Guest guest Posted February 13, 2000 Report Share Posted February 13, 2000 Congratulations Loriann and !!! This is great news. I don't know if you were on the list when I took for her first formal dx of autism. I took her to the Dan Marino Center which opened recently down here and is THE place to go for ASD in our neck of the woods. The neurologist there even mentioned to us that he had seen good reports and read positive studies on the diet. We have had much slower results probably due to the GI infection that wasn't cleared up till last year. But I can't even imagine taking her off of it now. Sherry (at the other end of the world) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2000 Report Share Posted February 13, 2000 Lori: I have a question about the pragmatics of implementing this diet. Is everyone following a gluten free diet or just ? I've always wondered how people do this part, so I'm snooping, i guess. I've heard a lot of different attitudes about it in the celiac community. But I odn't want to forget to say: " Hurray ! " For showing us just how smart you are! Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2000 Report Share Posted February 14, 2000 It's too expensive for everyone to be on it, just is. We buy rice elbow macaroni and make it in a different pot (have to remember to use a different spoon so there's no cross contamination), and then pour a little of the cheese package on his and the rest on ours. Same thing with spaghetti and bread. I try to keep a loaf of his gf bread on hand because he loves grilled cheese. I just made some individual pizzas and froze them (3 are about the size of the personal pan at Pizza Hut and one is about 9 inches) so we can just pop them in the oven for 20-25 minutes. It's different having to make things from scratch, but a lot cheaper. I do have a bread machine for the bread, and dough for hamburger buns. The pizza dough was made my hand, though. The toughest part is finding a snack that he'll actually eat. I have found, though, that he seems more willing to try different foods now. Loriann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2000 Report Share Posted May 21, 2000 Gluten is in wheat, barley, oats and rye. And they use wheat starch in things like gravy and cream of whatever soups as a thickener. You also can't have anything that says modified corn starch, because it could be modified with wheat (sometimes it will say modified corn starch - modified with corn - I don't get that one either, so don't ask me). You have to go to a celiac web site to find out which vinegars are safe (Heinz is, I know) because sometimes they distil vinegar through wheat sometimes corn. Same for ketchup (Heinz is ok) and mustard (French's is safe). We try to eliminate all traces of wheat, barley, oats and rye and it has been successful. He wouldn't eat potato chips before, only Doritos, but Doritos have wheat in the ingredients so they're a no-no. I guess any chip is better than none. He also lived on cheese puffs, which are now also off the list. Loriann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2000 Report Share Posted May 21, 2000 Ok...call me Stooge again, what IS gluten? Is it wheat? Or is it in ALL starchy foods? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2000 Report Share Posted May 21, 2000 At 09:55 PM 5/21/00 EDT, Ltb3105@... wrote: >Ok...call me Stooge again, what IS gluten? Is it wheat? Or is it in ALL >starchy foods? Gluten is a protein that is found in most grain products: wheat, barley, oats, and rye. It gives baked products their shape. For instance, when you knead bread, part of what you are doing is kneading it to strengthen the gluten in the bread. When it bakes, the gluten is what holds the shape of the air pockets the yeast makes. Tha't is why potato, rice, and soy bread are sort of....flat and dense. Gluten is also found in many thickeners and preservatives, so the list of things to watchout for is rather lengthy. Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2000 Report Share Posted May 21, 2000 PS... There are some who believe that milk from cows who eat grain products is toxic to people who are on gluten free diets. This is how gluten and cassein free began when I was young (I had a wheat allergy...). Technically there is no gluten in milk when it is tested, but some folks choose to errr on the side of prudence. j Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2000 Report Share Posted August 3, 2000 In a message dated 8/2/00 8:06:44 PM Pacific Daylight Time, egroups writes: << Wow, this does not sound do-able to me, sounds like a lot of hard work and planning! >> Gail: I'm with you! With the other kids, me and DH needing to eat low fat, I can't see cooking three or four different meals..., especially, needs to eat things to make him GAIN weight and the rest of us except for (18 yr. old) should cut down on fat......lolol...... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2000 Report Share Posted August 3, 2000 In a message dated 8/3/00 4:52:03 PM Eastern Daylight Time, Ltb3105@... writes: << I'm with you! With the other kids, me and DH needing to eat low fat, I can't see cooking three or four different meals..., especially, needs to eat things to make him GAIN weight and the rest of us except for (18 yr. old) should cut down on fat......lolol...... >> , My diet is FAT!!!! if it's not fattening, it tastes gross! LOL Hubby is real good about his diet, but wouldn't be if he had to cook himself. LOL I would eat low fat things if I found anything worth eating. Haven't yet though! LOL Have yet to try 's recipe. The store didn't have any rice noodles. