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Subject:
From:
Nancy Lilly <[log in to unmask]>
Date:
Mon, 21 Oct 1996 15:13:33 -0700
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<<Disclaimer: Verify this information before applying it to your situation.>>
 
Thanks so very much to all who have responded re/my decision to try for a real
honest-to-God medical diagnosis. And, Mike, thanks for the warning to go slow.
I have a print-out from Bill Elkus to take to my doctor tomorrow to try to
get things started.
 
It interested me that I had quite a few responses questioning why I want
the diagnosis, since the GF diet has sort of proven it by default. This
might be an interesting subject for a list discussion.
 
Since more than one or two people asked, I thought I'd reply to the list.
 
1.  I have a wonderful adult son, & will probably have grandchildren one of
these days.  If I am a definite, diagnosed celiac, I can convince my son to
get tested, plus it will be a known genetic factor to take into
consideration medically for my family.
 
2.  And, speaking of family, I am hoping to trace (&think I may know) what
the line of inheritance is.
 
3.  I don't like doctors looking at me when I say I have Celiac Disease
with that "humor her - it can't hurt, anyway" kind of attitude.
 
4.  I was lucky the last time I was hospitalized for an illness - there was
a doctor on the staff who had CD and could front with the kitchen for me -
otherwise, I would have had a hard time getting decent food.  I may not be
so lucky next time, so I want a diagnosis on my medical record. (I know the
diagnosis doesn't mean people will know more, but it means that they might
give what I have to say more credence.)
 
5.  There are investigations, tests, experiments, etc. going on through USC
re/Celiac, and I would like to be available to volunteer, but they only use
diagnosed subjects.
 
6.  My mother had Alzheimers, and I live in fear of being helpless &
confused, and being fed food that will make me even more miserable. Again,
I feel that the "credibility factor" of having a diagnosis that medical
personnel will respect is important in so many potentially difficult
situations.
 
7. Even though I think I'm gluten free, a lab test cannot prove that unless
we have a test that is positive for antibodies to use as a standard.
 
8.  If I don't have CD, I have SOMETHING that creates the same extensive
symptomology, and I'd like to know what the heck it is.
 
This may seem a bit chaotic, but I don't have time to go back & edit.  Hope
it make some sense.  And again - a big thank-you to everyone who took the
time & effort to respond.
 
Nancy

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