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How Accurate Is The Ttg Blood Test?


amicamom

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amicamom Newbie

Celiac Disease Comprehensive Panel tests are back...I AM FLABBERGASTED TO SAY THE LEAST...Charity, Bethany and I all tested NEGATIVE for Celiac Disease.

Bethany - TTG Antibody IGA <3 (negative is anything <5)

Bethany - Gliadin Antibody (IGA <3 (negative is anything <11)

Charity - TTG Angibody IGA <3 (negative is anything <5)

Charity - Gliadin Antibody <3 (negative is anything <11)

The lab did not perform the rest of the panel based on this information.

Me - TTG Antibody, IGA <3

Me - Gliadin Antibody (IGA) 8

IGA, Serum 212

The lab did not perform the rest of the panel based on this information.

I don't know what to think now. Of course, I am thankful we do not have celiac disease. However, I was certain this was the answer to my babies problems. What do I do now? Bethany is obviously thriving on a gluten free diet so I know there must be some kind of sensitivity. She is still scheduled to see a GI doctor next week.

The above tests did not even show a SENSITIVITY to gluten, right?

What should I do now?

You can read more about my situation in "11 Month Old Starving To Death" in the parents of kids with celiac forum here at glutenfreeforum.com.


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KaitiUSA Enthusiast

The tTG test is pretty accurate.

Were you all on gluten before testing? If you were gluten free then that can really screw up tests.

Carriefaith Enthusiast

False positives can occur - a gluten free diet can cause a false positive, and individuals deficient in IGA antibodies and cause a false positive.

lbsteenwyk Explorer

All of the celiac tests can be inaccurate in children under 2 years. Also, there is some question about accuracy under 5 years of age. If your child is thriving on a gluten free diet, I would leave her on it for now. Or you could put her back on gluten and pursue an endoscopy and biopsy. Just be sure to get someone who knows how to do the biopsy properly - 4-6 samples from the 3rd portion of the duodenum. There are cases where intestinal damage is apparent, even when blood work is negative.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
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      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.
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