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Crohn's Disease Forum » General IBD Discussion » Vitamin D deficiency and Crohn's


 
10-18-2014, 10:06 AM   #1
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Vitamin D deficiency and Crohn's

I don't have my diagnosis yet, my scope is scheduled for the 29th, but my GI doctor had me take 50,000 IU's of vitamin D for 4 weeks because of my blood test results. I finished taking the medication 2 weeks ago, and the leg and bone pain is back! Is vitamin D deficiency common in crohn's?
10-18-2014, 10:22 AM   #2
alex_chris
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I don't have my diagnosis yet, my scope is scheduled for the 29th, but my GI doctor had me take 50,000 IU's of vitamin D for 4 weeks because of my blood test results. I finished taking the medication 2 weeks ago, and the leg and bone pain is back! Is vitamin D deficiency common in crohn's?
It is very common for Crohn's patients, especially due to malabsorption in the terminal ileum (end of the small intestine) where vitamin D is absorbed - if you got inflammation, then vitamin D absorption can be severely affected.

Are you sure your GI doctor was prescribing 50,000 IU (that is 50 standard 1,000 IU tabs) per day? Or did you take that over the 4 week period? I am taking 2,000 IU and the FDA tolerance limit for adults is 4,000 IU. On the 50,000 IU level per day, that's what the internet says: "In healthy adults, sustained intake of more than 1250 μg/day (50,000 IU) can produce overt toxicity after several months and can increase serum 25-hydroxyvitamin D levels to 150 ng/ml and greater".

Hope you get diagnosed soon and can then start treatment if you currently got problems.
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10-18-2014, 10:28 AM   #3
T990
 
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It is very common for Crohn's patients, especially due to malabsorption in the terminal ileum (end of the small intestine) where vitamin D is absorbed - if you got inflammation, then vitamin D absorption can be severely affected.

Are you sure your GI doctor was prescribing 50,000 IU (that is 50 standard 1,000 IU tabs) per day? Or did you take that over the 4 week period? I am taking 2,000 IU and the FDA tolerance limit for adults is 4,000 IU. On the 50,000 IU level per day, that's what the internet says: "In healthy adults, sustained intake of more than 1250 μg/day (50,000 IU) can produce overt toxicity after several months and can increase serum 25-hydroxyvitamin D levels to 150 ng/ml and greater".

Hope you get diagnosed soon and can then start treatment if you currently got problems.
My GI doctor prescribed 50,000 IU's a week for four weeks. I didn't understand why they wouldn't want to check my levels after the four weeks in case my levels were still low, which I believe to be the case so I'll call on monday. Thanks, I hope I get my answer after my scope!
10-18-2014, 10:28 AM   #4
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Vitamin D deficiency is common in most people anyway unless you get adequate sun exposure and live closer to the Equator. It is even more of a deficiency in IBD.
10-18-2014, 11:41 AM   #5
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Make sure you take Vitamin D3 instead of D2. It is much more beneficial.
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10-18-2014, 11:45 AM   #6
T990
 
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Make sure you take Vitamin D3 instead of D2. It is much more beneficial.
Thanks for the advice, my doctor put me on D2 and I read something that said it wasn't as beneficial, that's something I'll bring up.
10-18-2014, 01:34 PM   #7
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Because a good majority of vitamin D is absorbed in the gut (I'm looking at you, small intestine), it is actually very common for people with Crohn's to have low levels. That being said, vitamin D deficiency is not rare in the healthy population, either. So it's not just Crohnies who have problems with vitamin D.
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10-18-2014, 04:48 PM   #8
David
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My GI doctor prescribed 50,000 IU's a week for four weeks. I didn't understand why they wouldn't want to check my levels after the four weeks in case my levels were still low, which I believe to be the case so I'll call on monday. Thanks, I hope I get my answer after my scope!
50,000iu a week and then stopping without any change in diet/lifestyle makes no sense. Your vitamin D levels will just drop back down.

I make an effort to spend time in the sun every day with as little clothing as possible and zero sunscreen. I then monitor my vitamin D level via blood tests.

It's not just vitamin D from the sun that is extremely important though. Other photochemicals are produced as well that scientists don't yet understand but no doubt play a pivotal role in human health. In many ways, humans not spending time in the sun is like plants not getting any sun. It's just plain not going to end well.
10-18-2014, 06:09 PM   #9
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I was prescribed 50,000 iu of D3 to take once a month for 3 months because I actively avoid sun due to being allergic to it and because I'm on Aza.
Not sure if it's the same in the rest of the world but there's as the incidence of skin cancer is very high here in NZ anyway, people on Aza are discouraged from any exposure to sun.

