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Positive Blood Test, Negative Biopsy And Convinced It Is Celiac

The Glutenator

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The Glutenator Contributor
The Glutenator
Posted

Hello,

I have been having some gastrointestinal symptoms for a while now and my doctor finally ran a blood test for celiac. My initial symptoms were bloating (looked pregnant), gas, very frequent trips to the washroom, food cravings, and fatigue. As I understand it my immunoglobin levels were very high, even for celiacs (my levels were 52 and normal is less than 20 according to my doctor). I then went for a biopsy and went gluten-free immediately after that. After about 5 weeks I am feeling a lot better. The gas went away very quickly and the bloating and other GI symptoms are getting much better. My energy level is also up 110%. Imagine my shock, then, when the biopsy came back negative. My doctor said he hadn't seen this before and said the blood test almost never gave false positives. I am completely convinced I have celiac disease, especially since the sensitivity of the blood test is so high and all my symptoms are going away, but the negative biopsy was frustrating. My doctor won't officially call me a celiac without the positive biopsy, but isn't recommending a gluten challenge and second test because all my symptoms will come back. Has anyone else had a positive blood test and negative biopsy? What are your suggestions from here? Thanks!

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Wolicki Enthusiast
Wolicki
Posted

there is over 22 ft of small intestine. Most doctors take, at most, 6 samples for the biopsy. If you had a positive blood test, and more importantly, positive dietary response, then you are Celiac.

Docs see things in black and white, and think that they are infallible. Many of us know better after suffering for years. Stick with the diet :P

tarnalberry Community Regular
tarnalberry
Posted

The blood tests don't give false positives (that's not 100%, but it's about as close as you can get with any diagnostic blood work). The biopsies *can* give false NEGATIVES if they don't biopsy the right place, expect more damage than you've yet had, or you just happen to heal quickly. You have your diagnosis - a positive blood test and a positive dietary response. Anything official on doctor paperwork is just bonus.

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