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False positive?

Hollywood

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Hollywood Newbie
Hollywood
Posted

I was diagnosed with celiac in 2011 with a blood test but when I had two upper GI and colonoscopy by two different doctors  the other day, the doctors said there were no signs of celiac. I don't understand because I know what happens when I have gluten or or even cross contamination. It's not gluten sensitivity, I have all the symptoms but when he told me that I don't have it, I was devastated. I have a laundry list of illnesses that I contributed to celiac but I'm now confused. 

Has this happened to anyone or have you heard of this before?!?!?

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ravenwoodglass Mentor
ravenwoodglass
Posted

Have you been gluten free since diagnosis? If you have then your tests should be negative.  You do still have celiac you have just healed.

ironictruth Proficient
ironictruth
Posted

Huh? Yes, you need to be on gluten for the scope. Not even sure why they would say that to you. 

What blood tests were positive? 

cyclinglady Grand Master
cyclinglady
Posted

You should be celebrating!  A healed intestine!  Yippee!  

Now the downer.....get a new GI who knows about celiac disease.  This doctor does not even keep up on celiac disease (he just needs to read GI journals).  Remember too that you need to wait for the pathologist's report.  Villi damage is microscopic.  Your GI would not be able to see that type of damage.  

You should be receiving follow-up care:

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      I wasn't given any blood tests. I think I should try the gluten free diet because when I cut it out a few weeks ago for just a couple of days, I know I started feeling better. The difference was actually pretty dramatic. When I learned gluten free eating may cause false negative biopsy results, I went back to gluten full force and feel like you know what × 10. Do you feel it would be okay since the gold standard for diagnosis is behind me or should I wait for biopsy results? In your opinion, of course. I know you can't offer me medical advice.
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