My levels were never tested though because the test is very expensive apparently.
So David, should I be asking for another script for D3 once I've finished this lot?
10-18-2014, 08:27 PM   #10
David
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If you're on AZA, yes, that's a good reason to avoid the sun

Unless something is way different in NZ, the test isn't that expensive. It's about $40.00 here in the USA. I personally think it is very important to monitor vitamin D levels because if you are taking oral vitamin D and your inflammation is extensive enough, it may affect its absorption. As such, having your levels tested over time will allow you to properly tailor your dosage.

Regardless, if you have to stay out of the sun, then yes, staying on vitamin D is a good idea. It doesn't have to be a prescription though. I'd suggest reading this interview I did with Dr. John Cannell who is pretty much the foremost expert on Vitamin D. It should answer all your questions.
10-18-2014, 09:14 PM   #11
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Thanks David, I'll ask again to be tested as I rather know the levels and then supplement accordingly than just randomly supplement.

Forgot to say that that interview was the reason I asked to be tested in the first place! I read it a while ago when I was first diagnosed with Crohn's, very interesting.

Last edited by Layla; 10-19-2014 at 07:33 PM. Reason: Forgot something
10-19-2014, 06:25 PM   #12
chuckmya
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My doctor checked my vitD levels after 12 weeks to see if we were gaining! I started @ 25 and am now @ 45 but I think the normal range is 30-100? I also switched to liquid Vit D3 and that made a bit of difference with absorption as well!!
10-19-2014, 07:08 PM   #13
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I was diagnosed last month and just last Thursday my gi doc told me d, fish oil, and calcium.
10-21-2014, 08:18 AM   #14
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This story was on the telly news this morning

http://www.standard.co.uk/news/healt...r-9056026.html

I did ask my GP if I needed to be worried about vitamin D and magnesium and other things, but he thought it was only B12 and iron that were worth testing for. I told him about this site and he said not to believe anything American!
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10-22-2014, 09:35 AM   #15
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Sounds like you have a real winner of a GP.
10-23-2014, 04:13 AM   #16
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He's pretty good on the whole. But in Britain the health care system is very much focused on spending as little as possible to keep you alive in the short term rather than ensuring your long term health.
10-26-2014, 07:06 PM   #17
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Vitamin D levels should be around 50-60. Taking 50,000/unit doses is not uncommon. I'm on that twice a week. Plus those of us who have had surgeries the absorption is not as efficient. Studies have shown maintaining a healthylevel of vitamin d contributes to lessening the symptoms of crohns. I'm on my phone but can google it later. Your doctor is not on his game if he is not supplementing you with vitamin d. Also you need blood tests to determine the level and to be sure it doesn't exceed around 80 or 100 be a use it does build up in your system.
02-03-2015, 11:47 PM   #18
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Well, I went ahead and paid for the test, which cost roughly the same as the $40 US you mentioned David, and the result was 66.

I thought that was pretty good until I realised it's not the same scale as the one used here

Turns out that 66 nmol converts to 26.4 ng/ml so I've asked my GP for a new script and she gave me 3 months worth of 50.000IU per month again.

It's summer here and while I'm now on MTX rather than Aza, the warnings are the same. However it's hard not to catch any sun and I'd been supplementing with sublingual vit d3 1000IU fairly regularly before I did the test plus the 50.000IU for 3 months before so I guess I'll need to keep asking for a new script every 3 months.

I was a little worried that she wouldn't give it at all because the minimum here is 50 which roughly translates to 20 but she had no objections, I hope it stays that way!

I can't say I notice any effect though, should I?
02-04-2015, 09:02 AM   #19
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Great discussion, happy to see you revived the thread with an update. In my experience, there's no substitute for vitamin D from the real thing - the sun. I go into remission in the summer months and am more prone to flares in the winter. There are also strong correlations between autoimmune incidence rates and sun exposure in the US. Google/Bing.. whatever.. many good reads. Also, in my experience only, taking 2000 IU/day of D3 in the winter has not "helped" me as I still get flares, but I'm not going to not take it to see what would happen without it. My suspicion is that it's not helping because you need to absorb it through digestion (difficult for us) and your body processes D from the sun through your skin.

Hopefully, someday, the Vitamin D angle will be fully thought out. All these powerful drugs with horrible side effects, and what if we could help ourselves by sitting in a UV tank for 20 minutes a day?
02-04-2015, 01:39 PM   #20
David
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Well, I went ahead and paid for the test, which cost roughly the same as the $40 US you mentioned David, and the result was 66.

I thought that was pretty good until I realised it's not the same scale as the one used here

Turns out that 66 nmol converts to 26.4 ng/ml so I've asked my GP for a new script and she gave me 3 months worth of 50.000IU per month again.

