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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Did Your Vitamin D Levels Go Up?
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38 posts in this topic

I have tests only from a year back, so I think I am due.

 

October 2012:  30

June 2013  33  (have gone  up more by now)

 

Going up 3 points isn't very impressive to me.  Anyone else have some scores?

 

Dee.

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My D was at the low end of normal before diagnosis, when I was taking 2-3000 IU per day.  After 2 years gluten-free, and taking 10,000 IU per day my D is still at the low end of normal.  :rolleyes:  I blame some of that on living in Canada. LOL

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Hmmmm I seem to have lost a post so I am sorry if it is here twice.  My 33 was within normal, but it was on the border.  My nurse felt I should be midrange.  I am not sure what units were being used, perhaps later I can look it up.

 

Dee

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My ND told me to take 5000 iu per day as a minimum. The sun is supposed to be the best source of D. I live in So California so 10 minutes a day is the recommended time here. I haven't been consistent about doing it. The time needed depends on where you live, and the sun being out of course. Seems like even getting occasional sun might help if the supplements aren't doing it.

 

I don't know if D is one of those supplements that need to be taken with enough of something else for full absorption?

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I would like to know the answer to Fruit Enthusiast's question whether vitamin D is better absorbed with anything in particular.  I am having more doctors analyze how much I should be taking.  I guess it somewhat would depend on whether my levels have risen.  I guess I got my sunshine today!  All winter, though, I only stuck my face in the sun.  If one could get it through the windows that would be nice.  It is too cold in MN to venture out many days, but often the sun shines in through the window, but I have heard that you can't get vitamin D through glass.

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Mine was 19 at diagnosis, and was up to 29 at my 6 month follow up. My doctor said I should try to get it up to somewhere between 50-60 for optimal benefits. I had been taking 3000-5000 IU a day for 6 months, and it only went up 10 points. It must be a slow one to rise for some people. I am in Michigan and get very little sun too.

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I find it practically impossible to raise my vitamin D levels using supplements alone. I have both 5,000 I.U. and 1,000 I.U. and take them interchangeably with full meals that have a variety of food types but they don't seem to make much difference. Sorry, but I'm not sure where my latest test results are to see the numbers but I think I remember them only changing by about 2 points in six months the last time I had them tested. Of course, I don't take supplements every day, but I probably manage to remember 40-50% of the time because I still need to get my numbers up another 20 points or so.

But I tend to back off of taking supplements when I think that I'm experiencing side effects and vitamin D does have some serious ones when taking the higher-level doses or even lower-levels for too long. So I end up living in a "damned if you do, damned if you don't" sort of limbo. 

I keep trying to make a concerted effort to just get more rays but it is tough. I'm outside all of the time except in the winter, but normally in the shade.
 

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My level started at 17, which was actually before I was diagnosed, but one more clue confirming that I likely have celiac.  I started taking 5,000 I.U per day and 6 months later my level was up to 43.  I stopped taking the supplements and just had another level drawn, so we will see if I back slid at all once I stopped the supplements.

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I don't even know what my D level is. I haven't had it checked. I was taking 1000 I.U. daily as recommended by my GI, then my Naturopathic Dr. told me to start taking 5000 I.U. without getting my D checked first (I wonder about her sometimes). I'm not aware of any adverse affects, but I'd really like to get opinions about whether my D level is something that I should have checked. It sounds like most of you are testing your D levels on a somewhat regular basis?

 

It seems to me like a good idea to have any vitamin/mineral levels checked that can be dangerously low or high. When I ask my ND about checking them, she doesn't seem as concerned as I am (?).

 

Also, I do live in sunny So CA, but I'm a redhead and the sun actually hurts my skin when it's too intense, which is practically always in the summer. So, living in a sunny place isn't always the answer either :)

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I didn't take my supplements with anything and my D levels went up.

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That is interesting.  Did you get out more, or anything?

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Mine was 18 at diagnosis...slowly increased...holding steady in high forties...annual retest is October.

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That is interesting.  Did you get out more, or anything?

 

I don't think so.  I've always spent a lot of time outside.  I lived in that same northern city that whole time too.   I think that healing the damage caused by celiac disease probably helped with my vitamin D levels too.

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Should add that I did supplement for the first couple of years post diagnosis, but haven't been able to tolerate supplements for about three years now and my D numbers have continued to increase -- no change in outdoor activity -- I've always been an outdoors person as long as I am vertical ;)

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I asked my nurse if vitamin D needs to be absorbed by the small intestine.  She didn't think so, it went right to the blood stream.  Maybe one needs more vitamin D when they have celiac untreated?  Any other ideas?  Why would levels go up when one isn't supplemented? 

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I asked my nurse if vitamin D needs to be absorbed by the small intestine.  She didn't think so, it went right to the blood stream.  Maybe one needs more vitamin D when they have celiac untreated?  Any other ideas?  Why would levels go up when one isn't supplemented? 

 

All nutrients are absorbed better once the digestive system begins to function properly.  How is the supplement getting directly into the bloodstream?

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I was referring to vitamin D made the best way, by the sun!

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I was referring to vitamin D made the best way, by the sun!

 

Ah...still don't understand that mechanism because I was in the sun everyday with very few exceptions over the 43 years I was undiagnosed...had low Vitamin D for at least 10 years prior to Celiac Disease diagnosis -- likely a lot longer than that, but it wasn't a test that was run on me in my early years...only know I was anemic since I was 18 -- again was likely anemic earlier but 18 was my first blood test.

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I asked my nurse if vitamin D needs to be absorbed by the small intestine. She didn't think so, it went right to the blood stream. Maybe one needs more vitamin D when they have celiac untreated? Any other ideas? Why would levels go up when one isn't supplemented?

If you had Celiac, Levels would go up as you heal and can absorb it better from foods. It's spring/ summer - so you would get more from the sun. In the winter, the angle of the earth makes the sun very weak up where you live and harder to get any D through your skin.

Here is an explanation of how that works. It has to do with the skin and the liver.

http://health.howstuffworks.com/wellness/food-nutrition/vitamin-supplements/how-much-vitamin-d-from-sun1.htm

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If you had Celiac, Levels would go up as you heal and can absorb it better from foods. It's spring/ summer - so you would get more from the sun. In the winter, the angle of the earth makes the sun very weak up where you live and harder to get any D through your skin.

Here is an explanation of how that works. It has to do with the skin and the liver.

http://health.howstuffworks.com/wellness/food-nutrition/vitamin-supplements/how-much-vitamin-d-from-sun1.htm

 

Thanks Karen :)

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Did you lose any weight?  I haven't.  My weight is in the acceptable range.  The article sighted seems to be saying that fat cells can occlude its usefulness in the body, if I get it right.  I tried to read the whole article, but it kept returning me to page 1.  I did note that sunscreen blocks out the rays that our body makes it from.  I haven't used sunscreen for years and rarely get burned.

 

Dee

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Celiac disease affects all sorts of systems in the body.  I wouldn't be surprised if it is found to affect vitamin D production as well as absorption.  Perhaps that is why vitamin D levels go back up upon removal of gluten from the diet.

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I was 19 Dec 2010. Took 10000IU daily for a while, didn't get retested until May 2013 and it was 26. Went gluten-free in June and a year later I'm at 32. I have been slacking on Vit D supplement though. 

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Depending on where you live, getting Vit D from the sun isn't easy to get. Here we have only 3-4 months where the sun is at the right angle etc for absorption. The other 8-9 mos supplements are needed.

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