’s active form, 1,25(OH)2D (calcitriol). 5


Magnesium is needed to exert positive influence over the human genome and may be involved in the genetic actions of vitamin D. Magnesium possibly has a role in vitamin D’s effect on the immune system. 6

Animal studies have shown magnesium is also necessary for vitamin D’s beneficial actions on bone. 

http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-cofactors/magnesium/


----------



## David

JohnnyO said:


> Magnesium has been found to influence the body’s utilization of vitamin D in the following ways


Awesome!  Thank you


----------



## Baileyuk

So any ideas for best places to get them from? Holland and Barret seem expensive and to be honest not exactly sure what I'm looking for!


----------



## JohnnyRottenAppleseed

I use natural call magnesium and Carlson d3 drops


----------



## Lisa

David said:


> Can you please point me to a reputable source that explains why this is?  I wasn't aware of the relation.  Thank you!
> 
> Please do!
> 
> For the record, the Vitamin D Council doesn't recommend anyone supplement vitamin D with PRESCRIPTION medication as that means it is a SYNTHETIC version of vitamin D (that the company could patent) and will not be near as good as the natural vitamin D3.  I can find that article if you like.


Ok - picked up my prescription - it is Vitamin D2 1.25mg (50,000 unit).....

Generic for Drisdol.....


----------



## David

pasobuff said:


> Ok - picked up my prescription - it is Vitamin D2 1.25mg (50,000 unit).....
> 
> Generic for Drisdol.....


I would personally suggest getting some natural D3.



> Vitamin D3 (cholecalciferol) is the type of vitamin D the body naturally produces in the skin in response to sun exposure. Vitamin D2 is produced naturally when fungi (yeast or mushrooms) are exposed to ultraviolet light from the sun or to artificial UV light.
> 
> Scientific studies have demonstrated the bioequivalence of vitamin D2 and D3 in forming 25(OH)D when daily consumption of either precursor occurs over a minimum of 6 weeks 10. There is other evidence that the body has preference to D3 over D2, showing in these studies that the body more readily uses D3 when it has both forms in the body, and that D3 is more potent than D2 for producing 25(OH)D 11.
> 
> Although both D2 and D3 are effective for raising blood levels of 25(OH)D, the Vitamin D Council believes that vitamin D3, as produced in human skin, is the more natural precursor, and recommends supplementing with vitamin D3. Vitamin D3 supplements are not vegetarian and are not likely to be derived from American products. If an individual has ethical concerns over D3, D2 can be an effective replacement.


Source.



> Although many doctors are still prescribing vitamin D2, vitamin D3 is the preferred form for treating deficiency and is what is recommended by the majority of the experts as well as the Vitamin D Council.





> There are also prescription forms of vitamin D, such as synthetic calcitriol and vitamin D analogs. Vitamin D analogs are synthetic compounds based upon variations of the naturally-occurring vitamin D metabolites.
> 
> High dose calcitriol use has been known to increase risk of hypercalcemia. Vitamin D analogs are seen as a way to achieve the beneficial effects of calcitriol without this risk.
> 
> *Pharmaceutical vitamin D should never be used to treat vitamin D deficiency*.


Source.


----------



## JohnnyRottenAppleseed

D2 won't work . 8,000 iu a day d3 drops. A year supply is like $30


----------



## Igor_Passau

*Climate Tied to Inflammatory Bowel Disease Risk
Study: Crohn's Disease, Ulcerative Colitis Less Likely in Women Living in Sunnier Regions*

Jan. 11, 2012 -- Living in a sunny climate appears to reduce women’s risk of developing inflammatory bowel disease, a large new study shows.

An estimated 1.4 million people in the U.S. live with an inflammatory bowel disease, either Crohn’s disease or ulcerative colitis.

Both cause persistent diarrhea, abdominal pain and cramping, fever, and sometimes rectal bleeding. Symptoms can become very severe and sometimes require surgery.

Yet little is known about the causes of these diseases, which are thought to involve a dysfunction of the immune system.

For the new study, researchers combed through data on more than 238,000 women taking part in the long-running Nurses’ Health Study, which began in 1976.

The study collected information on where the women were living at birth, age 15, and age 30. It also recorded any diagnosis of an inflammatory bowel disease up to 2003.

Researchers also followed up with women who reported having inflammatory bowel disease and verified their diagnoses through medical records.

They found that women who lived in Southern regions that got a lot of sunlight had a 52% lower risk of being diagnosed with Crohn’s disease by age 30 and a 38% lower risk of getting ulcerative colitis than those who lived in Northern regions.

That result held up even when researchers tried to rule out other things that might increase a person’s risk for an inflammatory bowel disease, like having a family history.

“The differences are pretty drastic. That’s what surprised us the most. Especially when it comes to Crohn’s disease. We’re seeing a 40% to 50% reduction in risk,” says researcher Hamed Khalili, MD, a gastroenterologist at Massachusetts General Hospital in Boston.

The study is published in the journal Gut.


http://www.webmd.com/ibd-crohns-dis...nflammatory-bowel-disease-risk?src=RSS_PUBLIC


----------



## Lisa

Well - have my D2 sitting here to take (I paid for i, so might as well take it!)...have D3 at home....AND am heading to (hopefully) sunny Florida in 2 days!!!.....

Still haven't gotten my lab results from my bloodwork - maybe I'll call and ask if they can be faxed to me....


----------



## JohnnyRottenAppleseed

What a jerk. The Dr. Commends the authors of the study then states there is no evidence supplementing with vitvd will help because miners have lower rates of inflammation? WTF? More like he doesn't want to lose business by people being healthy. The earth is flat until we have enough scientific studies that say its round. SMH.


----------



## slydvl

Interesting read and thread! Thank you


----------



## bushydougie

Baileyuk- this is what I have been using:
http://www.betteryou.uk.com/vitamin-d-cid20.html
You can get it slightly cheaper via amazon and it's delivered pretty speedily!


----------



## Lisa

I got some paperwork from my Drs' office yesterday - and it shows my Vitamin D level back in Sept was 19.2.......waiting for the danged release form to be sent to me so I can get my current results!


----------



## Ducey99

After reading this thread, I asked my GI to check my Vit D levels. Apparently, where i'm from, Dr.'s aren't allowed to test for Vit D (except under special circumstances or something) because the assumption is that everyone is deficient. Kind of depressing that our weather is that bad...  He said to go ahead and take it but didn't give me any guidance at all. I'm guessing the 1000 IU tabs from the supermarket aren't going to cut it..


----------



## ctrl z

I just recently had more blood work done. I was under the impression that my D levels would be checked. Nope! 

I thought it was a mistake so I asked the nurse to double-check with my GI because I feel that knowing my D status is important. Apparently insurance companies are not paying for it anymore unless there is a "good enough reason".

I thought that proper D levels were important for Crohn's sufferers moreso than the general population. Seems like a good enough reason to me.

My GI office told me to try to get it done at a GP. They said that maybe someone in the GP's office would know how to code it in a way that would get it covered. Sounds like BS to me.


----------



## Mayflower537

My GP does a lot of bloodwork at my yearly physical and D is included.  My insurance covers that and I have a high deductible plan.


----------



## David

My guess is because everyone under the moon is getting it done.  Vitamin D Deficiency is the new fad.  It's all over the radio and internet.  Now, this is a good thing as so many are deficient but it's no doubt costing insurance companies millions.  Of course, proper supplementation would no doubt save them millions if not billions over the long haul, but we must think about this and next quarter's income, right?  </sarcasm>

A diagnosis of Crohn's Disease should be more than enough reason for them to approve the test especially considering how much money it can save the insurance companies if a Crohnie properly supplements if deficient.  Somebody, somewhere got promoted to their level of incompetence and is making terrible decisions that affect many.  Grrrrrrrr.


----------



## ctrl z

Yeah. My D was checked last year but not this year. 

If I can't get it ordered properly from a GP then maybe I'll get lucky and be able to get covered for it net year


----------



## ctrl z

So, I finally have my D numbers.

A year ago, my D level was at 25, which is insufficient. I started taking 6,000 IU of D3 daily with my breakfast.

My D is now up to 50!

Yay


----------



## DustyKat

Sweet! :thumleft:

Dusty. xxx


----------



## David

That's great!  Good for you   Have you been able to correlate the increased vitamin D levels with any changes, positive or otherwise?


----------



## ctrl z

Thanks! 

Well, I had some other blood work a couple months ago that showed that I did not have any inflammation so, I suppose that's a positive change that could definitely be related


----------



## meteoman

Keep in mind that checking magnesium blood levels is not adequate for determining if you are magnesium deficient. 

Just a little anecdote about myself.  I first found out by my vitamin D deficiency about 3 years ago when I was having back problems.  An X-ray of my back was carried out to which the doctor noted that the spacings between my vertebrae were quite large.  He said this was indicative of vitamin D deficiency.  Well, fast forward to three weeks ago...I finally had my vitamin D level checked...17.  So, I am currently on 2000 IU per day.  I have noticed that I do have more energy and I feel more elated than normal.  By the same token, I have also noticed more anxiety, an increase in blood pressure and an increased frequency of esophageal spasm.  Magnesium deficiency causes muscle spasms.  Increasing vitamin D also increases your need for magnesium - thus making an existing deficiency in magnesium more advanced or a borderline deficiency more definitive.  So, long story short, I am taking 400 mg of a magnesium.  

Magnesium with an amino acid attached is much better absorbed into the body.  In other words go for magnesium lactate, magnesium citrate, or magnesium aspartate.  Avoid magnesium oxide...it has been shown to be virtually ineffective.

http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-cofactors/magnesium/


----------



## Entchen

I increased my Vit D supplementation in February as levels were low. I proceeded to spend the next 2.5 months throwing up. Figured, eh, it's the Crohn's. It was the Vitamin D. So now I am drinking lots of milk and going out in the sun...


----------



## David

Entchen, did you try a different brand?  What kind were you taking specifically?


----------



## Entchen

Hi David: Tried 2 different brands, both liquid per Dr instructions. I'd been taking a lower dose of Vit D in a gummy form for about a year prior so I will return to that once I have a "rest" from the supplements.


----------



## David

That's really odd Entchen.  I wonder if you're one of the rare folks where vitamin D leads to hypercalcemia.  Other than some sort of allergy to an ingredient in the two brands, that's all I can think of.

http://www.ncbi.nlm.nih.gov/pubmed/15696436


----------



## Entchen

Hrm, I sure hope not, David! Appreciate the heads-up about that condition to be sure. :yfaint:

I'm booked for bloodwork soon to double-check current D levels, etc. My mom is quite sensitive to supplements (cannot even handle a multivitamin or calcium supplements) and although I can take many things without issue, perhaps I am simply sensitive to too much Vit D.


----------



## Mayflower537

Mine was just checked and was 71.6 ng/mL which my doctor said was "awesome."  I had been taking 4000 iu through the winter, but I think i'll cut back to 2000 now.  

Note:  I do not have confirmed IBD.


----------



## DustyKat

Matt received his latest blood results yesterday and his PO4 was only slightly elevated at 1.47 with a reference range of 0.80-1.40.

Anyway he now goes to a new lab and their Vit D reference range is...50 - 200 sufficient... and Matt's level is 85.  

Now with a quick whizz around the net it would seem that too much Vit D can cause an increase in PO4 and I certainly wouldn't think that 2,000 iu's a day is excessive. Of course there are other causes with diet being the another possible one in Matt's case but I don't see him consuming excessive amounts of the foods likely to cause a problem. Looking at his old results his previous lab didn't report PO4 levels. 

So just curious if Vit D supplementation is the cause, anyone else notice an increase in PO4? 

Dusty. xxx


----------



## David

Hi Dusty,

Did they test his calcium, PTH levels, and do any kidney function tests as well?

The 50-200 reference range for the vitamin D, I'm not familiar with that.  What unit are they measuring it in so I can do a conversion.


----------



## DustyKat

Hey David, 

He has not had any thyroid testing done. UEC's and LFT's are done routinely, his Calcium is normal at 2.45 mmol/l (RR 2.13-2.63) and his Urate is just above normal at 0.43 (RR 0.18-0.42). All other renal functions tests are well within normal limits. I assume his slightly increased Urate is due to his TI resection and the resulting issue with the reabsorption of Uric Acid back out of the blood and into the bowel. 

The assay for Vitamin D has only recently changed in Australia. This is quoted directly from the report...



> Serum 25(OH) Vitamin D - 85 mmol/l
> 
> Suggested decision limits for Vitamin D status:
> 
> Sufficiency 51 - 200 mmol/l
> Mild deficiency 25 - 50 mmol/l
> Marked deficiency <25 mmol/l
> Toxicity >250 mmol/l
> 
> References: Vitamin D and health in adults in Australia and New Zealand:
> https://www.mja.com.au/sites/default/files/issues/196_11_180612/now10301_print_fm.pdf
> 
> The Diasorin Liason chemiluminescent assay has replaced the Siemens Advia Centaur for vitamin D. Please note variations compared with earlier patient assessment may occur.


Dusty.


----------



## David

Hey Dusty,

Are you sure that's mmol/l and not nmol/l?



> Studies indicate that for proper health, serum vitamin D levels should be a minimum of 50 ng/mL (125 nmol/L), with optimal levels falling between 50-80 ng/mL (125-200 nmol/L). These values apply to both children and adults.


Source


When it comes to nutrients, I absolutely love the Linus Pauling Institute at Oregon State.  They have a good writeup on Phosphate here that you might want to read if you haven't already.

:Karl:


----------



## DustyKat

Yikes! Yes nmol/l! That will teach me to post when my brain isn't engaged. Hell I even saw that it was nmol/l in the referenced article and it still didn't click! Won't be long now! :lol: 

Thanks for the link.  

Dusty. xxx


----------



## David

Based upon his vitamin D levels Dusty, I think Matt needs a lot more than 2000iu of vitamin D per day   I understand your concern about PO4 but from what I have read, the increases due to vitamin D are usually at huge levels and that might not even be what's causing it.

Maybe, have him consider a vitamin D that has cofactors included as well which are:

    Magnesium
    Vitamin K
    Vitamin A
    Zinc
    Boron

I love this product  though I don't know if you can get it down there.


----------



## CLynn

David, I had been taking my vitamin D3 for 90 days now, and finally got my GP to do a blood work up last week. Just got the results today. The way they list it is a bit confusing to me, but think I am doing right supplementing, when I look at the results....

Vitamin D 25-OH Level *55 (25-80-)
Vitamin D, 25-OH, D2 <5
Vitamin D, 25-OH, D3 55


----------



## David

If I am reading it correctly and your result is 55 on the 25-80 reference range (which would be in ng/mL) then yes, you're doing great!


----------



## D Bergy

I am glad supplementation is working for many here at the forum.  It seems to do nothing for myself.  

I have never heard of someone being unable to process oral vitamin D3, but even 10,000 iu a day has no effect on my blood level.  

Sunlight does boost it up luckily, so I should be good for the Summer.

I am going to try using it with Coconut Oil this coming Winter.  Maybe that will help if it is an absorption problem?

Dan


----------



## David

Dan,

10,000iu should definitely change your level.  If not, then all I can think of is it's an absorption problem (coconut oil or a different brand might help) or you're severely deficient in one/multiple of the cofactors I listed above.


----------



## deb123

Hi,
I have just been told by GP that i am deficient in vit d.  I cant understand how that can be.  I start the day with fortified cereal with milk, eat oily fish twice a week, eat yoghurts daily avoid eggs like the plague, and recently have had 3 months of UV light treatment for Psoriasis.

Surely that would be enough?


----------



## David

The UV light treatment.  Do you know if it was UVA or UVB rays?  If it was UVA, it wouldn't do anything for your vitamin D levels.  Or maybe you were VERY low before and that started to bring you up.

The other stuff wouldn't provide near enough vitamin D.

Do you know what your specific level tested at?

Did they recommend a specific supplement/dose for you?


----------



## Supreme_2

My Gynocologist put me on a weekly prescription Vitamin D, 25,000 Iu.  One pill once a week.


----------



## deb123

I belive it was UVB light that i was exposed to.  Im not 100% sure i will check it out on Monday.
I have put in the perscription for vitamin d capsules at the pharmacy, but he has told me they dont keep in stock and will have to order it in.  I will collect them on Tuesday.
What is the recommended dose for someone in my situation? 
 Ive just been diagnosed with fistulas and have to meet with Gastro team this week to discuss which of the new biologic drugs they are going to use, or if im gonna get setons put in place first.


----------



## David

The dose would be somewhat dependent upon your actual vitamin D level.  For example, we sometimes see people with crazy low levels like 4-10.  I think for situations like that, something like 5000iu per day and a 50,000iu once per week would be good to get the levels up fast.  For many, 5000iu is going to be a pretty good number.  But there are many variables at play and you want to get tested somewhat regularly to make sure you're responding to the dosage and to fine tune how much you need.  You don't want more than you need and of course don't want less than you need.  In addition, there are vitamin D cofactors which I'm happy to elaborate on if you're interested.


----------



## deb123

Thankyou David, if you could elaborate on the co factors for me that would be helpful.
I want to make sure that i give my body every chance of healing, i know that sometimes there are useful tips to help my body absorb the essential vitamins and minerals that doctors dont usually tell you about.
Im really aprehensive of taking these new biologic drugs, i havent been on any medication for 7 years apart from Colestyramine.  Maybe thats why im in the situation im in now?


----------



## David

Vitamin D cofactors are:

Magnesium
Vitamin K
Vitamin A
Zinc
Boron

The most important of all those is magnesium which Crohnies are commonly deficient in.  Diarrhea and fistulae increase the chances of magnesium deficiency as well.  This is part of the reason I like this supplement, because it includes all of them minus the A which I'm not a fan of for Crohnies.

Is a lack of medication the reason you're in the position you're in now?  Possibly, but you may have ended up in the situation you're in now regardless.  Who knows.  Either way, don't beat yourself up over it if you are, instead focus on getting well now


----------



## DCWeeza

I was dx with Crohns end of June. I don't well as of last time i had bloodwork. I wasnt deficient in vitamin D. However i am now wondering if my 7 year old daughter may have Crohns. She will run a fever about once a month for a about a week. We've done bloodwork and everytime she is severely deficient in vitamin D . Doctor has her taking a multi vitiamn and on top of that 2000 ui of vitamin D. So now i feel like i need to get her tested for Crohns.


----------



## David

Vitamin D deficiency is rampant in the general population as well, it doesn't mean Crohn's.  If she has other symptoms, then yes, I'd get her tested.  But D deficiency alone isn't cause for alarm other than you want to rectify it.  I theorize that vitamin D plays a partial role in the pathogenesis of Crohn's Disease.  Someone may have the genotype for Crohn's Disease so maintaining optimal health, in part by having high levels of vitamin D may delay or avoid expression of those genes.  Just a theory of course 

If possible, get her out in the sun a little each day without sunblock and not completely covered in clothing.  It's much better


----------



## JohnnyRottenAppleseed

Deb123. Have you tried antibiotics? They help some people that are flaring.


----------



## deb123

Hi Jonny O,

This flare has been complicated, not like my past flares, as i have had a remission for 7 years since the removal of my terminal illeum.
It has been months since i started feeling unwell, and i had a short course of antibiotics when the hospital A&E suspected Lymes disease.
The antibiotics made me feel better within 2 days!  But it was short lived i started to feel ill again as soon as i stopped.
From what i have read i may need to take some sort of antibiotic before i start on the biologics.


----------



## JohnnyRottenAppleseed

Cipro flagyl pit me in remission. My friend was told to go on biologics and was also put in remission with antibiotics. His blood levels are all normal as well as bowel movements.


----------



## deb123

Gosh, thanks for the information.  I have to see the Gastro team this week, so i will ask about trying the antibiotics first and holding off the biologics.
Thanks for all your help, it gives me more confidence in making a decision that will benefit me more, and not just take the run of the mill medication drill.


----------



## Dixiedoll23

I have been fighting with my GP for months asking him to put me on 50,000 units weekly.When they tested it in January it was 21 and now in July it is only 22 and thats taking 10,000 units daily!After  I told him 50,000 units twice a week is the only thing that has brought my levels up in the past, he agreed to put me on that dosage for 6 months.I can't wait to get it in my system, I feel so much better when I'm not so deficient!


----------



## David

Dixiedoll,

I'm surprised 10,000iu didn't raise your levels.  Were they capsules with oil or more of a plain tablet?

I'm glad your GP finally put you on the 50,000iu if that's what helps you


----------



## D Bergy

I am guessing that the GP gave a prescription for D-2 not D-3.  As far as I know there is no prescription form of D-3.

I copied a post from another forum, as it pertains to what is referred to as "Vitamin D Resistance".

To sum it up, absorption or conversion problems can be caused by several factors.  Magnesium deficiency, poor fat absorption, or not taking it with fats. 

I doubt I am Mg deficient since I have taken a Mg supplement before and it had no effect on my D levels.  I also presently get 500mg from a whole food multivitamin. I also take vitamin K2 since I was on Prednisone for a longer time, and do not want my bones to become brittle.

Poor fat absorption is likely in my case.  

Here is the post I ripped off.

Dan

Quote:
(NaturalNews) As more people begin to realize the amazing health benefits that Vitamin D has to offer, more people are naturally beginning to get more vitamin D, either through supplements or sunshine. The downside of this increased intake, however, is that more people are having adverse reactions from Vitamin D. What most people are not aware of, though, is that most of these so-called 'Vitamin D Side Effects' are not problems with taking the vitamin itself, but are actually problems with not getting enough magnesium.

Vitamin D, just like all other nutrients, works in harmony with several other nutrients to perform its many functions. Most importantly, vitamin D requires and 'uses up' magnesium to convert from supplements or sun into its active form in the blood.

As such, it is a big mistake to simply take large doses of Vitamin D without taking the need for magnesium into consideration. Yet this is exactly what is happening in most cases and it is causing a lot of people to have problems that they believe are due to side effects of Vitamin D- or even worse they believe they are experiencing an overdose. Such a huge number of people have subtle magnesium deficiency that some researchers and doctors are calling magnesium deficiency an epidemic, and anyone with even a mild or 'subclinical' magnesium deficiency will have this deficiency amplified when Vitamin D is taken. This is creating some uncomfortable 'Side Effects of Vitamin D' that are actually symptoms of an induced magnesium deficiency! Some of the magnesium deficiency symptoms being attributed to Vitamin D are:

Headaches
Insomnia
Jitteriness
Muscle Cramps
Anxiety
Heart Palpitations
Constipation

While there are always going to be those who simply can't tolerate taking Vitamin D supplements for one reason or another, the good news is that the vast majority of these problems can be prevented and even reversed by getting clinically significant amounts of magnesium - while you are getting your Vitamin D from pills or from the sun.

Vitamin D Absorption Problems

Conversely, it's also true that taking Vitamin D may not raise blood levels in those who are magnesium deficient. In many cases, both the Vitamin D deficient person and their doctor believe that they are having 'absorption' problems. This lack of knowledge about the need for magnesium ends up causing serious issues such as:

1) A lot of fear being generated that an underlying serious medical problem exists
2)Unnecessarily high dosages of Vitamin D that further worsen the magnesium deficiency
3)Thousands, and sometimes tens of thousands of dollars, being spent on unnecessary medical testing to find the 'absorption' problem
4)The underlying magnesium deficiency not being found because testing for magnesium levels is not useful in determining need for the nutrient

This leaves many people still low in Vitamin D and believing that they are toxic or allergic to Vitamin D. This belief is being encouraged by practitioners and websites that are unaware of this intimate connection between these two nutrients and who don't have a solution for those who are suffering. Unlike drugs, nutrients are interconnected with one another and rarely does someone have only One nutrient deficiency completely in isolation. But as Vitamin D testing is becoming more common, people are being treated with large and sometimes massive doses of Vitamin D without taking into consideration their need for other nutrients. In particular, the need for sufficient magnesium is critical to avoid some of the uncomfortable problems that are often falsely attributed to being Vitamin D side effects or overdoses.

Resources

http://www.springerlink.com/content/n92g57j9k00ul822/
http://www.easy-immune-health.com/vitamin-d-absorption.html
http://www.ajcn.org/cgi/reprint/29/8/854.pdf


----------



## JohnnyRottenAppleseed

deb123 said:


> Gosh, thanks for the information.  I have to see the Gastro team this week, so i will ask about trying the antibiotics first and holding off the biologics.
> Thanks for all your help, it gives me more confidence in making a decision that will benefit me more, and not just take the run of the mill medication drill.


My friend was about to get on the humira train but took antibiotics for two weeks and is totally normal. Same for me. I think it's worth a try but you need to take them for at least ten days and cipro and flagyl not just one or the other. My friend took Xifaxan for two weeks and then another antibiotic for back pimples and he is totally normal, no flare, blood work normal. It's seriously crazy how fast it worked for me. I went from bleeding out my ass ten times a day to normal in 3 days.


----------



## deb123

Ive written lots down so i shall be prepared to bombarge them with questions when i finally get seen.
Thanks so much


----------



## SherryLynn

about a year and a half ago my dr checked and found that I was low in B12 and D. Been taking abt 2000 icu each since. My energy levels were majorly increased but it didnt stop the crohns, was diagnosed with it May 28 2012. Levels were low to med when I went to the hospital but in range.


----------



## David

Sherry, I wouldn't expect it to stop the Crohn's Disease, but it can definitely help along with other treatments.  However, I suggest getting tested for both again (and getting the actual numbers) to make sure that your dosage is putting you in the optimal range for each.


