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A list member wrote: "While I agree that Ayn brought up a good topic, I
think we need to address another problem that Ayn brought up that has not
been mentioned. Ayn does not have celiac disease.  Her biopsy was negative.
I feel that Ayn needs to be discussing her problems with her doctor.
Abdominal
pain of unknown origin and loss of friendships over this suggests something
else to me.  I was told that biopsy is the only definitive way to diagnose
celiac disease.  If the biopsy is negative, you should look for other
causes. I do not want to be unsympathetic to Ayn, but I am concerned that
something else is the cause of her problems, and that is what needs to be
addressed."

Regarding the above, although I understand the need to try and get a
diagnosis or figure out what exactly is wrong, I certainly hope that the
confirmed celiacs on this list do not start looking down on the ones who
have not gotten a definitive diagnosis.  Some diagnoses seem to require much
more time and multiple biopsies.

In 1993, I underwent an endoscopy to see if anything would be found to
contribute to pernicious anemia.  Although the gastroenterologist said
everything looked quite normal, the pathologist wrote that the  biopsy
results showed  "moderate to severe duodenitis."  Ig blood tests were ran;
only one came back slightly elevated.  I had never heard of celiac, it
wasn't brought up then, the preceding results were only "noted" in my record
and nothing else was said about it.

After experiencing many more problems, blood tests were ran again late last
year for Ig levels and all came back out of the normal range.  I had another
endoscopy in January this year and, low and behold, celiac disease was
confirmed.  I must add that the confirmation was done only after having the
biopsy sent to a doctor who has researched celiac for 30 years.  The first
doctor would not absolutely confirm it was celiac, only that it "probably"
was, even after he had done the endoscopy and looked at the blood tests.

I realize not all people will have the same experience.  However, since many
of us have had a difficult time getting the unequivocal diagnosis, I do not
think we should discount the ones who are still working on that.

It seems that even quite knowledgeable doctors miss or mis-label the
diagnosis.  I have wondered what celiac looks like at the very beginning.
It seems so many of us have initial diagnosis of things such as IBS,
Crohn's, duodenitis, etc.  I wonder if these initially look the same as
celiac before the villi become flat.  It certainly would be much better for
all of us if doctors could recognize what happens in celiac in the very
first stages.  It is an absolute shame to wait for the blood tests to
skyrocket and the villi to be completely flat, because of the damage it can
do to other areas such as the bones.  I certainly wish I knew about celiac
those many years ago, confirmed diagnosis or not.  I think all of us should
support those who are going through this process, and remember what we had
to go through to find out about celiac.

Kathy,
Oceanside, CA