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Thank-you to everyone who respomnded to my post requesting information about
the relationship between Down Syndrome and Celiac Disease. Following is a
summary of responses I received over the past several days.

1. One peson has a daughter with Down Syndrome was recently diagnosed with CD.

2. From FL>DS literature that suggests a 20 times more likely chance of a
child with Down Syndrome will  have Celiac Disease.

3. From British Columbia...My brother-in-law  has down's and is having CD, but
I would love to know what you discover as I have asyndrome and I have been
trying to get him tested.  His doctor however maintains that poor digestion,
loose bowels
and lots of gas are side affects of down's syndrome.  Any information
you come up with would be most appreciated.

4. And from our friend Don Wiss.  The following paragraph is from:

 http://www.wwwebguides.com/nutrition/diets/glutenfree/resea.html

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.

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.


6. Barb,  I believe you can write to the celiac List and ask for the archives
about the connection between celiac and Down Syndrome.  GK
( I did a complete search of the archives and found additional information
from the server which confirms a positive relatioship between CD and Down
Syndrome.)

7. the only info I have is that my son has both DS and celiac.  There is now a
great need to have all children with DS tested for CD.  A few years ago
Siegfried Puschall denied any relationship betweent the two, yet docs in
Europe have reported the connection years ago.

8. Have you contacted Maria Sustrova form Slovackia?  She is an endocrinologist
(I think) and is the "Mother" of Down syndrome in Europe, kind of the European
equivalent or our own Siegfried Puschall.

9. The onlybook I can find is"Medical & Surgical Care for Children with Down
Syndrome" Ed. by DC Van Dyke MD, Woodbine House l995 ISBN ##
0-933149-54-9 p. 185...."one study found that individuals with DS are 20
times more likely than others to have a particular malabsorbtion
syndrome known as celiac disease" This section is written by Timothy M
Buie MD and references "DS and Celiac Disease" Pediatric
Gastroenterology and Nutrition vol10, no1. l990 41-43 by Dias,J and
Walker-Smith, J. I'm pretty housebound at present so cannot copy for you
but this book is pretty readily available these days (and obviously
outdated!) May I ask what your interest is in this combination? Just
curious. Thanks again, Sherry  Happy New `Year!


I have also received a Medline search from J. Dias  of 31 citations on the
relationship between Down Syndrome and Celiac Disease. if anyone is interested
I can e-mail the file seperately