GF/CF scare tactic???I have since come around to the way of thinking that everyone has to choose which interventions seem best for their child and their family and no sane person can or should choose each one. For some people, the diet is a really good thing, and I fully support them, as long as they don't yell at me. ;-) Well for the children who NEED the diet, it IS like giving them poison to be on casein and gluten. Some are very sick little people, diareah for their whole lives, until they got on this diet. No wonder the parents are grateful for it. Thank God not all children have the same issues, and not all children need it. Thank God, too, that there are tasty alternatives for those children who do need it.
Ya know, Screech, I kind of get that same feeling sometimes when I talk with people who are really gung-ho about the diet. Some people almost act like if you're not doing it, then you must be a horrible parent. We actually tried the GFCF for a while before Ans was even dx'd and saw absolutely no changes.....although I'm sure there are some hard core GFCFers out there who would say we didn't do it right or didn't do it long enough - whatever. None of our doctors recommend the diet for Ansley, and our neuro (who's been working with autistic kids for decades) actually told us that he knows some that do it and some that don't and that there is no difference in the "amount" or level of autism or in the success rate, although some parents feel that it helps with symptoms - from a medical standpoint there was no difference. Now, there are many out there who would argue this, however I find that the ones arguing for it are also the ones leading the expensive seminars or selling books or pushing a specific lab for an expensive test........has to make you wonder. There are kids that have food allergies and I know that celiacs and other gi conditions can cause autistic symptoms, but even the experts will tell you that it's not the case in ALL autistic children. I've gotten over letting people try to make me feel bad for not continuing GFCF...........I wonder if these same parents do as much Floortime or ABA as I do with mine? It's funny how worked up people get over food....kind of like how vegetarians try to make you feel like a monster or murderer for eating meat! Everyone has to make their own decisions re this - I say, if it works for your child then by all means do it! If it doesn't work, then don't do it. Ansley eats a very well balanced diet and lots of fruits and veggies and hardly any dairy any way, so I'm not too worried about what she's eating or not eating right now. I do agree that Lewis' book does use "scare' tactics, but there are kids that do really well on the diet and makes an incredible difference in their lives. I think that there are many paths to autism and probably just as many treatments. I whole heartedly believe that therapy is the way to go, but if dietary measures make my daughter feel better and able to focus better..I want that for her. I tried the GF/CF diet without too much success and lots of heartburn on my part..YIKES. I have an appointment with a DAN Dr. to answer my questions on what biological treatments would help my daughter. From what I have read..most of the kids who do the best on the GF/CF diet have some true allergy symptoms..constipation, diarrhea, black circles under the eyes, rashes, truly craving milk or wheat products. I also believe that throw your energy into what you are really capable of. IF you can handle all the floor time and ABA, but just can't deal with GF/CF.. throw your energy into what you can handle. IF you have any inkling that you might what to try dietary intervention..do it while they are little..you see the results FASTER and it is much easier controlling their diet than when they are in kindergarten , but NEVER EVER EVER feel like a bad parent!!I actually had a biomedical expert tell me that I must not love my son, because I did not want to try the GFCF diet! I was really interested in what he had to say about supplements, but as soon as he made that comment, without even meeting my son, I tuned him out. He was the one, though who first turned me on to the benefits of magnesium and B-6.Yesterday I went to meet another parent with an autistic child. Her son is sooooo sweet! He is mellow, too. She did say, however, that he was never diagnosed with ADHD. AJ hasn't been diagnosed with it, either, however, I really do belive he has it 'cuz he never wants to sit still. Anyway, she allowed me to take a couple books home with me. (sweet) One of those books are "Special Diets for Special Kids" What I read angered me! It stated that I was basically giving opium to AJ and poisoning him!!! If I were to take away all the foods they said to, he won't have anything he likes to eat! I worked really hard to get him to eat different foods, and now I am supposed to yank them away...I THINK NOT!!!  