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Yesterday I received a call from a lady who was given my name by our mutual
doctor.  She is recently, biopsy diagnosed.  It seems that she has had
diarrhea and gone to the same gastroenterologist for 22 years.  For the
last 15 of those years she has had bloating, pain, and discomfort.  Says
she ate 4000 plus calories every day but was always very thin.  Finally
lost 15 pounds and then the MD decided to do a biopsy.  Advanced celiac -
no villi, you know the situation.  He said no gluten, gave her a book I
know nothing about, and said to give me a call for some dietary support.
No mention of the possibility of lactose intolerance.  After two weeks she
is still having diarrhea, but feeling better.  After our conversation she
decided to cut out lactose.  Perhaps in another two weeks there will be an
improvement.  I hope in another four days.  We'll see.

We talked for an hour, and then I took to her home four loose leaf
notebooks filled with pages, more or less organized, taken from this list.
Poor woman will have to read all weekend.  I gave her the information about
subscribing to this list, and feel she is going to receive tremendous
support from all of you.  Assuming that the delay has not been so long that
the damage to the villi is permanent, or has moved on to something else, I
think she will be fine.  But 22 YEARS! She's in her mid 30's.

 This doctor is intellegent, well trained, has other celiac patients...  I
don't understand how the diagnosis could have been missed for so long, and
I don't know what to do with my frustration - for her, and for the long
list of unknown people who are still waiting.

This morning I'm not writing from anger, I'm just so sad for all these
people.  We've got to get this disease in the public eye.

Gayle K.