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I wrote asking how far to push for a diagnosis of celiac, given negative
blood tests (although they were drawn after being GF for a couple of
months) but 100% improvement when off gluten.  I am also post RNY weight
loss surgery, to complicate things a little.  Here's my somewhat
disorganized summary.  Thanks to all who helped me out by responding.

I got some mail advising me that it was very important to get a
definitive diagnosis, and some telling me that since I know gluten is a
problem, I should just go GF and not worry about an official diagnosis.
Several people mailed that their bloodwork showed no evidence of celiac
but they were later diagnosed by other means.  Dr. Fine's stool test was
recommended by many.

One person asked her doctor if it was possible that she was just
sensitive to gluten and not really celiac, and she said no, either you
have celiac or you don't.

I have probably been ingesting some level of gluten all along, since I
have not been extraordinarily cautious, so Dr. Fine's testing will
probably be accurate.  Also, one person suggested that since my
bloodwork was negative, I may just have a wheat allergy.

Dr. Fine indicated that the malabsorption test would not necessarily be
helpful because of my weight loss surgery (some malabsorption is normal
after surgery) but my surgery should not affect the results of the
gluten antibody stool test.

One person noted that if I don't get a definitive diagnosis I will
probably continue to "test the waters" with gluten containing food.
She's right!

It was recommended that I have a bone density test.  This is complicated
by my weight loss surgery, since the weight loss and possibly the
malabsorption lead to a drop in bone density anyway.

So, anyway, I am waffling as to whether I want to spend $120 on Dr.
Fine's stool test, but I will probably do it.  I have an appointment in
early October with a physician who specializes in celiac (Dr. Thomas
Alexander in Troy, MI).

Thanks again!

Cat

* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *