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Contradictory Test Results

northcote

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northcote Newbie
northcote
Posted

Hi,

I used to post here under another name but forgot my password. It has been 1.5 years since my first TTG IGa test result came back positive. That was followed up with an endoscopy that was a bit unclear but had found "damage".

I jumped on the gluten free diet and have not looked back. My life has dramatically changed and I have found positive results, such as: less acne, withdrawal from anxiety/depression (stopped all medication!) better sleep habits, lost weight. just in general I feel a lot better than when this all started.

I had a follow up appointment with a Gastro doc a few weeks ago (who by the way was the first one I actually had an office visit with, the rest just consulted with the primary). SHe ordered the DNA tests.

The reason I am writing this is that the DNA tests came back negative for the celiac gene markers. I dont really know what to do now, since I have invested so much emotional effort to understanding and accomodating what I thought was Celiac.

RIght now my plan is to continue living gluten free. I am scared at the thought of eating gluten and dont think I would try it right now. I have an endoscopy at the end of the month for the doc to see if there is anything noticeable down there. I have been having GERD and I was trying to see what is causing that.

I am just a bit thrown off balance by this developement and need some way to understand it in relation to Non-celiac gluten sensitivity et. al. Does anyone have a similar testing pattern or experience?

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0range Apprentice
0range
Posted

To my knowledge, researchers have only identified two celiac genes to date. This is not to say that =all= celiacs have these genes, but that the vast majority do. Other genes have also been implicated in the development of celiac, they just have not been identified yet. The fact that you did not have a positive DNA test may mean that your genes are part of the small subset that don't fall into those genes that are commonly associated with celiac. I will try to follow this up with a link or article where I read this. Good luck to you!

nvsmom Community Regular
nvsmom
Posted

Welcome back.

 

We have celiacs on this board who have tested positive for celiac disease while having negative DQ2 and DQ8 tests. It's not that common but it definitely happens - you're in the minority but it really isn't that rare. I just wish I could remember which people it was...

 

If you had a positive tTG IgA, and such a positive response to the gluten-free diet, then it probably is celiac disease. A positive tTG IgA can not be caused by non-celiac gluten intolerance (NCGI). Those with NCGI have the same horrible gluten intolerance symptoms that celiacs experience but they don't get the villi damage that celiac disease results in. The tTG IgA test show only that your body is attempting to damage it's intestinal villi in it's overreaction to wipe out all gluten. A positive tTG test indicates that your body was attempting to do damage to you villi., that is almost always celiac disease.

 

About 5% of the time, a positive tTG IgA can indicate other health problems like thyroiditis, diabetes, colitis, crohns, and chronic liver disease. In those cases, the tTG IgA reslt is usually just barely above normal.  The specificity of that test is very good as can be seen on page 12 of this report: Open Original Shared Link

 

I wouldn't eat gluten prior to that endoscopy, that way if there is damage, you'll know the GERD wasn't from the celiac disease and the doctors can treat it from there.

 

Good luck! I hope you feel better soon.

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