Crohn's sufferers should be careful taking vitamin D supplements.

[Tired]

Usually the blood tests done for vitamin D is for it's 25-hydroxy form. When I did the test, it was very low. I have read that it was common for Crohn's disease.

But there is not much documentations as the reason for that, absorption might explain in part, but not for those who have adquate Sun exposure. I have read that vitamin D supplements are good for Crohn's disease.

Things got more complicated when I did a blood test for the active form of vitamin d, 1,25-hydroxyvitamin D. Results were high, off the chart. With a bit of reading I have learned why that is so.

Crohn's is a Granulomatous disease, and overproduction of the active metabolite of vitamin D has been described in granulomatous diseases because macrophages / histiocytes inside the granulomas convert vitamin D from its inactive form 25-hydroxyvitamin D to its active form 1,25-hydroxyvitamin D, resulting in elevated levels of the hormone 1,25-dihydroxyvitamin D.

This might also explain why those with Crohn's disease can have low 25-hydroxyvitamin D levels, because too much is being converted to the active form.

What might appear as a deficiency might actually reveal to be an overdose. So it might not be a good idea to take vitamin D supplements with calcium, this might either lead to hypercalcemia or physiological compensatory responses (e.g., suppression of the parathyroid hormone levels).

This abnormal vitamin D conversion might by itself be in part responsable in the regulation of the immune system much like it is suspected in sarcoidosis, which is another granulomatous disease.

With this info, I have stopped taking vitamin D, believing it's not a really good idea to take them.

1. http://www.uptodate.com/contents/hypercalcemia-in-granulomatous-diseases
2. http://www.ncbi.nlm.nih.gov/pubmed/15696436
3. http://www.ncbi.nlm.nih.gov/pubmed/9558297
4. http://www.ncbi.nlm.nih.gov/pubmed/22802372
5. http://www.ncbi.nlm.nih.gov/pubmed/18238746

 

[afidz]

Thank you for the info, it sounds like a great study

 

[rollinstone]

wow, thanks for posting this, very interesting

 

[Beach]

Interesting, thanks for sharing. I had not heard this before. It is good to test for high blood calcium (hypercalcemia) when taking vitamin D, whether with an inflammatory disease or if health.

I've read a couple of Dr. Michael Holick's books. He is the discover of activated vitamin D.

In some of his writings he talks about treating Crohn's patients with vitamin D, the different methods his team used to raise vitamin D levels successfully in patients, with sunlight and with pills, along with testing done.

From his web sight, an interview of his mentioning avoiding high calcium in patients, Crohns, & thyroid issues.

"Dr. Holick’s Responses to Participant Questions During the December 5, 2008 Live Webinar Presentation “Vitamin D & Chronic Disease Risk”"

http://vitamindhealth.org/2009/03/d...resentation-“vitamin-d-chronic-disease-risk”/

snippets from his interview:

...Is there a role in checking both 25 vitamin D an 1,25 vitamin D in inflammatory and/or autoimmune disease as 1,25 vit D is elevated in inflammatory states?
Response: For patients with inflammatory diseases, I measure a blood level of 25-hydroxyvitamin D. I only measure a 1,25-dihydroxyvitamin D if the patient has a high blood calcium (hypercalcemia). It is true that patients with sarcoidosis, tuberculosis and other granulomatous disorders can have an elevated blood calcium along with an elevated blood level of 1,25-dihydroxyvitamin D....

...With no parathyroid and taking calcitriol 0.125mg a day will a patient have any problems taking vitamin D? If not, what level do you recommend?
Response: Patients who have no parathyroid hormone and take calcitriol should also take vitamin D. These patients need to maintain a blood level of 25(OH)D of between 30 and 100 ng/ml. This can be accomplished as I have noted in my responses to previous questions for treating vitamin D deficiency and maintaining vitamin D sufficiency. I treat my patients with hypoparathyroidism with 50,000 IU of vitamin D once a week for eight weeks to correct their vitamin D deficiency, and then maintain their blood level of 25(OH)D of between 30 and 100 ng/ml by keeping them on 50,000 IU of vitamin D2 once every two weeks thereafter...

CROHN’S

...How does vit D supplementation help with Crohn’s and should supplements be oral or by injection?
Response: Patients with Crohn’s disease especially of the proximal small intestine often have difficulty in absorbing vitamin D. I take three approaches in treating and preventing vitamin D deficiency in Crohn’s patients. The first approach is to give 50,000 IU of vitamin D2 once a week or twice a week for at least 8 weeks to see if the vitamin D deficiency can be corrected. I also use the trick of having the patient cut the capsule in half and place it in milk or some other drink and to drink the content but not the capsule. The second approach is to give much higher doses of vitamin D as much as 50,000 IU of vitamin D once a day as long as the serum 25-hydroxyvitamin D reaches a level between 30-60 ng/ml and then tailor their dose to maintain this blood level. The third alternative is to have the patient go either to a tanning salon or to purchase a vitamin D producing lamp such as the Sperti lamp that you can purchase off of the web site Sperti.com. We showed in a patient with only two feet of small intestine left that she responded very well by being exposed to our tanning bed for 50% of the time recommended for tanning and wearing sun protection on her face three times a week. All of the aches and pains in her bones and muscles associated with vitamin D deficiency (osteomalacia) resolved, and her quality of life markedly improved after three months. We were able to maintain her in a normal vitamin D status by having her be exposed to the tanning bed once or twice a week thereafter....

 

[alex_chris]

Thank you, interesting read. I have started taking vitamin D supplements 18 months ago, which also coincided with me doing more sport and taking out supplements. I have been in deep remission as a consequence and additionally haven't even had a cold nor a day of sick leave in that timeframe - unprecedented in my life (I usually caught a virus or a cold a few times a year like most people).

Having said that, I have no idea whether vitamin D has helped me or not, however, given the amount of time I spend in the office indoors, I feel it helps me (just as it helps a lot of people who do not have Crohn's).

 

[nogutsnoglory]

I'm wondering if David or Judith can weigh in on this as I trust their extensive knowledge on vitamin D and IBD.

I'm concerned being that I have low D on blood tests and my rheumatologist now wants me on 50,000 IU weekly to combat my osteoporosis.

 

[helena101]

Very interesting, I too am deficient in vit D 0,25, but off the charts high in 1,25, and have been unsure about whether or not to supplement.

 

[wild_one353]

i was taking 8000 iu for about one month or two. my kidneys started to hurt, and that is a symptom of hypercalcemia.

i decided 1000 iu is enough.

 

[Beach]

I thought this might be of further help. In the expert section David conducted an interview of Dr. Cannell of the Vitamin D Council. In the discussion they touched on the subject of Crohns and vitamin D, calcium supplements, active 1,25OH₂D and PTH, and testing for elevated calcium levels.

"Interview with Dr. John Cannell of the Vitamin D Council (vitamindcouncil.org)"

http://www.crohnsforum.com/showthread.php?t=48140

 

[xmdmom]

Tired, I appreciate your post. There are several clinical trials re: supplementation of vit d in crohn's so hopefully there will be more clarity soon regarding what doses are safe and/or helpful in Crohn's and what type of monitoring is needed.

http://clinicaltrials.gov/ct2/results?term=vit+d+crohn's&Search=Search

It sounds like monitoring 1,25 vit d, and serum calcium in addition to 25vit d might be the way to go to make sure that one doesn't have excess active vit d while taking vit d supplements.

 

[DustyKat]

Thanks for posting Tired.

From what I read it doesn't look like it fits our situation.

Dusty. xxx