----------



## nogutsnoglory

JohnnyO said:


> Cipro flagyl pit me in remission. My friend was told to go on biologics and was also put in remission with antibiotics. His blood levels are all normal as well as bowel movements.


How much cipro and flagyl were you on and for how long?

I just started taking 250mg of cipro since entocort isn't working. The GI put me on a low dose because cipro can affect joints when on entocort.


----------



## JohnnyRottenAppleseed

nogutsnoglory said:


> How much cipro and flagyl were you on and for how long?
> 
> I just started taking 250mg of cipro since entocort isn't working. The GI put me on a low dose because cipro can affect joints when on entocort.


500mg cipro and 500mg flagyl x2 per day x 10 days. Low dose won't cut it. I have noticed some tendon sensations but nothing bad and my crohns symptoms are gone.


----------



## Dixiedoll23

David said:


> Dixiedoll,
> 
> I'm surprised 10,000iu didn't raise your levels.  Were they capsules with oil or more of a plain tablet?
> 
> I'm glad your GP finally put you on the 50,000iu if that's what helps you


More of a plain tablet.However the 50,000 units I got yesterday are more of an oil capsule.


----------



## Dixiedoll23

David said:


> Vitamin D deficiency is rampant in the general population as well, it doesn't mean Crohn's.  If she has other symptoms, then yes, I'd get her tested.  But D deficiency alone isn't cause for alarm other than you want to rectify it.  I theorize that vitamin D plays a partial role in the pathogenesis of Crohn's Disease.  Someone may have the genotype for Crohn's Disease so maintaining optimal health, in part by having high levels of vitamin D may delay or avoid expression of those genes.  Just a theory of course
> 
> If possible, get her out in the sun a little each day without sunblock and not completely covered in clothing.  It's much better


I've heard Vitamin D deficiency is more common in the upper Midwest regions.


----------



## David

Dixiedoll23 said:


> More of a plain tablet.However the 50,000 units I got yesterday are more of an oil capsule.


That may be the problem.  As vitamin D is a fat soluble vitamin, those tablets that don't include any sort of fat are poorly absorbed unless taken with some sort of fat.


----------



## deb123

I followed a link by David regarding the Vitamin D supplement, and i dont think you can buy it in the UK.  I collected my perscription from the Pharmacy today, and it 5000 of D3, but it doesnt have any of the essential co factors.  Does anyone know of a suitable D3 supplement i can buy in the UK ? The pharmacist said that you could  buy the magnesium and zinc separately, but Vitamin K is perscription only.


----------



## mwstrick

I've found I react to most D supplements except the liquid droplet kind. I self-administer up to 10,000 IU when I feel like I need it - more often in the winter time. 50,000 IU at one time seems excessive and could potentially set a person up for a allergic reaction in a sensitive individual.


----------



## Dixiedoll23

David said:


> That may be the problem.  As vitamin D is a fat soluble vitamin, those tablets that don't include any sort of fat are poorly absorbed unless taken with some sort of fat.



Good to know, I will need these in the near future as well.


----------



## JimmyT

Have any with ibd here experienced taking a sublingual as opposed to tablets or drops make a difference? Personally I use Dlux sublingual spray as the sublingual route( glands underneath the tongue ) allow the Vit D to go straight into blood stream and by pass the intestinal route. I guess this would help many of us who have ibd or malabsorption issues. I used to take the drops in olive oil and  caused more cramps.


----------



## gconner

I have been a long time patient with crohn's 37 yrs.  I was tested for vit. d deficiency only a couple of yrs. ago.   Can you believe my level was "zero".   I began taking super vit. d.   I am having as flare now as I had a bad cold, then shock for atrial fibrillation.  The crohn's had nary a chance.   They told me to stop all vits. for now as I am on blood thinners.   I just don't know if I should take a multi and my D or not.


----------



## JimmyT

Here in the UK if you are severely deficient you are given an injection of 300 000iu of inactive ergocalciferol and then advised to take supplements


----------



## JimmyT

www.red23.co.uk have Vitamin D drops of 2000iu per drop and the drops are in extra virgin olive oil for those in UK

http://www.red23.co.uk/Vitamin-D3-Drops-4000IU-15ml_p_1268.html

Hope this is useful.


----------



## Clash

I just recently had my son's vitamin D levels tested and the nurse just called today with the results. She said that even though his results were in the normal range the GI doesn't like to see them that low. His level was 32 and the GI reccomended he started taking a supplement. In the blur of the phone conversation I didn't think to ask certain questions like(these may seem silly but I honestly have no idea) should these be D2 or 
D3, is there a certain form that is more well absorbed(son's CD is in TI but no symptoms since starting Remicade) or a certain brand that anyone reccomends over another. The GI wants him to take 2000 units a day. I'm going to wiki for info on the site, thanks for any advice!


----------



## Mark in Seattle

David said:


> Vitamin D cofactors are:
> 
> Magnesium
> Vitamin K
> Vitamin A
> Zinc
> Boron
> 
> The most important of all those is magnesium which Crohnies are commonly deficient in.  Diarrhea and fistulae increase the chances of magnesium deficiency as well.  This is part of the reason I like this supplement, because it includes all of them minus the A which I'm not a fan of for Crohnies.
> 
> Is a lack of medication the reason you're in the position you're in now?  Possibly, but you may have ended up in the situation you're in now regardless.  Who knows.  Either way, don't beat yourself up over it if you are, instead focus on getting well now


David, do you think this product by itself would be adequate, or do you think additional magnesium would be suggested?  I note that this product only includes 50% rda for magnesium.  I've read about magnesium supplements, stating that malate & glycinate are good forms, but when I check the sites like Amazon and even the Biotechpharmacal site, there are many products that are "chelated with amino acids", and I wonder if that is even better, or not necessarily so?


----------



## David

Mark, I think it would depend on each person.  If someone is deficient in magnesium then no, it probably wouldn't be enough.  If their magnesium levels are already good, then it should be fine.  It comes down to testing.  

As for the chelating with amino acids, I don't know anything about that, sorry


----------



## gconner

Hi Clash, 

My vit D was zero and my gastroenterologist put me on a prescription Vitamin D2 - 50,000 IU a week.   I also take 6,000 IU   D3 a day.   I was still in the 30's range, then went down again.   I have not had it tested lately, but will shortly.   I do not know the diff. between D2 and D3, but as I said he gave me the megadose of D2.  Hope this helps.


----------



## Clash

Thanks gconner! What form is it in? Does it look like a tablet or like Vitamin E, you know with the liquid in it? Did he suggest you take it with anything, certain type of food and such?


----------



## gconner

Hi Clash, it is a small green pill like a vit. E pill, soft inside, easier to digest as you know.   I take mine before I go to bed, but I am thinking with food might be better.   gc


----------



## JimmyT

Clash,

32 is considered borderline- For every 1000units  you take your levels will be increased by 10.

I was at this level of 32 in March 2012 also but have been taking about 2000-3000 units, via a spray which has 1000iu each spray. Whatever Vitamin D supplement you purchase it is highly recommended to go for a D3 rather than D2 as it basically lasts longer, and this is now widely advocated.

Also, there are many types of supplements. But from personal experience, I have found that a sublingual spray was more effective at the same iu's daily than the liquid drops. I havent had the tablets though. I have Malabsoprtion issues however, so I can see the logic of why Vitamin D provided through the spray is better for my body.

Maybe have a search on a search engine for "sublingual vitamin d3 spray in [your area/country/city]". 

Good luck!


----------



## JimmyT

Sorry I would like to re-clarify 30nmol/L is considered deficient in the UK (Nothern Hemisphere Country) and therefore 32 would be borderline


----------



## Clash

Thanks so much, the GI said it was borderline according to the reference numbers but that the GI didn't like to see it that low. I'll Google vitamin D3 forms and see what comes up! Thanks again


----------



## bangarang

gconner said:


> Hi Clash,
> 
> My vit D was zero and my gastroenterologist put me on a prescription Vitamin D2 - 50,000 IU a week.   I also take 6,000 IU   D3 a day.   I was still in the 30's range, then went down again.   I have not had it tested lately, but will shortly.   I do not know the diff. between D2 and D3, but as I said he gave me the megadose of D2.  Hope this helps.


D2 yikes! You should ask your doctor if he/she can prescribe D3, D2 is synthetic, D3 is natural.

You can read more why D3 is far superior than D2.
http://articles.mercola.com/sites/articles/archive/2012/02/23/oral-vitamin-d-mistake.aspx
"Research shows vitamin D3 is approximately 87 percent more potent in raising and maintaining vitamin D concentrations and produces 2- to 3-fold greater storage of vitamin D than does D2. D3 is also converted into its active form 500 percent faster."


----------



## David

I got my results back today for my vitamin D test.  83.1 ng/ml.

:banana:

This is strictly from sun exposure, zero vitamin D supplementation.  I work outside farming my backyard so get plenty of sun.  But what I do is if I know I'm going to be in the sun a lot or just get in from a lot of sun exposure, I take a vitamin K2/1 supplement and a magnesium supplement to ensure I have plenty of cofactors.  I figure that evolutionarily, we'd walk around in the sun hunting/gathering and come across food high in the co-factors during that time.  So I try to recreate that.


----------



## Clash

C spends a lot of days out in the sun but as he is on Remicade I've had him slathered/sprayed with Sun screen because I thought I read there was a heightened risk of non melanoma skin cancer with Remi and doesn't sun screen block vitamin D process/production?


----------



## CLynn

From what I read, yes, it does.


----------



## Clash

Ok so I am ordering the vitamin D supplement from biotech. It is the one mentioned by Dr. Cannell(sp?) and noticed that three capsules are 5000 iu and C was directed to take 2000 iu daily.  I looked at different forms but it is a bit overwhelming at all the choices and I want to make sure I get all the co factors for vitamin D...any suggestions? Wondering if C could could take 2 and get 3333 instead of 2000. At 15 he weighs 128 if weight is a factor in dose.


----------



## David

What was his vitamin D level last time he was tested?

*edit* Ah, I see his level is 32. 

I think two a day would be fine (and would prefer more than 2000iu) BUT I'd ask your doctor for sure.  Explain exactly what you want to put him on and detail the cofactors as well.


----------



## Clash

Thanks, David. We have an appt. in two weeks with ped gi. he approved the vitamin D levels test when I requested it and also wanted him on vitamin D when results came in but it was the local GP that did the blood draw so I asked him if he could run B12 and folate as well...GP didn't see a reason to because it wasn't a common issue in CD....whatever. I am going to request the other vitamin levels checked and bone age study at ped GI in two weeks he seems more open to what I request. I'll discuss vitamin D supplementation then... I've already printed all the studies and info from this site. Thanks so much for all of your hard work!


----------



## David

Your GP said folate and B12 wasn't a common issue with Crohn's Disease?  REALLY?

:facepalm:

We could cite countless articles but in the end, this poll says it all.  And that's mostly based upon serum B12 reference ranges that are terrible.  The actual deficiency numbers are very likely much higher.


----------



## Clash

Yes he also wasn't sure why C needed D checked since he lives in the south. I explained the sunscreen and vitamin d process being afeected and cd'ers being prone to deficiency due to malabsorbtion and he told me to be careful with medical googling! Ughhh aggravating!


----------



## Clash

But before you think I'm a complete idiot for using him, our Ped gi is 3 hours away as well as Ped so I use local GP for blood draws to cut down on travel.


----------



## DougUte

David said:


> Your GP said folate and B12 wasn't a common issue with Crohn's Disease?  REALLY?
> 
> :facepalm:


Wow, unbelievable. I wonder how some doctors stay in practice.


----------



## JohnnyRottenAppleseed

Clash said:


> Yes he also wasn't sure why C needed D checked since he lives in the south. I explained the sunscreen and vitamin d process being afeected and cd'ers being prone to deficiency due to malabsorbtion and he told me to be careful with medical googling! Ughhh aggravating!


I'd look for a new doctor. Good ones are hard to find. I thank my lucky stars I finally found a good primary care doctor that is open minded. It sounds like your doc is frozen in time and doesn't realize the world is in flux and new developments in treatment occur daily.

PS had vit d levels checked last week and awaiting results. 3 months ago I was at 42 after almost a year of d3 supplements and up from 31ng last summer. I've been getting a lot of CA sun last few months and can't wait for my results. I'll come back and post my progress.


----------



## JohnnyRottenAppleseed

Clash said:


> But before you think I'm a complete idiot for using him, our Ped gi is 3 hours away as well as Ped so I use local GP for blood draws to cut down on travel.


You aren't the idiot, your doctor is. He's stuck in a mental script where any patient that suggests something is playing doctor or self diagnosing on webMD. While this may be the case for some people, I think most of us are trying to figure out how to stay healthy. What's the difference of I read something online or ask my doctor about a drug I saw advertised on tv?


----------



## Clash

Yeah I know we call him the virus/cold doc because that is all he diagnoses. Lol He's a really nice guy he just mainly deals with colds and stuff. Like I said though, he just carries out the blood draws requested by the ped GI and Ped so we don't have to travel so no need to look else where for that. He usually has a more open mind though. He also is real quick to refer you to a specialist so that can work in the patients favor too I suppose.


----------



## bangarang

DougUte said:


> Wow, unbelievable. I wonder how some doctors stay in practice.


Can't blame them, they aren't taught much about nutrition in school. Seems like some docs need to stop going by what was in their books years and years ago and start reading up on the current literature. Some of them are so out of date and its just hurting the innocent people who believe anything they say.


----------



## 723crossroads

Dear David,
  I am fairly new to the forum. Does anyone here know about aloe vera juice? Organic, inner gel only? Has anyone used it with success. Because I did for 5 months and went off it and am now having trouble again. Any help on this subject would be appreciated. Teresa (723crossroads)


----------



## Jennifer

Clash said:


> But before you think I'm a complete idiot for using him, our Ped gi is 3 hours away as well as Ped so I use local GP for blood draws to cut down on travel.


You can contact your GI and have them fax lab orders to whatever lab you use. Shouldn't be any need for travel there. Plus your GI can call you with the results.


----------



## Clash

The lab that would be available to me in my town is at the hospital and there can be waiting times where as if the ped gi faxes the order to local GP then their in ofc phlebotomist does the draw and sends it to the hospital lab. Generally, I don't even see the GP, we just go straight to his office's phlebotomist room and she does it straight away but this time I saw him just to see if he would add the other vitamin tests to the order the peds GI faxed. I should've asked the GI when I called about vitamin d but didn't think too.


----------



## Clash

Oh and the GI does call with the results any times the GP's does the draw.

And please excuse all my typos...my fingers never hit the right keys consistently when viewing from my mobile!


----------



## David

Some more interesting information:


> In patients with IBD, the vitamin D axis provides an important and often underutilised pathway to preserving bone health. *Furthermore, an exciting body of clinical and basic science research demonstrates that these pathways may have an integral part to play in regulation of the immune response in IBD, through effects on the intestinal barrier, antigen presenting cells and adaptive T cells.* The possibility of chemoprevention requires further study. The optimal target level of 25-hydroxy vitamin D in patients with IBD is currently uncertain, as is the best therapeutic modality.


Source

As I've mentioned previously, I don't think a lack of vitamin D causes Crohn's disease.  However, I think it is a big and very important piece of the puzzle.  

Get those vitamin D levels tested if you haven't folks.  And don't go for the "low normal" 32-40 BS.  Get your vitamin D in OPTIMAL range to give your body the tools it needs to fight this disease.  At minimum, get it to 50 but 60, 70, even 80 is much better.


----------



## michaelearnest

I've got to ask the question - If, for example, the recommended daily dosage of Vitamin D lets say is 1000mg. Does it do ANY good to take 10,000 or 5,000? My doctor showed me a study conducted by Harvard that bottom line says when you go to the bathroom you end up peeing the extra out.
What do you all think about the extra amounts?


----------



## David

Hi Michael,

If you're extremely deficient in vitamin D, then 1000iu daily isn't going to get you into optimal ranges.  As such, 5000iu can definitely be beneficial.  You're not going to absorb it all and will pee some out, but your levels are going to increase more, and faster than if you're on 1000iu.  As usual, it's about getting tested though.  Blindly supplementing isn't a good idea.


----------



## Mark in Seattle

I got mine tested again recently with the same results at 20 compared to a year ago.  My supplmementing has obviously been subpar.  I read a study recently which showed that supplementing at 2k was insufficient to move the needle and should be more like 5k/day.  I just ordered the D3plus.  It's on sale on their web site right now if you order it on the web - or at least it was a couple days ago when I ordered it.  I'm going to use the D3 with my son as well, who tested at 18.


----------



## David

I'm glad you got tested Mark!  Please let us know what you test at next time after using the D3 Plus.


----------



## jac

Hello - I have been silently inspired by all on this forum for the month and would first like to extend a heartfelt THANK YOU for the pick up I have needed for a very long time!    
On topic, I was recently tested (maybe for the first time) for D level at my request to my Primary md.  The results came back a 7.  Have done small bit of research on what it should be and why...also taking into consideration that I have very little small bowel left after 1987 surgery and my lack of absorbtion, as well as on Calcitriol.. At an appointment yesterday with Endocronolgist, she pointed out to me that she considered me in balance by going by my parathyroid results from the recent blood test.  She stated that due to malabsorbing I would not have it stored in my system...I got the impression that I was asking too many questions when she began referring to many numbers (related to markers, I presume), the answers were going further and further over my head and her tone seemed annoyed.  My initial reason for asking for the D test was due to having Reclast for osteoporosis (one CD complication of mine) and having to supplement Calcium and D in order for it to work and I haven't noticed improvement physically or in the bone densities...I suppose I feel like it is already a fight to survive on the thin line I walk daily with what I have left to work with and the md visit shouldn't have to be part of that weakening struggle.

Diagnosed 1979 with UC; 
1983 oops, maybe it's CD 
double pneumothorax with failed CVP lines and 
3 month hosp. stay then resection (bye, bye colon)
1987 ileostomy; 
currently on Lomotil and Immodium
Calcium, Calcitriol, Multi vit, Digestive Enzymes w/Probiotics


----------



## David

Hi Jac, welcome to the community!

How much of your small bowel was removed, do you know?

With a level of 7, you need to be on some serious vitamin D supplementation.  Have they started that?  And have they tested your vitamin B12 levels since that's absorbed at the end of your small intestine (terminal ileum).

As for the bone density, have they tested your magnesium levels?  And I suggest you give this thread about vitamin K2 a read as well since it's important in telling all that calcium where to go.


----------



## jac

Thanks, David!  I believe 2.5-3 feet.  In my opinion, 0.5MCG of Calcitriol is not substantial, but it was started in 2008 prior to starting the Reclast.  I have been on B-12 injections (1 ML) bi-weekly for 5 years, was monthly prior to that.  I may have read the Vit K2 previously, but will again and appreciate your reply!


----------



## 723crossroads

David said:


> Some more interesting information:
> 
> Source
> 
> As I've mentioned previously, I don't think a lack of vitamin D causes Crohn's disease.  However, I think it is a big and very important piece of the puzzle.
> 
> Get those vitamin D levels tested if you haven't folks.  And don't go for the "low normal" 32-40 BS.  Get your vitamin D in OPTIMAL range to give your body the tools it needs to fight this disease.  At minimum, get it to 50 but 60, 70, even 80 is much better.


David,
  What do you know about aloe vera juice 100% organic, inner gel only? For treatment of inflamation of crohn's? Crossroads723


----------



## David

If your level is 7 ng/ml, then you're not getting anywhere enough vitamin D from the Calcitriol.  If your doctor thinks it's ok for you to have a level of 7 (I wasn't sure if that's what you were implying) then I'd suggest adding another doctor to your team that understands the importance of proper nutrient levels.

Magnesium is THE most important co-factor for vitamin D AND is incredibly important for bones.  If you haven't had your magnesium levels tested, I'd suggest doing that as well.


----------



## JohnnyRottenAppleseed

What's the test for magnesium? I think I need that. Thanks for all the Bit D info!


----------



## David

JohnnyO said:


> What's the test for magnesium? I think I need that. Thanks for all the Bit D info!


I just get the serum magnesium.   I do all my own vitamin and mineral testing


----------



## jac

Still learning to navigate:


> As for the bone density, have they tested your magnesium levels? And I suggest you give this thread about vitamin K2 a read as well since it's important in telling all that calcium where to go.


@David - That is quite extensive reading and I will delve into it more than the quick skim that I just did - thanks for all that info.  I think she wanted me to believe that the level was in balance "for me" given my issue of not absorbing everything through my sb and I should take her word that I am in balance - the annoyed part came as I asked more questions because I couldn't understand the idea that 7 was a good number, even for my low weight, sb, etc.  For the magnesium - I looked back on all the test results (last 2 years) and only a Basic Metabolic was done each time.  Would it be included in that?  Referring to her comment on the PTH level - it sounds like that is the way she checks  if I am in balance...I believe another md selection is a good idea and I thank you for your reply.  I have a lot of reading/understanding to do...You have been very helpful giving me a direction to begin:biggrin:


----------



## nogutsnoglory

David do you recommend a regular vit D test or a D3?


----------



## David

Magnesium isn't included in the metabolic panels I'm familiar with.

Her whole balance thing makes little sense to me but hey, I'm no doctor.


----------



## David

nogutsnoglory said:


> David do you recommend a regular vit D test or a D3?


I recommend 25-hydroxyvitamin D, or 25(OH)D.  NOT 1,25-dihydroxyvitamin D.


----------



## jac

Thanks for that -since it (Magnesium) doesn't seem to be included on the newest request separately, is not part of the Basic Metabolic Panel, and has not been requested under Other...I will be requesting it myself.  I see my primary next week and it was her I asked originally to do the Vit D test, since the Endo had not (found that so strange and after hearing her, disturbing).  Even with all my other issues, I can't be satisfied with a level of 7ng/ml or her balance explanation - I appreciate your shared opinion - I will research other bloodtests that would be beneficial in telling me how "in balance" overall I may or may not be.  Many thanks


----------



## h gower

Hi there 
Just to ask anyone if it is ok to taking vitamin D 1000IU, Centrum advance and Benefex fish oil 1000 mg once a day before I go to bed as I take them all together, I have suffered from gassy, bloated, crampy feelings about 3 times in May 12, and about 2 times just a bloated feeling and the 2nd time doctor gave me a boscopan injection, the injection gave me a 90 % relief and 2 gavascons helped me. the 1sttime I did not know what it was and suffered for about 4 hrous with the pain,it  went  and came back the next day, next time I was at home, when it happened and went to Hospital said IBS sent me home  next day as I still had the pain went to GP thats when she gave me the gavason and the buscopan injection, as I also had on and off stitches on my left side of stomach since 2010 did ultra sound which reported normal, but had one done again in 2012 because of everything it was a oral barium and CT scan siad had slight patch calcificaton, but MRI said conclusion normal and scan asre better at detecting calcification. I heard that magnesium is good on Dr Mark Sircus webpage about calcification and magnesium cheltate, but reading about magnesium cheltate, as it may help to dissolve calcification, however reading about magnesium cheltate it says that if you have certain stomach problems or kidney problems you should not take it, my daughter was diagnosed with hematuria in 2010, and so not sure if she can take the magnesium any thoughts or ideas
Thanks and God Bless you


----------



## prplkow

Yikes, so my level is 28 and the doc says 30 is normal and to take 1000 units a day. After reading this thread it looks like it should be around 60-80 and that means quite a bit of D3. I would like to take the biotech blend, but I am nervous to immediately start taing 5000 units (which is in one pill). I think I might get a small jar of D3 1000 units and build up. I don't know, I am just nervous like that.


----------



## JohnnyRottenAppleseed

Anyone take sublingual D3? My friend told me its better than the oil caps.


----------



## Mark in Seattle

prplkow, the d3 from biotech comes in 3 pills/5k so each pill is only 1.67k.  I take it.


----------



## Catherine

My vitamin d is 28, gp has me on 3 x 1000 units per day and retest in 3 months


----------



## prplkow

@Mark - Oh, I guess I misread the info on the Biotech. Great! I am definitely getting this now. Thanks for the info!

@Catherine - Thanks for the info from your doc. =)

@Johnnyo - Are you going to try the sublingual? I am going to look today when I am at the store to see what they have. I think I am going to stick with the biotech though, might only be able to buy it online though.

I am going to start with one and get to three in a few days. Just want to make sure my tummy can handle it.


----------



## SidS

I am a Vegetarian and I notice that some Vitamin D soft gels contain gelatin. I believe I need 5000 iu, can't find my blood work but will ask my doctor to send it to me and ask how much they recommend. But are there any good products for vegs?


----------



## David

SidS, you may want to look into the liquid vitamin D you take as a drop.


----------



## Mark in Seattle

Sid, I have a bottle of Garden of Life Vitamin Code Raw D3, which I purchased on Amazon.com.  It states that it is vegetarian.  I googled vegetarian D3 and saw some boards where folks were posting about vegan D3 and this one in particular, which uses lanolin, which I believe is a part of sheep skin.  I'm not a vegetarian so I didn't pay much attention, I just wanted to investigate whether this brand is any good.  The reason I bought it is because I was looking for a food-based D3.  The reason I wanted a food based D3 is because I've had side effects when taking the caplets and the single droplets.

So anyhow, these Garden of Life D3's are 2,000 IU per pill.  I can't tolerate a whole pill, as it will make me fall totally asleep and not feel too great, at least for a couple hours or so.

