• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Vitamin D and Crohn's Disease

David

Co-Founder
Location
Naples, Florida
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?
 

Crohn's Mom

Moderator
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! :)
 
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.
 

My Butt Hurts

Squeals-a-lot!
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.
 

Jessi

Moderator
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.
 
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.
 
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
 
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
 

DustyKat

Super Moderator
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
 
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
 
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/
 

David

Co-Founder
Location
Naples, Florida
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 :)
 

Crohn's 35

Inactive Account
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 ;)
 

LOSTnut

Poopy
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.
 

Crohn's 35

Inactive Account
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.
 

David

Co-Founder
Location
Naples, Florida
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.
 
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
 

Crohn's 35

Inactive Account
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 ;)
 
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.
 
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.
 

Crohn's 35

Inactive Account
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:
 
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/
 
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.
 

DustyKat

Super Moderator
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. :)
 
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.
 
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?
 
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.
 
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
 
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
 
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
 
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.
 
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! :)
 
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
 
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.
 
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!
 

David

Co-Founder
Location
Naples, Florida
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.
 
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.
 
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.
 
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
 
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. :) :)
 
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! :)
 
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?
 
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.
 
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!
 
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

Co-Founder
Location
Naples, Florida
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.
 
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

Co-Founder
Location
Naples, Florida
Thanks for the link :)
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.
 
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.
 
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

Co-Founder
Location
Naples, Florida
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

Co-Founder
Location
Naples, Florida
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
 
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

Co-Founder
Location
Naples, Florida
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.

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

Super Moderator
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

Co-Founder
Location
Naples, Florida
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

Super Moderator
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

Inactive Account
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. :)
 
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

Co-Founder
Location
Naples, Florida
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

The Prettiest Princess
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.
 

Carrie630

The Prettiest Princess
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

Super Moderator
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...:rolleyes:...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
 
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!
 

mikeyarmo

Co-Founder
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.
 
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.
 
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

Co-Founder
Location
Naples, Florida
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.
 
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!
 
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.
 
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.
 
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.
 
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.
 
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.
 
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

The Prettiest Princess
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.
 
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.
 

Lisa

Adminstrator
Staff member
Location
New York, USA
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

Co-Founder
Location
Naples, Florida
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!
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.
 
Top