Guest guest Posted February 18, 2000 Report Share Posted February 18, 2000 Thanks for the info Lauri, We may be looking into this for JJ soon! & Garry, parents of (9), (8), JJ (6), (5), and Esther (3). All adopted & with Down Syndrome. ---------- >From: TLstein@... >onelist >Subject: gluten free diets >Date: Fri, Feb 18, 2000, 7:53 AM > >From: TLstein@... > >Hi, >Not sure if anyone mentioned this place before when discussing gluten free >diets, maybe so, but there is a place in New York that has a catalog with >ready to make mixes. Toll free number is 1-800-593-5377. I just called and >ordered the info. My friend's daughter, who has DS, has been on a gluten >free diet for almost two years. She says the bread, pancake mix, pretzels, >etc are all very good and ordering this way is alot easier than trying to >figure out how to make it from scratch. > >Lauri > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 Sandi, As soon as I get a free moment, I'll dig into my archives. When my kids were little (over 20 years ago) one of them didn't tolerate gluten. She didn't have celiac disease, just fool allergies. Anyhow, I made a good oat flour cracker back then that I'm sure I still have the recipe for. Also, think Asian food. For the most part, Asian food doesn't have the baddies, no dairy (which we still cannot use) and little wheat (just use the rice noodles). I've had to do egg, dairy, and wheatless diets. Getting the gluten out was by FAR the hardest. mom to Ramona 19ds, Clara 27nda and Elena 23nda << Message: 6 Date: Thu, 2 Jan 2003 12:01:40 EST From: sml524@... Subject: Please help, looking for gluten-free foods/snacks My daughter, Shelby (5ds) underwent a biopsy on Dec. 31, to determine for sure whether or not she has Celiac disease. The doctor wants us to go ahead and put her on a gluten-free diet, since she's almost certain that Shelby has the disease (her antibodies tested very high, 137). The biggest problem is that she has always had a very limited diet (all most all of which is now off limits) and is extremely reluctant to try anything new. For the past couple of days, she has basically lived off of grapes, fruit cups, corn chips, yogurt (which I'm not even 100% sure she can have) and noodles for dinner. She keeps asking me for food (goldfish crackers, regular crackers, all of her old standby's) and I feel horrible having to constantly tell her no. I desperately need to find some replacement snacks/crackers so that I'm at least not giving her corn chips everyday starting at 10:30am! Any advice from Mom's out there that have gone through this would be so helpful. I've seen a few online stores, but I'm a little weary of buying a lot of food products online, not too mention you have no idea what they taste like. I've already thrown out two different types of crackers that I bought at a local health food store that were horrible. I'm feeling so overwhelmed by all of this, especially since I am scheduled to have my 3rd child in two weeks, and my 17 month old has a nasty cold. Thanks so much for listening! Sandi Long >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 Hi: I sent something to Sandi privately, and then thought I sent something ot the list, but I bet I sent it to the other person who responded. I'm not good at this web page interface thing! Anyway, here is some information about Gluten free diets that I thought others who suspect their child with DS may have Celiac Disease would benefit from: If Shelby has already had the biopsy, then you will likely find out a definitive answer soon about Celiac Disease. In addition, having already done the biopsy, there is no medically-related reason to wait to give it a try. I would recommend the book, " Children with Celiac Disease " by Dana Korn (published by Woodbine House www.woodbinehouse.com or you can get it at your bookstore or amazon.com). It has some good day-to-day advice. It is not specific for kids with Down syndrome, but there are inclusions of information for kids on IEPs that you would find most helpful. The best study about CD in kids with Down syndrome was done by Ditza Zachor and I believe was published in Down Syndrome Quarterly. Her study changed the way the DS Healthcare Guidelines were written with regard to Celiac Disease when she first completed it. Joan Medlen Mom of (16) and Andy (13 w/ ds and autism) and a dietitian on the side Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 A great snack would be the Japenese rice crackers. You can get them in the ethnic section in the grocery store. They are very cruncy and a little salty...very satisfying. Mom to (8, DS) and Grace (5) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 Several years ago, as my weight was dropping, then gaining after treatment, I joined an online diet group named ediets.com. I checkin there every once in a while but have been lazy about following all the rules. I browsed their types of diets again a few days ago and they added gluten free menu and diet. They have charts, graphs, and come up with menus that fit your needs, including heart healthy, vegan, diabetic and all sorts of the common diets with variations in between. They give you a shopping list for the week with the menu. If you don't like a certain thing, you can click for a changed item. Weekly, the price is kind of high, but somehow I got on an annual schedule and it is about $60/year w/ a credit card. I think you can try a week free if you like. The website is ediets.com..... hmmmm or it is ediet.com. They also had options for premade food for lunch, but cook for dinner and it seems really flexible. Getting the recipes for gluten free may be the most helpful. I'll see if I can test run a week and post it here. Sandy Quote Link to comment Share on other sites More sharing options...
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