Now as for "sublingual", I may be mistaken, but my understanding is that there is no such thing as "sublingual" D3.  And my interpretation of "sublingual" is that it goes directly into your bloodstream from under your tongue.  I do take Carlson D-drops (D3).  As I've read about these, I've read that these drops can be added to a bowl of cereal or a cup of juice or whatever, so that has led me to believe that it's not really sublingual, it's just a concentrated drop that gets absorbed in your GI tract.  I know that they work because I've used them for a couple years and I feel the benefit of them.  I may not have used enough though to build up the D3 in my fat tissue over time.  Historically I've had side effects from taking D3 drops as well, though not as much lately.

The reason for my interest in whole food D3 is because I take Super Nutrition Simply One Men vitamins, once daily, which has 700 IU D3 in food based form, and it's the only D3 I've never felt any adverse side effects from.

The Biotech D3 by the way, I do feel side effects from as well, sleepiness and some headache.  I was taking 2 per day for a couple weeks and then had to lay off for a couple days.  Overall, I'm taking a mix of Biotech, Carlson D3 drops (1,000 IU), and my daily.  I probably won't do much with the Garden of Life product because it's a hassle to take the pill apart and dump out half of the stuff to get it down to a manageable 1,000 IU size.  And I will undoubtedly never take the caplets because the side effects have been so severe even at 400 IU.  

The good news though is that for the first time in 10 years, I can sleep on my down pillow.  About 10 years ago I developed allergy to all things down and could not come within 2 feet of a down pillow without my nose completely plugging up.  I recently reintroduced a down pillow on my bed, covered with many layers of sheets so I wouldn't breathe it in and get congested.  And now after doing this D3 regimen for about 3 weeks I can sleep directly on the pillow without the sheets.  I was allergy tested recently and my allergist says I'm not allergic to down, but to something unspecified in the down products.  So anyhow, it's proving helpful for my allergies but so far not for my CD.

Hope that helps a little.


----------



## SidS

David said:


> SidS, you may want to look into the liquid vitamin D you take as a drop.


Are there any you recommend? and how much IU should I be taking?


----------



## sid

I have been running and do cardio exercise daily under the morning sun to get my vit D ever since I realised how important it was for me. I think its working..will see the results only after I get the levels checked.


----------



## David

When you say morning sun Sid, what time?  And how long are you in the sun for?  And do you know what your longitude is?  And do you go shirtless?


----------



## sid

David said:


> When you say morning sun Sid, what time?  And how long are you in the sun for?  And do you know what your longitude is?  And do you go shirtless?


when I start exercising its already sunny and bright..and sometimes its quite hot....I start at 6 am in theh morning and it continues till 7 am or 7 15.

My city i.e kolkata's longitude is 88°22′10.92″E and its very sunny throughout the day and you can feel it...so even if am not willing,I end up being under the sun somehow.

I dont go shirtless but I have my full arms uncovered and also legs as I wear my running shorts.


----------



## David

I don't think you're getting enough sunlight to make a meaningful difference in your vitamin D levels but it'll be interesting to see what your test says   Hopefully I'm wrong!


----------



## sid

David said:


> I don't think you're getting enough sunlight to make a meaningful difference in your vitamin D levels but it'll be interesting to see what your test says   Hopefully I'm wrong!


what makes you think that david ?? is it because I dont go shirtless or the timing ?


----------



## David

Both combined is what causes my concern.


----------



## sid

David said:


> Both combined is what causes my concern.



There was this study that said that according to Indian conditions 20 minutes everyday under the sun between 7- 10 is enough.

it said...



> '' UV-D (ultraviolet-d ) rays released by the sun are best source of building vitamin D, but Indian complexion does not absorb sunlight very well. So the level of vitamin D is naturally low in us. A 20-minute outing every day between 7-10 am and 4-5 pm is enough to get your daily dose of sunlight,'' said Dr Mythri Shankar, senior consultant, nuclear medicine, Apollo Hospital.


http://articles.timesofindia.indiat...66408_1_vitamin-d-deficiency-sunlight-insulin

About the shirt thing I read somewhere it was enough to expose your full arms and legs to the sun to get your dily dose of Vit D...could be wrong here...but I guess I've to wait till the end of the onth when I am going to get my vit D levels checked again. last time it was very low.


----------



## David

The sun between 7 and 10 is more intense though it doesn't make sense to me that he includes 7am sun with 10am sun.  That article also mentions UV-D rays?


> '' UV-D (ultraviolet-d ) rays released by the sun are best source of building vitamin D


There's no such thing.

I realize you're staying out longer than that 20 minutes your article suggests, but with the main area of your body covered and the time of day, I'm concerned it won't be enough.  But again, that's just a guess and I hope I'm wrong   I'm glad you're getting tested so we can do a little science 

I used to live off solar electricity.  It was always interesting to see how little electricity was generated at sunrise, then an hour later, then an hour later.  But as the sun got higher in the sky, THAT it when the real juice was made.  Not the same, I realize, but studies I've read showcase that the higher the sun is in the sky, the more vitamin D is created.

Here's some reading for you from a source I trust a LOT on vitamin D.


----------



## prplkow

Wow, great link and info. So really going out in the sun with a shirt and pants does nothing much. I know I am not going to stand in the sun for an hour without a shirt on, especially in the winter....bbrrrrrrrrrrrr. lol Thank goodness for Vitamin D in a jar.


----------



## sid

David said:


> The sun between 7 and 10 is more intense though it doesn't make sense to me that he includes 7am sun with 10am sun.  That article also mentions UV-D rays?
> 
> There's no such thing.
> 
> I realize you're staying out longer than that 20 minutes your article suggests, but with the main area of your body covered and the time of day, I'm concerned it won't be enough.  But again, that's just a guess and I hope I'm wrong   I'm glad you're getting tested so we can do a little science
> 
> I used to live off solar electricity.  It was always interesting to see how little electricity was generated at sunrise, then an hour later, then an hour later.  But as the sun got higher in the sky, THAT it when the real juice was made.  Not the same, I realize, but studies I've read showcase that the higher the sun is in the sky, the more vitamin D is created.
> 
> Here's some reading for you from a source I trust a LOT on vitamin D.


That was a nice and useful read. I understand I am not soaking it in the right areas, maye be will need to go shirtless few days of the week..which I know is less possible...but another thing in my case is that most of the time during the day I am out in the sun and arms mostly uncovered. But agains then may be I might be getting too little of Vit D. Although there is one part of the article that I dont think is correct ( I may be wrong), that very little or no Vit D is created in arms, legs and face.


----------



## SidS

David said:


> The sun between 7 and 10 is more intense though it doesn't make sense to me that he includes 7am sun with 10am sun.  That article also mentions UV-D rays?
> 
> There's no such thing.
> 
> I realize you're staying out longer than that 20 minutes your article suggests, but with the main area of your body covered and the time of day, I'm concerned it won't be enough.  But again, that's just a guess and I hope I'm wrong   I'm glad you're getting tested so we can do a little science
> 
> I used to live off solar electricity.  It was always interesting to see how little electricity was generated at sunrise, then an hour later, then an hour later.  But as the sun got higher in the sky, THAT it when the real juice was made.  Not the same, I realize, but studies I've read showcase that the higher the sun is in the sky, the more vitamin D is created.
> 
> Here's some reading for you from a source I trust a LOT on vitamin D.


David could you recommened Vitamin D brand in liquid format, and how much UI it should be?


----------



## nogutsnoglory

My vitamin D is also 28. I have been supplementing with 800iu for a while plus more in fish oil. Not sure why I'm below. Where does d absorb?


----------



## David

SidS said:


> David could you recommened Vitamin D brand in liquid format, and how much UI it should be?


I don't have a liquid brand I can recommend, others may.  Sorry.

How many IUs you take would depend on what you tested at.  If you were super low, maybe 5,000.  Otherwise 2,000-4,000iu BUT the key is getting retested so you can adjust your dose as need be.


nogutsnoglory said:


> My vitamin D is also 28. I have been supplementing with 800iu for a while plus more in fish oil. Not sure why I'm below. Where does d absorb?


800iu is nowhere near enough.  If you're stuck at 28 I'd personally kick it up to like 4,000 or 5,000iu per day then retest.


----------



## DougUte

nogutsnoglory said:


> Where does d absorb?


D absorbs at the terminal ileum. That is why Crohnies take low vitamin D to all new levels.


----------



## nogutsnoglory

DougUte said:


> D absorbs at the terminal ileum. That is why Crohnies take low vitamin D to all new levels.


If higher doses continue not absorbing can one get a D3 shot? How long should I wait before a re-test?


----------



## my little penguin

I found this interesting on Vitamin D and crohn's a GI pediatric professor from arizona.

http://www.practicalgastro.com/pdf/September12/Ghishan.pdf



> Chronic inflammatory bowel diseases (IBD) affect bone metabolism and are frequently associated with
> decreased bone mineral density (BMD) and increased risk of fractures. Experimental models of IBD
> and as well as data from pediatric and adult IBD patients do not provide a uniform answer whether
> the changes in bone metabolism leading to decreased mineral density are the result of decreased bone
> formation, increased bone desorption, or both. New studies continue to unravel a complex network
> of interactions leading to the inflammation-associated loss of BMD, and may help direct treatment
> of IBD toward more bone-sparing strategies. Nutritional interventions (dietary calcium and vitamin
> D supplementation) are of limited efficacy in IBD patients. Therefore, appreciating the extent of the
> problem and understanding the pathophysiology of osteopenia and osteoporosis in Crohn’s disease
> and ulcerative colitis are critical for the correct choice of available treatments or the development
> of new targeted therapies.


----------



## SidS

David said:


> I don't have a liquid brand I can recommend, others may.  Sorry.
> 
> How many IUs you take would depend on what you tested at.  If you were super low, maybe 5,000.  Otherwise 2,000-4,000iu BUT the key is getting retested so you can adjust your dose as need be.
> 
> 800iu is nowhere near enough.  If you're stuck at 28 I'd personally kick it up to like 4,000 or 5,000iu per day then retest.


I got my results in from a blood test awhile back, never got around posting it.

My test results say I am vitamin D insufficiency, the test was done by Shiel Medical laboratory.

Reference value is 30-100 ng/ml

my test showed L 11.

This is how they broke it down

Deficiency.......<10 ng/ml
Insufficiency...... 10-30 ng/ml
Sufficiency......30-100 ng/ml
Toxicity......>100 ng/ml

For B12 reference value is 211-911 pg/ml

How much Vitamin D3 UI would you recommend? Same with B12.

Thanks.


----------



## David

my little penguin said:


> I found this interesting on Vitamin D and crohn's a GI pediatric professor from arizona.
> 
> http://www.practicalgastro.com/pdf/September12/Ghishan.pdf


Good find, thanks for posting it!  I have contacted Dr. John Cannell of the Vitamin D Council (who I very much trust regarding everything vitamin D) about this and he responded.  I have some followup questions for him and will post everything once I have more answers.


----------



## D Bergy

My doctor said that I should just keep increasing my dose until I can get the level raised. I will be taking 20,000 iu this winter. 15,000 didn't do the job. 

Dan


----------



## DougUte

My levels came back very low again. Dr put me on 50,000 i.u. 3 times a week.again.


----------



## momoftwinboys

my little penguin said:


> I found this interesting on Vitamin D and crohn's a GI pediatric professor from arizona.
> 
> http://www.practicalgastro.com/pdf/September12/Ghishan.pdf


My little penguin also posted a related webcast that is on iTunes 
Pediatric grand rounds : ibd
Advances bench to bedside 

http://www.crohnsforum.com/showthread.php?t=41985

You can also find it on
http://webcasts.ahsc.arizona.edu/home/?d=2012/2/1 

Watched it today and is pretty interesting. Thanks to my little penguin who always has great info.


----------



## Clash

Did anyone read the Canadian news release "Canadian’s Vitamin D Levels 72% Below 'Natural' Levels, Study Says"? I would link to it but having trouble with my laptop. Thought it was very interesting.


----------



## bangarang

Clash said:


> Did anyone read the Canadian news release "Canadian’s Vitamin D Levels 72% Below 'Natural' Levels, Study Says"? I would link to it but having trouble with my laptop. Thought it was very interesting.


Here you go:
http://www.prweb.com/releases/2012/11/prweb10136212.htm


----------



## rhosymynydd

*vit d deficiency*

Thank you all for posting on Vit d. My count is 15 mol instead of 75 mol, then the idiots prescribe a vit d liquid which caused terrible abdominal pain - on investigation, my palliative care consultant told me I should only have it by injection as you need a bowel to absorb it the liquid way and if you do not then the stomach rejects it and cramps like......well I know! O now have to see an endocrinologist to get it sorted but it has also left me with osteomalacia on top of crohn's and a few other goodies picked up on the way....please everyone, if you live in sunnier climes, get out in the sun as much as possible, only needs 30 minutes a day to top up but here in the UK with the worst summer on record.....this is what happens, actually its been a series of rotten summers here. Miss the sun so much but no airline will let me fly due to my health so just have to plan an overland cross channel one next year.  Remember all you chronnies - vit d is the worst possible vit deficieny for us to have! Sun worship is the best possible answer, even covered up, you can absorb enough.:smile:


----------



## Spooky1

Mentioned Vit D to dietician today and she's a little concerned.  I'm going to have to have full bloods done because they don't do that at the GI appts anymore.  She was fully aware that Vit D needs to be taken in ratio to other Vitamins.  So looks like i should hold off for a while. I thought i was starting to feel better on liquid D, but actually today i feel very ill.  Just my crohns i suppose.  one step forwards two steps back.  How about that bit of news about making stems cells from your own red blood cells.  Stem cell therapy anyone?


----------



## JohnnyRottenAppleseed

They have sublingual D3.


----------



## sid

has anyone used Nutrilite's *CalMagD* from Amway ?? any reviews for the product ?


----------



## Aqtkiwi

Hi guys, I am very new to this forum and was after some advice. I was diagnosed with Crohns in 2010, by reading other peoples posts it sounds like I am pretty lucky with no surgery as yet!!! I wanted to know from others about the benefits of Vitamin D & Vitamin B12. I have read many artices about the benefits and should I be taking them? If so in what form and what dosage? I have to say I am pretty impressed reading other peoples storys and seeing how strong people out there are and how it helps to share your story :thumright:


----------



## David

Aqtkiwi, if you're interested in potentially taking vitamin D and B12 (both of which people with Crohn's are commonly deficient in) you should get your levels tested first.  Don't blindly supplement.  Getting tested allows you:

1.  To determine whether you even need to supplement.  
2.  If you are deficient, it helps you determine dose.
3.  Followup tests let you track your results and determine if dose and delivery mechanism are working for you and further optimize if necessary.

Welcome to the community by the way.  We'd love to have you share your story here so we can properly welcome you if you like.


----------



## Spooky1

David, thats probably why my dietician told me to stop taking until i've had all my bloods done.  As you said, they need to be taken in combination with things.  Must say, i'd read how good vit d is in the media lately, but they don't mention that they need to be taken in combinations with other vits.

so good advice there and thanks


----------



## Lisa

Just found this info on Vitamin D - 

http://www.healthcentral.com/rheuma...s-genes-for-cancer-autoimmune-disorde/?ap=825


----------



## ellie

Interesting the VitD/Crohn's/RA connection. (I'll have to look a bit closer at the overlap with RA genes! That would be my genetic heritage link, no previous known IBD)
Couple of observations..
Even living in Australia, we've all been so spooked by "sun skin damage/melanoma risk/decreased ozone layer risks" that many of us spend little time in the sun (my Vit D was low normal on testing 18 months ago)
Since then I've added Ca/Mg/fish oil /VitD/ probiotics daily, religiously.. And the intestinal world has been relatively stable!(fingers crossed!!)


----------



## D Bergy

It is not healthy to get burned on the sun.  Ten or so minutes in strong sun is probably all you need in your climate.  Lots of skin exposed will get the job done. 

Dan


----------



## Susan2

There has been a lot of work done on this in Australia and now the Cancer Councils and SunSmart give advice on the amount of sun needed in various parts of Australia. (You have to remember that Australia covers a large area and a variety of climate types and so degrees of UV radiation.)

They advise that, during summer, and in winter in northern parts of Australia, the majority of people can maintain adequate vitamin D levels from a few minutes of exposure to sunlight on their face, arms and hands or the equivalent area of skin on either side of the peak UV periods (10am to 3pm) on most days of the week.

In winter in the southern parts of Australia, where UV radiation levels are less intense, people may need about *two to three hours *of sunlight to the face, arms and hands, or equivalent area of skin, *spread over a week *to maintain adequate vitamin D levels.


----------



## Scopey

Hey All,

My Vitamin D is currently below 14, I'm not sure how bad this is? I'm been on Vit D tablets for a few months now and no improvement, the GP doesn't know what else he can give me!

I'm currently undiagnosed but thought I'd invaded this thread, hehe!


----------



## David

When you say your vitamin D is below 14, can you tell us what type of vitamin D they tested (1,25-Dihydroxyvitamin D or 25-Hydroxyvitamin D) or what the stuff after the 14 is?  Example would be 14 pmol/L.

Either way, a level of 14 is going to be really bad.  The "tablets" you're taking.  Are they white tablets with nothing liquid in them?  And what is the dosage?  For example, 2000iu?


----------



## Susan2

Phew, I don't know how the measurements work in the UK, but, in Australia, that would be perilously low.:ywow:


----------



## Scopey

David said:


> When you say your vitamin D is below 14, can you tell us what type of vitamin D they tested (1,25-Dihydroxyvitamin D or 25-Hydroxyvitamin D) or what the stuff after the 14 is?  Example would be 14 pmol/L.
> 
> Either way, a level of 14 is going to be really bad.  The "tablets" you're taking.  Are they white tablets with nothing liquid in them?  And what is the dosage?  For example, 2000iu?



I sure it was 14 mol/L, something like that|!

The dosage is 20,000 something, they said I couldn't take any more than once a week due to the toxic in them. They are clear see through tablets.

Thanks for your help!


----------



## David

So you're taking one 20,000iu tablet per week and nothing else?

If so, I'm not a huge fan of that method personally.  If they did 20,000iu once per week AND something like 2,000iu per day, then I'd be on board.  You may want to discuss the idea of taking a quality OTC vitamin D each day that has 2,000-4,000iu with your doctor.  If it is the solid white form, it should be taken with some form of fat.

If that STILL doesn't work, then injections of vitamin D MAY be warranted.


----------



## Scopey

David said:


> So you're taking one 20,000iu tablet per week and nothing else?
> 
> If so, I'm not a huge fan of that method personally.  If they did 20,000iu once per week AND something like 2,000iu per day, then I'd be on board.  You may want to discuss the idea of taking a quality OTC vitamin D each day that has 2,000-4,000iu with your doctor.  If it is the solid white form, it should be taken with some form of fat.
> 
> If that STILL doesn't work, then injections of vitamin D MAY be warranted.


Thanks, I see him this week so will ask him about this!


----------



## D Bergy

My doctor told me that I should simply take more D3 until my level starts to come up.  
I have had difficulty getting my Winter levels up. 

I am now taking 35,000 iu daily.   I will get it tested in another month and see if it has helped. 

Dan


----------



## gringo43

Sooo...I guess a level of 14.2 ng/mL is not a real good thing....


----------



## David

Not good, but at least you know and can correct it now


----------



## gringo43

Doc gave me Ergocalciferol(D2)... (1) 50,000 unit cap per week ...and ... Calcium 600/Vitamin D 4000 unit white tablets  (2tabs daily)


----------



## David

Be sure to take some sort of fat at the same time you take the white tablets or you may have trouble properly absorbing it.


----------



## gringo43

Any suggestions on the fat?


----------



## David

Some in this thread have suggested olive oil.  Sounds kinda gross to me, personally.  Others might be able to offer better suggestions.  The other idea is take it at the same time as some sort of food that contains fat each day.


----------



## gringo43

Thanks


----------



## Susan2

I take my Magnesium tablets with biodynamic full fat yoghurt at breakfast time. Seems to work for me.


----------



## Laura44

I was recently diagnosed, had all my blood work done on vitamin levels and found I was a 34.  I started with 5000 IU and even tried some D3 lotions - retested and not much improvement.  I started LDN, 10K units of D3 and folic acid about a 8 weeks ago ....I will have to say that I feel MUCH better.  Even the depression has lifted.  I have my blood work redone the end of the month -- I am anxious to see if my number has increased!


----------



## CLynn

Gringo, I have read on here many times that taking vitamin D with fish oil capsules provides the fat needed to absorb the most.


----------



## Mary:)

Vitamins are so confusing!!!!!!!!!


----------



## ***Lisa***

**************************PART I *****************************

Hello All:

To followup my previous comment, this is my daughter's story. Let me apologize ahead of time for the lengthy reply, however, I think it's important for you to know the back story. 

Rachel was diagnosed with Crohns five years ago when she was 15 and her symptoms were moderate to severe. She lost a ton of weight, she had massive hair loss, high fevers, bathroom issues, you name it. Just making it to high school was a challenge. She has been on all kinds of different meds (too long to list) with the last one being Remicade for just under 3 years. It worked great the first year but then lost its effectiveness and she started suffering with side affects. Her pediatric GI thought increasing her dose to the highest allowed for her age group was the answer, but it wasn't. It just caused her joints to crack & pop, the skin behind her ears were always inflammed, her immune system was so low that she caught every bug that came around and on top of it all, the Remicade did not alleviate her symptoms. We were very frustrated because she was attending college four hours away from home and in order to be able to make it to any of her classes, she had to wear an adult diaper everyday because of the frequent accidents she was having while on the highest dose of Remicade. She has so many embarrassing stories, as do all Crohns & Ulcerative Colitis sufferers. 

We decided that it was time to get a second opinion by a non-pediaric GI, so we brought her to a big city hospital near her college in November 2012 and they did a CT Scan along with a colonoscopy. They confirmed that her large & small intestines were completely involved (her small was even more diseased than her large). Her ilieum was involved, too. In fact, her ilieum was so inflammed that they could not even get their small probe to go through the ilieum into her small intestine, therefore, they could not complete the colonoscopy. The GI prescribed Humira and sent her on her way. They sent her the practice Humira needle kit and kept calling to setup the appointment for her first injection, but we decided no more meds! Five years was enough! I mean, why take med after med after med if she is not getting any noticeable relief from her symptoms? She was already eating a very limited diet and we decided to limit her diet even more and even visited with a nutritionist a few times to get their recommendations, as well. We were scared because taking her off meds after being on them for five years was a big risk, but the hard decision had been made.

We were so frustrated at this point. I became obsessed with researching everything I could get my hands on about Crohns and I talked to anyone who would listen to me and even attended a CCFA Crohns Conference that was being held in another state (I'm from a small town and those conferences are no offered in my area). Then, one evening, I attended a short two hour Crohns seminar that was being held near my hometown where a GI was going over the latest meds that were being used to treat Crohns & Ulcerative Colitis. I got talking with a woman there and that one conversation changed everything for my daughter.

This woman's husband is a scientist and many years ago struggled with psoriasis. When doctors could not help him he spent all his spare time researching his condition and he found that taking Vitamin D-3 and Folic Acid which he bought at his local store took away all his symptoms. Many years later his wife (the woman I met) was suffering with a bad flare from her Ulcerative Colitis and nothing her GI recommended was helping. Her husband starting thinking that if the Vitamin D-3 and Folic Acid fought the inflammation that caused his psoriasis, then maybe it would help her. They decided there was no harm in trying it so she started taking the Vitamin D-3 and Folic Acid and in less than one week felt better than she had in years! As time went by, all her Ulcerative Colitis symptoms disappeared and just two months ago had a colonoscopy and her GI said that there is no evidence of Ulcerative Colitis in her colon! How amazing is that?!

They had not shared their experiences with anyone else outside their family until I met her on the night of October 23, 2012 when she stood up and told everyone in the room about her story. The GI played down her experience saying that what helps one IBD patient will not always help another. Anyway, we exchanged contact info and have been keeping in touch since. We had already stopped all prescribed meds for my daughter anyway so we decided to give the vitamins she suggested a try when my daughter came home for winter break at the end of December 2012. Please keep in mind that my daughter had her last Remicade infusion on October 19, 2012.

We have just been absolutely amazed at how wonderful she feels with taking no medication and only taking 5,000 iu's of Vitamin D-3 and 400 mcg's of Folic Acid together every morning! Before she added the Vitamin D-3 and Folic Acid to her daily regiment (she was already taking a multi-vitamin, calcium, iron, probiotics & fish oil everyday) and was having Remicade infusions every eight weeks, she was a mess and we truly wondered how much longer she could continue to go to college, but we were going to do everything in our power to keep her in school. She loves college and she was doing everything she could do to not let Crohns take that experience away from her, even though she was a walking zombie half the time as she very rarely slept through the night when she was having Remicade infusions. 

It sounds absolutely crazy, I know, when I hear myself say that just by adding these two little vitamins to her daily routine, it completely turned her health around, but it's true! I am not a doctor and recommend that you talk to your doctor before doing anything, but we are going completely against both of her GI's orders, not giving her any meds at all, and she has her life back! It is truly a miracle! 

If your kids are having Crohns symptoms and are not taking any kind of steroid (Vitamin D and steroids do not mix so please do not add Vitamin D if your child is taking any kind of steroid), I highly recommend that you talk with their pediatric GI and consider giving them Vitamin D-3 and Folic Acid. The 5,000 iu's of Vitamin D-3 and 400 mcg's of Folic Acid is what my friend recommends for adults, but children should take less. I am not a medical professional so I don't want to tell you how much to give children, but I think you should consider giving your kids with IBD some Vitamin D-3 and Folic Acid everyday. 

