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Misdiagnosed?


AshleyRenae

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AshleyRenae Newbie
(edited)

Can someone please tell me if they have been misdiagnosed or thought they might be? what could it be if not Celiac?

I was diagnosed 10 years ago (age 18) after started to have some major stomach issues (constant diarrhea, bloating, etc) and I went strictly gluten free, we're talking full on anxiety ridden to even eat out.  I make all of my food, at first I lost a bunch of weight but have always been overweight, so I thought maybe it was doing some good, yet I still was having the issues.  Fast forward to 2016 (6 years in) and I am strictly gluten free still, dairy free, have been diagnosed with endometriosis and interstitial cystitis with a case of chronic hives (came out of nowhere no understanding of cause)....the endo was removed, I went to therapy (and still attend) based off them saying my issues were probably brought on more by anxiety....I have done everything on my part and here I am at 28 almost 29...10 years later with the same issues, same debilitating stomach problems that have stolen my 20's and Im thinking what else could it be?  I have given this disease a decade, stuck so true to it, so strict....theres got to be other options?  

Celiac does not run in my family from what we know. Any suggestions on what to ask for testing wise? or if I am just going to be this way forever with a diagnosis thats untamed.

Edited by AshleyRenae

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tessa25 Rising Star

Get the full celiac panel done to see if you have been completely gluten free. For some less than 20ppm gluten isn't good enough. All of the celiac numbers should be at normal levels.

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

Has your gastroenterologist done an endoscopy lately to see if you are all healed?

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