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In going through some old text files I found the following paragraph:
 
November 1993. European Journal of Pediatrics. Authors Hilhorst MI. Brink M.
Wauters EA. Houwen RH. Institution: Department of gastro-enterology,
Wilhelmina Children's Hospital, Utrecht, The Netherlands. The frequency of
coeliac condition is 43 times greater in children with Down syndrome than in
children without Down syndrome. It should be strongly considered in all
children with Down syndrome who have either persistent diarrhoea or failure
to thrive.
 
which came from one of Peter Thomson's web page. Then finding a DS mailing
list at <[log in to unmask]> (SUB down-syn Your Name) I sent the list a
database search command to see if they were talking about gluten. And in the
past few weeks they have been discussing it. Here is an article that I
thought would be of interest to this list. Don Wiss.
 
 
Date:         Tue, 5 Sep 1995 09:49:19 +0200
Sender:       Down Syndrome <[log in to unmask]>
From:         Stichting Down's Syndroom <[log in to unmask]>
Subject:      celiac disease
 
Hi everybody,
 
Jim Wheaton prompted me to say something about celiac disease.
 
Celiac disease is a condition of the small intestine. Complaints might be
diarrhea or just obstipation (tricky!), anemia, moodiness, a bloated abdomen
or simply failure to thrive.
 
Leyden University Medical School just finished a large scale investigation.
198 families with a child with DS aged between 1 and 9 years were
approached. 115 decided to have their child participate. The first
researcher, Elvira George, made home visits and collected blood and urine
for testing. A. o. values of anti-endomysium (EmA) were determined. Only if
one of the investigated blood or urine values was significantly different
from the norm the child was referred to the hospital to take a biopsy. That
was the case with 43 of the 115 children. In 9 cases no biopsy was taken, in
six because the parents refused it and in 3 because the child's condition
didn't allow for it. Of the 34 children that had a biopsy taken eight, or
rather 7 % (!) of the original 115, had the intestinal appearance typical
for celiac disease (according to international standards).
 
Retrospectively, five of these eight children had complaints that were
compatible with celiac disease, that were considered to be caused by DS as
such until then. Three children were free of complaints. Their diagnosis was
a complete surprise. In addition, it was proven that the value for EmA was
the strongest indicator of a positive biopsy. If EmA was positive there
always was celiac disease upon biopsy.
 
Needless to say that all (so far but one) concerned children were put on a
totally gluten free diet. It was reported that their complaints decreased
rapidly. Celiac disease is considered to put people involved at risk for
particular intestinal cancers, if they do not keep their diet. Therefore,
the diet has to be maintained lifelong. This aspect makes testing for celiac
disease so important in an at risk population as children with DS are. Even
without complaints one in fourteen of our children might have it!
 
It is postulated that the children that had different blood values, but no
positive biopsy still can develop celiac disease in the future. They will
remain to be followed.
 
Presently, the complete study is in the process of being published in the
international literature. So, I'm afraid I'm only able to give a you a
reference to a pre-publication:
 
George, E. et al. The high frequency of celiac disease in DS: screening
methods. Gastroenterology 1995; 108 (Supp 4): A 16
 
The information above was compiled from our own magazine `Down+Up'. But I
will let you all know as soon as the final paper is published.
 
Erik de Graaf