The way the scientist explained it to me is that everyone needs Vitamin D and the Recommended Daily Intake (RDI) of Vitamin D is set way too low (400 to 600 International Unites (iu’s) for adults a day). For adults, with skin conditions or IBD, he believes that we should take 5,000 iu's everyday, even healthy adults. Depending on the weight of the child, it should be lower, so check with your pediatric GI on how much Vitamin D-3 they should take. But, taking Vitamin D alone will not work as, if taken alone, it will only stay in your system for about 90 minutes which is not enough time to heal the imflammation in your body. If you take the Vitamin D-3 with Folic Acid, the Folic Acid causes the Vitamin D to stay in your system for 6 or 7 hours which gives it time to absorb into your system and fight the inflammation (i.e., inflammed bowels, inflammation on your skin, etc.). Anyway, that is some of the science behind his discovery. 

I just wanted to share this with all of you as I know what you are going through with your children or if you have IBD, what you have to deal with everyday. It seems with the success that my scientist friend, his wife and my daughter have had that he may have stumbled onto something really awesome that can help you or your kids. 

I wish you all the best! If anyone else has had good luck with Vitamin D-3 and Folic Acid, please message me as I'd love to hear about your experience! 

I will continue to keep your children in my prayers as they, and you parents, cope with this terrible disease.

Take care! 

Lisa

************************** PART II ***************************

Hello everyone -

Thanks to everyone for your comments. Both her pediatric GI and the GI who provided us with the second opinion are aware of what we are doing and she is having her inflammatory markers and vitamin levels tested in a few weeks.

I totally agree that this does seem too easy and too good to be true, but this is her reality now and it is wonderful considering what she has had to endure over the past five years. This is all very new to us so as more time passes, I will keep you posted on how things progress for her and I trust you will do the same. 

Please let me be clear - I do not condone shutting your GI out when dealing with any kind of IBD as you should always work hand-in-hand with them in order to ensure that you are making well informed decisions about your health or the health of your children.

One last note which I think is quite interesting ... As I said previously, the scientist believes that Vitamin D and Folic Acid help reduce inflammation throughout the entire body. Many years ago he had an X-ray done on his knee prior to having minor knee surgery. Then, about ten years later he had an X-ray done on that same knee as he was preparing to have another surgery. When comparing the two X-rays his doctor was astounded because the X-ray that was taken ten years ago showed signs of arthritis but the current X-ray showed no signs of arthritis at all. How does arthritis just go away on its own? Could it be attributed the Vitamin D and Folic Acid he had been taking for years? Very curious ...

Thanks again!

:sun::sun::sun:

Lisa


----------



## Farmwife

Hi Lisa and welcome.
I saw you in the Parent's forum and welcome aboard.
The FIRST thing my girl's new GP asked is what is her vit. D level! She's on drops (she's four and on EN).

I'm so happy to hear that your girl is doing so well. I'm a big believer in vitamins and the role they play in our health. I'm also glad your GI is in the loop with her care.
Keep up the good work, your doing a great job!


----------



## ***Lisa***

Hello Farm Wife and thank you for the warm welcome!

My gosh, your little girl sure does have a lot going on. What a little cutie she is!! It sounds like you've got a really good GP who knows their stuff and checked her Vitamin D levels without delay. I sure do hope your daughter's symptoms are being controlled. I know she is the love of your life! You continue to do what you are doing and I will do the same with my little girl (yes, even though she's in college, she is still my little girl!!).

I'm sending lots of hugs to you and your daughter!

:sun::sun::sun:

Take care!

Lisa


----------



## CrohnsDaddy

David said:


> I love this product  though I don't know if you can get it down there.


David, sorry to bring this up from long ago, but I've been doing a lot of catch up reading the last few days. 

Is the product in the link a dry powder (tablet) or oil suspension in a capsule?

Thinking about ordering some today, but would like to get an oil suspension D supplement if possible.


----------



## David

It's a capsule


----------



## D Bergy

I use Extra Virgin Coconut Oil to help absorb fat soluble supplements.  It also works well for cooking.

Because of its antibacterial antifungal properties it keeps for years withut spoilage.  

Dan


----------



## polar1920

I saw my Gastroenterologist on Xmas Eve and had a blood test. It showed that my Vitamin D level was low. I now have to have 2 Pro D3 10,000IU capsules every month. Also my B12 level is low even after a course of ten injections, it is 108/109. So I am booked in for another course.


----------



## David

Polar,

They don't have you supplement more than the two 10,000iu capsules twice a month?  No smaller doses between those?

For the B12, they had you do a 10 shot course and then stop?  How long did you stop for?


----------



## 723crossroads

***Lisa*** said:


> **************************PART I *****************************
> 
> Hello All:
> 
> To followup my previous comment, this is my daughter's story.
> 
> *snip*


This is amazing, I already take the vitD3 5000 units a day. Have to get folic acid now!


----------



## polar1920

David,
I had the last B12 injection last Friday, had the blood test to check the count on Tuesday and have to restart the injections tomorrow 

Thanks


----------



## D Bergy

My B-12 is still on the lower range of normal with monthly injections. 

The good news is my D was 80. It took 35,000 iu daily to get it to that.  Now I have to retest more often to find out if I need less to keep it there. 

Dan


----------



## 723crossroads

polar1920 said:


> David,
> I had the last B12 injection last Friday, had the blood test to check the count on Tuesday and have to restart the injections tomorrow
> 
> Thanks


May I ask u what works best for u with the fibromyalgia pain, as I have it too. She has put me on neurontin and now Tramadol. I have bad side affects with both. I am on effexor xl and it is good for mood, but hasn't helped my pain. I would appreciate if u could shar ur knowledge with what works for you???


----------



## polar1920

At the moment I take Pregabalin for the pain. I started on a low dose and increased it. Am now on 200mgs a day.
The problem I have is that most medication I have tried in the past has made me  drowsy and unable to function on a day to day basis. I have the Crohns disease, and Migraine medications to add in the cocktail. It now seems balanced at the moment. Somedays I feel a little bit "cotton wool like" but I can function.
The mix of tablets and possible my vitamin deficiencies at the moment have caused some problems with my short term memory. Some days it is better than others

Hope that helps


----------



## 723crossroads

polar1920 said:


> At the moment I take Pregabalin for the pain. I started on a low dose and increased it. Am now on 200mgs a day.
> The problem I have is that most medication I have tried in the past has made me  drowsy and unable to function on a day to day basis. I have the Crohns disease, and Migraine medications to add in the cocktail. It now seems balanced at the moment. Somedays I feel a little bit "cotton wool like" but I can function.
> The mix of tablets and possible my vitamin deficiencies at the moment have caused some problems with my short term memory. Some days it is better than others
> 
> Hope that helps


Thankyou, so u are on the generic for Lyrica basically?I am afraid to take it because of the possible side effects of it. She did talk about cymbalta maybe. I go back at the end of the month or Mar. something. I forget. My short term memory is not great either some days! Thanx for your reply!!!


----------



## JDTM

Chiming in here because of the questions on taking white Vitamin D tablets with some sort of fat -- I used a spoonful of peanut butter when I had tablets, and now I have capsules.  I got my D levels retested before I made the switch to capsules though, and my levels were back in the normal/healthy range, so I think the peanut butter worked as fat.  If you like peanut butter and need a little protein, it's not bad!


----------



## polar1920

Yes I am on the Lyrica, and have been for about 9 months and upto now have not had any side effects to speak off.
Some of the others like Gabapentin had me in a stupor for days, and as we run our own business, my Partner relies on me to book in customer visits, so I need to be able to function.
Also I don't want to live just doped up all the time. I haven't heard about Cymbalta.
Hope you get sorted out


----------



## 723crossroads

polar1920 said:


> Yes I am on the Lyrica, and have been for about 9 months and upto now have not had any side effects to speak off.
> Some of the others like Gabapentin had me in a stupor for days, and as we run our own business, my Partner relies on me to book in customer visits, so I need to be able to function.
> Also I don't want to live just doped up all the time. I haven't heard about Cymbalta.
> Hope you get sorted out


Thankyou so much for your insight!!!


----------



## ***Lisa***

723crossroads said:


> This is amazing, I already take the vitD3 5000 units a day. Have to get folic acid now!


Hi Teresa -

I am certain that you will see a marked improvement in your health after taking the 5,000 IUs of D3 and 400 MCGs of Folic Acid. Please contact me in a couple of weeks to let me know how you are doing! 

I'm still on cloud nine because my daughter is soooooo healthy now and it happen in such a short period of time. Everyone is deficient in vitamin D so we all should take D3 along with the Folic Acid but for a person who does not any issues with inflammation, it is hard to tell if it is of any benefit, but for those with IBD, the improvement is so dramatic and so quick. Two weeks is all it takes to see the benefits!

Please keep us posted!

Lisa


----------



## David

Please be careful about blindly supplementing folic acid.  At the very least do it under the supervision of your doctor.  Folic acid supplementation can interfere with zinc (which Crohnies are commonly deficient in) and the University of Maryland Medical Center cautions about supplementing just one or two of the B vitamins without the others as it may lead to imbalances.  In addition, in some cases, folic acid supplementation can mask symptoms of B12 deficiency which is common in people with Crohn's.  If you're deficient in folate, then absolutely.  But treat this stuff as a medication and do it under the supervision of your doctor.


----------



## Spooky1

Just had all my mins/vits tested.  7 vials of blood this morning, so hopefully my dietician will help me sort out whats absorbing and whats not.  Really looking forward to getting back on the D3 as i swear it improved my health.  Dietician made me stop until she had actual information on my bloods.


----------



## ***Lisa***

David - 

I will look into your concerns further. All sides of the vitamin puzzle need to be considered.

Spooky1 -

Until this is all sorted out, my daughter is going to continue with the D3 and Folic acid. She just feels so incredible, it would be insane at this point for her to stop. She is having her inflammation levels tested soon and I know the results of that test will be positive. We asked her GI to test her vitamin levels again but she wants to wait a couple more months before doing that.

Hey, if it works, take your viramins!! Definitely check your vitamin levels often but in the meantime, take your D3 and Folic acid. Take them until your blood test shows your levels are too high.

Thanks all!

Lisa


----------



## sid

david I got my Vit D checked..last time it was 11.3 ng/ml and now its 13.2 ng/ml..not a significant improvement...after more than 3 months of sun exposure and no supplement. ( I still kinda think its because of the timing of the day and less skin exposure). Anyways , I showed the test result to my GP and he has prescribed me D3 dosage of 60,000 IU once in a week.


----------



## D Bergy

I assumed the sudden increase in D from 40 to 80 was a result of my increased D dose.  I also started taking vitamin K supplements at the same time.  

It is possible that the vitamin K helped to bring up the serum levels.  

At least some doctors say that any large doses of vitamin D should also be accompanied by vitamin K.   The reason is to prevent calcium from depositing where it should not be.  This is the main symptom of vitamin D toxicity.  

Since K is needed to keep bones strong anyway, it may be worth getting more in our diets or supplementing. 

Dan


----------



## Lisa

Had a call from the infusion clinic about my vitamin D level - it is 15...low/normal is 30 for reference....she was going to check with the doctor on what to do next, as I am already on a weekly dose of V D12 1.25mg (50k units) - the little green oval pill...


----------



## mnsun

An article on naturalnews recently said to take D3 in the morning (makes sense circadian rythm-wise), and it will counter the afternoon energy drag.  Just a random D3 tip I've been trying out.  Seems to help.  

Though I have also been occasionally taking a melatonin supplement and keeping my room dark (alarm face down)--I say occasionally because you don't want to become dependent.  This stuff gives me dreams and may counter fluoride's effects on the pineal gland, along with iodine.


----------



## JohnnyRottenAppleseed

D Bergy said:


> My B-12 is still on the lower range of normal with monthly injections.
> 
> The good news is my D was 80. It took 35,000 iu daily to get it to that.  Now I have to retest more often to find out if I need less to keep it there.
> 
> Dan


Do you feel any different now that you got your D to 80?


----------



## ***Lisa***

sid said:


> david I got my Vit D checked..last time it was 11.3 ng/ml and now its 13.2 ng/ml..not a significant improvement...after more than 3 months of sun exposure and no supplement. ( I still kinda think its because of the timing of the day and less skin exposure). Anyways , I showed the test result to my GP and he has prescribed me D3 dosage of 60,000 IU once in a week.


My daughter's GI prescribed 50,000 IUs of D3 once a week for eight weeks, but she only took this mega weekly dose for a couple of weeks and then stopped and elected to take a lower dose on a daily basis to keep a constant stream going through her system. She did not notice a marked improvement in her health until she took 5,000 D3 and 400 Folic Acid every day.


----------



## D Bergy

The only difference I noticed with the higher D levels was my response to the Flu.  

Normally, I can get the Flu and not get very bad symptoms.  I rarely ever miss work because of it.  A few weeks ago I got walloped by the Flu.  Missed a day of work and would have missed more days but luckily I was on my days off by then.  

I only had this happen once before when I was on LDN. 

The reaction could have been from a more normal immune response. 
However, it could have been a particularly bad strain of the Flu also.  

Other than that, I have not noticed anything in particular. 

Dan


----------



## sid

***Lisa*** said:


> My daughter's GI prescribed 50,000 IUs of D3 once a week for eight weeks, but she only took this mega weekly dose for a couple of weeks and then stopped and elected to take a lower dose on a daily basis to keep a constant stream going through her system. She did not notice a marked improvement in her health until she took 5,000 D3 and 400 Folic Acid every day.


Lisa can you tell me what was her Vit D level before starting the weekly dose ??


----------



## Spooky1

Sid, can i be naughty?  i'd like to know what sort of diet you have as its interesting that Asians also have crohns.  is there much in the way of Crohns in Asia?


----------



## 723crossroads

sid said:


> david I got my Vit D checked..last time it was 11.3 ng/ml and now its 13.2 ng/ml..not a significant improvement...after more than 3 months of sun exposure and no supplement. ( I still kinda think its because of the timing of the day and less skin exposure). Anyways , I showed the test result to my GP and he has prescribed me D3 dosage of 60,000 IU once in a week.


Hope you get it back to where it should be sid! Hope you had a lovely vacation and holiday. How was the wedding?


----------



## ***Lisa***

sid said:


> Lisa can you tell me what was her Vit D level before starting the weekly dose ??


Unfortunately, they did not give me her actual level nor was I savvy enough then to ask for it. Her GI simply said that her level of Vitamin D was so low that it was off the charts and they prescribed 50,000 of D3 once a week for eight weeks. I am going back to the GI now to ask what it was as I do want to know.


----------



## 723crossroads

My Dr, always just tells me my vit. D level is low normal, what is the actual optimum level???.


----------



## ***Lisa***

723crossroads said:


> My Dr, always just tells me my vit. D level is low normal, what is the actual optimum level???.


80-100 ng/nl is a healthy range but I would be happy to get my daughter's up as high as 150 so that if her level starts to drop when her system is trying to fight a cold or a flare, she has a cushion.


----------



## 723crossroads

I'll have to ask him next time what it is now. He said it was 50 I think. That sounds low. I take 5000 mcg. a day or mG. not sure.


----------



## David

723crossroads said:


> I'll have to ask him next time what it is now. He said it was 50 I think. That sounds low. I take 5000 mcg. a day or mG. not sure.


Vitamin D comes in IU (International Units) as its unit of measure.  So maybe 5,000 IU?


----------



## ***Lisa***

723crossroads said:


> I'll have to ask him next time what it is now. He said it was 50 I think. That sounds low. I take 5000 mcg. a day or mG. not sure.


50 is too low. We all need to be better about tracking our D levels (me included!)


----------



## David

We need to get better about utilizing the units of measure since we're an international forum and it makes a HUGE difference.  Someone may or may not be deficient depending on the unit of measure.  "My vitamin D level is 50" tells us nothing without the unit of measure and advising someone without it is not a good idea.

pg/mL and ng/ML are conventional units and pmol/L and nmol/L are SI units.

    1,25-Dihydroxyvitamin D 	pg/mL 	2.6 	pmol/L
    25-Hydroxyvitamin D 	ng/mL 	2.496 	nmol/L

To convert from the conventional unit to the SI unit, multiply by the conversion factor (2.6 and 2.496 depending on the form of vitamin D).

To convert from the SI unit to the conventional unit, divide by the conversion factor.


----------



## 723crossroads

David said:


> Vitamin D comes in IU (International Units) as its unit of measure.  So maybe 5,000 IU?


My rescuer always!!! That's why I said wasn't sure! Thanx David!:ack:


----------



## CLynn

Teresa, do you supplement your D3?


----------



## 723crossroads

CLynn said:


> Teresa, do you supplement your D3?


Yes. Everyday.


----------



## CLynn

I was, but have been out for about a month. Going to get some more today. I do one tablet that is 5,000. It's a gel tab.


----------



## 723crossroads

CLynn said:


> I was, but have been out for about a month. Going to get some more today. I do one tablet that is 5,000. It's a gel tab.


Mine too. Gotta go C. Mom's in hospital for Afib.


----------



## CLynn

Hugs! Let me know how she's doing.


----------



## ***Lisa***

CLynn said:


> I was, but have been out for about a month. Going to get some more today. I do one tablet that is 5,000. It's a gel tab.


Hi Lynn:

When my daughter starts coming down with a cold or if she has a hint of any Crohns symptoms, she takes 5,000 IUs of D3 and 400 of Folic acid TWICE a day until her symptoms go away. It gets her back on track very quickly. Then, she goes back to taking D3 and Folic acid once a day. If she let's the symptoms go on too long before increasing her D3 intake and gets really sick, she takes a mega dose of D3 (between 10,000 to 50,000 IUs of D3 - her GI prescribed 50,000 IUs) just one time in a one week period of time, and that really works, but she never takes those high doses on a daily bases.

You know how diabetics test their blood sugar level everyday so they know how much sugar they need to get I to their system to remain healthy? I wish there was an at home vitamin D test that anyone could take anytime to determine their vitamin D level. Then, rather than guessing, we all would know exactly how much D3 we should take on any given day to keep it at an optimal level.

Just passing along what works for her!

Lisa


----------



## CLynn

Thanks, Lisa, that is very helpful! My husband was diagnosed with juvenile diabetes at age 35 (crazy, nearly unheard of) so I know exactly what you mean. Yes, I would love a meter that would test our blood levels, for D, for B12, etc. Maddening that I've had to learn things here and then ask my GI about it before anything gets done as far as supplementing.


----------



## ***Lisa***

I know what you mean, Lynn. We need to blaze the trail here. Meds just did not work, long term, for my daughter but I know that by tracking out vitamin levels, and supplementing accordingly, we can control IBD rather than having it try to control us.


----------



## CLynn

The GI that diagnosed me, I went to for 16 years, until he left the city he practiced in (was sick of dealing with the hospital and how they try to micromanage what the doctors do and don't do) for Alabama. I truly miss him, have not found a GI that I "gel" with since. They don't understand where I am at, all these years into it. I take it seriously, and will take meds when I flare. As far as taking meds long term, that may or may not prevent recurrence, I am cautious. I know that every med they give us has side effects, some short term during the course, some long term in what it does to our bodies. So if they can't give me really decent numbers as far as the likely hood it will keep me in remission, I won't do it. I'd rather look at the diet, vitamin and minerals, etc to help keep me as healthy as I can be.

 I'm Cheryl, by the way. Great to meet you!


----------



## ***Lisa***

So great to meet you, too, Cheryl! 

You and I have like minds so please keep in touch and let me know how things are going for you and I will let you know how my daughter is doing, as well. We need to decide how we are going to attack this and by sharing our successes and failures with each other, we will, in the very near future, learn how to keep the ugly Crohns monster at bay!

Take care.

Lisa :sun:


----------



## JohnnyRottenAppleseed

The side effects of the "treatments" for Crohn's/colitis caused me more problems than the disease itself. I have corrected my mineral and vitamin deficiencies, as well as probiotics and haven't felt this good in years.


----------



## CLynn

Which probiotic are you using, Johnny? That's my next thing to add, haven't chosen one yet.


----------



## JohnnyRottenAppleseed

It seems a good organIc yogurt is best but I have also take S Bouhlardii (sp?) which is actually a beneficial fungus that keeps harmful bacteria at bay. I also sometimes take bifidus and acidophilus combo. I have also taken mutaflor. I am also about to have my gut flora sequences while healthy and before after flares to see what's up. I'm realizing that the gut flora landscape is complex and unexplored. I think we always have good and bad bacteria but sometimes the bad overtake the good and need to be knocked back with antibiotics. The jury is still out.


----------



## CLynn

I did try Align once, but didn't notice much difference. I am wondering if more expensive probiotics are more effective, or if it doesn't matter. I think the scientists don't concentrate enough on this, or the natural side of things for that matter.


----------



## JohnnyRottenAppleseed

Nuking and rebuilding seems to be working for me. Nuke with cipro/flagyl for ten days then yogurt and probiotics for a few weeks. Eating bananas and apples, throwing sprouts in my salad for enzymes, eating nuts. I think im basically eating Paleo type diet but do eat cheese and yogurt a few times a week There was some info about pistachios increasing beneficial bacteria in gut after a month of consumption. There will never be studies done on anything natural and cheap because there is no interest in paying millions to prove something non profitable works. Meanwhile they sell their $20,000 a year snake oil (humira). Ever see the commercial? They call death a "fatal event" to blunt the reality of side effects.


----------



## CLynn

Oh, I know. Kills me, what the years of prednisone alone have done to me. Back when i was first diagnosed and it was at it's worst for the first few years, there wasn't Himuira and Enbrel, etc....it was flagyll, prednisone and then later instead of prednisone it was Imuran. And the world wasn't online to share all our info.


----------



## JohnnyRottenAppleseed

CLynn said:


> Oh, I know. Kills me, what the years of prednisone alone have done to me. Back when i was first diagnosed and it was at it's worst for the first few years, there wasn't Himuira and Enbrel, etc....it was flagyll, prednisone and then later instead of prednisone it was Imuran. And the world wasn't online to share all our info.


Yeah I went through all those too! Awful drugs.


----------



## ***Lisa***

We all have to keep sharing our experiences with what works and what doesn't work because meds only mask the problem for a short time, never gets to the root cause of what is created the Crohns in the first place, costs an arm and a leg (which is beside the fact when you are sick as we are willing to pay ANYTHING to feel better), and the meds cause a "fatal event." We will never go the med route again. Never.

Thank you all for sharing. This really is the best forum out there for sharing thoughts and experiences. This disease can make you feel so isolated, but not anymore!


----------



## CLynn

Thank God we have the forum now, hmm?


----------



## David

Kiny just posted this in another thread (thanks) which backs up what we've been saying for years.



> *Active Crohn's disease is associated with low vitamin D levels.*
> 
> Jørgensen SP, Hvas CL, Agnholt J, Christensen LA, Heickendorff L, Dahlerup JF.
> 
> Department of Medicine V, Hepatology and Gastroenterology, Aarhus University Hospital, Denmark
> 
> 2013 Feb 8
> 
> *BACKGROUND AND AIMS:*
> 
> Crohn's disease prevalence increases with increasing latitude. Because most vitamin D comes from sunlight exposure and murine models of intestinal inflammation have demonstrated beneficial effects of 1,25-(OH)(2) vitamin D treatment, we hypothesised that Crohn's disease activity is associated with low vitamin D levels.
> 
> *METHODS:*
> 
> In a cross-sectional study of 182 CD patients and 62 healthy controls, we measured serum 25-OH vitamin D. Stratified analysis was used to compare 25-OH vitamin D levels with Crohn's disease activity index, C-reactive protein, smoking status, intake of oral vitamin D supplements and seasonal variation in CD patients and healthy controls.
> 
> *RESULTS:*
> 
> Serum 25-OH vitamin D was inversely associated with disease activity: Median 25-OH vitamin D levels of Crohn's disease in remission, mildly, and moderately active diseases evaluated by Crohn's disease activity index were 64, 49, and 21nmol/l (p<0.01) and by CRP 68, 76, and 35nmol/l (p<0.05), respectively. Patients who took oral vitamin D supplementation had lower Crohn's disease activity index (p<0.05) and C-reactive protein (p=0.07) than non-users. Crohn's disease patients who smoked had lower vitamin D levels (51nmol/l) than patients who did not smoke (76nmol/l), p<0.01. Overall, Crohn's disease patients did not differ from healthy controls regarding 25-OH vitamin D levels
> 
> *CONCLUSIONS:*
> 
> Active Crohn's disease was associated with low serum 25-OH vitamin D. Patients who smoked had lower 25-OH vitamin D levels than patients who did not smoke, independently of disease activity.


http://www.ncbi.nlm.nih.gov/pubmed/23403039]Source


----------



## ***Lisa***

Thanks, David & Kiny! This demonstrates, once again, the importance of taking Vitamin D3 supplements everyday if you have Crohns, although virtually everyone is deficient so everyone should supplement. The only real question is how much to take? That depends if you are flaring. During a flare, you should increase your dosage of Vitamin D3 and then reduce to a lower dose after the flare had passed.


----------



## 723crossroads

So how much when flaring???


----------



## David

***Lisa*** said:


> During a flare, you should increase your dosage of Vitamin D3 and then reduce to a lower dose after the flare had passed.


What do you base this suggestion upon?

