Positive celiac panel and negative biopsy?

[Mgh1213]

Hello all, I come to you seeking advice as you all know more about celiac disease then the 3 doctors I have seen for it. I was diagnosed with celiac disease by blood test back in September and was told to begin a strict gluten free diet for life. I was told I woud not need to follow up with an endoscopy or additional testing as they thought for sure I had it because I lost 35 pounds (from 120 to 85) and my labs were very high:

Gliadin AB IGG -   >160

Gliadin AB IGA-   >320 

TTG IGA- >160

For some reason I just didn’t feel like I had celiac disease, other than the extreme weight loss and fatigue, I had no other symptoms. I also have Graves’ disease which is under control (they thought that was why I lost weight but decided it wasn’t). But I decided I wanted an endoscopy regardless of how many doctors told me I didn’t need it and now I’ve been told that I have no signs whatsoever of celiac disease. I have been stressed, depressed, confused since I was diagnosed 6 months ago and now I’m told it was a false positive?? When I look online, the false positives are usually just barely out of range but mine are so high? Do you think it’s really possible that the blood test is wrong and that I don’t have celiac disease? Im just so skeptical especially after being misled ..I hate to load up on gluten and years later regret it ..thanks in advance for the advice..sorry this is so long, so many details. Also, my gastro who is new to me, told me before the endoscopy that since I don’t get sick from gluten then why stop eating it? Ummm can it not cause cancer? He said he didn’t..but this is partially why I don’t want to ignore this if I might have it 

 

 

 

 

 

 

 

[overdramaticmel]

Were you eating gluten prior to the endoscopy? If you were off of it, it may show negative even though your original antibodies weee high. I’d ask for another, and if you can handle it, you’d have to be on gluten for a number of weeks first. 

Graves’ disease and celiac are actually often seen together. I have both and have done a lot of research on it. 

[Estes]

My biopsy was also negative because it took me 4 months to get an endoscopy.  I was very sick at the time of the High positive blood test.  We are all calling it celiac disease which had healed enough at the time of the endoscopy for it to be negative.  It just means the gluten free diet is working.  I will always have celiac.  

Other things went away after going gluten free which also is a sign that it is a correct diagnosis (anemia, fatigue, markers of inflammation on my CBC).