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Misdiagnosed?

AshleyRenae

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AshleyRenae Newbie
AshleyRenae
Posted

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.

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tessa25 Rising Star
tessa25
Posted

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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    • trents
      Awaiting diagnosis

      By trents · Posted

      I would ask for a total IGA test (aka, Immunoglobulin A (IgA) and other names as well) to check for IGA deficiency. That test should always be ordered along with the TTG IGA. If someone is IGA deficient, their individual celiac IGA test scores will be artificially low which can result in false negatives. Make sure you are eating generous amounts of gluten leading up to any testing or diagnostic procedure for celiac disease to ensure validity of the results. 10g of gluten daily for a period of at least 2 weeks is what current guidelines are recommending. That's the amount of gluten found in about 4-6 slices of wheat bread.
    • jlp1999
      Awaiting diagnosis

      By jlp1999 · Posted

      There was not a total IGA test done, those were the only two ordered. I would say I was consuming a normal amount of gluten, I am not a huge bread or baked goods eater
    • trents
      Awaiting diagnosis

      By trents · Posted

      Were you consuming generous amounts of gluten in the weeks leading up to the blood draw for the antibody testing? And was there a Total IGA test done to test for IGA deficiency?
    • jlp1999
      Awaiting diagnosis

      By jlp1999 · Posted

      Thank you for the reply. It was the TTG IGA that was within normal limits
    • trents
      Awaiting diagnosis

      By trents · Posted

      Welcome to the forum, @jlp1999! Which IGA test do you refer to as being normal? TTG-IGA? Total IGA? DGP-IGA? Yes, any positive on an IGA or an IGG test can be due to something other than celiac disease and this is especially true of weak positives. Villous atrophy can also be cause by other things besides celiac disease such as some medications, parasitic infections and even some foods (especially dairy from an intolerance to the dairy protein casein). But the likelihood of that being the case is much less than it being caused by celiac disease.
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