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Celiac Blood Testing--Help Please


KathrynL

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KathrynL Apprentice

My name is Kathryn and I've been gluten free for 10 months after a positive IGG test. I opted not to do the biopsy, and instead went completely gluten-free. I immediately felt better without gluten, but now I'm developing other symptoms that the GI thinks might suggest Crohn's. This GI is new and didn't do the igg blood test. He doesn't trust the reliability of that blood test, and wants to do the endomysial antibody IgA and TTG. For those, I need to start eating gluten again, which I'm dreading. I've already eaten my first gluten meal (pizza) and already been bloated, nauseous, and just ill. My doctor told me I only needed to eat gluten for 1.5-2 weeks in order for the antibodies to show up. However, I read online that it can take upwards of 1 month. Which is true? How long do I have to eat gluten to ensure the accuracy of the test? How much gluten do I need to eat each day?


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costellosfriend Rookie

Hi Kathryn:

I asked the same question about a week ago. I'm still not sure what the answer is. I've heard everything from 2 weeks to 4 months! I'm just finishing day 8 of eating gluten and am having no ill effects, but I don't have a positive diagnosis, so I may not have celiac or gluten intolerance.

I did have a little discomfort right at first, but I think you're going to have that with any change in diet. It could be it'll get easier for you with time. If it doesn't, I'd advise you to go for as long as you can stand then have the test.

Very frustrating that you have to go through this.

Good luck!

Jestgar Rising Star

Do YOU care if you have a positive test result? Because if YOU don't care, there's no reason to do the tests. You feel better not eating gluten, and they can test for anything else regardless of what you eat.

MsCurious Enthusiast

My name is Kathryn and I've been gluten free for 10 months after a positive IGG test. I opted not to do the biopsy, and instead went completely gluten-free. I immediately felt better without gluten, but now I'm developing other symptoms that the GI thinks might suggest Crohn's. This GI is new and didn't do the igg blood test. He doesn't trust the reliability of that blood test, and wants to do the endomysial antibody IgA and TTG. For those, I need to start eating gluten again, which I'm dreading. I've already eaten my first gluten meal (pizza) and already been bloated, nauseous, and just ill. My doctor told me I only needed to eat gluten for 1.5-2 weeks in order for the antibodies to show up. However, I read online that it can take upwards of 1 month. Which is true? How long do I have to eat gluten to ensure the accuracy of the test? How much gluten do I need to eat each day?

Hi KathrynL,

So sorry you have to face a gluten challenge. I know you can hear many different versions of what that entails, and even different doctors seem to give different answers, but this video clip is Dr Joseph A Murray, head of celiac research at Mayo Clinic, Rochester, MN. It's a bit technical and really directed toward doctors, but if you watch it, he will tell you what the gluten challenge consists of timewise, and if at that time the tests are negative, he will give it up to 6 months, but not longer than that. Typically, I believe he says equivalent of four slices of wheat bread per day for 4 weeks for the test to be positive...but up to six months if it shows negative at the four week test point. Open Original Shared Link

This video also explains why some positive biopsies may be false positive. The part about gluten challenge is toward the end of the video. Good luck ...hope this helps.

sa1937 Community Regular

You couldn't pay me enough to go back to eating gluten just to satisfy a doctor's "need to know".

KathrynL Apprentice

Thanks so much for all the great replies! I really don't understand why my doc wants to do this. Even if I'm not technically a "celiac," I know I'm gluten intolerant, and the end result is the same. I can't eat gluten.

I think my plan is to eat it as long as I possibly can stand to, and then take the blood test. That might mean eating it for only 3 days. If the blood test doesn't show the antibodies because I haven't given it enough time, well too bad. I'd rather keep my health than satisfy a doctor's curiosity.

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    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
    • trents
      @JettaGirl, "Coeliac" is the British spelling of "celiac". Same disease. 
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