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Down Syndrome: Stichting Down Syndrome

Erik de Graaf
director, Stiching Down Syndrome (SDS)
(i.e., the Dutch Down Syndrome Foundation)
Vice-President of the European Downs Syndrome Association (EDSA)
Bovenboerseweg 41
NL-7941 AL Wanneperveen
The Netherlands
Tel.: -31-(0)522-28 13 37
Fax.: -31-(0)522-28 17 99
E-mail: sdswannl@knoware.nl

Leyden University Medical School just finished a large-scale investigation using 198 families who have a child with DS between the ages of 1 and 9 years old. 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 was the child 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 childs condition didnt 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).

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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 can still develop celiac disease in the future. Their condition will remain be followed. Presently, the complete study is in the process of being published in international literature. There is the following pre-publication reference:

  • George, E. et al. The high frequency of celiac disease in DS: screening methods. Gastroenterology 1995; 108 (Supp 4): A 16

For more information:

  • 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 malabsorption syndrome known as celiac disease. This section is written by Timothy M Buie MD and references DS and Celiac Disease Pediatric Gastroenterology and Nutrition Vol. 10, No.1. l990 41-43 by Dias, J. and Walker-Smith, J.

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Hello I was diagnosed Dec 15 of last year and went totally gluten-free the next day. I actually got worse before I got better - it's a steep learning curve - but now, 4 1/2 months later I'm finally seeing improvement. Hang in there.

Called my GI doctor today to make sure he is going to look at my small intestine and do biopsy for Celiac for my EGD and he is. Thanks for the tip everyone about have to start eating gluten again. The office told me to break my gluten free diet and start eating gluten everyday until my EGD. Here's to being miserable again for a few weeks ???

I can completely relate! The horrible mental effects that I have been living with for years is the absolute worst side effect of eating gluten, HANDS DOWN. Worse than the endless tummy aches, worse than the constant diarrhea, worse than the week long migraines, worse than the daily fatigue and body pain.... I honestly though there was something seriously wrong with me and hated my life because of how I felt mentally. I always felt like I was drowning, not in control of my thoughts, trapped in some unexplained misery. My head was always so cloudy, and I was mad because I always felt so slow and stupid. I would feel so lethargic and sad and empty while at the same time be raging inside, wanting to rip out of my own skin. I was mean, terrible, would snap at the people closest to me for no good reason and just felt like I hated everyone and everything. Think of how crappy you feel when you have a terrible cold and flu - I felt that crappy, but mentally. Some days were really bad, some were mild. I always thought it was because I was getting a migraine, or because I had a migraine, or because I had just overcome a migraine, because I didn't sleep well, because....always a random reason to justify why we have all these weird unrelated symptoms before we get diagnosed. I'm happy to say that I have been gluten-free for about 2 months now and though I am not symptom free, the first thing that improved was my mood. I no longer feel foggy and miserable. For the first time in years, my head is clear, I can actually think, and I feel positive and like I am in control of what's going on in my head. I don't hate the world. I don't spend every day bawled up on the corner of the couch depressed and angry. The release of these horrible symptoms is enough to never make me want to cheat, no matter what I have to miss out on. So insane how a little minuscule amount of a stupid protein can wreck such havoc.

I wanted to collect some of the info on NCGI in one place so that visitors who test negative but may still have an issue with gluten can be directed there. I'll add to this post as I find new links, but feel free to add or contribute anything you think may be of use! Matt --- Useful links: An overview from Alessio Fasano, one of the world's leading researchers on celiac and gluten sensitivity: https://www.youtube.com/watch?v=VvfTV57iPUY Umberto Volta, another leading researcher in the field gives some of the latest findings about NCGI: Presentation slides from Dr Volta's visit to Coeliac UK - NCGS about halfway through A scholarly overview from celiac disease magazine: https://www.researchgate.net/profile/Knut_Lundin/publication/232528784_Non-celiac_Gluten_Sensitivity/links/09e415098bbe37c05b000000.pdf A good overview from a sceptical but fair perspective: https://sciencebasedmedicine.org/a-balanced-look-at-gluten-sensitivity/ Another overview: https://celiac.org/celiac-disease/understanding-celiac-disease-2/non-celiac-gluten-sensitivity-2/ University of Chicago's excellent celiac site's take: http://www.cureceliacdisease.org/category/faq-non-celiac-gluten-sensitivity/ A compelling account in the British Medical Journal from an NCGI patient: http://www.bmj.com/content/345/bmj.e7982 Here's some positive news about a potential new test: http://www.medicaldaily.com/non-celiac-gluten-insensitivity-blood-test-392850 NCGI in children: NCGI and auto immune study: https://www.ncbi.nlm.nih.gov/pubmed/26026392 Also consider: Fodmaps: http://www.kcl.ac.uk/lsm/research/divisions/dns/projects/fodmaps/faq.aspx This Monash study: http://fodmapmonash.blogspot.co.uk/2015/03/the-truth-behind-non-celiac-gluten.html suggested some who think they're reacting to gluten should actually be reducing fodmaps Sibo: http://www.webmd.boots.com/digestive-disorders/small-intestinal-bacteria-sibo

I was just diagnosed in March and I totally feel you. I'm having a hard enough time with determining which lip glosses are safe, let alone all my face products etc. I feel like this 'grey area' is the biggest annoyance with Celiac. So many foods/cosmetics I thought were safe after reading the ingredient list are actually not safe at all! One website says it's safe, one says its not. All these unfamiliar ingredients and even after googling term after term still so many grey areas!! I'm sure in time it gets easier and second nature and you learn by trial and error but holy this constant uncertainty is super annoying haha.