I think the problem with that book is that it should contain a disclaimer, such like "If after so many attempts or days, please return to their normal diet". Because I know my son and many other autistic children can be VERY stubborn. If they can't eat what they want they WILL indeed starve to death. Sometimes it's not even stubborness, my older son has a bad sensory problem with textures of foods, and I've seen him in tears sad that he can't eat normal food. He will literally vomit as soon as it hits his tongue. You can't just force a certain diet down a child's throat and I'd much rather have my child eat SOMETHING than experiment and land him in the hospital with malnutrition. They call Autism a "spectrum" disorder for a reason. Each child is different and unique in their own way, and that includes their degree of tolerance or intolerance for certain foods, enviroments or objects. So, there is no broad answer for an individual problem.Danielle,We took him to an allergist. Actually, we can feed Luke all meat, veggies, fruit, and carbs like potatoes (no butter or sour cream) and rice. It's a broad diet in a way, except I can't "short-cut" ANYTHING be/c almost everything sold in stores today has either soy or yeast in it (he can't have vinegar products, including ketchup, mustard and BBQ sauce ... be/c yeast dwells within!). No OTC fried chicken, fries, frozen dinners, etc. No cold cuts either. No food from any fast food place that I'm aware of. He can maybe have a burger, sans bun, and a baked potato if we go to a restaurant. At first I thought exactly what you asked ... what on earth am I going to feed him?! It's not SO bad except that I have to make everything from scratch. Everything I feed HIM anyway. We eat a lot of Italian food (though we're not Italian  ),
so I have to alter some of my recipes to delete dairy and breads from
Luke's portions. I'm currently having a hard time with
lunches. He mostly gets dinner leftovers. Breakfast is a
crap shoot. There are only a few cereals he can have (all of them
healthy, of course), but he doesn't always want to eat cereal and
currently the only kind he likes anyway is raisin bran (though he won't
eat the raisins). He's been eating a lot of winter fruit lately
-- oranges and clementines. The milk I replace with rice milk and
anything with eggs I make with an egg replacement powder (made by
Ener-Gee).Good luck with the testing! Kellie Luke has been diagnosed with food allergies: dairy, soy, yeast, and eggs, but NOT to wheat, so we have Luke CF, but not GF. His inability to eat soy products makes feeding him VERY difficult. I'd prefer he were allergic to wheat instead of soy! It'd be easier to feed him! The problem isn't him liking foods, but the major way having the allergens affects his personality. Kellie, Did you see an allergist to find out what he was allergic to or a nutrionist? I haven't taken Logan yet. I think i am afraid to be told to take him off everything he loves to eat. What are some of the things you CAN feed Luke? Danielle If any of you are in the DFw tx. area go visit DR. Rao 972-964-7373plano Carrolton 972-394-1300 He is a Allergie/immunology Dr. who works with adhd/autism patients. What he does is all individual based. He does kids over 2 and even adults. Just to reaffirm what others have sad from a personal perspective, this isn't an issue for every child. There are some who will definnately benefit from the diet, but not every child will. I have Asperger's Syndrome. I was diagnosed fairly late in life (my sophmore year of highschool) and because of that no such treatments were tried on me. At the time I was litterally living off of wheat and dairy for the most part (Frosted mini-wheats with 1% milk 2-3 times a day). I experienced no change in the severity of my symptoms or any noteable behavior changes in going from a diet absolutely saturated with g/c to a diet absolutely free of it once I adjusted. The only thing I did notice was an increase in my symptoms when I underwent the transition in my diet, but it only lasted about a week and I was on the diet for months. For me tolerance/intolerance isn't an issue but regularity is (which is fine since I love structure and repetition anyway). Now, since I mostly lack an insiders perspective this could just be how I percieve it, though any time I do disrupt my diet my significant other notices an increase in the severity of my symptoms so I'm fairly certain its accurate. At the very least though, I can assure you that having the diet saturated in g/c had no negative effect on me. So yeah, don't worry about "poisoning your child with opiates". There is a chance it would help him behaviorally, but if it means starving him its not worth trying. Unless hes displaying much more visible symptoms indicating a dietary problem (constant GI problems) I wouldn't worry about it. Personally, had my mom tried this on me when I was young it would have been in vain and I would have starved to death, heh. I started the diet when my ds turned 2. We saw instant results, within one week, with eye contact. that was the only change we drastically noticed. I am by no means as strict with the diet as the book says to be. I don't have seperate pots and bowls and spoons and so on. My son was so young when we started that he didn't even notice the change. He also loves to eat almost anything you give him. It was an easy adjustment. I'm not sure it would have been so easy if he was older. I'm thinking about testing the diet and going off it just to see if anything changes. If he dosen't need the diet i would love to go off it and save some money. But if it helps him then i have to say it's worth it, and stay on it. Danielle we were going to do the diet if he had the celiec. but we got him tested and he does not. so we are ust keepin him off milk. b/c that helped him. but i am waitin for the dan appt in january 5th to see what he says. i hope i find out some things that are good. |
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