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Subject:
From:
Adele McHenry Koenen <[log in to unmask]>
Date:
Mon, 4 Jan 1999 10:35:06 EST
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<<Disclaimer: Verify this information before applying it to your situation.>>

Thank you for the storm of replies!  Here's the summary:

Stay in the pizza biz, just make them gf.
The wait to receive diagnosis from various misguided doctors: 12 years
An endorsement of Huron Gastroenterology, Dr. Mortell who actually comes to
Chelsea Hospital every Thursday!!!
For my son, a referral to Dr. Alan Olsen at the Pediatrics Subspecialty Clinic
at the University of Michigan Hospital
Another endorsement of U of M hospital.
Endorsement of Dr. Timothy Nostrant at U/M Hospital Gastroenterology
Endorsement of Dr. Butler and Dr. Urvish Shah in Lansing (a little too far)
School Principal wouldn't meet with mother to discuss son's special diet
without diagnosis, but now they are compliant.  My Pediatrician did not want
to refer me to a specialist, my stepbrother (a GI specialist) thought I was
overreacting, and my whole family thought I was crazy until we spent a week
together on vacation and they saw how bad he was.  Then of course I couldn't
do enough!
After no help from doctors one family went to naturopathic physician and read
"Eat Right 4 Your Type" had bloodtests and changed diet accordingly.  Not
foolproof but led them in useful directions.
Suggestion from three to get a DH biopsy, which seems to be a simple procedure
which needs proper interpretation.
Comprehensive lists of contacts from Michigan Capital Celiac/DH support group
and the Tricounty Celiac Group.
One message from a self-diagnosed person who says the doctors don't matter,
treat yourself.
A message from two others who get skin irritation from touching flour.
Suggested to write CSA/USA P.O. Box 31700, Omaha, NE 68131-0700 for info.
Suggested to read "Coping with Celiac"
Best of all, parents of celiac children right in my neighborhood who I can get
in touch with!

Thanks!!

Adele

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