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

In response to Diane's email:

I am the President of the Down Syndrome Guild of Dallas.  I wrote a 5 page article for our newsletter two years ago when my then 2 1/2 y/o son was diagnosed with CD.  Our newsletter goes to several other DS organizations
around the country (we also recieve several from them too), so the word is getting around.  I have provided that article to all my son's teachers, the school nurses, and it in turn has gone to the district office, in orde
r to educate all of them.  I have given it to our pediatrician, our pedi GI doctor, friends, family, etc., and helped educate those in the local ROCK group (Raising Our Celiac Kids - a group started by Danna Korn).  It ha
s also been circulated among those w/ Autism, b/c there is a preponderance of children w/ Autism that respond well to a GF and/or CF diet (see research by Dr. Andrew Wakefield or the book Special Diets for Special Kids by
 Dr. Lisa Lewis - though it is controversial in some circles).

The DS Health Guidelines were recently changed to include annual screening for CD along with thyroid (50% of those w/ DS have hypothyroidism unrelated to CD), but many pediatricians are not doing it.  Our local DS Clinic
at the Children's Hospital stopped the screening b/c they weren't finding many kids with it.  I will be in contact w/ them to get that decision reversed.

Another FYI - a statistically significant number of people w/ DS have diabetes also and develop behavioral and psychiatric disorders at an early age (around 15).  So it seems to me that somehow, thyroid, diabetes, CD and
psychiatric issues are all affected by the 21st chromosome.  I'm not a geneticist, so I could be wrong.

Since my son was diagnosed, 3 other children (out of 700+ families) in our organization have been diagnosed (all under the age of 5).  I also regularly send info about local CD support groups or relevevant research inform
ation so it is in our newsletter.  There are several parents in our organization that suspect it, but dr won't test for it, or the parents are so overwhelmed with therapy, school issues, other kids needs, that they cannot
 begin to think       aboutprovidingaGFdiet.Please don't judge them too harshly - I am fully aware of the ramifications of not following a GF diet, but I also understand how overwhelming everything can be esp. when everyt
hing is 'urgent'.  You can only do so much.

I'm only responding so you don't think it's hopeless.  It just takes time, and I sincerely appreciate your efforts to advocate and educate people for the benefit of those with DS!  The more people spread the word, the bet
ter it is.

Diane, if the woman you talked with needs some resources specifically related to DS and CD, please feel free to pass my email address to her.  I'd be happy to communicate with her.  Or she can reach me at president@downsy
ndromedallas.com.

Thanks again,
Kelly T.



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