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Diagnosis Question

katiegirl

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katiegirl Newbie
katiegirl
Posted

I am hoping I can post a question to you all since you are more experienced with celiac disease...

Three months ago I was diagnosed with celiac disease based off of elevated blood tests and a questionable biopsy. The biopsy showed some damage, but it was not typical villi flattening. I went for a second opinion to a different doctor. At that point I had been gluten free for awhile and already felt much better. He wanted to do a gene test for celiac disease so I did that. Well I got my gene test results back today and he said I have both the markers for celiac disease. So to me it sounded like a pretty certain diagnosis of celiac disease, but he said since my biopsy was abnormal there could still be a chance I don't have it. I am supposed to go in for a follow up so he can look at my biopsy slides again.

From all my reading it seems like the elevated blood test, positive results from being gluten free, and positive gene markers should be enough to make a diagnosis, especially when coupled with the symptoms I had before going gluten-free and the damage in the intestine. At this point I just want to be done with the doctor's visits and questioning, and want to be at peace with being gluten-free, but I also don't want to make a lifelong decision about being gluten-free if I don't have too. I guess I am wondering how much more evidence does a doctor need to feel certain it's celiac disease.

I don't know if I should keep my next appt which is next month. The only thing in question was the type of/and level of damage that was in my intestine, but aren't I correct in thinking that I could still have celiac disease and it could just be in the early stages of intestinal damage?

Thanks in advance for your help!

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