Thanks


----------



## ***Lisa***

David said:


> What do you base this suggestion upon?
> 
> Thanks


David:

I base it on the fact that when my daughter was her sickest, her GI reported that her Vitamin D level was <13 which is the lowest threshold level for the lab. When anyone is having a flare, they need to ask their GI to test their Vitamin D level and supplement accordingly and keep having it tested until it is where it needs to be and their flare has passed.

723Crossroads:

I suggest you have your Vitamin D level tested ASAP and then supplement as recommended by your GI.


----------



## David

***Lisa*** said:


> When anyone is having a flare, they need to ask their GI to test their Vitamin D level and supplement accordingly and keep having it tested until it is where it needs to be and their flare has passed


I agree 100%.  It's all about the testing and dose optimization in my opinion


----------



## Spooky1

i got a call from the Drs surgery and they've booked me an appointment for next week to discuss my vitamin blood test results.  Can't wait.  dietician made me cut my vitamins out until results.  I had only taken vitamin D3 for around 3 months and found good results.  I am so looking forward to resuming it.  there could be that cure yet.  anyone heard of Gattex (i think its called that),  its for those with short bowel syndrome and us crohnies.  very expensive but that and D3 could see my life turn around entirely.


----------



## David

Another paper from Kiny showcasing the benefits of Vitamin D in Crohn's disease.


----------



## Jam300

I currently supplement with Vitamin D tablets twice a day and am due to have my levels tested soon. How long before I am tested should I stop taking these tablets in order to get a fair reading of my baseline?


----------



## Beach

It typically takes 3 to 4 months of supplementing with vitamin D3 to reach optimal levels.  That is a good time to test.  

Recall this article by Dr. Briffa.  It might be of further help concerning vitamin D deficiency, dosage and testing.  

"If your vitamin D levels are low, what’s a useful starting dose?"

http://www.drbriffa.com/2012/03/21/if-your-vitamin-d-levels-are-low-whats-a-useful-starting-dose/


----------



## Jam300

I was thinking that I should stop supplementing in order to give a true reading of how much Vit D i'm absorbing Beach and then supplement accordingly? Is this a poor idea?


----------



## David

I wouldn't stop supplementing Jam.  We're not interested in how low you can go off supplements, we're interested in making sure your level is high enough ON the supplements.  If your level gets above 100ng/ml then you can lower your dose, but that is very unlikely unless you're taking huge doses.


----------



## Beach

I would keep taking the supplements up till testing.  That is what I have done.  Once the results are back make adjustments to the dosage, if more or less vitamin D is needed.


----------



## Igor_Passau

http://www.medicalnewstoday.com/releases/256750.php


----------



## CrohnsDaddy

Thought I'd give a quick update on my Vitamin D experience so far...

After reading this thread I decided to give Vitamin D a shot. While I was hoping for some improvement in Crohn's symptoms, my primary goal was to help with extreme fatigue and the lack of desire to do anything; the "nothing sounds fun" type of fatigue/depression combo that had become rather overwhelming. I also had pretty nasty "brain fog" that so many people with an auto immune disorder suffer from.

I started taking 6k I.U. of Vitamin D per day, along with Calcium and Magnesium on Feb. 6.

I didn't notice any change at all for the first week. Over the next few days, however, things started changing for the better.

As I write this, I am feeling better now than I have in years. Stuff sounds like it's fun and worth doing again, I have the energy to make it through the day, and (best of all) I'm Happy again. The "brain fog" has almost completely lifted as well. I even started Spring Cleaning without the wife's urging to do so (our bedroom carpet, walls, baseboards, doors, glass are all sparkling clean). I must admit, however, that starting on the garage Spring Cleaning is still a rather depressing thought. 

While I feel *much* better overall, I have not noticed a decrease in Crohn's symptoms from Vit D, but that could also be due to the fact that I'm not taking it at a high enough level to have an effect on CD. I'm not going to increase the dosage anymore, though, until I have my GI check my levels at my next appointment in May. 

While I can't (at least at this point) say that Vit D has helped my primary Crohn's symptoms, it has done wonders with the secondary symptoms (fatigue, depression, fatigue, brain fog, and fatigue) so many of us CD sufferers experience. *Edit*: I think I should add that another possibility for Vit D not helping with my primary CD symptoms could also be due to the fact that I've only been taking it for 21 days so far. That's most likely not enough time to feel the full effects/benefit of Vitamin D supplementation yet.

If you're at the point where doing the smallest things sounds like way too much trouble, you should at least consider adding some Vitamin D to your life. Hopefully you'll have results like mine... or better!

To me, it's pretty shocking that just a simple vitamin could be responsible for such an amazing change. I never would have imagined that such a simple thing could do so much.

Huge thanks to everyone for the information shared in this thread. Thanks to you, I feel *so* much better.

Now if you'll excuse me, I'm gonna go get to work on that garage....


----------



## David

That's fantastic CrohnsDaddy, I'm so happy for you!

Out of curiosity, how much magnesium are you taking as well?

I think that combo is a HUGE key for people with Crohn's disease.


----------



## 723crossroads

David sorry, I lost the stickynote with proper type of magnesium and dosage you recommend?? Could you plz refresh my memory? I did look at store for the Mag. citrate. They had oxide. Is that any good?


----------



## David

Oxide is the one you do NOT want because it is poorly absorbed.  Citrate is one of if not the best.  But be careful, sometimes the label will say CITRATE then you read the back and it is 80% oxide and 20% citrate. If those number were backwards, that's be fine.  And make sure that you don't get anything with magnesium stearate (a common filler in vitamins) as it can be toxic: http://articles.mercola.com/sites/articles/archive/2012/06/23/whole-food-supplement-dangers.aspx


----------



## 723crossroads

David said:


> Oxide is the one you do NOT want because it is poorly absorbed.  Citrate is one of if not the best.  But be careful, sometimes the label will say CITRATE then you read the back and it is 80% oxide and 20% citrate. If those number were backwards, that's be fine.  And make sure that you don't get anything with magnesium stearate (a common filler in vitamins) as it can be toxic: http://articles.mercola.com/sites/articles/archive/2012/06/23/whole-food-supplement-dangers.aspx


Thankyou so much! Got it all down!


----------



## CrohnsDaddy

David said:


> That's fantastic CrohnsDaddy, I'm so happy for you!
> 
> Out of curiosity, how much magnesium are you taking as well?
> 
> I think that combo is a HUGE key for people with Crohn's disease.


David, I gotta start by saying "Thank You!" to you directly. The information you have posted here about Vitamin D has been extremely valuable. I probably wouldn't have ever started it without the information you have given, as I'm one of those guys that won't do anything unless there is scientific evidence that it actually works.

Since I was in a hurry to start supplementing Vitamin D, I rushed out to the local health food store to grab enough to carry me over until the BioTech D3Plus gets ordered.

So for now, I'm taking:

Vitamin D: 6,000 I.U as Cholocalciferol in a base of Soybean Oil, Gelatin, Glycerin and Corn Oil

Calcium: 1,000 mg as Calcium Citrate

Magnesium: 500 mg as Magnesium Citrate and Magnesium Oxide (not happy about the Magnesium Oxide component, as it's been stated in various places that the Citrate form is much easier to absorb than the Oxide form).

I have enough of this combo to last for another two months, but after it is gone, I will be switching over to the BioTech D3Plus formula. The BioTech is much more expensive than the cheap stuff I'm taking now, but after getting these results, I'm not a bit hesitant to throw more money at a more effective formulation.

Thanks again, David!


----------



## 723crossroads

NaturalNews.com is a greatsource of info about vitamins and what to look for and what ingrediemts are truly harmful. Go to their website, I just got a newsletter and it's talking about this and Magnesium sources. Really good read!!!!


----------



## David

It's my pleasure but it has definitely been a community effort.

In my opinion, the magnesium you're taking is likely just as if not more important than the vitamin D.  I think the next big thing in Crohn's disease treatment will be proper magnesium supplementation.  Point being, keep it up   Have your doctor monitor you but I would be careful about dropping too low with the magnesium supplementation if the D3 biotech doesn't have as much.  I forget how much magnesium it has.


----------



## JohnnyRottenAppleseed

David said:


> Oxide is the one you do NOT want because it is poorly absorbed.  Citrate is one of if not the best.  But be careful, sometimes the label will say CITRATE then you read the back and it is 80% oxide and 20% citrate. If those number were backwards, that's be fine.  And make sure that you don't get anything with magnesium stearate (a common filler in vitamins) as it can be toxic: http://articles.mercola.com/sites/articles/archive/2012/06/23/whole-food-supplement-dangers.aspx


Is Natural Calm Mag good?


----------



## ***Lisa***

Anyway you slice it, this is great news CrohnsDaddy!


----------



## ***Lisa***

Also, the Recommeded Daily Intake (RDI) for Folic Acid is 400 MCGs. If you take this with your D3, I think you will notice that your CD symptoms will lessen more and more as time goes on.


----------



## 723crossroads

JohnnyO said:


> Is Natural Calm Mag good?


Someone on here mentioned it as being a good one. Just read the label or better yet, look it up online and get the facts from them.


----------



## jac521

My vitamin D level was tested and it is 12.  Whenever I try to take vitamin D it makes me very sleepy almost like a "drugged" feeling.  Has anyone experienced this when taking vitamin D?

Also, I bought an Ionic Magnesium supplement.  It is in liquid form and is supposed to have trace minerals in it.  Anyone familiar with this type of magnesium?

Thanks.
Jac


----------



## ***Lisa***

How much vitamin D are you taking a day (how many IUs)? Are you taking vitamin D3? Are you taking the Recommended Daily Intake (RDI) of Folic acid (400 MCGs), too? Generally, D gives the opposite affect as it gives you more energy, not less.


----------



## jac521

Lisa- I take 1,000 IUs of Vitamin D3. I have a messed-up body chemistry and get opposite reactions to meds.  For instance Benadryl will wind me up instead of sedating me like it does most people.  Pain meds that knock most people out will have the opposite effect on me.

 I am new to all of this and I honestly don't know anything about Folic Acid or its uses. (I am trying to learn though).

Thanks.
Jac


----------



## ***Lisa***

Jac - Have you discussed your supplements with your GI? Since you do not have the typical reaction, you should ensure that they work with you to come up with the best combination for you. You need to find a way to bring your D level up to the 30 to 80 ng/nl range. If your GI does not support vitamin therapy, try to find a good neuropathic doctor to work with. It will take some trial and error to find the right dosage, but you will find that it is worth the time and effort when you begin to feel better.

Lisa


----------



## 723crossroads

Magnesium is known to cause you to be relaxed and can actually promote sleep. According to what I 've read.


----------



## Spooky1

i'm about to visit doc and find out all my vitamin/mineral results.  Will be interesting.  can't wait to restart D3 and all those b vits again.  will keep you informed.


----------



## D Bergy

Research indicates vitamin D and Calcium reduces hip fracture rates in post menopausal women by over 30%

http://www.swansonvitamins.com/ru-a...re-rates.html?SourceCode=INTHIR508&mobile=off

Not directly related to this thread, but important.
Folic Acid reduces the chance of Autism in newborns.

http://www.swansonvitamins.com/ru-a...for-kids.html?SourceCode=INTHIR508&mobile=off

Dan


----------



## nogutsnoglory

Discussing D3 spray in another thread but wondering what everyone's thoughts on a spray being better absorbed?  

I'm considering this product http://products.mercola.com/vitamin-d-spray/


----------



## David

I've posted an interview with Dr. John Cannell of the Vitamin D Council.  It is located here and might be of interest to many of you reading this thread.


----------



## David

Here's a really interesting smart phone app for those of you looking to try to improve your sun exposure to increase vitamin D levels.


----------



## soccermom081105

I am new to the website and came across this..Recently my Vitamin D is low and the doctor put me on 2000 IU a day.. I have Crohns and MS and I am wondering if it is my diseses or if the fact that my Vitamin D is low that is making me so exhausted all the time.. I go to bed tired and wake up tired


----------



## David

Vitamin D can definitely affect fatigue.  What was your vitamin D level when you were tested?  The three big nutrients for people with Crohn's who are fatigued are vitamin D, vitamin B12, and magnesium.  Deficiencies in any of those can lead to feelings of fatigue and people with Crohn's are commonly deficient in any combination of them.


----------



## JohnnyRottenAppleseed

The paid app is amazing! I live the vitamin d calculator for location, skin exposure, uv index, and length of time outside. Thanks for making this!


----------



## David

Johnny, would you mind reviewing it in the actual thread as well please?    Thank you!


----------



## GotRawFoods

David, thanks for posting! I have found fermented cod liver oil to be the most beneficial for me.  It is unprocessed, therefore there has been no compromise to the vitamin content through processing(heating) the oil. I have noticed that I feel better and have better energy and clarity when I take it consistently.


----------



## soccermom081105

My level was 21 I think.. I know the doctor wants me to take 2000 iu a day and I have to get retested in June


----------



## Susan2

I was just listening to an interesting discussion on the radio. It was reporting some research done in Australia that showed that very young children with Vitamin D insufficiencies (their term) were much more likely to develop food allergies. Here in Australia, although we have plenty of sunshine, we have a very well established "slip, slop, slap" program and, unfortunately, this is causing one of the highest rates of Vitamin deficiency in the world.


----------



## CrohnsDaddy

soccermom081105 said:


> I am new to the website and came across this..Recently my Vitamin D is low and the doctor put me on 2000 IU a day.. I have Crohns and MS and I am wondering if it is my diseses or if the fact that my Vitamin D is low that is making me so exhausted all the time.. I go to bed tired and wake up tired


Interesting that you have both Crohn's and MS. I have a few MS symptoms, but they're not really serious, so I've never bothered to see a neurologist about it. Often wondered how many Crohn's sufferers also have MS or at least MS-like symptoms to some degree.

But I can certainly relate to how you're feeling... Extreme fatigue, lack of desire to do even the smallest things, going to bed tired, then having a difficult time sleeping, just to awake feeling even more tired after the little sleep you got. Been there, done that, got the T shirt and the coffee mug.

I'm happy to report that, in addition to the improved energy, Vitamin D has helped a *ton* with being able to go to sleep quickly, sleep longer between wake-ups, and feeling more refreshed in the mornings.

I'm still in the "this is too good to be true" stage; I certainly hope that this is a long term benefit of vitamin D supplementation, and not just a short term respite. I feel better than I have in years, and just don't want to lose that.

Vitamin D has given me my life back. Sound like an overly powerful, dramatic statement from an infommercial? Two months ago, I would have agreed. Too dramatic. Today? Not at all.

Now I'm not saying I'm ready to jump tall buildings in a single bound at all; I'm still not at what I'd consider 100% on the energy/fatigue scale, but I'm closer to it than I've been in the last 20 years. Let's say around 85% now with the vitamin D supplementation, and that's up from 1% before supplementing.

Hopefully adding in the additional vitamin D co-factors, some B12, folic acid, and a good quality mutivitamin will get me that last 15%.

Since you mentioned MS, I'll give an MS example of how vitamin D has helped me...

Prior to vitamin D supplementation, taking a hot shower was out of the question; I'd emerge from the shower drained of energy, weak, shaky, and nauseated. I can now take a hot shower. For the first time in 20 years I'm not freezing when I get out of the shower.  I still can't take a shower as hot as my wife does, but it's still nice to not have to take cold showers every day (although I'd forgotten what a hassle it is to have the bathroom mirrors fog up from a hot shower).

Give Vitamin D a shot. It certainly can't hurt, and you have the potential of improving your quality of life... a lot.


----------



## 723crossroads

Crohn's Daddy,
  So glad you are feeling so much better. That is wonderful and inspiration for those still struggling to climb out of bed or do simple things each day!!!


----------



## Dixiedoll23

Vitamin D really has done miraculous things for me as well.
However, I can't seem to get my levels past the "low range normal".Now after being on 100,000 units a week it was still just 22.I am 20 weeks pregnant, and my OB decided to bump me up to 150,000 units per week, so we'll see if that makes a difference.
When my Vitamin D was only 14 a couple of years back, I could tell it was very low and after my very first dose, I woke up feeling like a new person! It was amazing.I was so full of energy, mentally and physically but unfortunately it didn't last long.  I had a massive amount of fibromyalgia type pain that completely disappeared after a 50,000 unit pill.
Also, I think this is important to anyone who is experiencing RLS.I was off Vitamin D for a few weeks (unable to get my script) and started experiencing extreme RLS.It was so bad, I was only getting a couple of hours of sleep per night.I thought it had something to do with being pregnant, but after getting back on the D, I woke up in the middle of the night to use the bathroom and realized that was the first time I had been up and my legs weren't bothering me!At first I thought it may be some kind of coincidence, but I haven't had one bad night since being on D regularly!I remember with my second pregnancy I suffered through the same thing, and my OB at the time kept pushing magnesium on me.I was up to 3 pills a night, and it wasn't helping me at all.After doing some research I now know that you have to take Vitamin D and magnesium together in order for it to work, and I know there is mag in my prenatal vitamins although I'm unsure how much.Obviously enough to help though.I've also heard Vitamin B can help, but I haven't had any need to try it.There is some research on the net about RLS and Vitamin D, but not very much.
I would like to encourage all those who suffer from RLS to give D and magnesium a try.It worked wonders for me.I always thought that RLS was caused by being deficient on some kind of vitamin/mineral.I know alot of people who have crohns have RLS as well, and it makes sense to me at least, because having crohns means we are usually deficient on something since we don't absorb nutrients as well as others might.
Anyways, I hope someone will find this post helpful.I can't say enough great things about how good vitamin D is.


----------



## David

Dixiedoll, I'll bet any amount of money you're deficient in magnesium as well.  Supplement magnesium and I bet your RLS and fibromyalgia improve (both are symptoms of magnesium deficiency) if not disappear and your vitamin D will normalize much faster too (it's a co-factor for vitamin D).

People with Crohn's disease are COMMONLY deficient in magnesium and that prilosec you're on?  Yeah, the FDA put out a warning about that and magnesium.

I bet proper supplementation of magnesium makes an enormous difference for you (do it under supervision of your physician please).


----------



## 723crossroads

Good advice! I am getting some too if I can find it around here. Hope GNC has it.


----------



## D Bergy

People without Crohn's are commonly deficient in Mg. 

It is probably a given that someone with Crohn's is deficient. 

Dan


----------



## 723crossroads

The only kind I found so far is the mag oxide or stearate and it is not good for you. I can't get stuff online, so I have to look here. GNC should have it I would hope.


----------



## Spooky1

i got my results from doc, well, almost did.  She agreed to b12 being injected until i reach normal levels and then discontinue it.  Moreover, she refused to give me figures on the results so only said my vit d was 'adequate'.  she then harped on about her gp friend in melbourne Australia who said they're all deficient so don't worry about it.  Oh right.  Back on to my own supplementation me thinks!  Will try and get numbers for results from dietician when she does my peg change.


----------



## David

She refused to give you actual numbers?

"We're all deficient so that makes it ok".  Wow, amazing logic.

New doctor time.


----------



## CLynn

I make them give me copies of the results. They may not like it, but I insist. After all, it's my money paying for it, thru my insurance and my own money.


----------



## ***Lisa***

David is right. Time to get a new doc, for sure! At my daughter's doctor's office, we have to submit a written request for the results. After we send in the form, they send us the results - with the actual numbers - in the mail. Try calling your doctor's office and ask them if you send in a signed, written request, will they honor your request and send you the results? If they say "no," that is absolutely ridiculous as those are YOUR records!


----------



## kiny

They are supposed to give you a paper, that you can understand, with the numbers on them and the control values next to it, anything less is inexcusable, they are $20 tests.


----------



## Beach

She should give you the vitamin D3 results.  

If you still have trouble, in the future you can arrange your own D3 testing in the UK from City Hospital in Birmingham.  

"If your vitamin D levels are low, what’s a useful starting dose?"

http://www.drbriffa.com/2012/03/21/if-your-vitamin-d-levels-are-low-whats-a-useful-starting-dose/


----------



## Spooky1

Thanks for all your support.  I'll have words with my dietician, she's a lot more interested in me and my health.  Think my doc is young and new, she does come across as uninterested.

Might take a trip to Birmingham.


----------



## JohnnyRottenAppleseed

My doctors office mails all lab results to my home normal, or not. There is no need for secrecy.


----------



## CLynn

Ok, men...sorry for this, but have to ask the women on this thread...

  Has anyone supplementing D3 noticed a change in their menstrual cycle?


----------



## Spooky1

I was lucky if i weighed enough to menstruate, lol.  now i'm just through menopause.  Glucosamine didn't do much for the joints but helped with pmt when i got it.


----------



## CLynn

Well, I could be just getting into the menopause thing, maybe it's just a coincidence, the symptoms, and not the D3 causing it.


----------



## Sarah50

I second that emotion - thank you David, for supplying valuable info about Vitamin D!  I was told that I was low in Vitamin D two years ago by my doctor and never took it regularly.  I was diagnosed with Crohn's last fall. So.... after reading what you've posted, I just purchased "Osteo-Tech" from BioTech which contains both Vitamin D and Calcium - hoping to kill two birds with one pill.  It also contains the other vitamins that the article stated was needed with Vitamin D, I believe. Here's what this vitamin contains and you're supposed to take 4 capsules a day.  

Vitamin D   5000 IU
Vitamin K    145 mcg
Folate        800 mcg
B12           500 mcg
Calcium      400 mg
Vitamin C      66 mg
Phosphorous  164 mg
Magnesium    200 mg
Zinc             10 mg
Copper          1 mg
Manganese     5 mg

Proprietary blend:  boron citrate, horsetail, lemon bioflavinoids, lycopene, black pepper extract   524 mg

I hope this is just as good as taking the Vitamin D on it's own but if not, please let me know.


----------



## soccermom081105

I think I really need to really start taking the Vitamin D faithfully and Pro- Biotics... I am wondering if I am faithfully with the Vitamin D maybe I can get my fatique under control.


----------



## 723crossroads

I have noticed a difference from taking it. I upped my doasge to 5000IU. twice a day. But, always check with your Dr. before doing anything new.


----------



## David

What difference(s) have you noticed crossroads?


----------



## 723crossroads

I did notice a diff. in my over all joint pain, especially my neck and jaw pain. Also seemed to have more energy. I am taking 2~ 5000IU a day and b~complex and it has folic acid in it and vit. c too.


----------



## tots

I am still taking 50,000 of Vit d a day. I double checked and the pharmacist double checked and that's the dose he wants me on. My number was 18.


Lauren


----------



## Spooky1

i have terrible issues with neck pain and jaw pain too.  i just discovered that a memory foam neck support pillow helps at night.  I am taking vit d liquid at the moment even though doc said my level was adequate.  Sod her i'm thinking, i shall do what i feel makes me feel better.


----------



## 723crossroads

*Yes, mine was so bad for awhile there. Now I have been ok for about 2 months with that! YAY! It was such a terrible pain. I have fibromyalgia and that causes alot of weird symptoms too.*


----------



## 723crossroads

Spooky1 said:


> i have terrible issues with neck pain and jaw pain too.  i just discovered that a memory foam neck support pillow helps at night.  I am taking vit d liquid at the moment even though doc said my level was adequate.  Sod her i'm thinking, i shall do what i feel makes me feel better.


*I bought a memory foam topper 4 in. thick for my bed. We have been using it for 7 yrs. now. It helped with the pain so much. But, I can't stand the pillow!!!*


----------



## LISATHEGIRLS

Just joined this site.  Not sure how to start my own thread question??

Any help would be greatly appreciated!

Thanks!


----------



## 723crossroads

LISATHEGIRLS said:


> Just joined this site.  Not sure how to start my own thread question??
> 
> Any help would be greatly appreciated!
> 
> Thanks!


Go back to the main forum page, find Support Forum or whatever forum you wish to start a thread on. Click on that, and up top look for" New Thread". Click on and you have to give it a title and then start your thread. It isn't too difficult. Good luck.


----------



## ***Lisa***

tots said:


> I am still taking 50,000 of Vit d a day. I double checked and the pharmacist double checked and that's the dose he wants me on. My number was 18.
> 
> 
> Lauren


Hi Lauren:

How long have you been taking 50,000 IUs of D3? How long ago was your Vitamin D level tested at 18? I am a huge believer in the healing power of Vitamin D.

Lisa


----------



## tots

Lisa
This is my third month. I had the blood work done 
then. My B12 was 307.  According to him it was ok....
From what I read though at the ripe old age of 49 I could
(Pretty sure I do) still feel like its low.  


I am tired of having to fight for my medical care !!!



Lauren


----------



## soccermom081105

I have been reading all the threads. and I guess I am wondering if having low vitamin D is causing some of my joint pain.. But it is hard for me to tell why anything hurts for that matter


----------



## 723crossroads

I know how you feel. Been there. I had been feeling so much better and now not again. Am tired after 3pm and i have this cough that tickles my throat! I choke easily too! Maybe one of my meds!


----------



## T.A.R.D.I.S.girl

My level was a 7. She put me on D capsules for 6 months, they will check me again in June. There has just been soo much going on with my body, I'm not sure how well it's working.


----------



## CrohnsDaddy

soccermom081105 said:


> I think I really need to really start taking the Vitamin D faithfully and Pro- Biotics... I am wondering if I am faithfully with the Vitamin D maybe I can get my fatique under control.


