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I am sorry to be so late with this summary, but we have had a crisis in our
family.

I received over 70 responses to this email and I am sorry that I was not
able to thank each person personally for their tremendous help.  This is
what I learned from all of you, including doctors on the list.

Many wrote to state that they had had an endoscopy and the doctor was able
to find visual damage to the intestines before the biopsy results came back.

Far more people told me that they had an endoscopy and that the doctor told
them that everything looked fine, but when the results of the biopsy came
back they had celiac.

Others said that the endoscopy looked fine and the biopsy was initially
negative, but when they sent the results to a lab knowledgeable about celiac
(e.g. those recommended by Dr. Fasano, U of Chicago, Dr. Greene, etc.) that
the negative biopsy was actually positive.

Others wrote that they found Dr. Fine at Enterolab gave them the results
they needed to change their lives, after gastroenterologists failed to find
celiac.  I know that my grandson's life was changed by this method of
determining gluten intolerance/celiac.  In addition, some people said that
they may not be celiac by the book, but that their gluten intolerance was
just as devastating, so a gluten/wheat free diet was absolutely essential to
their quality of life.  (In my point of view, I think this research has been
not been explored enough, because some may not have the intestinal damage,
but have the autoimmune problems that come from eating gluten.)

In my own experience, my gastroenterologist found damage to my intestines,
"paucity of duoneal (sp) folds with ridging typical of celiac disease", but
claimed that I did not have celiac because the biopsy samples were not
inflamed.  I told him I had been gluten free for 13 years and he said that
didn't matter. Sigh.

The conclusion of this seems to be.  In some cases celiac can present itself
dramatically in visual form, but in many cases, it take a qualified lab to
determine if a person truly does not have celiac. Some people may have
gluten intolerance that does not seem to be true celiac, but is equally
damaging.

Now if I could only get my daughter's doctor to understand this or my
daughter for that matter. Sigh again.
Thanks so much for your continued support.  Blessings, Carol in NJ

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