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 In a message dated 10/28/00 6:42:36 AM Pacific Daylight Time, Lucilledsl@... writes: << PS-my baby is due April 30, having amnio Nov 22, please keep in prayer! >> You are in our thoughts and prayers. Jeannie Mom to Mark and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 At 09:41 AM 10/28/00 EDT, you wrote: >I am now convinced to try GF/CF diet. I checked the web sites for foods >allowed, only problem is dinnertime. ny only eats chicken nuggets, >(packaged or McD's, won't eat what I cook), pasta or sometimesGerber toddler >microwave dinners, none of which are allowed. I can't come up with one food >for dinner. Any suggestions? How about having a " lunch " food instead? >Lucille >PS-my baby is due April 30, having amnio Nov 22, please keep in prayer! We will. j Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 lucille, your for sure in my prayers...... and the baby too of course.......take care, leah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2001 Report Share Posted October 20, 2001 Some sites that wil give you more information. >http://www.celiac.com/ >www.gfcfdiet.com >http://www.geocities.com/HotSprings/Spa/4003/gf-index.html Breakfast: Rice bread-toast Vanilla Yogurt GF Cereal Lunch: Left overs from dinners that I have frozen Dinner: Meat- hamburg, ham, steak, fish, chicken Vegatables- fresh or frozen Potatos/rice Fresh fruit This diet is hard in the beginning. We have had JJ on it about 1 1/2. for about 6 months. It gets easier. Got a poopy diaper to change, & Garry, parents of (11 ds), (10 ds), JJ (7 ds/autism/celiac), (7 ds/ADHD/Celiac), and Esther (4 ds). All adopted. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 In a message dated 11/1/01 9:23:12 PM Eastern Standard Time, ct616@... writes: > Nick is still not feeding himself...has the skill (we/ve seen it!) but > refuses to feed himself. The behavioral plan is 12 pages long and may take > a year to accomplish according to our behavior specialist who is one of the > nicest, most understanding people I have ever met. > So there's our diet dtory in a very long nutshell...does it help? > Cheri > When did you decide to see a behavioral specialist about the feeding himself? The reason I ask is because this is one of our goals for Rochelle this year. She has a weak grasp but she can spoon applesauce to her mouth. She just won't get it on the spoon or fork to scoop it. I have seen her scoop 3 or 4x in a row. But lately nothing. She will wait for me or grab it with her hands if I am not paying attention. She just doesn't seem motivated to imitate or do it on her own. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 Hi , I am sorry it has taken me so long to write this... Nick used to have a varied diet until signs of autism began to appear. Little by little he refused foods until he had a very rigid diet consisting of almost all wheat and dairy. His entire diet consisted of the following: BREAKFAST cream of wheat cereal prunes milk LUNCH yogurt (strawberry or strawberry banana only) baby food fruit (bananas or banana pineapple only) vanilla pudding milk DINNER cream of wheat cereal baby food fruit (pears or bananas) vanilla pudding milk he also drinks juice a couple of times a day...he's very, very rigid...there was one point when he had to see the banana and the Gerber baby on the jar or he wouldn't eat. We have come a long way since then. Before the diet change, he was in his own world about 90% of the time, he now spends 90% of his time being very involved with all us at home and in school. We atarted the diet change very slowly...started with the cream of wheat by replacing a tablespoon at a time with cream of rice or cream of buckwheat (which oddly isn't wheat). Now his diet consists of all the same type of food...but cereal is gluten free and milk is soy. We are now working on replacing the pudding and yogurt with soy...he will then be dairy free as well. It was pretty easy for us to do this because Nick's diet was (still is) very limited...we didn't have to take away anything that he really loved. As long as we kept color, consistency and the dish the same we were successful! We began to notice changes even with replacing just 1 spoonful of the cream of wheat. I was not convinced before trying the diet that there would be any changes...the doctor ok'd it but wasn't optimistic. For Nick, there is no doubt in our minds that his progress is somehow related to the diet. We are now getting ready to start this intensive feeding program with him...to get him to feed himself and then to get him to eat other foods, (gf/cf)...Nick is still not feeding himself...has the skill (we/ve seen it!) but refuses to feed himself. The behavioral plan is 12 pages long and may take a year to accomplish according to our behavior specialist who is one of the nicest, most understanding people I have ever met. So there's our diet