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Celiac Disease and Down Syndrom summary

First, thank you for so many supportive replies. I received 53 replies. Although I do live in a large metropolitan area, I haven't found another support group in my area. I will just wait awhile before I return. The group leader was very insensitive and many of you had strong opinions as to what to do with her. I'm over the pain of the encounter now and I think I do best from distancing myself. At the time, I did not feel I was "at fault", but her statements suggested I could have done something to prevent my son from having down syndrom. Some time in the future I may get more involved in the group. 

I was sent a lot of links to a lot articles and websites. It's taken me a while to weed through it and I guess the holidays added to the time I took getting this summary done. Anyway, there is a definite link between CD and down syndrom. However, there appears to be no research suggesting that a mother having untreated CD would cause her child to have DS. Some research suggested that the higher incidence of CD among persons with DS might mean that the material predisposing a person to CD was carried on the 21st chromosome. Other research said that this was not so. Persons with DS do have a higher incidence of digestive tract problems. This weaker digestive system coupled with the presence of a predisposition to CD based on family may make CD more likely to appear in persons with DS. 

I have done well understanding the GF diet and learning to cook again. My daughter's latest blood test is clear. Our success here is due to putting the whole family on the GF diet. I think I said earlier that my oldest son's CD tests were inconclusive, but allergy testing showed him to be allergic to wheat, rye and barley anyway. My oldest son is much healthier now too. He has a lot of sensory integration issues and I believe this diet has helped him with that. We have also dropped eggs and some other foods that seemed to cause problems. My youngest son is the one with DS. After some early problems, lasting about 2 months he has been quite healthy. We started on the GF diet just about the time we were adding to his diet of breast milk, rice cereal, and vegetable puree so he didn't have much exposure to gluten. We have been on this diet six months. I have formed a personal support group of sorts as I have met a few people through some of my children's activities who have CD themselves, have children with CD or have put their children on GFCF diets. A few people suggested I look into supplements for my son with DS. We recently started on a vitamin program and feel he is responding positively, but it is being monitored. Also, my son is in an early intervention program. I also take him to private therapists. We feel very fortunate that he is so healthy and responding so well to these programs. 

One person suggested Dr. Fine's stool test for testing after being on the GF diet for some time. I will look into this. 

Thank you again,

Betty

Here are a few of the references:

http://www.celiac.com/cgi-bin/webc.cgi/st_prod.html?p_prodid=95&p_catid=7&sid=91hH9H0X9MPb3ur-15102511951.3

http://www.celiac.com/cgi-bin/webc.cgi/st_prod.html?p_prodid=97&p_catid=7&sid=91hH9H0X9MPb3ur-15102511951.36

http://www.dsmig.org.uk/library/articles/coeliac-awareness-notes.pdf

http://www.ds-health.com/celiac.htm

http://www.celiac.com/cgi-bin/webc.cgi/st_main.html?p_catid=7

http://www.altonweb.com/cs/downsyndrome/index.htm?page=celiacle.html

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