For some people with Crohn's disease (certainly not *all*, but some), the "good bacteria" pro-biotics are a nightmare. Yes, some CD sufferers have great results with them, but for others, it's a sentence to the porcelain jail. Unfortunately, I'm one of those that has, for lack of a better term, "bacteria intolerance." After trying the different "good bacteria" pro-biotics over a one year period, I was in pretty bad shape. My doc started me on a Cipro/Flagyl course that had me straightened out in a week. Cipro/Flagyl is a well known and often prescribed antibiotic combo that often helps CD sufferers.

 From that day, I have sworn off "good bacteria" pro-biotics, substituting Sachromyces Boulardii yeast instead. S. Boulardii has been a God send for me. I have finally gotten the results with it that I was hoping for from the "good bacteria" pro-biotics. Now please don't get me wrong... there are many people that have gotten great results from bacteria pro-biotics, but if you end up being one of the ones that doesn't, S. Boulardii is a great alternative.

As for Vitamin D... Well, I worked in the yard for 12 hours straight yesterday, and I plan on completely ignoring my sore muscles; gonna do another 12 hours today. I've been supplementing Vit D for just over one month. I've added it to my daily CD meds so there's no chance of skipping it. To me, it's *that* important.


----------



## 723crossroads

*Happy you found something that really helps you Daddy!
Good job with the yard! Come on eover and do ours next, wouldya???:ylol2:*


----------



## CrohnsDaddy

T.A.R.D.I.S.girl said:


> My level was a 7. She put me on D capsules for 6 months, they will check me again in June. There has just been soo much going on with my body, I'm not sure how well it's working.


It took just over a week for me to start feeling the effects of vit D supplementation. It's been just over a month, and I'm still improving each day.

Please consider taking David's advice: supplement the Vit D co-factors along with Vit D to realize it's full benefits. Talk to your Doctor about it first, though.


----------



## 723crossroads

CrohnsDaddy said:


> It took just over a week for me to start feeling the effects of vit D supplementation. It's been just over a month, and I'm still improving each day.
> 
> Please consider taking David's advice: supplement the Vit D co-factors along with Vit D to realize it's full benefits. Talk to your Doctor about it first, though.


David said to get Magnesium citrate. I went to GNC yesterday and they gave me a liquid form and it says to use for constipation. Drink half the bottle! It's about a quart or less. Is this the wrong stuff? What kind do you take? Brand???


----------



## CrohnsDaddy

723crossroads said:


> *Happy you found something that really helps you Daddy!
> Good job with the yard! Come on eover and do ours next, wouldya???:ylol2:*


Thank you!! 

It's nice living in the desert... We don't have to shovel sunshine off the drive ways.:tongue:

The grass is growing, trees are budding, Mourning Doves fill the morning air with their sad song. It's a beautiful time of year.

And the fact that it's gonna be 75 degrees today doesn't hurt, either!

Kids are on Spring Break, so the yard might have to wait a bit today... Going to take them for a hike/picnic through the desert red rocks.


----------



## CrohnsDaddy

723crossroads said:


> David said to get Magnesium citrate. I went to GNC yesterday and they gave me a liquid form and it says to use for constipation. Drink half the bottle! It's about a quart or less. Is this the wrong stuff? What kind do you take? Brand???


Right now, I'm taking "Cal-Mag Citrate" made by "Solaray".

It doesn't have any Vitamin K in it, though, but it does have 1k mg of Calcium Citrate and 500 mg of Magnesium as Citrate and Oxide. I don't like the mag oxide part, but it's the best I could find here in my small town. Oh, it also has 1k IU of Vit D in it, but I take an additional 5k IU of D.


----------



## ***Lisa***

CrohnsDaddy said:


> For some people with Crohn's disease (certainly not *all*, but some), the "good bacteria" pro-biotics are a nightmare. Yes, some CD sufferers have great results with them, but for others, it's a sentence to the porcelain jail. Unfortunately, I'm one of those that has, for lack of a better term, "bacteria intolerance." After trying the different "good bacteria" pro-biotics over a one year period, I was in pretty bad shape. My doc started me on a Cipro/Flagyl course that had me straightened out in a week. Cipro/Flagyl is a well known and often prescribed antibiotic combo that often helps CD sufferers.
> 
> From that day, I have sworn off "good bacteria" pro-biotics, substituting Sachromyces Boulardii yeast instead. S. Boulardii has been a God send for me. I have finally gotten the results with it that I was hoping for from the "good bacteria" pro-biotics. Now please don't get me wrong... there are many people that have gotten great results from bacteria pro-biotics, but if you end up being one of the ones that doesn't, S. Boulardii is a great alternative.
> 
> As for Vitamin D... Well, I worked in the yard for 12 hours straight yesterday, and I plan on completely ignoring my sore muscles; gonna do another 12 hours today. I've been supplementing Vit D for just over one month. I've added it to my daily CD meds so there's no chance of skipping it. To me, it's *that* important.


Thanks for the insight, CrohnsDaddy. My daughter has been trying probiotics without any positive results this far.

Has anyone else had a similar experience as CrohnsDaddy with probiotics?


----------



## 723crossroads

CrohnsDaddy said:


> Right now, I'm taking "Cal-Mag Citrate" made by "Solaray".
> 
> It doesn't have any Vitamin K in it, though, but it does have 1k mg of Calcium Citrate and 500 mg of Magnesium as Citrate and Oxide. I don't like the mag oxide part, but it's the best I could find here in my small town. Oh, it also has 1k IU of Vit D in it, but I take an additional 5k IU of D.


*Thankyou so much! So do you buy it at the pharmacy there?*


----------



## CrohnsDaddy

723crossroads said:


> *Thankyou so much! So do you buy it at the pharmacy there?*


I picked it up at our local Mom and Pop health food/supplement store.

I'm pretty sure that the liquid you bought is the correct form of Magnesium, but I think the dosage they're recommending is for another condition entirely... 

If there's a way you can lower the dosage down to say 500 mg of mag citrate, you should be good to go.


----------



## ***Lisa***

CrohnsDaddy said:


> Thank you!!
> 
> It's nice living in the desert... We don't have to shovel sunshine off the drive ways.:tongue:
> 
> The grass is growing, trees are budding, Mourning Doves fill the morning air with their sad song. It's a beautiful time of year.
> 
> And the fact that it's gonna be 75 degrees today doesn't hurt, either!
> 
> Kids are on Spring Break, so the yard might have to wait a bit today... Going to take them for a hike/picnic through the desert red rocks.


Sounds like a perfect day!

She is taking Primal Defense probiotics and the first ingredient listed is S. Boulardii, but it sounds like you had better luck taking the S. Boulardii alone, i.e., not included in a combined probiotic formula, like Primal Defense.


----------



## CLynn

CrohnsDaddy, I have a friend, a guy I've known for many years, who was diagnosed with Crohn's while he was in college. He had the week long hospital stay, a G.I., the whole works most of us deal with. Anyway, after the first year or so, he's never had to treat, see his G.I., etc, because once his mom saw the side effects of all the meds they treat us with, she decided that was NOT happening and started researching. I know she gave him 3 different things, and the only one I can remember is, brewers yeast tablets. She intended to heal him naturally. So when I saw your post about what you take instead of probiotics, it made me think of that. 
  I know we all are aware that what works for one might very well not work for the next, I do have to give his mom some credit, he's mid 50's now and still has never had to treat. Like he never had it.


----------



## 723crossroads

CLynn said:


> CrohnsDaddy, I have a friend, a guy I've known for many years, who was diagnosed with Crohn's while he was in college. He had the week long hospital stay, a G.I., the whole works most of us deal with. Anyway, after the first year or so, he's never had to treat, see his G.I., etc, because once his mom saw the side effects of all the meds they treat us with, she decided that was NOT happening and started researching. I know she gave him 3 different things, and the only one I can remember is, brewers yeast tablets. She intended to heal him naturally. So when I saw your post about what you take instead of probiotics, it made me think of that.
> I know we all are aware that what works for one might very well not work for the next, I do have to give his mom some credit, he's mid 50's now and still has never had to treat. Like he never had it.


*My Mom had Ulcerative Colitis and a Dr. she sees for Gyno told her to take Red Yeast Rice. Claims it really helps digestive tract. Mom is taking it and she has been in remission 3 yrs. Although she does take Colazol I think it is.*


----------



## Spooky1

my mum had ulcerative colitis too.  She had all her colon removed though.  just wondering if you have tried it for crohns.  i'm being stupid by hoping high levels of vit d3 will be my 'cure'.  wouldn't it be brilliant if it worked well for the actual crohns and bones, not to mention mood uplift.

Shall get myself a support memory foam mattress too.

Why oh why do cats clamber all over the keyboard when you want to write omg?!


----------



## 723crossroads

Spooky1 said:


> my mum had ulcerative colitis too.  She had all her colon removed though.  just wondering if you have tried it for crohns.  i'm being stupid by hoping high levels of vit d3 will be my 'cure'.  wouldn't it be brilliant if it worked well for the actual crohns and bones, not to mention mood uplift.
> 
> Shall get myself a support memory foam mattress too.
> 
> Why oh why do cats clamber all over the keyboard when you want to write omg?!


Memory foam mattress cover I have is 4 in. thick and is called a topper. You will love it after you get used to it. It helps your weary bones! Red yeast rice is for all digestive problems she said. I didn't get it yet. I can barely afford all the supplements and copays now!:sign0085: Cats do that because they want to be where you are! :hug:


----------



## Spooky1

I'm another that seems to spend a small fortune on supplements, they seriously run away with the money, don't they.

might give the mattress topper and the red yeast rice a go and see if it helps.


----------



## 723crossroads

Let me know how you like them!!!


----------



## CrohnsDaddy

***Lisa*** said:


> Sounds like a perfect day!
> 
> She is taking Primal Defense probiotics and the* first ingredient listed is S. Boulardii, but it sounds like you had better luck taking the S. Boulardii alone, i.e., not included in a combined probiotic formula, like Primal Defense*.


There are a few pro-biotics out there that include S. Boulardii yeast in them, but unfortunately they usually include several different bacteria strains, too.

I'm going to try and summarize a rather lengthy discussion I had with my GI about gut flora (the organisms that populate our GI tracts).

Before we go down that road, though, let's talk about something else first... We've all had a skin cut that has gotten infected at some time in our lives, right? What happens when a skin cut becomes infected by bacteria? It gets swollen (inflammation), hot, red and painful. This is an immune system response to the invading bacteria.

Some GI's believe that people with CD have an inappropriate immune system response to normal "good bacteria" in the GI tract, similar to the skin cut responses already discussed. The amount of bacteria necessary to have such an immune system response varies from person to person. What would be considered to be a normal bacteria population would cause a CD sufferer to have a full-blown immune response (inflammation, etc.) whereas a normal person would have no immune response at all at the same bacteria level.

This is one of the reasons that the antibiotic combo Cipro/Flagyl brings great relief for some CD sufferers...it wipes out most all gut bacteria, bringing colonization levels below the level that triggered the immune response. The problem with almost totally clearing out the GI tract of bacteria using Cipro/Flagyl is that our GI tract wasn't designed to do the whole food digestion thing without help; certain microbes (including bacteria) are *essential* for the GI tract to do it's job correctly. 

One of the problems some CD sufferers face is keeping the flora correctly balanced; you want to have enough gut flora to keep everything working correctly, but not so much that it causes an immune response (inflammation, etc.)

S. Boulardii helps to keep the bacteria levels in check. It populates the GI tract in a never ending "turf war" with bacteria.

In my case, taking S. Boulardii by itself, and not supplementing any additional bacteria has been *very* effective, but remember: CD is unique from person to person. What works for one person often fails spectacularly for others.

Please talk to your doctor first before throwing *any* type of pro-biotic into your treatment regimen.

While S. Boulardii is a type of "brewer's yeast", there are many other yeast strains used in brewing. So to make sure I'm getting S. Boulardii, I take a product that is labeled "Sachromyces Boulardii" in a gelatin capsule. No other ingredients at all.

Sorry to go so far off topic... :blush:

Edit: Forgot to mention that there have been several scientific studies on S. Boulardi and it's effects on inflammatory bowel disease. When I get some time, I'll find them and start a new thread so we can let this thread go back to the Vitamin D discussion.


----------



## CLynn

Is it available in most stores, or do you order it online or buy it somewhere special?


----------



## CrohnsDaddy

CLynn said:


> Is it available in most stores, or do you order it online or buy it somewhere special?


The name brand S. Boulardii that is available pretty much everywhere is very expensive. I take the Yarrow Formulas brand, which I get from our local health food store. It's much less expensive. There are other brands, too, but the Yarrow Formula brand is carried locally and convenient.


----------



## CLynn

I believe I will be checking around here to see what's offered...small town so who knows, but we do have a health store.


----------



## sid

I take one Cal Mag D from nutrilite..it has calcium magnesium and  vit D but no vit k.this I take daily.I also take a dose 60,000 IU of vit d once in a week.


----------



## CLynn

Thanks for the reminder, Sid...I need to get my magnesium and calcium.


----------



## CLynn

Sid, do you take your D in a pill form? Is there a reason for just once a week?


----------



## Igor_Passau

Inflammatory bowel diseases (IBDs) are immune mediated diseases affecting the gastrointestinal tract. Several environmental factors in concert with genetic susceptibilities can trigger IBDs. Recently, one of the important environmental factors contributing to the development of autoimmune diseases is vitamin D (VitD) deficiency. Furthermore, some new evidence points to VitD deficiency and its receptor dysfunction as an underlying factor for the emergence experimental IBDs. The aim of the current study was to evaluate the correlation between serum 25(OH)D concentrations and IBD activity in patients with ulcerative colitis or Crohn's disease. Sixty patients with confirmed diagnosis of IBD were recruited for a cross sectional study. Most of the identified confounders affecting serum VitD concentrations were excluded. Disease activity was assessed using validated questionnaires, including Truelove for Ulcerative Colitis and Crohn Disease Activity Index (CDAI) for Crohn disease. Serum 25(OH)D concentrations were determined by chemiluminescent assay. Serum 25(OH)D≤10 (ng/ml) was considered as VitD deficiency and 11≤25(OH)D<29(ng/ml) as VitD insufficiency. Mean serum 25(OH)D value was 13.1 ± 11.1(ng/ml) in IBD patients. Almost 95% of patients were vitamin D insufficient or deficient. Forty one percent of IBD patients had active disease. VitD deficiency was not associated with IBD activity (p=0.23). However, VitD deficiency was significantly associated with a history of IBD related intestinal surgery (p=0.001). I*n conclusion, this cross-sectional prospective study suggested that there is no association between vitamin D deficiency and disease activity in a relatively small number of IBD patients in a short period of time.*
http://www.citeulike.org/user/KGelling/article/12142204


----------



## David

The problem with that study Igor is they used less than 29ng/ml as the deficiency cutoff.  I bet the results would be MUCH different if they used less than 50ng/ml as deficiency.  In my opinion, everyone needs to be above at least 50ng/ml with more like 70-85ng/ml much better.


----------



## sid

CLynn said:


> Sid, do you take your D in a pill form? Is there a reason for just once a week?


the one that I take daily is a pill form..thats just a normal calcium, mahnesium , vit D combo from nutrilite (amway).

The one that I take weekly is a bigger dose of 60,000 IU ..it comes in form of white granules in a small sachet...I take it with peanut butter. although am still unsure how much peanut butter should I use with tha once small sachet of 10 grams..currntly I take two tablespoonful..


----------



## CLynn

Ah, Amway. My parents used to sell Amway years ago, think they mostly sold it so they could get what they used for less money. I would think 2 tablespoons would be enough, but then, that's not a professional opinion, lol.


----------



## 723crossroads

My Mom used to too Clynn! Small world. I remember the products in our house!


----------



## CLynn

Oh, me too, Teresa. Once in awhile, going thru a random box from Mom and Dad's, I will run across some old something in it that is Amway, lol!


----------



## hugh

don't know if this has been brought up but i thought it was interesting.....
Another element (amongst thousands of others) in the complex relationship that we have with our gut bacteria?
*Reversing bacteria-induced vitamin D receptor dysfunction is key to autoimmune disease.*
http://www.ncbi.nlm.nih.gov/pubmed/19758226
_" it is proposed that the lower levels result from chronic infection with intracellular bacteria that dysregulate vitamin D metabolism by causing vitamin D receptor (VDR) dysfunction within phagocytes......
........Diseases showing favorable responses to treatment so far include systemic lupus erythematosis, rheumatoid arthritis, scleroderma, sarcoidosis, Sjogren's syndrome, autoimmune thyroid disease, psoriasis, ankylosing spondylitis, Reiter's syndrome, type I and II diabetes mellitus, and uveitis"_


----------



## 723crossroads

Hugh, that is really interesting! Thanx for sharing with us!


----------



## CrohnsDaddy

723crossroads said:


> Hugh, that is really interesting! Thanx for sharing with us!


Yes, it is. But...

Just going by the information given in the abstract, supplementing vit D appears as if it is not the answer. Removing the ability to interfere with vitamin D's benefits is the answer.

The abstract infers that some types of bacteria have the ability to prevent phagocytes (a category of immune system cell) from properly utilizing vitamin D. The way to fix that? Here's two direct quotes from the abstract: "Evidence has been accumulating that indicates that a number of autoimmune diseases can be reversed by gradually restoring VDR function with the VDR agonist olmesartan and subinhibitory dosages of certain bacteriostatic antibiotics." And: "Disease reversal using this approach requires limitation of vitamin D in order to avoid contributing to dysfunction of nuclear receptors and subsequent negative consequences for immune and endocrine function"

"VDR" in the above quoted text stands for Vitamin D Receptor.

My interpretation of the second quote: "Don't give the bacteria more vitamin D, as they'll work harder to interrupt it."

It would be very interesting to see a similar study, but changing the treatment method from the one they used to that of giving the maximum safe dosage of vit D in an attempt to overwhelm the bacteria's VDR inhibition abilities. 

At the very least, this does seem to at least partially answer the question of why some auto immune disease sufferers test low for vit D even after supplementing. But then again it's far too easy to read far too much into these things...One frame of a movie isn't enough to know the whole film...


----------



## David

My guess is that they're looking just at vitamin D and the vitamin D receptor when they should be looking at all the vitamin D cofactors as well.  For example, a zinc molecule is at the base of each finger of the vitamin D receptor and guess what mineral people with Crohn's disease are also commonly deficient in?  Then of course there's magnesium which is another cofactor of vitamin D which is intimately involved in over 300 metabolic reactions.  And on and on.  It's amazing how well our immune systems tend to function when they're provided all the vitamins and minerals they need to function.  It's like not putting oil in your car, wondering why it's having problems, and looking at the pistons under an electron microscope to see what is happening to them then trying to fix the damage to the metal you see with an additive that slowly corrodes away the rubber hoses in your car.


----------



## Spooky1

I think I agree with that, David.  But am I thinking that putting the D3 in my body isn't going to do much good after all.  I am desperate to get better.  I shall continue it and see what happens.  will do the co factors too.  thanks


----------



## JohnnyRottenAppleseed

Spooky1 said:


> my mum had ulcerative colitis too.  She had all her colon removed though.  just wondering if you have tried it for crohns.  i'm being stupid by hoping high levels of vit d3 will be my 'cure'.  wouldn't it be brilliant if it worked well for the actual crohns and bones, not to mention mood uplift.
> 
> Shall get myself a support memory foam mattress too.
> 
> Why oh why do cats clamber all over the keyboard when you want to write omg?!


I think that's what helped me. D3 has been the only constant since I achieved remission of symptoms.


----------



## JohnnyRottenAppleseed

It will help with depression and energy too. I  Take 8,000 a day.


----------



## CrohnsDaddy

Spooky1 said:


> I think I agree with that, David.  But am I thinking that putting the D3 in my body isn't going to do much good after all.  I am desperate to get better.  I shall continue it and see what happens.  will do the co factors too.  thanks


While I still haven't seen any improvement in my CD symptoms, supplementing vit D has helped a ton with depression and fatigue levels.

Vit D plays so many different roles... just because one of those roles might possibly be getting interfered with by bacteria doesn't mean that *all* of it's benefits are nullified.

Sure, it would be great to get some primary CD symptom relief, but the fact that I'm up off the couch and active in life again is enough to make me a firm believer in supplementing Vit D and it's co-factors.


----------



## ***Lisa***

CrohnsDaddy said:


> While I still haven't seen any improvement in my CD symptoms, supplementing vit D has helped a ton with depression and fatigue levels.
> 
> Vit D plays so many different roles... just because one of those roles might possibly be getting interfered with by bacteria doesn't mean that *all* of it's benefits are nullified.
> 
> Sure, it would be great to get some primary CD symptom relief, but the fact that I'm up off the couch and active in life again is enough to make me a firm believer in supplementing Vit D and it's co-factors.


While it is true that Vitamin D helps with easing depression after taking it for just a few weeks, it is also true that after taking it consistently for a longer periods of time (6 to 8 months), it helps any type of inflammatory disease, i.e., CD and even MS. I have a friend with MS and she recently told me, "My MS was very aggressive and it took almost 7 months for me to really start feeling better with the vitamin D, but once it started, things just kept improving. It's been 4 and a half years now that I don't have a flare up, my MS is in complete remission, I have not had a new lesion in my MRIs again and many of my old lesions disappeared. I'm completely symptom free ... There are a few people with Crohn in our group ... she started the treatment 5 or 6 months ago and just the other day she posted that she is completely symptom free."

The morale of the story is, if you are not taking Vitamin D along with the cofactors, start taking every day and if you are taking it but haven't noticed any improvement in your CD symptoms, keep taking it because once the serum level has built up in your body, your CD symptoms will slowly diminish. Don't give up on the Vitamin D. It is the key to long-term remission.


----------



## 723crossroads

That is so wonderful Lisa!!! Love Vit. D!!!!


----------



## Sarah50

***Lisa*** said:


> While it is true that Vitamin D helps with easing depression after taking it for just a few weeks, it is also true that after taking it consistently for a longer periods of time (6 to 8 months), it helps any type of inflammatory disease, i.e., CD and even MS. I have a friend with MS and she recently told me, "My MS was very aggressive and it took almost 7 months for me to really start feeling better with the vitamin D, but once it started, things just kept improving. It's been 4 and a half years now that I don't have a flare up, my MS is in complete remission, I have not had a new lesion in my MRIs again and many of my old lesions disappeared. I'm completely symptom free ... There are a few people with Crohn in our group ... she started the treatment 5 or 6 months ago and just the other day she posted that she is completely symptom free."
> 
> The morale of the story is, if you are not taking Vitamin D along with the cofactors, start taking every day and if you are taking it but haven't noticed any improvement in your CD symptoms, keep taking it because once the serum level has built up in your body, your CD symptoms will slowly diminish. Don't give up on the Vitamin D. It is the key to long-term remission.


Lisa, this is great information to know about Crohn's - for both long-term remission and depression!!!  Thanks for sharing!   


After reading through this thread a few weeks ago, I ordered the Vitamin D recommended from BioTech Pharmacal Vitamins - well, Vitamin D combined with Calcium and the other vitamins needed as cofactors.


----------



## ***Lisa***

Sarah50 said:


> Lisa, this is great information to know about Crohn's - for both long-term remission and depression!!!  Thanks for sharing!
> 
> 
> After reading through this thread a few weeks ago, I ordered the Vitamin D recommended from BioTech Pharmacal Vitamins - well, Vitamin D combined with Calcium and the other vitamins needed as cofactors.


Hi Sarah:

It's funny that you mentioned BioTech because I just received her D3 supplements from them last week, although she has taken D3 offered by other companies, as well, in the past. Glad you are giving it a go! Please keep in touch and let me know how the vitamin therapy goes and remember to be patient because you will see results if you continue to take the D3 along with the cofactors.

Lisa :smile:


----------



## Beach

Saw this vitamin D study today and thought it might be helpful for some.  

"Vitamin D improves energy production in muscles of vitamin D-deficient people"

http://www.drbriffa.com/2013/03/18/...ion-in-muscles-of-vitamin-d-deficient-people/

&

"Vitamin D supplements may battle muscle fatigue and improve efficiency"

http://www.nutraingredients.com/Res...n=Newsletter+Daily&c=fVY2cMwqpsaJq7Df88U3kg==


----------



## 723crossroads

I can't tell you how much better I am doing now that I am taking VitD3 two times a day 5000IU. each time and now liquid magnesium citrate. I need to find pill from . But my hand pain is so much better and my energy and my leg pain is all but gone. Plz try it if you haven't!!!


----------



## CrohnsDaddy

723crossroads said:


> I can't tell you how much better I am doing now that I am taking VitD3 two times a day 5000IU. each time and now liquid magnesium citrate. I need to find pill from . But my hand pain is so much better and my energy and my leg pain is all but gone. Plz try it if you haven't!!!


That is so good to hear. 

Makes my day when I hear of a fellow crohn's sufferer doing better.


----------



## 723crossroads

Thanx Daddy! Does your cockatoo dance too?


----------



## CrohnsDaddy

723crossroads said:


> Thanx Daddy! Does your cockatoo dance too?


LoL, yup. 

He's not a pet, though... He's a family member and treated as such, which, in our family, means he's spoiled rotten.

He'll be 16 years old in another few months. Still just a baby.


----------



## 723crossroads

Probably outlive you!!! We went to Parrot Mountain down by Dollywood and there was one like yours dancing and singing for us. Love them, but my oh my, the messes!!! I used to have birds!:lol2:


----------



## Spooky1

muscle weakness and joint issues are a big issue for me.  I'm definitely going to try d3 for around 6 months.  Sometimes I just can't use my arms and legs much at all.  I get to collapsing point.  I'm so hopeful that it helps improve my quality of life.  The research being presented in this thread is great reading, so thanks to all that posted.