dtory in a very long nutshell...does it help? Cheri gluten free diet Hi Cheri Can you explain me a bit more about the gluten free diet. Like of what such meals (breakfast, lunch and dinner) consist ? Can you advise me on some literature ? Thanks in advance and kind regards from sunny and very warm for this time of the year Switzerland with Tanja 12, Fabio 10 DS/?, Elena 7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2001 Report Share Posted November 2, 2001 In a message dated 11/2/01 5:04:20 PM Eastern Standard Time, ct616@... writes: > . I have been told that insurance won't pay for this so we were advised to > go through the school district...they have been GREAT! This whole thing > has taken a very long time but it seems like it was well put together by > the professionals so we're hoping... > How old is Rochelle? Nick is 7. He, too, is not motivated by eating or > food. > Cheri > > Hi Cheri, Rochelle is almost 5 1/2. We have just finished independent evaluations for her transition year. The school system was fine and paid for it all. No problem. We needed to find out what's going on with her. Next week we see Dr. Capone. I think Rochelle has autistic behaviors but the Psychologist said she really needs to be motivated to do something. She is to content. We haven't had the formal IEP with all the data put together. The Speech eval. talked about swallowing and helping her with liquids etc... The school tried to say it was a medical issue, blah blah blah. We need to get together as a team and fine tune her goals. This list group has been a boon to me. I've learned so much. Thanks everyone. And I don't know what to do about the eating. Your behavior plan for eating sounds so interesting. Please keep me posted. When you have any success I would love to know. I know you will have to be committed to it. Thanks for listening and good luck. Diane (mom to Rochelle ds-5 and Danny 7) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2001 Report Share Posted November 2, 2001 Hi, We tried to work on the feeding issue ourselves with the encouragement of his OT and speech therapist...they also tried at school but none of us had much success. Then we took him for a formal evaluation to diagnose the autism and asked a lot of questions about the feeding issue and his reluctance to eat other foods...one of Nick's OT's had suggested a feeding eval to make sure that nothing was physically wrong that he couldn't swallow foods with texture. So we had the autism diagnosis made in 12/00, we had the feeding eval done in 2/01, we were put on a waiting list and then talked to an intake coordinator in the Spring. We then had to approach the school district for funding since the program would be partially take place in school. One we got it on his IEP, they assigned a behavioral specialist who observed Nick at home and at school...she even had dinner with us one night. She then wrote a plan and presented it to all of us and now we are ready to start!!! Sorry about the long answer...I get really gabby sometimes especially about this since we are SO excited about finally starting. I have been told that insurance won't pay for this so we were advised to go through the school district...they have been GREAT! This whole thing has taken a very long time but it seems like it was well put together by the professionals so we're hoping... How old is Rochelle? Nick is 7. He, too, is not motivated by eating or food. Cheri Re: gluten free diet In a message dated 11/1/01 9:23:12 PM Eastern Standard Time, ct616@... writes: > Nick is still not feeding himself...has the skill (we/ve seen it!) but > refuses to feed himself. The behavioral plan is 12 pages long and may take > a year to accomplish according to our behavior specialist who is one of the > nicest, most understanding people I have ever met. > So there's our diet dtory in a very long nutshell...does it help? > Cheri > When did you decide to see a behavioral specialist about the feeding himself? The reason I ask is because this is one of our goals for Rochelle this year. She has a weak grasp but she can spoon applesauce to her mouth. She just won't get it on the spoon or fork to scoop it. I have seen her scoop 3 or 4x in a row. But lately nothing. She will wait for me or grab it with her hands if I am not paying attention. She just doesn't seem motivated to imitate or do it on her own. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2001 Report Share Posted November 2, 2001 I'm with you Diane,....I have learned a lot from everyone on this list and it is just so nice to talk to people who GET IT! that is our biggest problem, I think, that others who are not in our circumstances have a hard time understanding the enormousness of it all. Our school district also said that it could be medical but our evaluation was proof that it wasn't so that was good! Let's keep talking...I'll let you know how this whole thing works! Cheri Re: gluten free diet In a message dated 11/2/01 5:04:20 PM Eastern Standard Time, ct616@... writes: > . I have been told that insurance won't pay for this so we were advised to > go through the school district...they have been GREAT! This whole thing > has taken a very long time but it seems like it was well put together by > the professionals so