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How Long Do You Have To Be Off Gluten For It To Mess With Your Blood Test?


waitingtopounce

Number of Blood Tests vs. Positive Diagnosis  

4 members have voted

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waitingtopounce Rookie

Negative blood test. This is my second negative. First was after I hadn't been able to eat for weeks. Second was after I was on a gluten free diet for 1.5 weeks and had previously been unable to eat much for weeks, but had a few gluten moments to make me feel like crap, including thanksgiving.

I need an FMLA because I am out of leave. My GI now can't see me until next Wednesday. I would like to just get the ball rolling by having them schedule a colonoscopy and endoscopy NOW so this gets moving quicker, so I can take less time off from work in the long run. I would also like to know if eating just little bits of gluten wouldn't be enough to affect my blood results but would be enough to make me feel like I'm about to keel over and die.

Let me know if you have had similar experiences.


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Chiana Apprentice

I am fiercely interested in the result of this poll, but am unable to vote myself, as I have never had a test.

ravenwoodglass Mentor

I choose the last option although I didn't have the endo since the challenge had such severely negative effects, including a severe GI bleed, that my doctor chose not to do the endo. He diagnosed me based on my response to the diet and the very severe effect of the 3 day challenge he had me do after being gluten free for about 6 weeks.

Chiana Apprentice

I just read on the Celiac Disease Foundation website that they recommend that you be on a daily diet of wheat consumption for a month before testing.

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waitingtopounce Rookie
they recommend that you be on a daily diet of wheat consumption for a month before testing.

Thank you Chiana! See I thought so... I am going to print that off and bring it to my doc... it only make sense that they did it wrong. I really hope more people answer the poll... I think it's really interesting. I guess it would have been better to put it on the other discussion site? The post-diagnosis one?

mushroom Proficient

For trustable results it is recommended that you eat the equivalent of 3-4 slices of bread a day for 6-8 weeks and do not stop eating gluten until after all testing, includilng endoscopy and biopsy, is completed. Even then it is possible for all testing to be negative and for you to still be gluten intolerant.

momof4gf Rookie

For trustable results it is recommended that you eat the equivalent of 3-4 slices of bread a day for 6-8 weeks and do not stop eating gluten until after all testing, includilng endoscopy and biopsy, is completed. Even then it is possible for all testing to be negative and for you to still be gluten intolerant.

Do you know the recommended time for a child to be on a gluten challenge that has been gluten free for 3 months?


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mushroom Proficient

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    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • 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
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    • Scott Adams
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    • 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?    
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