<<Disclaimer: Verify this information before applying it to your situation.>>

Ever since I started reading about Celiac Disease I've seen the statistic that about 10% of people with Down's Syndrome have CD.  I've always wondered whether doctors are screening their Down's Syndrome patients for Celiac.  Surely, with a 10% prevalence, they must be testing, right?  Well, I got a call from someone yesterday that I need to relay to everyone on this list.   The woman who called has a 10 year old daughter with Down's Syndrome, who was just diagnosed with CD this summer.  The Mom was shocked because she had never heard of Celiac Disease.  She is very involved in her DS support groups, reads their newsletters and books on the subject, and has NEVER seen this information before.  Her daughter was tested only because she takes her to a pediatrician who also has a child with Down's.  Apparently they do screen for thyroid disease once a year (hmm, wonder what's causing the thyroid disease?), and he just decided to go ahead and test for CD at the same time.  The Mom told a good friend about this, and her daughter who also has Down's was tested, and she has CD too!

It is just heartbreaking to me that these kids, who have enough problems aleady, have to live with undiagnosed Celiac Disease.  I think we could help by just contacting local Down's syndrome support groups, letting them know that Celiac Disease exists, that our support groups exist, and that their children are at high risk.  Since I don't think I can contact all of these groups on my own, I'm asking for help.  Can you email just one of these groups?  The following link has lists of Down's syndromes groups, including local organizations.  (If there is a local group in your area, it would be wonderful if you could contact them)

http://www.ds-health.com/ds_sites.htm#usa

I'm copying in a Pubmed abstract below that you could email to them, plus the Columbia University website that has a lot of good information on CD.  Thanks to everyone for doing this!  (I'd love to know who you contact - I'll summarize)

Celiac Disease Center at Columbia University:
http://www.celiacdiseasecenter.columbia.edu/CF-HOME.htm


      J Pediatr Gastroenterol Nutr. 2000 Sep;31(3):275-9.  Related Articles, Links  


Prevalence of celiac disease in Down syndrome in the United States.

Zachor DA, Mroczek-Musulman E, Brown P.

Department of Pediatrics, University of Alabama at Birmingham, USA.

BACKGROUND: Numerous studies in Europe have documented a high prevalence of celiac disease in Down syndrome. This study was undertaken to estimate the prevalence of celiac disease in Down syndrome in the southeastern United States. METHODS: Seventy-five patients with Down syndrome were screened using immunoglobulin (Ig)A-anti antiendomysium antibodies, IgA-antigliadin antibodies, and total IgA level. When either antiendomysium or antigliadin antibodies produced positive findings, patients were referred to a pediatric gastroenterologist for consideration of a duodenal biopsy. RESULTS: Thirteen percent (10/75) were positive for antiendomysium antibodies. Half of these patients were also positive for antigliadin antibodies. Six of 10 patients positive for antiendomysium antibodies underwent intestinal biopsy. Changes consistent with celiac disease were documented in five. Histologic findings ranged from focal to total villous atrophy. None had IgA deficiency. CONCLUSIONS: There was a high prevalence of positivity to antiendomysium antibody in Down syndrome. Antiendomysium antibody was a more sensitive screening test than antigliadin antibody. The prevalence of celiac disease in Down syndrome in the southeastern United States was 1 in 14 cases. Screening with antiendomysium antibody and IgA for all children with Down syndrome is recommended, even if there are no gastrointestinal symptoms.

* Please remember some posters may be WHEAT-FREE, but not GLUTEN-FREE *