Share Facebook
Crohn's Disease Forum » Diet, Fitness, and Supplements » High Levels of Vitamin D may help Auto-Immune Disease (including Crohn's)??


05-12-2014, 02:15 PM   #1
i_eat_constantly
 
Join Date: Jun 2013
High Levels of Vitamin D may help Auto-Immune Disease (including Crohn's)??

Hi All,

To preface, I think there is a great deal of misinformation on the web and in medical science about what constitutes a high level of Vitamin D per day. To set things straight, 15 minutes in the sun gives you in the range of 10,000 IU's of vitamin D, before we say anything. I do not consider anything in the 10k range "high." High means 20, 30, 100, 120 thousand.

With that said, does anyone supplement vitamin D to control crohn's? Could you please post your story?

Also, please check out this link and take a look at the YouTube video (ENABLE CAPTIONS IN ENGLISH), or read the English transcript on the webpage (that's what I did, instead). What are your thoughts?

If this is true for auto-immune disease, I am shocked. Also, I have heard 5-10 times of crohn's patients controlling their flares ONLY through vitamin D supplementation in the 60,000 IU/day range. For the record, I have very low vitamin D levels as well and have active crohn's. I'm on remicade now and in remission.

Love to hear thoughts thank you!
05-12-2014, 02:19 PM   #2
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
I take Vitamin D every day, but not to control my Crohn's. I've never noticed it having any impact, really.
__________________
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
05-12-2014, 02:26 PM   #3
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
I think that vitamin D studies do show this vitamin can be helpful and that many with IBD are lacking in proper levels. That being said I think we need to be careful about toxicity and very high supplementation because the body can only absorb so much without being toxic.
05-12-2014, 02:32 PM   #4
Clash
Forum Monitor
 
Clash's Avatar
 
Join Date: Apr 2012
Location: Georgia

My Support Groups:
There is/was a member whose daughter was on only vitamin D for CD. I think their user name was ***Lisa***, if I'm not mistaken. You might look through her posts or possibly tagging her she may respond.

My son takes vitamin D due to deficiency and now maintenance of levels.
__________________
Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
05-12-2014, 02:32 PM   #5
i_eat_constantly
 
Join Date: Jun 2013
I take Vitamin D every day, but not to control my Crohn's. I've never noticed it having any impact, really.

So do I, and I felt the same. How much do you take? As it related to 'high doses' above--anything near that? Were/are you deficient? Are you deficient in B2? Thanks!
05-12-2014, 02:35 PM   #6
i_eat_constantly
 
Join Date: Jun 2013
I think that vitamin D studies do show this vitamin can be helpful and that many with IBD are lacking in proper levels. That being said I think we need to be careful about toxicity and very high supplementation because the body can only absorb so much without being toxic.
I won't pretend I am a doctor, but under the right management, you can take high levels and monitor for this very clearly. Again, you are hitting these levels often with just exposure to the sun. My sister takes 30,000 IU's a day for example, and she is still deficient. I think this pertains to absorption issues due to lack of other mineral and vitamins too. It's definitely an approach that would necessitate individual blood testing and supervision and constant evaluation.
05-12-2014, 02:40 PM   #7
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
Actually, the body can regulate sun exposure. It's only supplements that can cause toxicity.

"Vitamin D toxicity is usually caused by megadoses of vitamin D supplements — not by diet or sun exposure. That's because your body regulates the amount of vitamin D produced by sun exposure, and even fortified foods don't contain large amounts of vitamin D."
http://www.mayoclinic.org/healthy-li...y/faq-20058108
05-12-2014, 02:47 PM   #8
i_eat_constantly
 
Join Date: Jun 2013
Interesting point! Though that article notes that it takes continued exposure at a higher level, somewhere in the 50k IU/day range.
05-12-2014, 03:03 PM   #9
i_eat_constantly
 
Join Date: Jun 2013
This excerpt is of particular importance with regard to the proper level. Can anyone confirm the legitimacy of this testing method? I am sure there are other factors at play.

