My DD is Autistic...GFCF diet??

[BlondeAlligator]

I found out this Spring that my DD (age 3 1/2) is on the spectrum. It is something that I kind of suspected for a while, but now that we have seen it in writing, it's been a little hard to take. She is really high-functioning, speaks well (though not conversationally) is a little social, very smart & very happy. I thank my lucky stars every day that she is as well-off as she is. We have her enrolled in an excellent early childhood program through our school district, 2 1/2 hours each day of the week. She LOVES it! Since she began the first week of March, she has already come out of her shell a bit, her sensory issues are improving, and she is not as clingy to me. We are starting her in speech therapy 1x/week next Tuesday; I am hoping that will help progress things, too.

I was wondering if anyone here has tried the gluten free/casein free diet with their ASD child? My DH's family has a history of Celiac disease, so we are thinking that it would be a good idea to try the diet, but the implementation of it is overwhelming. Any thoughts/advice?

This board was and is so helpful to me...I don't often post, but reading your words of encouragement has really helped me through a difficult few months. We are going to WDW for DD's second trip in December (first time was last Halloween...she LOVED it & we saw some real progress in her while we were there). I can't wait to take her back.

Thanks for listening.

Allison

 

[KathyRN137]

We have an 8yr old autistic son who was diagnosed at just under 3yrs. He sounds alot like your DD! We tried a couple of times to do GF, but he always balked at the substitute foods...we have not ruled it out for the future, though.

We did have success with CF. DS used to present with marked echolalia (only language was echoing what was said to him; like a parrot). After about a week of CF he stopped! Now, this was when he was 3 yrs and had just begun school with an ABA-based program AND his speech therapy, so we weren't sure if the diet was key. So after about a year, I did an experiment and let him have his milk and cheese again. Within 3 days, the echolalia started creeping back. Since then, he has been CF.

One of his teachers did her Master's thesis on GF/CF diet and ASD. She told me the research shows that diet helps some kids, but not others. It's a trial-and-error thing! Go for it!!

Kathy

 

[tacomaranch]

Hi,
First a big hug to you. I know what you mean seeing it in black and white. We knew something was just a bit off but to see it was a shock. Please email me anytime if you just need to vent. Cry often but still keep goal and get them done. Work hard for you DD she is counting on you!

As for diet. My DS won't eat most food anyways so why take away from what little he does eat. However, I have heard such great things about GFCF diets. We have just removed dairy per a friends suggestion. I don't see any difference. This has been a bad week though.

Good luck and do let us know if you try the diet and if it helps!

 

[AJKMOM]

The thought of eliminating all those things from DS's diet just overwhelmed me. He wouldn't eat the gluten free spaghetti, but he does like fruits and vegetables. I actually thought about renting a cabin in the woods and packing the car with only GF/CF foods. We could go "cold turkey", and see if it worked.

However, I was talking to a friend who is an aide in a Special Ed. class in Ohio, and she said they tried it with the whole class of autistic kids. After two weeks they quit because they did not see an improvement in 6 kids in that time period. We always try different treatments if we think they 1. might help, and 2. won't hurt. I would say that if you could find a way to implement the diet, then go for it, because it sure won't hurt. Good luck.

 

[Schmeck]

However, I was talking to a friend who is an aide in a Special Ed. class in Ohio, and she said they tried it with the whole class of autistic kids. After two weeks they quit because they did not see an improvement in 6 kids in that time period. We always try different treatments if we think they 1. might help, and 2. won't hurt. I would say that if you could find a way to implemnet the diet, then go for it, because it sure won't hurt. good luck.

Unless the diet was also being done at home, whatever was done in class proves nothing. Was this just being done in class, at the teacher's deicretion, or was this something the parents of the students were involved in as well?

 

[BlondeAlligator]

Thanks, everyone, for your replies. We have sort of started weaning her off of some of the worst gluten offenders. She hasn't had Cheerios for a week, no Goldfish or Teddy Grahams, either. She is such a picky eater that I'm not sure how this will go, but I'm willing to try anything. I have read that once the G&C are out of the system, the kids seem more willing to try new foods because they aren't craving the gluten fix. This could take several weeks or months, though. I'll keep posting & let oyu all know how it goes.

Thanks again, & have a great weekend, everyone!

Allison

 

[AJKMOM]

I read that in order to determine if the diet really works for the patient, it must be total elimination of gluten/casein. Even the smallest amount can drastically affect someone who is allergic. So, you can't be sure if it will help until all traces are eliminated from their system.

As far as the Ohio spec. ed. class, I wondered,too, if the families at home were following the protocol. They told the teacher they were, but who knows.

 

[madhug]

My 5 year old daughter with severe ASD started the diet and DAN protocol in late December 2005 and we saw immediate results removing milk. The improvements have increased over the last four months and she has gained up to a full year developmentally in some areas. I have found substitute foods that my entire family will eat, but it took time and research. We are with a great doctor in our area who helped with supplementation and testing as well. We found issues like yeast overgrowth, vaccine overimmunity, and food allergies that we would not otherwise have been aware of. All of these are medically treatable. As we treat them, she improves. I lead a support group in our area and 6 of 12 women have their child on the protocol in one stage or another, 5 of 12 have seen improvement worthy of continuing and the other 6 are now doing some serious reading about it. The book that best outlines the DAN (Defeat Autism Now) protocol is called Children with Starving Brains.