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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Long To Eat Gluten Before Testing
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8 posts in this topic

When my doctor did a celiac panel a few weeks ago, I had been eating wheat for only a month or so. Is that long enough to give a good result?

I just found out I have a DQ2.2, which is "low risk" for celiac, and my celiac panel showed low enough levels of antibodies to be considered negative. Doc didn't test for DQ1, though I have much northern European heritage (Irish/German)

Just wondering about the time frame.

thanks.

beachbirdie

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When my doctor did a celiac panel a few weeks ago, I had been eating wheat for only a month or so. Is that long enough to give a good result?

I just found out I have a DQ2.2, which is "low risk" for celiac, and my celiac panel showed low enough levels of antibodies to be considered negative. Doc didn't test for DQ1, though I have much northern European heritage (Irish/German)

Just wondering about the time frame.

thanks.

beachbirdie

My understanding is that 3 to 4 months of eating the equivalent of 3 to 4 slices of bread a day is needed for a gluten challenge.

Even then some of us test "negative" for celiac's.

This is why it is so very important to be tested before going gluten free. But of course doctors don't tell us that <_<

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When my doctor did a celiac panel a few weeks ago, I had been eating wheat for only a month or so. Is that long enough to give a good result?

I just found out I have a DQ2.2, which is "low risk" for celiac, and my celiac panel showed low enough levels of antibodies to be considered negative. Doc didn't test for DQ1, though I have much northern European heritage (Irish/German)

Just wondering about the time frame.

thanks.

beachbirdie

I have Irish/German ancestry too, what more evidence do you need? :)

Kidding. I have read something like 6 weeks to three months of eating gluten, but the usual preference seems to be 3 months minimum. And there is still a chance of false negatives. You might want to read up on Enterolabs site. Dr. Fine has paper there suggesting that the blood tests are insensitive because they test the blood for antibodies, while most of the antibodies are actually inside the intestine. Testing the wrong area in other words. Sounds reasonable to me. I haven't tried Enterolab testing myself, but I think his ideas on that part of it sound right.

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My doctor told me two weeks would be enough, after a year of being gluten free (or at the very least gluten light since I wasn't very aware of CC)

My bloods came back neg.

On the uk coeliac charity site, they recommend one gluten containing meal every day for six weeks so it seems that ideas on this varies greatly (as if all of this wasn't confusing enough right? )

Good luck :)

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My doctors and dietitian all told me I absolutely must be eating the equivalent of four pieces of bread (at least) per day for three months (I had been off gluten for five months) for accurate results. As I did not have GI symptoms and love consuming gluten I was only too happy to oblige! :P But many would not be and I do not blame them one little bit.

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I have Irish/German ancestry too, what more evidence do you need? :)

Kidding. I have read something like 6 weeks to three months of eating gluten, but the usual preference seems to be 3 months minimum. And there is still a chance of false negatives. You might want to read up on Enterolabs site. Dr. Fine has paper there suggesting that the blood tests are insensitive because they test the blood for antibodies, while most of the antibodies are actually inside the intestine. Testing the wrong area in other words. Sounds reasonable to me. I haven't tried Enterolab testing myself, but I think his ideas on that part of it sound right.

:D LOL! I just mention the Irish/German thing because so many say there is a strong connection of celiac and northern European. More reading last night tells me my husband and I probably gave our kids a double gene whammy, two of them have strong reactions to gluten and my husband's Latin heritage probably contributed another gene. :huh:

I'm convinced now that with the one gene that I know about, my other autoimmune disease (Hashimoto's thyroiditis) and our symptoms, we don't need to pursue a diagnosis any further. We need to be gluten-free.

Thanks for your answer!

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Many thanks to all of you for your replies!

beachbirdie

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:D LOL! I just mention the Irish/German thing because so many say there is a strong connection of celiac and northern European. More reading last night tells me my husband and I probably gave our kids a double gene whammy, two of them have strong reactions to gluten and my husband's Latin heritage probably contributed another gene. :huh:

I'm convinced now that with the one gene that I know about, my other autoimmune disease (Hashimoto's thyroiditis) and our symptoms, we don't need to pursue a diagnosis any further. We need to be gluten-free.

Thanks for your answer!

Oh yeah, Hashimoto's thyroiditis is strongly linked with celiac disease. There are plenty of threads on here by people with Hashimoto's.

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
    • High Positive Test Results - Your thoughts please...
      With blood results like these, your husband most definitely has Celiac Disease.  The biopsy is just to check to see how much damage.  Keep in mind that even with high, high test scores like these, damage can still be patchy. Although I would be very surprised if they didn't find enough with numbers like these!  Thank goodness he was able to have a definitive diagnosis and reason for his symptoms!  Good luck!
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