we're hoping... > How old is Rochelle? Nick is 7. He, too, is not motivated by eating or > food. > Cheri > > Hi Cheri, Rochelle is almost 5 1/2. We have just finished independent evaluations for her transition year. The school system was fine and paid for it all. No problem. We needed to find out what's going on with her. Next week we see Dr. Capone. I think Rochelle has autistic behaviors but the Psychologist said she really needs to be motivated to do something. She is to content. We haven't had the formal IEP with all the data put together. The Speech eval. talked about swallowing and helping her with liquids etc... The school tried to say it was a medical issue, blah blah blah. We need to get together as a team and fine tune her goals. This list group has been a boon to me. I've learned so much. Thanks everyone. And I don't know what to do about the eating. Your behavior plan for eating sounds so interesting. Please keep me posted. When you have any success I would love to know. I know you will have to be committed to it. Thanks for listening and good luck. Diane (mom to Rochelle ds-5 and Danny 7) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2001 Report Share Posted November 3, 2001 In a message dated 11/3/01 10:23:29 AM Eastern Standard Time, ICANFIELD@... writes: > I do not remember exactly when ended up feeding himself , he > did have alot of OT & PT at a private school for kids with Down > Thanks Irma for the sites. I will add it to my collection. I didn't know they had private schools for Down Syndrome. The only one I know of is in Long Island. Sometimes I wonder if I do to much for her in the self-help area. Her brother had the same OT/PT issues but eventually learned. I just get anxious when I think she is taking to long to learn. I wish the OT an PT's would give me homework. Sometimes I know what I should do but need reminders because there is so much. But I need the homework everynight. Just not organized enough with my time unless I know it has to be done. I just discovered a cereal Rochelle likes better than cheerios. They are called Panda Puffs with a slight Peanut butter taste. We get them at Fresh Fields. They look like Kix but I think you can have them for the gfcf diet. I just plain like them. She will even eat that Soy Ice Cream. Yuch! The soy yogurt is better. Sorry to go on. Diane (mom to Rochelle ds-5 and Danny 7) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2001 Report Share Posted November 3, 2001 She will wait for me or grab it with her hands if I am not paying attention. She just doesn't seem motivated to imitate or do it on her own. > Diane > Diane , I do not remember exactly when ended up feeding himself , he did have alot of OT & PT at a private school for kids with Down syndrome to help with this issue when he was younger . I know he ate alot of finger food, then I would help him hold his spoon . Once he was able to eat table food , he was introduced to placing a cheerio towards the side of his mouth to work with the tongue and learn how to chew . This was our daily therapy at home along with some other excerises , he also had to learn how to pick a cheerio or cube jello up to learn how to pinch or grasp, using his fingers . I guess this is one of the reason why he is tired of Cheerios these days . It took alot of practice to learn the hang of using the tongue , finger pinching , the hang of grasping an object . So this is good news on Rochelle learning how to scoop the applesauce , even if nothing was picked up . Her brain needs to focus the concept of the steps needed, even with assistance , I too , had to help alot . Rochelle is 5 , so she'll learn the habit training ,hand coordination and her brain picking up the steps needed . It'll take some time to get the hang of having a strong grip then you could slowly fade off with the assistance, the same goes for learning how to drink and holding a cup. If I get a chance to glance at 's earlier days of his goals , I'll be glad to share them . I'm typing this in between my cleaning , so excuse me if I did not make any sense . I wanted to share some more never-ending sites with you . So luck if you get a chance . I know you had mention other stuff on several post , so its a combo to some of your other questions . http://comeunity.com/premature/child/growth/dysphagia.html http://www.comeunity.com/premature/child/growth/feeding-hints.html http://www.autism.mybravenet.com/ http://www.gfcfdiet.com/Beginningthediet.htm http://kinderstart.com/childdevelopment/specialneedschild/generalinfor mation.html (might have to type this one ) http://www.nutritionnc.com/special/eligible.htm http://www.oreilly.com/medical/autism/news/diet.html AUTISM STORIES: http://healthboards.com/autism/5171.html http:healthboards.com/autism/4922.html Boy ! Time flies . Glad to read that Dr.'s Capone's visit is soon . Many prayers that you will find some answers . Hearing from a medical professional is such a relief , especially when you know others have had their children seen by him and had good reports of their visits . Take care and Good luck . Irma, 13,DS/ASD. