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A Diagnosis? Or Not........

Posted by ohsotired, 26 August 2008 · 926 views

Diagnostics
FINALLY! A call from the GI doc's office (8/22) and the nurse tells me "it looks like you may have a mild case of Celiac Disease; try a gluten free diet for a few weeks to see how you feel." :blink: LOL
I asked her to send me a copy of my results for my records, which arrived yesterday (8/25).

I was thinking that since this office didn't seem to know much about Celiac Disease, that maybe they didn't really know how to interpret the test results, and that by looking at them myself I'd see definitive proof.

Not so much.

They ran a Celiac Disease Comprehensive Panel, a Celiac Disease HLA DQ Assoc., and also Folate, Serum, and Vitamin B12 tests.

Test Results:
Deamidated Gliadin Abs, IgA.......1.2 (range 0.0-10.0)
Deamidated Gliadin Abs, IgG.......0.7 (range 0.0-10.0)
t-Transglutaminase (tTG) IgA.....0 (negative 0-3)
t-Transglutaminase (tTG) IgG.....1 (negative 0-5)
Endomysial Antibody IgA............Negative

Immunoglobulin A, Qn, Serum......199 (neg 70-400)
Folate (Folic Acid), Serum..........>24 (ref. int. >5.4)
Vitamin B12.............................634 (ref. int. 211-911)

Celiac Disease HLA DQ Assoc
DQ2 Negative
DQ8 Positive

So the Celiac Comprehensive panel shows normal. I have one of the genes, and high folic acid. What the heck does this mean?
I was still eating gluten when the blood draws were done, but I would have to say it was more of a 'gluten light' diet, as I do tend to steer away from the foods that I suspect are making me ill. So perhaps these are false negatives?
The labs were sent to LabCorp, and I have read over and over that Prometheus and IMMCO are the best labs to send tests to since they know what to look for. Could that be the problem?

Or do I now face the fact that I do not have celiac disease, and start over from square one to figure out what is wrong with me?
My GI doc was ready to label me as IBS after my colonoscopy, until I pushed for the rest of the celiac disease panel, that is.

I plan to continue with the gluten-free diet, but if I'm not Celiac, I fear I will let myself cheat, thinking "oh it won't hurt me, I'll just have a tummy ache" (even though that's not all that happens).

I'm just really at a loss here..........I want to be well, and stop spinning my poor, tired, achy wheels. :(

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The doctor has said that it looks like you have celiac disease. You have the symptoms. Why are you still assuming that you don't have it?
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I was just puzzled as to how he came to the conclusion with what appears to be negative blood work, that's all.

I have recently acquired new info on family health history that erases all doubt, however! I learned just today that I have two family members that have been positively diagnosed with celiac disease, and a third that self diagnosed (all on my mother's side).
The diet seems to be showing a positive response with me, but I have no reason to doubt anymore.

I have Celiac Disease.


(Acceptance is one of the 12 steps, right? ;) LOL)
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Your body doesn't lie. I was "diagnosed" with celiac-sprue in 2007 (as well as my then 16 year old daughter) after MANY years of severe IBS, skin rashes, anemia, fatigue, and many other symptoms. The interesting thing is that I ended up seeing 3 different GI doctors and all 3 had something different to say about it. The one thing that was consistant was my symptoms. If I ate anything with gluten I was very ill, severe stomach cramps and IBS and horrible headaches. When I was gluten free I had none of these issues. 2 of the doctors attributed it to me being a woman and the hormone thing. All I can tell you is that this disease, though very common, is not very well understood yet. Listen to your body and feed it what it needs.
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