----------



## 723crossroads

Spooky1 said:


> muscle weakness and joint issues are a big issue for me.  I'm definitely going to try d3 for around 6 months.  Sometimes I just can't use my arms and legs much at all.  I get to collapsing point.  I'm so hopeful that it helps improve my quality of life.  The research being presented in this thread is great reading, so thanks to all that posted.


Plx try the magnesium citrate too! It helps too alot. Read David's posts about it. It helped me. We are almost all deficient in both! If you don't eat tons of greens and or almonds, you don't get enuf! I just convinced my Dad to try it too. He def. doesn't get enuf!


----------



## Spooky1

will send off for some as I don't have the citrate.  looked for the osteobiotech stuff but couldn't find it here in uk.


----------



## 723crossroads

Hope you can get it and see what you think!


----------



## CrohnsDaddy

Spooky1 said:


> *muscle weakness and joint issues are a big issue for me*.  I'm definitely going to try d3 for around 6 months.  Sometimes I just can't use my arms and legs much at all.  I get to collapsing point.  I'm so hopeful that it helps improve my quality of life.  The research being presented in this thread is great reading, so thanks to all that posted.


Same here. Especially the muscle weakness and inappropriate muscle fatigue.

While I can't say that the vitamin D has helped with the muscle weakness and muscle fatigue issues yet, it has certainly done wonders for overall energy levels and "outlook on life".

Wonder how many CD sufferers also have muscle strength/fatigue issues?


----------



## 723crossroads

I betcha all of us!


----------



## Carol M

I'm always low on Vit D and have been supplementing for 4 years.  My doc's suggesting now that I'm just one of those people with a chronic low level.  Not sure how to proceed with regard to Vit D.


----------



## 723crossroads

Carol M said:


> I'm always low on Vit D and have been supplementing for 4 years.  My doc's suggesting now that I'm just one of those people with a chronic low level.  Not sure how to proceed with regard to Vit D.


Carol, how much do you take per day? I upped my dose from 1000 IU's a day to two 5000IU/Two times with folic acid and fishoil. per day and that made a great improvement!


----------



## JohnnyRottenAppleseed

Carol do you regularly take zinc and magnesium? If not, the D won't work.


----------



## Igor_Passau

Vitamin D Supplements May Offer Immune Benefits, Even In Healthy Individuals 

http://www.medicalnewstoday.com/releases/257978.php


----------



## 723crossroads

Thanx Igor, great article!


----------



## Jam300

I keep reading a lot of conflicting information that leaves me in doubt about whether my supplementation is actually doing me any good. I've just read that Vit A+D Cod oil tablets is a bad thing, which it seems was pretty common knowledge that i've somehow missed. Subsequently I won't be taking those pills any more.

Can I please be advised on what I should be looking for, lest I buy any more tablets that I find out are no good for me 

Vitamin d3, liquid or capsule? Taken with some sort of fat? and Magnesium? and Zinc now?


----------



## David

Carol M said:


> I'm always low on Vit D and have been supplementing for 4 years.  My doc's suggesting now that I'm just one of those people with a chronic low level.  Not sure how to proceed with regard to Vit D.


How many IUs of vitamin D have you been taking per day and what is your vitamin D level as of last test?


----------



## Grouchy

I do.  GP doctor started me on D3 5000 today.   



CrohnsDaddy said:


> ...
> 
> Wonder how many CD sufferers also have muscle strength/fatigue issues?...


----------



## 723crossroads

Jam300 said:


> I keep reading a lot of conflicting information that leaves me in doubt about whether my supplementation is actually doing me any good. I've just read that Vit A+D Cod oil tablets is a bad thing, which it seems was pretty common knowledge that i've somehow missed. Subsequently I won't be taking those pills any more.
> 
> Can I please be advised on what I should be looking for, lest I buy any more tablets that I find out are no good for me
> 
> Vitamin d3, liquid or capsule? Taken with some sort of fat? and Magnesium? and Zinc now?


I take D3 gels. They are small and easy to swallow. I went with a higher dose because it wasn't working before. Now I take D3 with a side order of Bcomplex that has zinc and folic acid in it and vit. c. I bought magnesium citrate and take that now too. Def. have noticed an improvement in my joint pain.


----------



## Jam300

Thanks for your reply crossroads. Does the D3 need the B complex to work properly? Do you take it with some sort of fat? Do you take the magnesium at the same time? What dosage of Magnesium do you use?

Sorry for all the questions, i'm just fed up of buying the wrong supplements!


----------



## Igor_Passau

High Vitamin D Helps Healthy People Stay That Way

http://www.medicalnewstoday.com/articles/258164.php


----------



## sid

May be someday we'll see a link to the cure of CD/many other deseases with vit D.


----------



## 723crossroads

Jam300 said:


> Thanks for your reply crossroads. Does the D3 need the B complex to work properly? Do you take it with some sort of fat? Do you take the magnesium at the same time? What dosage of Magnesium do you use?
> 
> Sorry for all the questions, i'm just fed up of buying the wrong supplements!


Books people recommend on here are;
"Inflammatory Bowel Disease" by Prof. JohnHunter
"Unwanted Baggage"'/Amazon has it they said
"Enteral Nutrtion" by Margerette Oppenheimer/ Has many diet suggestions for you.
The New" Eating Right for a bad Gut"By James Scalu PHD.
Hope this helps uout Jamm.
 I know that you should research the supplements you take because alot of the ones you buy in local stores contain "Not so desirable" ingredients. I am in the process of finding better ones myself. I will try to get back on here later after I gain more knowledge.


----------



## Sarah50

I found the following while researching nutrients important for the gastrointestinal tract - just more confirmation of Vitamin D:


Vitamin K and D deficiency and decreased bone mineral density (BMD) were highly prevalent in patients with inflammatory bowel disease (IBD), especially Crohn's disease.

Dietary intakes of these vitamins, however, were above the adequate intakes in IBD patients, suggesting that malabsorption is the basis for hypovitaminosis K and D and decreased BMD.

Vitamin D insufficiency has been linked to higher rates of cancers including colon cancer and gastrointestinal diseases, in particular IBD and colorectal cancer.

http://www.spectracell.com/media/pr...siderations-of-the-gastrointestinal-tract.pdf


*All the more reason to take the Vitamin D recommended by a doctor David spoke with at the beginning of this thread - from BioTech Pharacol:   Bio-Tech D3Plus  - that has the cofactors needed for absorption.*  Here's the link to this vitamin D.  I had ordered it and am taking it.


http://www.biotechpharmacal.com/catalog/d3plus/


From David's post on page 2 of this thread from the doctor:

"Vitamin D needs cofactors to work properly. If I had Crohn’s, I would definitely pay the extra cost and buy a vitamin D with the expensive K2, and mg, zn and boron. These are the cofactors vitamin D needs to work. For example, the vitamin D receptor is like a glove. At the base of the fingers of the glove is a zinc molecule. Most Americans are zinc deficient. The same is true for boron, magnesium and probably K2.

I recommend the new D-Plus from Bio-Tech Pharmacal. Make sure it is the new formula, not the old one. The dose is three pills per day for 5,000 IU, this is important as most people take only one or two and so are still vitamin D deficient. Take with largest meal of day."


:


----------



## 723crossroads

Sarah50 said:


> I found the following while researching nutrients important for the gastrointestinal tract - just more confirmation of Vitamin D:
> 
> 
> Vitamin K and D deficiency and decreased bone mineral density (BMD) were highly prevalent in patients with inflammatory bowel disease (IBD), especially Crohn's disease.
> 
> Dietary intakes of these vitamins, however, were above the adequate intakes in IBD patients, suggesting that malabsorption is the basis for hypovitaminosis K and D and decreased BMD.
> 
> Vitamin D insufficiency has been linked to higher rates of cancers including colon cancer and gastrointestinal diseases, in particular IBD and colorectal cancer.
> 
> http://www.spectracell.com/media/pr...siderations-of-the-gastrointestinal-tract.pdf
> 
> 
> *All the more reason to take the Vitamin D recommended by a doctor David spoke with at the beginning of this thread - from BioTech Pharacol:   Bio-Tech D3Plus  - that has the cofactors needed for absorption.*  Here's the link to this vitamin D.  I had ordered it and am taking it.
> 
> 
> http://www.biotechpharmacal.com/catalog/d3plus/
> 
> 
> From David's post on page 2 of this thread from the doctor:
> 
> Vitamin D needs cofactors to work properly. If I had Crohn’s, I would definitely pay the extra cost and buy a vitamin D with the expensive K2, and mg, zn and boron. These are the cofactors vitamin D needs to work. For example, the vitamin D receptor is like a glove. At the base of the fingers of the glove is a zinc molecule. Most Americans are zinc deficient. The same is true for boron, magnesium and probably K2.
> 
> I recommend the new D-Plus from Bio-Tech Pharmacal. Make sure it is the new formula, not the old one. The dose is three pills per day for 5,000 IU, this is important as most people take only one or two and so are still vitamin D deficient. Take with largest meal of day.
> 
> 
> :


Sarah, thankyou so much for sharing this with us!


----------



## Jam300

Thanks for sharing that info Sarah! Unfortunately I can't get that supplement in England, and I can't afford all the separate components. However the Vit D council do seem to prioritise Magnesium as a cofactor, followed by Zinc. So i'm going to order the Magnesium and try and eat some more Zinc containing foods, i'll see where that gets me for now.


----------



## Spooky1

same problem here, i'm having to stuff everything together as far as cofactors


----------



## David

Jam300 said:


> Thanks for sharing that info Sarah! Unfortunately I can't get that supplement in England, and I can't afford all the separate components. However the Vit D council do seem to prioritise Magnesium as a cofactor, followed by Zinc. So i'm going to order the Magnesium and try and eat some more Zinc containing foods, i'll see where that gets me for now.


I think that's a smart way to do it with the zinc from food.

How much magnesium do you plan to take, how often per day, and what specific type of magnesium?


----------



## Jam300

I ordered these tablets David: http://www.amazon.co.uk/dp/B000BV1O26/ref=pe_217191_31005151_M3_dp_1

They are 200mg pure Magnesium Citrate tablets. I was intending to take two per day for a week or so to raise my levels and then trial just one a day, is this sensible? Similarly, I ordered 360 5,000iu Vit D3 tablets. I haven't seen the sun in at least a fortnight so I was intending to take two a day for a week in order to boost my levels, is this wise?


----------



## Susan2

Dark chocolate is  good source of zinc :ybiggrin:

But, seriously, if you are having any tests done, it is worth having your zinc levels tested. Water supplies in some areas provide sufficient levels of zinc.


----------



## David

I believe those are 250mg of magnesium each.  I'd personally suggest starting with one of those either in the morning or evening.  If you don't have any negative effects such as diarrhea or increased diarrhea if you already have diarrhea, then taking one in the morning and one in the evening is what I would try next.

I think I'd try 5000iu of vitamin D for about 6 weeks along with the magnesium and then get my blood levels tested.  If the level was increased nicely from last time, I'd stick with 5,000iu to see how high it goes before it plateaus (getting tested again in 2-3 months).

Note that the magnesium can cause you problems if you have impaired kidney function so I always recommend doing it under the care of a physician.


----------



## Igor_Passau

Four research-proven benefits of omega-3 fatty acids
http://www.naturalnews.com/039674_omega-3_fatty_acids_health_benefits_research.html


----------



## 723crossroads

Igor_Passau said:


> Four research-proven benefits of omega-3 fatty acids
> http://www.naturalnews.com/039674_omega-3_fatty_acids_health_benefits_research.html


It's true too. My dr. couldn
t believe how low my triglycerides were last time I had blood tests done. My cholesteral is always good too.


----------



## Jam300

Thanks David, i'll take that advice. Turns out my step dad has a half empty bottle of Zinc, so I might use that up. 

I was wondering David, should I take these three supplements at the same time or throughout the day?


----------



## David

I step back and ponder how our bodies evolved to get the vitamins and minerals.  We evolved as hunter gatherers.  We were out in the forests and savannahs in search of food.  We'd walk around getting vitamin D and then find some plant that we'd eat which would provide us some magnesium and zinc.  Then we'd head off and do the same, rinse and repeat.  I personally try and mimic that if I supplement.


----------



## Cat-a-Tonic

David, you have to remember, lives were also very short and violent back in those days!  There wasn't a lot of cancer, and all diets were paleo, but just surviving childhood was a crapshoot.  Personally I'll take my cushy life where I have to get some of my vitamins from a bottle, over a life where I have to compete with neanderthals and other large predatorial mammals just to eat.


----------



## 723crossroads

Just watch The Bible mini series and see how even the rich lived then. No comforts of home like we have!


----------



## hugh

Cat-a-Tonic said:


> David, you have to remember, lives were also very short and violent back in those days!  There wasn't a lot of cancer, and all diets were paleo, but just surviving childhood was a crapshoot.  Personally I'll take my cushy life where I have to get some of my vitamins from a bottle, over a life where I have to compete with neanderthals and other large predatorial mammals just to eat.


i don't tink you're going to be attacked by a sabertooth if you go outside for a bit of sun


----------



## CLynn

hugh said:


> i don't tink you're going to be attacked by a sabertooth if you go outside for a bit of sun


  Well, in the part of the country I live in, you MIGHT run into a bob cat, but no sabertooths yet....lol!


----------



## amrycrohns

If I walked around chewing on plants I would probably kill myself.


----------



## Beach

Thought this interesting to point out about synthetic vitamin D verses naturally made sun expose vitamin D.  Naturally made D works more efficiently in the body over synthetic vitamin pills.  The reason being that up to a dozen other substances are manufactured in the skin from UVB exposure.  

Of course for many during winter time it is not possible to obtain vitamin D other than from pills.     

"Sunshine Superman"

http://www.proteinpower.com/drmike/supplements/sunshine-superman/

snippet from Dr. Eades's article:



> ...The trade off, in my opinion, is well worth it.  Especially when it’s possible to have the best of both worlds and avoid both the premature aging, minor skin cancers AND the breast, prostate and colon cancers (not to mention multiple sclerosis, osteoporosis, and the host of other disorders laid at the doorstep of too little vitamin D) by sensible sun exposure.
> 
> Dr. Holick tells you how.  He provides charts and tables telling you how much sun exposure you require for adequate vitamin D synthesis depending upon where you live in the world.  And he describes how you can make up any difference by taking vitamin D supplements.
> 
> Why not just take the supplements and forget about the sun?
> 
> Vitamin D made in the skin lasts at least twice as long in the blood as vitamin D ingested from the diet.  When you are exposed to sunlight, you make not only vitamin D but also at least five and up to ten additional photoproducts that you would never get from dietary sources or from a supplement.
> 
> Old Mother Nature is pretty parsimonious with her creations, and I suspect she wouldn’t have five to ten photoproducts circulating around if they didn’t do something good for us.  Just because we aren’t advanced enough yet to figure out what it is they do, doesn’t mean they don’t do something.  Thus Dr. Holick’s recommendation to hit the sun if at all possible instead of the supplement bottle.
> 
> Plus, there are some downsides to indiscriminately throwing back the supplements without monitoring your 25 (OH)D levels.  See here and here, for example....


&

"Proceed at your peril"

http://blog.vitamindcouncil.org/2012/05/21/proceed-at-your-peril/

From Dr. Cannell's sight:



> Dr Cannell discusses the possible dangers of completely avoiding all UV light and how supplements should not be your only source of vitamin D.


----------



## Igor_Passau

Fish Oil May Actually Enhance The Function Of B Cells

http://www.medicalnewstoday.com/releases/258458.php


----------



## Shrewsie

Vitamin D didn't prevent me from developing Crohn's. I've been on 50,000 IU's (a very high dose) for the past 3 years (after breaking my ankle) and was recently diagnosed April 2013 after 6 months of ongoing and terrible stomach symptoms. Just my $0.02.


----------



## tots

Shrewsie-

Do you make that everyday? I do and it sure helps me. 

How about B and B 12? I had mine tested Friday and will
get the numbers this week 




Lauren


----------



## ***Lisa***

Hi Shrewsie and Welcome to the Forum:

Glad you found this forum as there are lots of great people you can chat with about CD. 

What supplements, if any, did you take with the D3? If you do not take any of the profactors with the D3, it will not help ease Crohns symptoms or help prevent it. Some of the profactors I am aware of are:

Folic Acid
Magnesium
Zinc
Vitamin K

I'm curious if you have taken any of these profactors during the past three years.

Lisa


----------



## 723crossroads

Shrewsie said:


> Vitamin D didn't prevent me from developing Crohn's. I've been on 50,000 IU's (a very high dose) for the past 3 years (after breaking my ankle) and was recently diagnosed April 2013 after 6 months of ongoing and terrible stomach symptoms. Just my $0.02.


Maybe because people with crohn's don't absorb it. If you got the injections, it could help.:ghug:


----------



## tots

Is this kinda like what came first the chicken or the egg?

I think because we have CD we have a malabsorption 
issue. Therefor our Vit levels are low.  Not that because 
our levels are low did we develope CD


Lauren


----------



## Shrewsie

These are all good thoughts and theories! I definitely feel there could be a malabsorption component in a lot of people. 3 years ago I tested low for Vitamin D and B12, now that I'm on supplements my levels are better than normal. However I'm still in a Crohn's flare that started about 7 months ago. Perhaps my symptoms would be exceedingly terrible if I had never taken high dose Vit D?


----------



## Shrewsie

***Lisa*** said:


> Hi Shrewsie and Welcome to the Forum:
> 
> Glad you found this forum as there are lots of great people you can chat with about CD.
> 
> What supplements, if any, did you take with the D3? If you do not take any of the profactors with the D3, it will not help ease Crohns symptoms or help prevent it. Some of the profactors I am aware of are:
> 
> Folic Acid
> Magnesium
> Zinc
> Vitamin K
> 
> I'm curious if you have taken any of these profactors during the past three years.
> 
> 
> Lisa



My multivitamin has Folic Acid, Magnesium, Zinc, Vitamin K; Does that count? I also juice carrots, spinach and other veggies and fruit on a daily basis. In addition to the D and B12, I've been on 2000mg Omega 3 daily since 2005. I have a lot of food allergies which I've pretty much eliminated from my diet since 2007 (corn, wheat, chocolate and coffee). Is there more I could be doing? If so, I'm willing to try most reasonable vitamins, supplements and dietary modifications.


----------



## 723crossroads

Shrewsie said:


> My multivitamin has Folic Acid, Magnesium, Zinc, Vitamin K; Does that count? I also juice carrots, spinach and other veggies and fruit on a daily basis. In addition to the D and B12, I've been on 2000mg Omega 3 daily since 2005. I have a lot of food allergies which I've pretty much eliminated from my diet since 2007 (corn, wheat, chocolate and coffee). Is there more I could be doing? If so, I'm willing to try most reasonable vitamins, supplements and dietary modifications.


Do you eat processed foods at all? They should be eliminated as well. They can contain hazardous chemicals and GMOS we don't know about. Sugar should be eliminated because of the yeast factor. Do you take a good probiotic?


----------



## ***Lisa***

In addition to probiotics, L-Glutamine & S. Boulardii help a lot.


----------



## 723crossroads

***Lisa*** said:


> In addition to probiotics, L-Glutamine & S. Boulardii help a lot.


Sounds like you are doing the right things Lisa! Wish I could be of more help to you! Prayer too!:ghug:


----------



## ***Lisa***

723crossroads said:


> Sounds like you are doing the right things Lisa! Wish I could be of more help to you! Prayer too!:ghug:


Oh, thanks Teresa. My daughter is doing so much better and she is taking absolutely no meds, so it's very exciting! It's been a long, difficult winter, but now that spring is here and she's feeling better, she is gonna get out there and have some fun!

How about you? How have you been doing lately?

Lisa


----------



## 723crossroads

I have been having stomach problems and D off and on. But am not going through anymore tests. I have script for a stool sample, but it's useless. I don't have cdiff or parasites. I was already tested last yr for that. My last catscan didn't show crohns this time. But now am having symptoms. Either I have IBS or mild crohns. Not sure,but,Thanks tough.
I'm so glad your daughter is med free and able to go out and play!!!:yoshijumpjoy:


----------



## Spooky1

I've got D3 5,000iu with vit k2 in it.  I am at the mo taking 2 tablets a day with magnesium citrate and 50mg zinc + b vits in high doses.  I know vit D3 needs fat to absorb it, but I have huge issues absorbing any type of fat.  I'm taking it with a teaspoon of peanut butter.  just restarted 5 htp and organic apple cider vinegar for bad reflux.

I have stomach and duodenal ulcers and crohns in the PEG tract and I want to know if the cider vinegar is going to do it good or bad.  Any ideas anyone?
thanks


----------



## Beach

Saw that later in the day, 10am PST, Dr. Robert Heaney, a leading vitamin D researcher, is holding a webinar.  He is to talk about vitamin D and its impact on bone health.  

The sign up sheet for the 30 minute talk, and question submission, can be seen at the bottom of the links page.   

"The facts on vitamin D and calcium"

http://us2.campaign-archive1.com/?u=f545cba30e1f9697fddbe8acb&id=e661a64e18&e=d37488c337


----------



## 723crossroads

Spooky1 said:


> I've got D3 5,000iu with vit k2 in it.  I am at the mo taking 2 tablets a day with magnesium citrate and 50mg zinc + b vits in high doses.  I know vit D3 needs fat to absorb it, but I have huge issues absorbing any type of fat.  I'm taking it with a teaspoon of peanut butter.  just restarted 5 htp and organic apple cider vinegar for bad reflux.
> 
> I have stomach and duodenal ulcers and crohns in the PEG tract and I want to know if the cider vinegar is going to do it good or bad.  Any ideas anyone?
> thanks


I would think acid would be VERY bad!!!!Besides they proved it doesn't work anyway!


----------



## ***Lisa***

723crossroads said:


> I would think acid would be VERY bad!!!!Besides they proved it doesn't work anyway!


I agree. I would stay away from anything with acid in it. Taking the D3, zinc, vitamin K2 & magnesium will help alot. My daughter takes all those along with aloe vera liquid, calcium, L-Glutamine, S. Boulardii & probiotics and she is doing better everyday. She also is sure to get out in the sun, without sunscreen, for at least 20 minutes eveyday (everyday the sun is out, that is). She just had her blood drawn so we may add iron and B12, and other supplements, if we find she is low in anything.

Teresa - Sorry to hear you are having some issues. Please pm me now and then to let me know how yoy are doing.

Lisa


----------



## Shrewsie

723crossroads said:


> Do you eat processed foods at all? They should be eliminated as well. They can contain hazardous chemicals and GMOS we don't know about. Sugar should be eliminated because of the yeast factor. Do you take a good probiotic?


I consume very little processed food because most of it has hidden corn ingredients. I'm on a special probiotic  that my General Practitioner orders for me. I'm also on Nystatin daily to keep yeast and other gut fungus under control.


----------



## tots

Dr called with my Vit D level from Friday.

Oops, it's 110. Just. Little high- going to back down my 
50,000 a day to once a week.  



Lauren


----------



## 723crossroads

*LOL, That is amazing!:lol2:*


----------



## ***Lisa***

tots said:


> Dr called with my Vit D level from Friday.
> 
> Oops, it's 110. Just. Little high- going to back down my
> 50,000 a day to once a week.
> 
> 
> 
> Lauren


That's great! I've met many Crohnies who find that if they keep there D level a little over 100, they don't have flares as often as they did in the past. Very cool!!


----------



## tots

I am starting to slow down on the "episodes"
so maybe the Humira is kicking in along with the 
VitD. The joints in some of my fingers are giving
me a lot of trouble and my doc thinks its the elevated 
vitD.  I reminded him it was like this before I ever took
it! He wants to take a wait and see approach.  Ofcourse 
he does!!


Lauren


----------



## Spooky1

my docs don't like that I supplement with vitD3 etc.  Bit strange aren't they.


----------



## 723crossroads

Spooky1 said:


> my docs don't like that I supplement with vitD3 etc.  Bit strange aren't they.


That's because they don't make any money off it!


----------



## xmdmom

Well, actually it's because they aren't knowledgeable about it.


----------



## 723crossroads

xmdmom said:


> Well, actually it's because they aren't knowledgeable about it.


That too!


----------



## ***Lisa***

You both hit the nail in the head! Everyone knows that D3 is far more beneficial than D2 because the body absorbs D3 better. Absorption is key. Knowing this, why do you think that when my daughter's D was so low (so low it didn't even register on the test) that her GI prescribed D2 supplements rather than D3? Because D2 is only available by prescription and they make money when we fill the prescriptions they write. They don't make any money if they recommend you go to your local supermarket to buy a bottle of Vitamin D3. It will take some time, but once people realize the many benefits of Vitamin D3 and people start buying lots of D3 supplements, the medical establishment will not be happy because they aren't making a profit from those sales, so they will take Vitamin D3 off the shelves, hike up the prices, and will only allow you to get D3 by prescription so that the cash will start flowing their way again. Mark my words. This will happen. The only question is when.


----------



## Spooky1

I read the other day that you need a prescription for D3 in Germany if you want anything over 400iu's  its started.  stock up one and all.


----------



## 723crossroads

Spooky1 said:


> I read the other day that you need a prescription for D3 in Germany if you want anything over 400iu's  its started.  stock up one and all.


Ridiculous!:eek2:


----------



## Spooky1

I suppose the governments of this world cannot do without the billions they pay in taxes.  They would get scared if we all got well.


