I am the parent of a 15 year old that long ago gave up the diet but am now going to try it again. I don't think I gave it enough time and recently someone told me they thought all autistic kids should be on the diet. Any thoughts?
There is nothing proven to support the diet. But if you can, I'd say give it a try. I can't, but wish I could.
From what I have read and heard, about 1/3 of kids with autism make major improvements on the diet. Another 1/3 show some improvement on the diet. The last 1/3 show no improvement. Although I haven't gone gung-ho on the diet and only took away dairy products for about 2 1/2 weeks - I saw no improvement at all. I think it works better for kids who have a limited diet to begin with and/or have cravings for wheat or dairy. My son eats a very wide variety of foods and has no cravings for wheat or dairy. He eats a ton of food and most of it is very healthy (fruits, veggies, whole grains, etc.). He has been known to choose fruit over birthday cake. Not sure how that gene mutated because both my dh and I have sweet tooths!
Anyway, I don't know how easy it would be to change someone's diet at age 15. I would think it would be tremendously difficult. I've heard that it is best to start the diet before they enter all-day school where they get meals - just in terms of age. But, I suppose it doesn't ever hurt to try! Although I think you need to be careful that your child is getting all the proper nutrients that he needs and all the right vitamins.
My son eats a wide variety of foods and has a very healthy diet, however he does (well did) crave milk. So we took him completely off dairy 3 weeks ago and haven't seen any change at all. However, now he drinks no milk whatsoever - turns up his nose at all substitutes, doesn't get upset but just asks for juice instead. Anyway, I don't see any reason to keep him dairy free since we see no positive impact of dairy free. It's more of a negative impact since now without milk he gets less nutrition.
Because my son is a good eater - heck, we go out for chinese all the time and it cracks me up to see two 6 year olds devour a plate of calamari. C's favorite all time food is chicken & pork potstickers, with penne alla vodka a close second. We have continued to see steady progress with behavioral based approaches without GF/CF so I have no intention of trying it at this point.
We don't do the diet. I think my son had the urinary peptide test as part of his autism evaluation at the hospital -- in any case, they told us that they were checking to see if his autism could be improved through diet, and then told us the urine test results were normal.
I'm not sure if a regular pediatrician can order the urinary peptide test, but you can order it privately.
The Norwegian government has concluded that studies of the effectiveness of GFCF diets are few and of varying quality, so they can't recommend the diet but don't dismiss it either. They acknowledge that there is enough basis for some people to consider trying it.
They recommend the following steps:
1) Get a physical.
2) Consult a nutrition specialist to evaluate current diet and get advice on how these foods can be replaced by GFCF foods. GFCF foods tend to have less protein, calcium, fiber, and B-vitamins than regular foods, so supplements might be necessary.
3) Do a test for celiac disease before starting the diet (I get the impression that the test will be invalid if done while on a GF diet).
4) Consider how a strict diet will work for the child and the whole family. How will you be able to handle a new source of conflict ("no, you can't eat that" and then maybe the child starts sneaking food). How will you be able to handle new limits on your social life (hard to eat out)? Might the diet worsen your child's food issues/aversions and skepticism towards new foods? Do you have time to prepare special foods? Will the whole family eat GFCF foods?
5) Consider the financial impact of buying more expensive GFCF foods.
6) Seek information through autism organizations, but also organizations with expertise on other problems affecting diet (like milk allergies and celiac disease).
7) Plan how to evaluate the diet's success. Keep a diary.
8) Cooperate with daycare and school in implementing and evaluating the diet.
9) Implement slowly, focusing at first on just one meal-type. I'll use the example of breakfast. After several days (or more) practice with GFCF breakfasts, work on another meal-type and then another until you have a completely GFCF diet.
10) Stay in contact with the doctor and nutritionist (to make sure the child follows a good growth curve, among other things).
Good luck with everything!
Some say special diets/supplements/neurofeedback are not a known thing to improve disorder's. Remember special diets are expensive also. Sneaking will happen I know our son will do that.Just to reply to all interested. We have been on the diet for two weeks and our son's diet has actually improved! He used to only eat bread, meat, and cheese. Now he eats meat, some fruits, some vegtables and because we all are hungry all the time, he is trying more and more foods that he definetly wouldn't before so even if the diet doesn't do anything for him except improve his health, it will be worth it. The diet forces you to eat better. You can't rely on McDonalds for your meals two or three times a week. As a family, we are eating better. We are trying to stay away from the packaged gfcf stuff because of the expense and are actually cooking real food. At fifteen, we were afraid of his reaction to all this but he has actually taken it in stride with some complaining but getting less and less as he realizes we are sticking to it. He tended to be overweight and needed to lose some weight just for his health and that is happening also, not because we are witholding food, just because we don't eat junk food like we did before. My husband and I are on the diet also just to be able to relate to his situation better and we are finding our own health improving. I have noticed more energy in my son these days and way less irritable.
I wish I had done this years ago so any of you thinking about it should know that it is do-able. Hunger will force your child to give new foods a try and they won't starve. We always have things he can eat at hand.
Thanks
Alice
I would love to try it, just to see.I cant, because C has a very limited diet, due to oral sensory issues. Everything he eats would not be allowed, an dI cant find subs for most of the foods. He is on alot of supplements, and I think some have helped. I dont think all kids need to be on it. All ASD kids are different, and different treatments work for some and not others. It is a very individual thing.
I am a supporter of the diet for my son. We used to get notes home from school about how bad his gas was and he was always constipated. Now the gas is gone and no more constipation. The thing I have learned from it all is more plant based foods and less protein. I love liquid supplements cause you can hide them with juices. Daniel loved the V8 Futions so I will get them again. My basic protein thing is the meat has healthy oil added to it with Sesson all and then bake it. Very easy!I have seen small improvements with my son and huge improvements with my friends children with the diet. Improvements in a week eliminating dairy and within a month and 1/2 eliminating wheat (with mistakes). I was making wheat mistakes that I did not even realize---that takes a bit of research and a good book. This taca link is a good start point. If you want more detail/have questions feel free to pm me. MHO- do the diet, see for yourself.
http://www.talkaboutcuringautism.org/gfcf-diet/dietinfo.htm
The diet really works for my 2 kids. When there are slip ups life is hellish! Lizhmmm... i think its so interesting this diet has been impleimented and seems to work for so many. I had my doubts when I first heard of it, but its hard to refute many people all saying it works, maby their is something too it.My goodness, hasn't this topic received some exposure over the past few months! (Caused quite a bit of controversy in 'Blog world'!)
Our son has been on a GFCF diet for some time. It has been very effective for us in terms of the behaviour changes we have seen. (We also cut out all artificial colours, preservatives and additives, as well as soy and nuts - which he has shown allergies to.) My husband calls it the 'carrot stick diet'!
We are always very conscious of making sure we supplement the nutrients that he is missing out on (such as dairy).
It has been a long journey with the changeover and to begin with it was certainly no 'walk in the park'. We explain everything that we did in our blog. Click here to check it out if you like - posts under the category of Autism Diet.
I think everyone sees different results, but then maybe we also have different expectations.
Certainly worth giving it a try!
Keep in touch with how you go.
Elissa.
I talked to my dev ped about this and she asked some questions and determined that Noah doesn't have any gut issues so it would probably not be worth it.
He has a great diet and eats tons of fruit and veggies. I guess if Noah was on it, the whole family would need to be as well. It sounds like a lot of work and since my ped wasn't too keen it it, I won't be trying it..