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2002 Report Share Posted June 24, 2002 I said before that my doctor flat out refused to even test me. I got up this morning so cranky! You wouldn't believe it. So I started going through my head what I had to eat all day yesterday. Breakfast was gf cereal, for lunch we had sandwiches (I had gf bread and salami) and a salad. I basically just snacked for supper, which is what we do on Sunday. Couldn't figure it out. Then I realized I put mayonnaise on my sandwich, out of the community jar. I bought a dedicated mayo today. It's taken me 2 meals to not be cranky. Boy, if this is what it did to , no wonder he was a behavior problem. I thought it was as bad as any PMS I've had! As for books, I've just learned to make gf alternates. I substitute 1 cup of flour with 2/3 cup white rice flour, 1/3 cup potato starch and 1 teaspoon guar gum. I just got a bread emulsifier from GFPantry and I'm going to try that next batch. If you can buy in bulk, it's worth it even with shipping. I have The Gluten Free Gourmet (?) and one for kids that has an awesome chocolate chip cookie recipe. I think it's against copy rights to post it, but I'll look up the name of the book later. I'm going to try their pre-made pizzas tonight. Loriann AKA Flitter the Christian clown Wife to Dewight Mom to , 12 years, Down Syndrome, PDD-NOS and Celiac Disease. , 3 years and Strong Willed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2007 Report Share Posted August 10, 2007 There is a group called GFCF kids that has lots of info. Pamela " Courage is doing what you're afraid to do. There can be no courage unless you're scared. " Eddie Rickenbacker, top US fighter ace, WWI From: EOHarm [mailto:EOHarm ] On Behalf Of jkvannoord Sent: Friday, August 10, 2007 3:57 PM EOHarm Subject: Gluten free diet My 4 yr old daughter was diagnoised with Celiac Sprue and is required to eat a gluten free diet. Does anyone have any good hints about what tastes good and has worked for your kids? What kind of products from a health food store have worked for you? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2007 Report Share Posted August 10, 2007 Foods By chocolate brownies are amazing. They're casein, soy and gluten free and our kids have no adverse reaction to them. The " " of Foods By has/had a celiac girlfriend and he created his stuff for her. Some brands say they're free of certain things but the mistakes are sometimes made in the manufacturing. We always know because our kids will wake up at night if they get so much as a micron of gluten, soy or casein. Earth's Best is unreliable in this sense and makes no guarantees to be free of these things. " The Gluten-free Bible " is a pretty good guide to gluten free living, though it doesn't get much into some cross-intolerances like casein and soy (or related proteins, like in aspartame I think). Most celiac societies deny that celiac disease could be caused by environment or is related to autism in this sense in spite of the recent epidemic- level increase in cases of celiac. It's too bad because there are probably many celiacs who could benefit from DAN type biomedical interventions. We've stopped trying to find a gluten-free bread because our twins also can't tolerate yeast or soy. Once you start trying to find breads free of all those things (including casein, which they have the least tolerance for), they can get pretty gross. Dh says he's going to try to make an all-corn bread at some point but has yet to get to it! The least-disgusting bread we found was in the freezer section of the healthfood store and was called fiber bread. Something about the added fiber made it taste almost like real bread. Kinnekinick (sp?) white bread tasted all right but was full of so many additives that we weren't comfortable giving it to our children. The kids are on sort of an Asian/African bread-free diet. > > My 4 yr old daughter was diagnoised with Celiac Sprue and is required to eat a gluten free > diet. Does anyone have any good hints about what tastes good and has worked for your > kids? What kind of products from a health food store have worked for you? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2007 Report Share Posted August 11, 2007 You could also check out the Specific Carbohydrate Diet. It is even more "gluten-free" than gfcf diets, but may be a bit more difficult to adhere to "religiously", as there are more disallowed starchy foods on that diet. Still, it may help your daughter, as the scd diet was originally designed (many decades ago) to help people with celiac disease. Information can be found at www.breakingtheviciouscycle.info and recipes at www.pecanbread.com . Aasajkvannoord <jkvannoord@...> wrote: My 4 yr old daughter was diagnoised with Celiac Sprue and is required to eat a gluten free diet. Does anyone have any good hints about what tastes good and has worked for your kids? What kind of products from a health food store have worked for you? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2011 Report Share Posted July 8, 2011 Hi all, I've just started a gluten free diet but I think I'm getting withdrawal symptoms!! Has anyone else had any problems when they've cut out gluten? Nothing major just headaches and feeling a bit under the weather. I'm hoping it won't last too long anyway. Quote Link to comment Share on other sites More sharing options...
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