Guest guest Posted March 2, 2004 Report Share Posted March 2, 2004 Casey, have you checked with the GFCF list serve like this one. I use to be on it... but emails got to be overwhelming with all the clubs I am in. I heard of great results from the diet. Dayton in general almost on it.. over yrs what he allergic to and ect.. Side note... Uncle Ben's instant rice is gluten free Only rice I buy now... since they are so special to mark it on the box! I can tell if Dayton eats corn products what a difference it makes in him. WOOH! ...mom to 10yr,Dayton 5yr, and 21months GFCF diet Hello,I was wondering if anyone has seriously done the gluen-free, cassein-free diet for any of their children. doesn't need it, but my 16 year old seems to, at least for a 4-6 month trial, to see if he is allergic to wheat and/or dairy. I'm a little overwhelmed with the additional time it will take to learn about it, find flour substitutes etc, when my time is so crazy already. . . This is complicated by the fact that we are vegetarian, so what to feed a 16 year old boy without giving him meat, fish, diary, or wheat??I know that this diet is often used for autism and ASD/PDD, so I thought some of you might have experience with it. Let me know, if you do. Thanks!Casey, mom to (DS) and , 4 http://DSyndrome.com/Multiples Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2004 Report Share Posted March 4, 2004 has Celiac's so we have no choice but to do the Gluten Free and I will say it is VERY difficult. It is also an expensive diet, the specialty foods are really pricey. He has been on the diet for a year now. We don't do the casien free though, because he is only on it for Celiac's not any of the behavior things. mom to (DS), , Alec (age 9) and Hunter (age 6) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2005 Report Share Posted August 4, 2005 I admit I have not been following much of the conversation here so forgive me if this is old news but I just learned that the medwaiver will cover GFCF foods if you happen to be lucky enough to have that; at least in Florida. I don't know how they determine cost but a support coordinator can help (child has to have Autism). Just some old news for encouragement; we put on GFCF in 1999 right after an endoscopy from which we were told she did not have celiac even tho the blood tests were positive. Since then we have been to SuperGI at UMiami who is 105 years old I believe but who maintains along with the GIs we have seen subsequently that she surely has celiac or she would not have tested positive ( I think it was anti endomysial antibodies she tested positive for and neg for antigliadin) and they have all encouraged us to keep her on the diet. We are fortunate that responds very well to dietary intervention and that her diet has been controlled since birth so we didn't have to go thru alot of the fights that those of you starting now would have to endure (Thank God). Her scope did show severe gastritis several times even after GFCF and after a couple of years she began having symptoms and pain again so I took my last and final (honest) leap of faith and gave the specific carbohydrate diet a try (not lowcarb) pecanbread.com....an old old diet created for Chrohn's disease and IBS and the like. It is GFCF but more extreme and alot more work but it really made a huge difference and she has been very stable since then (It's been 2 years or more now). We now have our PCA helper do most of the cooking which is quite a task but seems to be painfree for the first time in her life. Just an added note to consider if GFCF doesn't work or stops working. Speaking of quinoa, we used tapioca, names (which are the " real " yam )and are a white tuber that can be used like potato, jicama, and all kinds of weird flours to sub for wheat. We have a thriving Latino population here so there are alot of strange (to me) foods available. There are sooo many GFCF products available now that it is much easier to find substitutes even tho they're expensive. Just my 2 cents or 3 or 4 Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2005 Report Share Posted August 4, 2005 Thanks Sherry, Glad to read your mission on this route. This is wonderful that is doing well on this diet. Thank you for also mentioning on the scope, I was wondering if I should have this done? I've attended one of Dr. Wakefield's Medical Conference this past April which he helped pay for me to attend and the thought of most kids with autism or any Developmental Disabilities having so much GI issues and in pain. It breaks my heart to know that is experiencing the same, as I had witness too much at the conference that I could relate to observing . Dr. Krigsman has also been great sharing information of patients that they have been sharing their research on and treatments applied. After reading your post I am convinced this should be done. I guess I'll finish the application today and send it off so that he can be on a wait list as they are in the process of getting their license out here in Texas and it is a very long wait list. Who knows if I continue seeing in pain or not himself I'll just have to fly out to New York to have him seen by Dr. Krigsman. Your 2 plus cents is always worth alot. Thanks, Irma,17,DS/ASD Quote Link to comment Share on other sites More sharing options...
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