Vitamin D and Crohn's Disease

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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.:)
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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.
 
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.
 
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!
 
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.
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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.
 
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?
 
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.
 
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.
 
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
 
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.
 
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!
 
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.
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David,
What do you know about aloe vera juice 100% organic, inner gel only? For treatment of inflamation of crohn's? Crossroads723
 
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.
 
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.
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@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:
 
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. :)
 
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
 
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
 
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.
 
@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.
 
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?
 
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.
 
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.
 
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?
 
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?
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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.
 
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!
 
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!
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what makes you think that david ?? is it because I dont go shirtless or the timing ?
 
David said:
Both combined is what causes my concern.
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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.
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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.
 
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
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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 :D

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.
 
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.
 
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 :D

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.
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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.
 
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 :D

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.
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David could you recommened Vitamin D brand in liquid format, and how much UI it should be?
 
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?
 
SidS said:
David could you recommened Vitamin D brand in liquid format, and how much UI it should be?
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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?
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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 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.
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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.
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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.
 
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
 
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
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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.
 
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.
 
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:
 
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?
 
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:
 
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.
 
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
 
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!!)
 
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
 
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.
 
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!
 
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?
 
Phew, I don't know how the measurements work in the UK, but, in Australia, that would be perilously low.:ywow:
 
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?
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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!
 
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.
 
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.
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Thanks, I see him this week so will ask him about this! :)
 
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
 
Doc gave me Ergocalciferol(D2)... (1) 50,000 unit cap per week ...and ... Calcium 600/Vitamin D 4000 unit white tablets (2tabs daily)
 
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.
 
I take my Magnesium tablets with biodynamic full fat yoghurt at breakfast time. Seems to work for me. :)
 
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!
 
Gringo, I have read on here many times that taking vitamin D with fish oil capsules provides the fat needed to absorb the most.
 
**************************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
 
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!
 
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
 
David said:
I love this product though I don't know if you can get it down there.
Click to expand...

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.
 
It's a capsule :)

D3Plus%2C+180capnew.jpg
 
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
 
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.
 
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?
 
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
 
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
 
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
Click to expand...

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???
 
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
 
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
Click to expand...

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!!!
 
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!
 
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
 
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
Click to expand...

Thankyou so much for your insight!!!
 
723crossroads said:
This is amazing, I already take the vitD3 5000 units a day. Have to get folic acid now!
Click to expand...

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
 

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