The parathyroid hormone (PTH) is of extreme importance to us. Why? Because when administering vitamin D, vitamin D inhibits the production of parathyroid hormone. So, if I measure the parathyroid before starting to administer vitamin D and after 2 months, I use the lowering of parathormone (PTH what has dropped with the administration of vitamin D). I can use this as a parameter of the biological response to the effect of vitamin D. This is exactly the factor that we use to adjust the dose of vitamin D individually. If the vitamin D inhibits the production of PTH, I increase the level of vitamin D until the PTH reaches the value lower than normal. Do not suppress PTH, I only increase the vitamin D until the PTH comes close to the lower limit from the normal range of variation of PTH. From the production of this biological effect, I conclude that if vitamin D has achieved the maximum effect in the inhibition of PTH, must also have reached the maximum immunomodulatory effect. And, through this premise, we adjust the dose of vitamin D depending lowering of PTH. I can not suppress PTH, so as to make it undetectable, because if you suppress, I put the individual at risk. He's taking a dose so high in vitamin D, which could subtract a large quatity of calcium from the bones. Increasing this excessive amount of calcium taken from the bones, and raising the concentration bleeds, it can impair renal function. Thus, the parathyroid hormone for us is a safety measure, a level of security. If I do not suppress PTH, I'm sure I'm not giving toxic doses of vitamin D. I can balance in relation to biological resistance to the effects of vitamin D on the grounds that that individual has genetic inheritance. I say this in other words. An individual may be in need of a dose of vitamin D, for example, 30,000 IU, to make sure that his parathormone reaches the value less than normal. Another individual may need to 100,000 IU to ensure that its PTH reaches this lower end of normal. Then, measure how much you lower the PTH, for us it is a way to adjust the dose of vitamin D, for the individual need of the patient. The level of PTH is the most readily available laboratory tests, that can give us an idea of the strength of the person to the effects of vitamin D. There are other possibilities, other factors that we can measure. But the parathyroid hormone is made by all laboratories, it is a great thing. Many doctors ask the dose of PTH. So, a great test, a test is easily available at any place in the world. Somehow, I have already answered this question. A person who has a level of parathyroid near the upper limit of normal, this person probably has a level of vitamin D deficiency is very important. And they are getting calcium from the bones to maintain the calcium concentration of the blood, since it does not have enough vitamin D to absorb calcium from the intestine, from foods that transit in the intestine, which digests the intestine, due to the lack of vitamin D. Then, the person who has the parathormone near the upper limit of normal or above the upper limit of normal, that person has a very severe vitamin D deficiency. And this is something that varies so much for a person with an autoimmune disease.
05-12-2014, 03:20 PM   #10
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
I am not overly familiar with all the in depth stuff but I have two kids with Crohn’s, they are both in remission and I am doing my utmost to keep them there. As a part of that process I do supplement with Vitamin D and my aim for their blood serum levels is 120, that is an Oz measurement which I am pretty sure is equivalent to 70 in US levels.

I am also using Magnesium and Zinc, which are also monitored via serum blood levels.

Dusty.
__________________
Mum of 2 kids with Crohn's.
05-12-2014, 03:43 PM   #11
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
So do I, and I felt the same. How much do you take? As it related to 'high doses' above--anything near that? Were/are you deficient? Are you deficient in B2? Thanks!
Only 1000IU. And I don't think my Vitamin D or B2 levels get tested during my blood tests. I'll ask about it next time. The only thing I seem to be low on currently is ferritin (from what I've been tested for, anyway).

Looking at my diet, though, I think B2 is something I'd probably be fine on.
05-12-2014, 04:16 PM   #12
LodgeLady
Senior Member
 
LodgeLady's Avatar
 
Join Date: Sep 2013
Location: Westminster, Maryland
I have taken 2000mg Vit D for 4 years. It has helped me feel better but has done nothing to affect my new diagnosis of Crohns. Even taking this amount only brings my serum level to the 50% level of normal range. How much are you suggesting?
__________________

Entocort , Prednisone, Pentasa, ,Protonix, Xifaxan


Lots of learning.

