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@sue225

Maybe protocols have changed. Thought the small biopsy was the gold standard for diagnosing celiac disease. Done via gastroscope and biopsy of the villi (finger-like projections of small bowel). That's how I got my diagnosis.

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Replies to "Maybe protocols have changed. Thought the small biopsy was the gold standard for diagnosing celiac disease...."

Absolutely. But it is not always done. You are right: blood tests are used too often for a final diagnosis.

I would add that @sue225's post is especially important for someone with a negative blood test.

My daughter has lived with assumed celiac for years now. She went gluten free before any diagnostic tests. She has to be back on gluten for 6 months for diagnosis. GI docs have tried twice to get her back on gluten, believe it or not, and she gets so sick with the first exposure that they call it off. So she will never be diagnosed. She initially felt she needed the diagnosis for full commitment to being as careful as needed with celiac, but that didn't last long. She is very very careful.

If you have not been off gluten, I would make every effort to get fully tested and that would include the biopsy as @sue225 wrote.