Anyone tried the diet intervention?..m

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Registered: 04-17-2003
Anyone tried the diet intervention?..m
Wed, 07-30-2003 - 1:49am

We're seeing a Phd who is more into dietary intervention. Anyone tired this route before? What are the results?I feel very skeptical about the whole thing, I hope we're not just wasting our time going to this PhD.My ds is very high functioning,(pdd-nos) has a little problem with attention, but I feel that is something that we can work-on, with a little behavior modification, and the st,ot, that he gets from school.The phd referred us to a allergy and environmental allergy doc. for testings.I haven't started the GFCf diet, because I want to know what the results of the testing first before I do something drastic, that is eliminating the casein and gluten. Anyone with the experience?


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Registered: 03-26-2003
Wed, 07-30-2003 - 10:34am
First off, kudos to your doc for even realizing that there IS a dietary intervention! So many would rather get kickbacks from pharmaceutical corps. and put a kid on meds - even before a dx is actually confirmed!! Sounds like you've got a keeper in your doc!

On another board I belong to with kids of all ranges of ASD, I have heard many MANY success stories of the GFCF diet (and for some others, it didn't really do much). We personally haven't tried the GFCF diet, but we have done our own "version" of it. We realized that Tristan (7yo, PDD-NOS among other things) was getting on the aggressive side when he ate/eats too much (direct)dairy -- milk, ice cream, etc. He seems to do fine with cheese and yogurt and such. Once we cut back on those, it did make a difference. Not nearly as aggressive, even a *bit* cuddly and comapssionate. His attention even seemed a little more focused. That's what our version of the "GF" diet did for us.

Naturally, we've also cut waaaaaaaay back on the artificial sweeteners and preservatives, as well as regular sweets. Only in moderation, and slim even at that. A few of the common place, every-day diets that we have adapted into our own are the diabetic, Kosher, and even Amish/Pennsylvania Dutch. Okay, so they aren't "diets" per se, but rather lifestyle eatings. But, adaptations from those sorts of things made a diet that works for Tristan, and is capable and enjoyable for the entire family!

A few websites to get good info on GFCF diets and their stories are

-and- (with a specific page about whether your child is a candidate for the GFCF diet at )

I hope this gave you a little bit of what you were looking for. Again, I say congrats to you for having a doc who is even considering alt. treatments such as this. (Our doc took her initial look at Tristan last year, and said, "Well, I believe he is ADHD and possibly PDD-NOS, so let's get him started on Tenex right away." And she does NOT believe that diet can help anything at we just ignore her about that part! ROFL)


Hollyann(5yo, NT), and Tristan(7yo, PDD-NOS, ADHD, bipolar, sensorineural hearing loss to the left side)

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Registered: 07-11-2003
Wed, 07-30-2003 - 3:31pm
Hi C, I agree with you that you should wait for the results of the testing before you start the GFCF. Our dr actually ran trials of the diet before putting anyone in the family on it full time. Of 5 Aspies in the house only DH is now on the diet, and even then its only CF, not GF. He has no problems with gluten but the after effects of ingesting casean are really appearant in him. None of the kids are on the diet, except the baby (7mo), but her ped feels it may be a rather common milk compound intolllerance with her and that she may out grow it.

To describe the difference in DH going CF.....He is fine for about a day after having any form of casean, but after it fully digests in his system and wears off he turns into Mr Hyde. It's like he's coming down off of Heroin or something. He goes from being very withdrawn, silent, non-inertactive to being mean, nasty, and viscious. During the withdrawl stage he snaps and yells at people for no reason, children are treated like criminals for just being children, and no one around him can do anything right. He didn't see the difference himself for the first few months, so we spent a lot of time going back and forth over the issue. He decided the dr was right after it got to the point where our 3yo could tell when he had snuch a cheeseburger or something. "Mommy! Daddy did the milk thing!" LOL Now he sees the difference himself. He says when he has casean he feels angry, not over anything in particular, just angry. And because he can't figure out WHY he's angry he gets more angry. His prominant emergancey survival technique is narcophazia (like narcolepsy but not a seizure......he just falls asleep when overstimmulated) so when he feels that anger comming on now he starts to get uncontrollably sleepy. So, it's either yell or sleep. We preffer he sleeps. LOL

Actually, we preffer he just doesn't have the casean, which now, he doesn't. He is very careful to stay away from it now. He goes ahead and eats the lunches I pack for him and has gotten used to reading lables. It gets pretty tiring sometimes, having to read every single thing before buying it, learning what every single ingrediant that that has cesean is called, etc, but it's worth it.

My other Aspies have no food intollerances or allergies at all though. They act exactly the same whether go for a week without or drink a gallon of milk at once. gulten doesn't effect them, niether does yeast, dyes, ect. Only Eva, who is diabetic, has reactions to carbs.

If you get the tests back and there is no evidance of intollerance or allergies I wouldn't bother with the CFGF. It's increadbley hard to maintain and you don't want to deprive anyone of the other nutrients in milk or wheat w/o really good reason. But on the other hand, if there turns out to be allergies to dyes, milk compounds, etc, then you should give it a shot (but remeber the vitamins). If you do decide to go that rout, over on the Autism Board we have a member who is extrememly knowlegable on the CFGF. She has been a great source of info for me and others in dealing with food allergies. Your welcome to come over and ask questions anytime.

Sorry this got so long, LOL, I didn't mean to ramble.



iVillage Member
Registered: 04-17-2003
Wed, 07-30-2003 - 4:30pm
Thank you Carrie and Candes for your inputs, it's very informative.The reason for my skeptism is that my ds don't have any real agressive behavior or anything intolerable before or after he takes any milk or any other foods that has casein in it. Dh an Aspie (undiagnose) doesn't have any food intolerance as far as I know, he might be getting a little intolerant with milk 'cause he seems to get tummy aches when he over eats cheese, but that also happens with too much hamburger, he just take it to him getting older and metabolism doesn't work as good.Right now, we only decrease my ds's milk consumption, never noticed any much difference either.The allergy Doc. also mentioned that it may also help to saty away from too much dyes, aspartame or msg.Keeping my fingers cross that we don't have to do the diet.

Thanks again,