Lots of praying.....

05-12-2014, 04:45 PM   #13
i_eat_constantly
 
Join Date: Jun 2013
Every individual is different. You will need to get tested to determine that. I am not a Dr. and cannot recommend what will work best for you. I know my levels were only mildly low and I started 5,000 IU's every other day. Eventually I bumped it to everyday and now I do 10k IU everyday. I get blood tests every month so I will be watching. I never really saw any difference because by the time I started I was on remicade and fairly under control.

Looking for other people's experiences and stories now to see what's going on out there. It tends to be that when people are doing well, they do not crawl forums as much unfortunately. Hopefully we can find some high dosers to add confirmation to the validity of the Dr's protocol above.

The Dr. above uses the parathyroid hormone to find the max range while still being safe. If it remains low level but not completely diminished, that is the goal.
12-11-2015, 03:28 PM   #14
xeridea
Senior Member
 
xeridea's Avatar
 
Join Date: Jul 2014

My Support Groups:
Here's yet another study supporting value of Vit. D supplementation for CD patients. Study showed that those on a higher 10,000 IU dose of D3 maintained remission after a year, while about 40% of those on a lower 1,000 IU dose relapsed.

Here is the write-up from the presentation at the recent AIBD 2015 conference, and this the clinical trial link.
04-20-2016, 10:33 PM   #15
scificionado
 
Join Date: Mar 2015
I read a book by Jeff T Bowles about extremely high vitamin D supplementation. It's available on Amazon.
So I started taking 20,000 IU a day of D3 with my daily regular dose of cal-mag-D3-K2.
Remember, 1 IU is only 20 mcg (not mg). Immediately I had normal formed stools and cut my BMs down to 2-3 per day. This was a first in my 20 years of CD. In fact, I had to take some fiber, since I was having trouble pooping.
That went on for 4 months. I just had a short hospital stay for a partial obstruction, but it didn't seem like a normal flare up. I think it may have been an old stricture + scarring + I ate a pear. Who knew pears are so high in fiber??
I'm on pred now but also taking D3 again. Only 8-10k IU per day since I had to order more. I'll let you know if I get the same result.
04-28-2016, 04:34 PM   #16
InstantCoffee
Senior Member
 
InstantCoffee's Avatar
 
Join Date: Dec 2012
Location: Connecticut

My Support Groups:
If you're gonna take big doses, take Vitamin K with it, helps regulate it and prevent toxicity.
__________________
Dx 05
Past drugs: Remicade, Azathioprine, Prednizone, antacids, Humira
Current therapy: Diet and supplements.
I'm my own guinea pig.
My log with studies, journal of my experiments:
http://www.crohnsforum.com/showthread.php?t=72046
My Blog
https://beyondtheoddsfitness.wordpress.com/
04-28-2016, 05:24 PM   #17
D Bergy
Senior Member
 
Join Date: Apr 2007
I agree with above. Since many of us have been on steroids, or will be at some time, D should be used with Vitamin K, good magnesium supplement such as mag citrate (not oxide). Also calcium if you avoid dairy products, again good calcium not from a mined mineral but egg shells or the like. None of it helps if you can't absorb it.

Mag to calcium ratio approximately 2 to 1.

This will help keep bones strong providing you do some weight bearing activity along with it.

As with most any other disease, higher D levels may be more effective at preventing Crohns than curing it. It good to see it may prolong remission.

My level is at 60 presently. My target is between 60 & 80.

No symptoms, but I do lots of things to keep it in check. The high D is more for general health reasons for me, but if it will help with Crohns, all the better.

Dan
Reply

Crohn's Disease Forum » Diet, Fitness, and Supplements » High Levels of Vitamin D may help Auto-Immune Disease (including Crohn's)??
Thread Tools


All times are GMT -5. The time now is 10:35 PM.
Copyright 2006-2017 Crohnsforum.com