----------



## Beach

Thought this was a nice interview of Carole Baggerly, founder of Grassroots health and breast cancer survivor.  She discusses how taking vitamin D3, and some UV sun exposure, are thought to help prevent several cancers.  She also goes into testing ones D3, finding optimal testing levels.     

"Vitamin D Might Be Able to Slash Your Breast Cancer Risk by 90 Percent"

http://articles.mercola.com/sites/a...l&utm_content=art1&utm_campaign=20130512PRMRG


----------



## purdueCrohns

Vitamin D levels are something that you need to have checked by your doctor.  Absorption rates are different for everyone.


----------



## Spooky1

just out of interest, could I ask what dose people start on for D3 when looking to get their levels up?  I'm just wondering if there is a maximum level.  My doc doesn't like to test for D3 so I know I won't know what they are in future.  They don't particularly like people taking minerals and vitamins.  Strange, i'd do anything to help myself get well.


----------



## Beach

I've often seen it mentioned that 5000ius of vitamin D, and then testing 3 months later, as being a good starting point.  

Recall also Dr. Briffa writing about ways to test ones vitamin D levels in the UK.  City Hospital in Birmingham is a place he uses with patients.     

"If your vitamin D levels are low, what’s a useful starting dose?"

http://www.drbriffa.com/2012/03/21/if-your-vitamin-d-levels-are-low-whats-a-useful-starting-dose/


----------



## Spooky1

interesting info, many thanks beach


----------



## ***Lisa***

Spooky1 said:


> just out of interest, could I ask what dose people start on for D3 when looking to get their levels up?  I'm just wondering if there is a maximum level.  My doc doesn't like to test for D3 so I know I won't know what they are in future.  They don't particularly like people taking minerals and vitamins.  Strange, i'd do anything to help myself get well.


Hi Spooky:

I had the same issue with my daughter's GI. Even if I requested to have her Vitamin D level tested, they would refuse to test it even though they were already drawing blood for other tests. Very frustrating! :ybatty: So, I decided to buy my own blood spot tests and test it myself. I've used the test several times and it's easy. You can order them here: https://vitamindcouncil.zrtlab.com/

BTW - I wanted to know what all of my daughter's vitamin & mineral levels were so I kept taking her to various natural doctors until I finally found one who tests them every few months as part of her natural treatment plan. Keep looking for a doctor who believes in preventive natural treatments and they will test all of your vitamin and mineral levels on a regular basis. I think everyone should know what their levels are, have them checked on a regular basis, and supplement accordingly. How can we decide what dosage we should take unless we know what are levels are to begin with? Keep looking until you find a doctor who will test your levels every few months. It's the best way to help you make the right choices about your supplementation strategy.

Wishing you all the best!

Lisa utahere:


----------



## purdueCrohns

Start at 1000 units.  If your doc doesnt want to test the levels find a new one.  My doc wrote the textbooks used by most med schools and he is big on d levels. It is not just a natural medicine thing.
You want to get your levels tested professionally. Everyone treats d differently and dosage is tough to get right.  Your doc hould help you gettherre


----------



## Spooky1

No, British docs don't really care, they qualify and just turn up for their pay, then a good pension.  We can't force them to do anything, and changing docs is not always easy.  Have to see one in the catchment area of where we live.  Shame really.


----------



## Beach

Thought this an interesting, and in some respects, troubling article/advertisement.

"Are kids really being reckless for seeking the sun and shunning sunscreen?"

http://www.drbriffa.com/2013/05/30/...-for-seeking-the-sun-and-shunning-sunscreens/


----------



## 723crossroads

I've always allowed myself some time in the sun with no protection to get some vitamin D. But for me, 40 minutes is long enuf or I burn easy! I am Irish and pale as a ghost!


----------



## ***Lisa***

723crossroads said:


> I've always allowed myself some time in the sun with no protection to get some vitamin D. But for me, 40 minutes is long enuf or I burn easy! I am Irish and pale as a ghost!


I hear ya. Sunburns are not fun so it's important for us to know how much unprotected time we can have in the sun without getting burned.


----------



## 723crossroads

***Lisa*** said:


> I hear ya. Sunburns are not fun so it's important for us to know how much unprotected time we can have in the sun without getting burned.


About 20 minutes per side! HaHa! True!


----------



## Beach

723crossroads said:


> I've always allowed myself some time in the sun with no protection to get some vitamin D. But for me, 40 minutes is long enuf or I burn easy! I am Irish and pale as a ghost!


I'm largely northern European in ancestry also.  My genealogy is mainly Irish, English, and Swedish.  

I used to burn in the past somewhat easily.  Of late I've noticed that hasn't been the case.  Instead now I tan most of the time.  I've read of others experiencing similar once taking vitamin D supplements.  Once vitamin D levels are higher, burning becomes less common.  That probably isn't the case for everyone though.  

I guess too there is only so much vitamin D one can make from the sun at a time.  It depends on skin color, but for me probably after 10-15 minutes in the sun I've made all the D3 that I will.


----------



## Igor_Passau

http://www.medicalnewstoday.com/releases/261267.php


----------



## Beach

Saw today that the newspaper The Daily Mail has an article on the debate revolving around melanoma skin cancer and whether the sun plays a roll in its cause or not.  

It's a hot topic, and Dr. Briffa has a write up on the Daily Mail's article concerning the two sides debating points.       

"How does sunlight cause melanomas on the soles of the feet?"

snippet:



> ...In his piece, Sam Shuster points out that about 75 per cent of melanomas occur in relatively unexposed sites of the body. Elsewhere, he draws our attention to a form of melanoma known as acral lentiginous melanoma, where typical sites include the soles of the feet, palms of the hand and the inside of the mouth. The Daily Mail piece today even draws our attention to this paradox, including in its title which references ‘hotspots’ for cancers including the soles of the feet.
> 
> In his BMJ piece, Sam Schuster also draws our attention to the evidence showing that in Europe and the US, melanoma incidence and deaths due to melanoma fall as sun exposure increases.
> 
> Some say that it’s not sunlight per se that causes melanoma but intermittent sun exposure and/or burning, especially in early life (the counter-argument piece argues this position). Sam Shuster pours cold water on this theory though, by writing that this theory: “is easily excluded, because the melanomas would then occur at the burn sites; there is no evidence for this, and it is unlikely that any will be found, because sunburn occurs in sun exposed sites, and these are not the sites at which melanomas occur.”
> 
> The BMJ allows people to comment on articles on-line in the form of ‘rapid responses’. One of the rapid responses comes from surgeon who suggests that Sam Shuster has taken leave of his senses. Here’s an extract:
> 
> As a newly qualified doctor who spent 8 weeks last year studying at the Sydney Melanoma centre I was dumbfounded by the claims made against a link between sun exposure and melanoma. Having spent time with endless patients reporting hours of sun exposure and sunburn in earlier years and now presenting with cancerous lesions I believe that Dr Shuster may benefit from a similar “elective” in order to change his mind on the melanoma theory! Rubbishing the claims that the high incidences of melanoma do not occur in sun bathed areas seems bizarre.
> 
> Oh, dear. Notice the complete absence of reference to relevant science here. The observations this doctor made fit his pre-conceived beliefs so, voila, the answer is obvious (to him). There is a term for this sort of (faulty) thinking: confirmation bias. This doctor suggests Sam Shuster could do with an educational trip down-under, but I suggest he himself might take a trip to a relevant textbook or the internet to read about the scientific method.
> 
> But don’t lose complete faith in medical professionals just yet. Compare and contrast that first response with a later one which comes from another surgeon:
> 
> We most certainly do NOT know for sure that sunlight exposure is directly responsible for melanoma. As Schuster so rightly states, debate based on opinion is precisely what we don’t need in this area. We need hard evidence, and our profession isn’t always the best at offering advice on this basis....


The rest of the article can be read at:

http://www.drbriffa.com/2013/06/11/...ium=feed&utm_campaign=Feed:+drbriffa/sOZf+(Dr

And with that it is a gorgeous sunny day here in central Illinois!  Think after lunch I'll have to find time to soak up some sun for a few minutes.  

Something I've noticed since sun bathing a few times a week, for a few minutes at a time, is that my skin doesn't seem to be wrinkling as often said happens.  I suspect this is due to the short time I bath, and the antioxidant rich diet I eat.  If anything I'd say my skin appears healthier.


----------



## Beach

On Tuesday Dr. Holick, the discover of vitamin D3 if I remember correctly, is to hold an interesting online discussion.  The talk concerns the differences between obtaining vitamin D3 through sunlight exposure, verses through D3 supplements.  

The link to the free signup seminar is below.    

"Vitamin D: Sun or Supplement?" 

https://attendee.gotowebinar.com/register/5620434412034119168


----------



## JohnnyRottenAppleseed

I've been using the D Minder app developed by a fellow chronie. According to the app my blood level is around 80. I've been getting at least 1.5 hours of shn per week during correct times for maximum sun exposure. I usually get it in 20-30
Min sessions.


----------



## CrohnsDaddy

Hey everyone, thought I'd just drop in for a minute before work today for a quick update...

I started taking Vitamin D, calcium, magnesium supplements during the first week of February of this year. It's a few pages back in this thread. 

So here we are, six months down the road. Overall, I feel *much* improved since I started taking the Vit D, but it still has not had any significant effect on my CD symptoms.

I take Azathioprine as part of my CD management, and as you probably know, it's a very strong immune system suppressant. That being the case, I have quite a bit more than my fair share of upper respiratory infections, averaging one URI every six weeks. Since I started taking supplemental Vit D, I have had a total of two URI's in the last six months. Huge improvement.

Pretty much enjoying all of the benefits I previously posted.

I recently added a couple more supplements: a cheap multivitamin, and a METHYLcobalamin vitamin B12. Notice the emphasis on the "METHYL"... it's a relatively new form of b12. Do a Google search on it. : )

I'm about three weeks in to the B12, and have noticed as much of a benefit from it as I have from the supplemental D, especially with energy levels.

Aside from the primary CD symptoms, I'm doing the best I have in years.

Off to work... Wishing everyone the most CD-free day ever!


----------



## JudithC

To CrohnsDaddy.....Read your list of meds and liked  "Supportive Wife - 1 unit".    I will def go get the Methyl....B12.   Need some energy.   Thanks.


----------



## Spooky1

still got extreme fatigue despite b12 injections.  might try the methyl.  feel less anxiety from d3, mag citrate, calcium, zinc, super strong b vits.  crohns no better yet.  I live in hope.


----------



## CrohnsDaddy

JudithC said:


> To CrohnsDaddy.....Read your list of meds and liked  "Supportive Wife - 1 unit".    I will def go get the Methyl....B12.   Need some energy.   Thanks.


I can't imagine taking this "Crohn's Journey" alone. The support of my wife and kids is far more effective than any medication.

I hope the B12 is as effective for you as it was for me.  After reading up on fatigue, it (like so many other symptoms) has a myriad of causes, some treatable, others not. But at the base of this rather complicated puzzle is B12; it's one of the basic building blocks your body needs to keep the fire fueled.



Spooky1 said:


> still got extreme fatigue despite b12 injections.  might try the methyl.  feel less anxiety from d3, mag citrate, calcium, zinc, super strong b vits.  crohns no better yet.  I live in hope.


Best wishes, my friend.

It might be worth your time to seek out a physician that specializes in fatigue management and treatment.


----------



## Igor_Passau

Reducing Infections In Patients From Neurosurgical ICU Via Vitamin D Supplementation

Vitamin D influences many other physiological processes, including muscle function, cardiovascular homeostasis, nerve function, and immune response. Furthermore, accumulated evidence suggests that vitamin D also mediates the immune system response to infection.

Infections are very common in patients from neurosurgical intensive care units.

A recent study published in the Neural Regeneration Research (Vol. 8, No. 16, 2013) detected serum vitamin D level in 15 patients with clinically suspected infection and 10 patients with confirmed infection, who came from neurosurgical intensive care units. Serum level of 25-hydroxyvitamin D, the primary circulating form of vitamin D, was significantly decreased in patients with suspected or confirmed infection after a 2-week neurosurgical intensive care unit hospitalization, while serum level of 1,25-dihydroxyvitamin D, the active form of vitamin D, was significantly decreased in patients after a 4-week neurosurgical intensive care unit hospitalization.

These findings suggest that vitamin D deficiency is linked to the immunological status of neurosurgical intensive care unit patients and vitamin D supplementation can improve patient's immunological status.
http://www.medicalnewstoday.com/releases/263410.php


----------



## Beach

It is an observation study and with that doesn't provide proof.  Additionally it requires a membership to read the whole article, but thought interesting and thought to post.  From Dr. Cannell's sight:

"Does vitamin D keep Crohn’s patients out of the hospital?"

http://www.vitamindcouncil.org/blog/does-vitamin-d-keep-crohns-patients-out-of-the-hospital/

snippet:



> New research published in the journal Inflammatory Bowel Disease reports that higher vitamin D status is associated with a decreased risk of hospitalization and surgery for patients suffering from inflammatory bowel disease.
> 
> Crohn’s disease and ulcerative colitis are inflammatory bowel diseases, both characterized by extreme gastrointestinal problems and discomfort. Almost two-thirds of patients with Crohn’s and one-fifth of those with ulcerative colitis will eventually require surgery for management of their disease. Many patients with inflammatory bowel diseases will require hospitalization at some point for issues related to their disease.
> 
> To date, cross-sectional studies have found an association between low vitamin D levels and increased disease activity in Crohn’s. There has also been a randomized controlled trial that has shown that vitamin D supplementation can lower the rate of relapse (when disease activity flares-up).
> 
> In this study, Dr. Ashwin N. Ananthakrishnan and colleagues wanted to know if vitamin D modified the risk of Crohn’s and ulcerative colitis patients needing surgery or hospitalization....


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## sir.clausin

Ok, got to up those 25-Dihydroxyvitamin levels


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## JohnnyRottenAppleseed

So I just had my vit D tested and it came back 31 despite getting several hours of sun per week in sunny Los Angeles! I have been using the D minder app since march which is wonderful but I though I would be at around 70 vit D levels according to app and how much sun I've been getting. I have NOT been taking the vit d cofactors but started up on those again. Really tan and really bummed my D levels are not higher.


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## David

When I hear stories like yours Johnny, cofactors are the first thing I think of.  I'm glad you're working on those.


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## Beach

JohnnyO, I hope at least some of the time spent sunbath was at a few of the beautiful CA beaches!  I enjoy my time at the beach.  

Along with co-factor deficiencies, I've seen write ups on taking steroids for Crohn's being linked to severe deficiencies in vitamin D.  Not sure why that is.  

Also wheat sensitivity is associated with burning through vitamin D storage at quicker rates, leading to a deficiency.     

"Oral Steroids Linked to Severe Vitamin D Deficiency in Nationwide US Study"

http://www.sciencedaily.com/releases/2011/09/110929144639.htm

Saw another write up on vitamin D and co factors mentioned in the news, this time on improved sleep.  

"3 nutrients linked with a better night's sleep"

http://www.foxnews.com/health/2013/...ked-with-better-night-sleep/?intcmp=obnetwork


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## Mlg

As a newbie to Crohn's (recently diagnosed) but an expert in Melanoma (originally a small nodular with no spread to lymph nodes; three years later, ReCuRRent subcutaneous melanoma), let me strongly suggest this... Take the Vit.D and stay out of the sun. If you are fair skinned and light eyes, the sun will kill you.  My Crohn's was ironically discovered while I was having a CT to identify spreading melanoma!! Thankfully my Crohn's is treatable; the melanoma, not so much. .  If you can avoid melanoma, I suggest you take steps to do so.


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## purdueCrohns

I will be keeping you in my prayers


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## Spooky1

Mlg, if all else fails there might be encouragement from those who swear by alternative therapies on youtube or google.  I'm so sad for you.  Keep up the good fight, and we'll keep taking that D3.  Best wishes.


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## Sarah50

{{{Mlg}}}  prayers for you!  

I agree... protect from the sun and take Vitamin D3.  I was told I was deficient in Vitamin D a couple of years before Crohn's.  I'm going to order it again from the place that was recommended on here.  It has the cofactors included for Vitamin D absorption.

http://www.biotechpharmacal.com/catalog/d3plus/


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## Mlg

Thanks all for prayers and advice on vit D.  My oncologist suggests 1000 iu per day is suffice.  I had a complete skin checkup Monday and still no evidence of melanoma since July 2013. Dr said my prognosis is still poor, but I feel fine. My crohns symptoms always get worse close to appointments at the cancer clinic. Think my crohns doesn't like me 'getting naked' !?  Lol. Prayers are always welcome.


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## Spooky1

:ghug:Nobody likes to get naked in hospital, lol.  Wishing you all the best and a cancer free 2014.


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## wildbill_52280

Mlg said:


> Thanks all for prayers and advice on vit D.  My oncologist suggests 1000 iu per day is suffice.  I had a complete skin checkup Monday and still no evidence of melanoma since July 2013. Dr said my prognosis is still poor, but I feel fine. My crohns symptoms always get worse close to appointments at the cancer clinic. Think my crohns doesn't like me 'getting naked' !?  Lol. Prayers are always welcome.





*Therapeutic effect of vitamin d supplementation in a pilot study of Crohn's patients.*
Clin Transl Gastroenterol. 2013 Apr 18.

Author information
Department of Veterinary and Biomedical Science, Center for Molecular Immunology and Infectious Disease, University Park, Pennsylvania, USA.

Abstract

OBJECTIVES:
Low vitamin D status may be associated with Crohn's disease. A pilot study was performed in patients with mild-to-moderate Crohn's disease to determine the dose of vitamin D needed to raise serum vitamin D levels above 40 ng/ml.

METHODS:
Patients were evaluated for severity of symptoms using the Crohn's disease activity index (CDAI) and patients with mild-to-moderate (150-400 CDAI scores) Crohn's disease were entered into the study (n=18). Vitamin D3 oral therapy was initiated at 1,000 IU/d and after 2 weeks, the dose was escalated incrementally until patients' serum concentrations reached 40 ng/ml 25(OH)D3 or they were taking 5,000 IU/d. Patients continued on the vitamin D supplements for 24 weeks. CDAI, quality of life measures, bone mineral density, dietary analyses, cytokines, parathyroid hormone, calcium, and several other laboratory measurements were evaluated at baseline and after 24 weeks supplementation.

RESULTS:
Fourteen of eighteen patients required the maximal vitamin D supplement of 5,000 IU/d. Vitamin D oral supplementation significantly increased serum 25(OH)D3 levels from 16±10 ng/ml to 45±19 ng/ml (P<0.0001) and reduced the unadjusted mean CDAI scores by 112±81 points from 230±74 to 118±66 (P<0.0001). Quality-of-life scores also improved following vitamin D supplementation (P=0.0004). No significant changes in cytokine or other laboratory measures were observed.

CONCLUSIONS:
Twenty-four weeks supplementation with up to 5,000 IU/d vitamin D3 effectively raised serum 25(OH)D3 and reduced CDAI scores in a small cohort of Crohn's patients suggesting that restoration of normal vitamin D serum levels may be useful in the management of patients with mild-moderate Crohn's disease.


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## David

Thanks for sharing that wildbill.  I'd love to see what would happen if they added 600mg of magnesium to that equation.


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## Susan2

Hi David. Great to see you. Have things been going well for you?

We have a real Vitamin D problem here in Australia because our "slip, slop, slap" program has been so successful. It's now very difficult to persuade some people to go out in the sun for small amounts of time with bare skin and no sunscreen!


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## Spooky1

I had hideous issues using magnesium citrate and the extra (and painful) diarrhoea.  So have cut it out and have bought magnesium flakes to use transdermally.  If anyone has any advice on how much to slap on my skin each day I would be grateful as I actually felt better when taking the magnesium but could not cope with the additional loo visits and pain.

The d3 with k2 is doing me good. I think the arthritis in my neck has improved somewhat, also in my spine.  Believe me it's a relief although I still pop voltarol rub on the joints etc.


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## Mlg

Wild bill 5280, thanks so much for this article.  I will be running this past the Crohn's Doctor next appointment.  Sound promising.  And maybe, in the meantime, I'll throw caution to the wind and double the oncologist' recommended dose!


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## David

Spooky1 said:


> I had hideous issues using magnesium citrate and the extra (and painful) diarrhoea.  So have cut it out and have bought magnesium flakes to use transdermally.  If anyone has any advice on how much to slap on my skin each day I would be grateful as I actually felt better when taking the magnesium but could not cope with the additional loo visits and pain.


Was it pure citrate or one of those that says citrate in big letters on the front and then is more oxide than citrate if you read the back?

And how much did you take and was it all at once or split dosages?


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## Spooky1

It says magnesium (as magnesium citrate)  400mg.  I had been taking two a day, but had to knock them on the head as even trying to cut a tablet up (they're like little concrete bricks, lol) was still giving me problems.  There is nowhere to be seen the word oxide though.


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## DustyKat

Not related specifically to IBD and it is targeting older Australians but they are calling for volunteers now for a project that will assess the benefits of Vit D:




> The potential general health benefits of vitamin D supplements will at last be clear to Australians but it is going to take five years to find out.
> 
> The answer will come from a study of 25,000 people aged 60 to 79, one of the largest projects of its kind in the world.
> 
> That vitamin D is important for bone health is accepted, but it is not known what level is needed, says study leader Associate Professor Rachel Neale of the QIMR Berghofer Medical Research Centre.
> 
> "People receive conflicting advice about how much sun exposure they need," she says.
> "Australia is the skin cancer capital of the world. It may be that a vitamin D supplement is enough."
> Prof Neale says the jury is still out on whether vitamin D helps prevent cancer, heart disease and other illnesses.
> 
> "There has been enormous hype.
> 
> "We know a moderate level of vitamin D is important for our bone health. What we don't know is how much people need and whether supplementing people improves conditions like cancer.
> "We hope this study, linking with Medicare records and cancer registries, will provide some definitive answers and advice.
> 
> Prof Neale says Australia spends $150 million a year on vitamin D testing, despite the fact that testing is unreliable and "we don't even know what blood level to aim for".
> 
> The present recommendation is that people will achieve enough vitamin D with moderate sun exposure, but people who receive no sun exposure should supplement their vitamin D intake with about 400 international units a day, she says.
> 
> The outcome of the study could improve the case for mandatory fortification of foods such as bread, Prof Neale says.
> Royal College of Pathologists spokesperson Dr Paul Glendenning said the study would help answer important questions.
> "It will help determine if there is a case for routine supplementation and routine monitoring of vitamin D.
> "We understand that vitamin D has an action in many different parts of the body. This study will help answer whether the amount of vitamin D circulating in the blood is important to those diverse functions.
> 
> * Volunteers for the D-Health study should phone 1300 735 920 or email dhealth@qimrberghofer.edu.au.
> 
> http://news.ninemsn.com.au/health/2014/01/16/00/32/scientist-tries-to-settle-vitamin-d-hype


I was thinking I must just email them anyway and give them my views about Vit D and IBD. :eek2: Better still, I might just link them to this thread. :ybiggrin: 

Dusty.


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## xeridea

It turns out RDA for Vitamin D may have been wrong all along. New analysis shows statistical error may have underestimated recommended daily allowance by about 10-fold. 

This paper suggests *7,000 I.U.*, not 600, should be the recommendation.

http://www.mdpi.com/2072-6643/7/3/1688/htm


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## A.Sharifi

You may also consider this paper (search the title for full-text):

A randomized controlled trial on the effect of  vitamin D3 on inflammation and cathelicidin gene expression in  ulcerative colitis patients

*Background:* Inflammatory bowel disease (IBD) is an intestinal  chronic inflammatory condition and includes Crohn's disease (CD) and  ulcerative colitis (UC). It has been proposed that Vitamin D  supplementation may have a beneficial role in IBD. *Aim:* To characterize the effects of Vitamin D on cathelicidin (hCAP/LL37) gene expression, ESR, and serum hs-CRP levels. *Materials and Methods:*  Ninety UC patients on remission were randomized to receive 300,000 IU  intramuscular Vitamin D or 1 mL normal saline as placebo, respectively.  Before and 90 days after intervention, serum levels of 25 (OH)-Vitamin  D3, PTH, Calcium, ESR, and hs-CRP were measured. Cathelicidin gene  expression was also quantified using qRT-PCR. *Results:* Baseline  serum 25-OH-Vitamin D3 levels were not different between the two groups  and after intervention, increased only in Vitamin D group (_P_ < 0.001). Hs-CRP levels were lower in Vitamin D group after intervention (Before: 3.43 ± 3.47 vs 3.86 ± 3.55 mg/L, _P_ = 0.56; after: 2.31 ± 2.25 vs 3.90 ± 3.97 mg/L, _P_= 0.023). ESR decreased significantly in Vitamin D group (Before: 12.4 ± 6.1 vs 12.1 ± 5.3 mm/h, _P_= 0.77; after: 6.7 ± 4.5 vs 11.4 ± 5.5 mm/h, _P_<  0.001). The mean fold change in hCAP18 gene expression in Vitamin D  group was significantly higher than placebo group. (Mean ± SD: 3.13 ±  2.56 vs 1.09 ± 0.56; median ± interquartile range: 2.17 ± 3.81 vs 0.87 ±  0.53, _P_<,; 0.001). 
*Conclusion:* Decreases in ESR  and hs-CRP levels and increase in LL37 gene expression support the  hypothesis that Vitamin D supplementation may have a beneficial role in  UC patients.


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