It's summer here and while I'm now on MTX rather than Aza, the warnings are the same. However it's hard not to catch any sun and I'd been supplementing with sublingual vit d3 1000IU fairly regularly before I did the test plus the 50.000IU for 3 months before so I guess I'll need to keep asking for a new script every 3 months.

I was a little worried that she wouldn't give it at all because the minimum here is 50 which roughly translates to 20 but she had no objections, I hope it stays that way!

I can't say I notice any effect though, should I?
To clarify, you are taking 50,000iu once a month and then 1,000iu once a day?
02-05-2015, 12:19 AM   #21
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I'm taking only 50.000iu once a month now.
I was taking the 1000iu a day (or more honestly when I remembered, probably a few times a week as I hadn't been tested at that stage) once the previous 3 month course was finished.

How quickly do your d3 stores deplete? I would have taken the last 50,000iu tablet early November and I was tested late December and I would have been supplementing with the 1000iu tablets and more sun than planned since early December.
02-05-2015, 01:18 PM   #22
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Calcitriol (1,25-dihydroxyvitamin D3), the active form of vitamin D, has a half-life of about 15 hours, while calcidiol (25-hydroxyvitamin D3) has a half-life of about 15 days. Vitamin D binds to receptors located throughout the body.
http://www.google.com/url?sa=t&rct=j...S7sHsLldD_CgKQ

I personally wouldn't expect someone with Crohn's to do very well with 50,000iu once a month and 1,000iu a few times a week. If you got tested a day or two after you took the 50,000iu, you'd probably get a higher reading that likely didn't represent your average level.
02-05-2015, 01:46 PM   #23
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I have some 5000 IU tablets which were the only higher dose ones I could find. I thought I'd take them for a few weeks then look for some lower dose supplements but they came 240 to a bottle!

I'm a bit reluctant to take that high a dose without someone telling me to, so I've been taking about one a week. So who knows? Not a lot of opportunity to get sun in England in February.
02-05-2015, 11:01 PM   #24
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I have some 5000 IU tablets which were the only higher dose ones I could find. I thought I'd take them for a few weeks then look for some lower dose supplements but they came 240 to a bottle!

I'm a bit reluctant to take that high a dose without someone telling me to, so I've been taking about one a week. So who knows? Not a lot of opportunity to get sun in England in February.
My GI has me taking 5000 iu daily, and my level is tested with my blood work every 3 months. I was just instructed to start 5000 iu in December with my first Vitamin D check. Before that, my GI had me on 2000 iu from the time of my diagnosis in October, since there was a high likelihood of deficiency.

I don't think 5000 iu should be an issue, but check with you GI or GP, and make sure they are monitoring.
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02-05-2015, 11:34 PM   #25
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I personally wouldn't expect someone with Crohn's to do very well with 50,000iu once a month and 1,000iu a few times a week. If you got tested a day or two after you took the 50,000iu, you'd probably get a higher reading that likely didn't represent your average level.
Thanks for that David!

Strange that they prescribe it this way then here.....
I'll check which type of D3 I'm getting and I guess I'll continue to supplement as well. Problem is that I haven't seen any higher dosages than 1000IU anywhere. I'll try on-line I guess.
02-05-2015, 11:35 PM   #26
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Vit D deficiency is common in the general population. We Crohnies bring it to a whole new level. My doc currently has me on 10,000 IU daily. I don't think that would cause a problem.
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02-06-2015, 09:57 PM   #27
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Both my kids are on 10,000uil's daily since 5,000uil did not made a difference. Time to test and see if they have better levels.
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03-15-2015, 07:02 PM   #28
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Can't believe that my lab.....LabCorp charges $250 for,the vit D test! And that was all out of pocket this time cause I hadn't reached my deductible yet!!! Ugh and I'm on a maintenance dose of 6000iu/day! Raised my levels to a value of 45....not bad since I started @ 25???
03-15-2015, 07:31 PM   #29
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Huh.

So I'm undiagnosed, but in the past 3 years my D levels have been 13 (took 4000iu d3 per day) up to 32 ( was told I could stop the D3) and most recently 25 ( taking 4000iu again). Due to be tested within the month, but man, would an explanation be nice.
03-16-2015, 01:32 PM   #30
David
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Can't believe that my lab.....LabCorp charges $250 for,the vit D test! And that was all out of pocket this time cause I hadn't reached my deductible yet!!! Ugh and I'm on a maintenance dose of 6000iu/day! Raised my levels to a value of 45....not bad since I started @ 25???

You can go through Labcorp and it is WAY less. I'd contest that unless they did some strange vitamin D test.
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