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Got test results from my upper endoscopy. Confused, and looking for some insight.

NoGlutensToday

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NoGlutensToday Enthusiast
NoGlutensToday
Posted

I recently had an upper endoscopy (esophagus, stomach and duodenum) and had my meeting with the GI doctor today. He told me everything looks fine from a gut perspective. He also said that if it was up to him, he would say I don't have celiac. Then he cautioned me to not go out and eat gluten ... he emphasized this is his perspective, from viewing my gut.

I was diagnosed via my skin doctor, who immediately diagnosed my DH first time I saw her. I went "gluten free" several years ago after suffering severely for roughly a decade. I kept getting sick, presumably from cross-contamination, until following the Fasano diet roughly 16 months ago. The recovery has been remarkable, save for the fact that I later discovered I also have IBS. Fodmaps has largely resolved that.

What should I make of the test results? Could it be that my gut looks good to the GI doctor because I've been gluten free and have had a chance to heal? Or is it possible that I never actually had celiac and I just responded to the gluten free diet by some strange coincidence? My dermatologist has believed I have DH since I first saw her but she didn't do a biopsy since I had been largely gluten free prior to seeing her (save for some cross-contamination).

(Just to clarify, I never had a blood test for antibodies bc I was already gluten free and didn't want to go through the suffering again.)

My GI also had me take a "genetic test" for celiac, which was a blood sample. He says that turned up negative.

In the end, he told me if I ever get glutened again and break into the DH rash, that I should get a biopsy. And that was that.

Color me confused. Any insights?

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