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Hi Everyone,

A few people requested info as to what happened at the "Kick-Off"
Conference in the University of Maryland for Celiac Disease. (please keep
in mind that I am an amateur at this as I was only diagnosed last year)
The conference was held on May 10, 1997.

Dr. Michael Marsh, who resides in Manchester, England, talked about
"Celiac Disease:  The Approach to the Millenium".  Dr. Marsh thanked the
list servers (Bill Elkus, Mike Jones & Jim Lyles) for spreading the word
over the internet.  Dr.  Marsh explained that wheat protein in England
was the important factor in gluten sensitivity.  He presented slides that
showed what the villi look like in normal intestines and what they look
like after ingesting gluten protein.  It showed flattened mucosa,
inflammation and such.  He noted the only reason for a gluten challenge
is to verify the celiac patient.  Some ways of celiac appearing is
through an infection (an operation may bring out celiac), deficiencies
(many woman iron deficient becuase of periods and childbearing).

Dr. Joseph Murray spoke about Classic Celiac Disease. Doctors looked for
diarrhea, steahorrhea, weight loss, abdominal bloating and flatulance.
At that time (1960), if you didn't have steahorrhea (smelly, watery
stools) then there was no celiac disease. In 1970 three biopsies were
taken: before diagnosis, after a GF diet and after a gluten challenge.
Ideas changed and now in the 1990's only one biopsy is necessary.
Early perceptions: rare childhood disease, classic symptoms, diagnosis
required (3 biopsies), delays in diagnosis were common, transient gluten
sensitivity thought common and some thought celiac patients grew out of
the disease. Testing for Celiac Disease: lab tests for deficiency states,
tests of absorption, antibody tests (used in England since 1962),
intestinal biopsy (gold standard), small bowel xray and trial of diet.
Antibody Testing: In Italy, screening is done in schools. If found
positive in IgG and IgA AGA tests, they are given an endoscopy. Sweden
makes a clinical diagnosis by endoscopies, other countries only do the
screening test and when proved positive are put on GF diet.

Dr. Alessio Fasano, a Pediatric Doctor of Celiac Disease, discussed
celiac disease in the US. The American puzzle: Genetic Factors - genes to
predispose the disease and environmental factors - the grains. Ancestors
come from other countries so it is in the genes of those migrating to the
US. Celiac disease is "rare" here. We know celiac to be a "gut" feeling.
Dr. Fasano discussed "Where Have All Our Celiac's Gone? He mentioned that
70% of the children in Chicago with diarrhea were put on a wheat free
diet without diagnosis. Common practice in the USA is for babies to be
put on an egg-free, wheat-free diet for diarrhea and the changes in
dietary factors, such as breastfeeding for as long as possible. However,
not everyone has diarrhea, poor weight gain or short stature. If there
was no diarrhea, they were overlooked for celiac disease.

Dr. Horvath is with the Celiac Research Institute. The most critical part
of this program is: "How to find the Celiac" and "How to Convince Them".
The main role of the gastroenterologist is collaboration with the
hematologist, endocrinologist, genetist, neurologist, gyn, rhematologist
and dentist. Benefits of the program is to find the prevalence in the US
and early diagnosis. For patients with CD, it could bring Federal
support, improved dietary supplies, stronger support groups, better
health care, insurance companies will recognize screening for CD,
physicians will have more knowledge of CD, and participating physicians
will receive more publications for fighting CD.

Kirk Gardner is in charge of fund-raising for this event. To get it
rolling we must prove that the disease is "rare". The University of
Maryland has taken it upon themselves to do this. Your gift will fund
this project. These requests can be given out to friends, family, etc.
Donations are tax-deductible.

Personal note: If you wish to donate, please contact
[log in to unmask]    Sorry if this is not correct. This is who
I gave my check to on Saturday. Perhaps the listservers will make a
suggestion. Thanks to all.
Cindy in NJ