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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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CSherm

How Quickly Should Blood Tests Results Return To Normal After Starting Gluten-Free Diet?

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I was diagnosed wth Celiac last September, following a biopsy taken in connection with an endoscopy for an unrelated issue. When the biopsy results came back positive, My GI ordered blood work to confirm.

I'm not sure what the name of the test was but the lab report says "Celiac screen detects IgA and IgC antibodies to deamidated gliadin and tissue transglutaminase." The interpretation is normal at levels less than 20, weak positive 20-30 and positive for over 30.

My result in September was 211.

I have been on a gluten-free diet since then and am as careful as I can be. I have not knowingly eaten anything with gluten since then, and I am careful with label reading, food prep and restaurant choices. But because I have no "traditional" symptoms, it is hard to know if/when I have a cc issue. Some of my symptoms seem to have been helped by the diet, others not so much.

Following my dietician's advice (to repeat the blood test 6 months out) I asked my GI to order a new test two weeks ago, to see if my "levels" have returned to normal. The result of that test was 42. Much lower than 211, but still significantly positive.

I know that the damage that celiac causes to the small intestines can take time to heal. But I assume that the blood work should return to normal fairly quickly on a gluten-free diet, at least within 8 months between the tests.

I can think of three possibile causes for my positive result:

1. Despite not having traditional symptoms, I am highly sensitive, so that very small and infrequent cc issues are keeping my levels high.

2. My levels are in the process of going down and I'm doing fine with my diet, it just takes more than 8 months to go from 211 to below 20.

3. Something other than gluten else is causing the positive result. According to several sources I have read, a few other autoimmune issues can cause positive results.

So my main question is how long should it take for the blood test result to be normal after adopting a gluten-free diet? The answer to that question will help me decide whether to simply retest in six months, whether to consider other causes, or whether to tighten up what is already a pretty rigid gluten-free diet.

Thanks for your help.

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I would say there is no magic time frame that everyone falls under...depends on how high your levels were to begin with, how long you were sick, how your body heals, how strict you are about the diet, accidental glutenings, etc.

As six months I was much closer to the 'negative/normal' range but still slightly above it. As my levels were going in the right direction (DOWN!), and I had improvement in most of my symptoms the doctor who read my tests told me that I was on the right track and to continue what I was doing. He said to re-test at 1 year gluten-free to see how the numbers looked then. He said he would only worry if it had been 2 years (!) and I was still not in the 'negative/normal' range. He also said adults often take longer to 'heal' than children.

I'm not a medical professional but from the numbers you posted it looks like you're on the right track and have had a sizable decrease in your levels. Yay! If it is really worrying you, you take a moment to make sure you aren't getting 'hidden' gluten from something -- are all your meds (assuming you take some) gluten-free? What about lip balm, etc? Any chance of trace gluten getting you from CC issues in a shared kitchen? Do you eat out a lot? If none of that seems to apply it may simply take you a little more time. I wish that when I'd been given my diagnosis I'd been given a stern lecture on being patient because I've wanted everything to be better in a much shorter length of time that it is taking me to heal. This is obviously some sort of life lesson I needed to learn! :o

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I think it is different for each person.

My blood test went from positive to negative within two weeks of being gluten free.

My son's numbers barely moved after 6 months. At that time we "stepped it up" a bit, eliminating "questionable" things like gluten-free food that was "processed in a facility that handles wheat" and we stopped eating out - even if the place had a gluten-free menu (unless it was 100% gluten free). At his 1 year test, he is finally in the "normal" range. He is only 7 and does not have any physical symptoms so it was very hard to tell if we were doing it right. Turns out he just needed more time.

Cara

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Thanks for the responses. After I submitted my post I saw an earlier thread addressing a similar issue, and it does look like the consensus is that everyone is different.

I think I may keep my current routine for another few months and see where I am. If I'm still in the positive range I will look into places where I can tighten things up with my food strategies.

Thanks again for your responses.

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I think that from 211 to 42 is a massive drop!! Healing does not occur according to a doctor's preconceived time schedule. So long as you are keeping the gluten out the numbers will continue to go down, I am sure. Stay with the program!! :)

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