Major Diet Change..??

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Registered: 03-27-2003
Major Diet Change..??
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Wed, 11-08-2006 - 11:51am
Hi everyone.

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Registered: 09-09-2005
Wed, 11-08-2006 - 1:06pm

Well,

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Registered: 08-26-2005
Wed, 11-08-2006 - 3:46pm
Lisa,
As soon as Jake was diagnosed we tried the diet and only lasted about 2 weeks on it because Jake wouldn't eat anything we made him. He's is a very picky eater but it got even worse on the diet. We obviuosly were not on it long enough to see any benefits and I have heard some people love it and see a difference in behavior and then some people think it makes no difference at all. I personally think it's worth trying and it's not harmful, just a pain in the butt.
Teresa
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Registered: 07-12-2005
Wed, 11-08-2006 - 3:53pm

We don't practice the gfcf diet, thoguh two members of my family are severily allergic to dairy, so I can make some suggestions there.

For butter substitutes we use Nucoa margerine for baking and Blue Bonnet Light as a regular spread. The Blue Bonnet doesn't bake or cook well, but the Nucoa is pretty much 100% fat, so it's balancing act.

We've foud that Toffuti products are usually quite tasty. They make all sorts of things from dairy free ice creams to dairy free cheese. But they're higher in sugars, if your watching those. They make a great cream cheese subsitute!

Other than that we use Rice Dream brand rice milk. My hubby and DD won't drink soymilk.

I don't make the entire family adhere to a dairy free diet through. One thing you have to keep in mind with that while it may not feel 'fair' to the person with allergy it's unhealthy for the people who aren't allergic if you force them to adhere to teh diet too. I actually go out of my way to make sure my other girls (and myself) get real milk, ice cream, and yogurt so we get the calcium and stuff that we need in the naturalest way possible. I also go out of my way to get my DH and yougest DD special treats to make up for it. They are especially fond of Cutties by Toffuti and Toffuti's cream cheese subsitute.

I have tons of dairy free recipes for dinners, lunches, etc. Not all of them are gluten-free, but here's a link where I posted a few before. http://www.asdrendrewolf.org/naturalremedies/kitchens/candes.htm

~Candes

APOV on Autism

Avatar for littleroses
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Registered: 03-28-2003
Wed, 11-08-2006 - 4:10pm

You might also consider only doing one thing at a time. My dd never seemed to have any dairy issues. I'm not really sure about gluten...but we went gfcf Rambo style and there were no improvements. I have a friend here in town who went gfcf for her son and believed she saw improvement. Then she gave gluten and casein back to him because he was going in for a celiac test and she said she didn't see any regression or negative reports. Anyway, the best advice you might hear in trying new interventions for an ASD kid is to go slowly. One thing at a time or else you may not know exactly what is working and what is a waste of time.

The doctor may recommend you do gfcf, but your are the ultimate decision maker. If you want to go gluten free for some time and then try dairy, there is no rule against that.

Preparing a special diet for the entire family is hard. It costs more. It also is challenging to make seperate meals for different members as well and try to avoid cross contamination in the process. Whatever you decide on special diet, it takes a level of dedication and commitment. (ie, more work for mom!!!)LOL

I know this is all hard. I hope you find a choice that works for you. Dee's idea for testing sounds great too, btw.

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Registered: 01-19-2005
Wed, 11-08-2006 - 5:28pm

Hi there, I just wrote a dissertation (LOL) on this in response to Robin, so I'll bump it up so you can see it. The thread has "special diet for ds" in the title.

I agree with LR, start one thing at a time. Every child is different, but in my experience and most folks I know, if a change was going to happen, it happened pretty quickly, like in a couple of weeks. In our case it was obvious. And yes, it is a pain. And also, it doesn't make a difference for some kids, others it helps.

Testing is a good idea, like Dee said.

You will have to decide for yourself about putting the whole family on it. LR listed all the pros and cons. For us, it was easier to put the whole family, but it's just DH, DS, and me. DH and I found we felt better GFCF too, though we are not ASD, that we know of at least! Celiac runs in my family though. I have to tell you, DH and I went out to a fondue place on date night and pigged out on cheese. The next day we both felt out of it, almost like a hangover. DH even called it that, "a casein hangover." I think it's called "comfort food" for a reason, for us at least!

For us, though we tried buying expensive gf substitutes at first, it has been easier in the end to just avoid things rather than try to buy stuff that doesn't taste good or get 500 ingredients to make from scratch.

Examples, we just gave up mac and cheese totally. There is no good substition. I've tried them all. Now, DS doesn't even miss it. Instead of switching to gf bread, we use corn tortillas and make wraps. Stuff like that. We found corn pastas fall apart. Rice holds together, but tastes a bit odd. Quinoa works really pretty well. We also found out that ds cannot in any way handle whole wheat, semolina wheat, but spelt is ok for him and that opens up a world of choices.

Also, like Dee. Cow's milk and we discovered goat's milk sets off junior, but rice milk is ok, Rice Dream does have a really small amount of gluten, but it never was a problem for us.

There is just a lot of trial and error here. The best way to see the effect is to take something away (like dairy) for awhile. Then give it again and see what happens. In our case we could really tell. If you don't see something dramatic, then this may not be a problem for your child. But I have to tell you, if the reaction is bad, like ours, I felt so horrible putting him through that. But at least I knew once and for all. That is why doing testing first would probably be the better choice. We kind of did it backwards, I guess.

Anyway, I'll bump up the other post I wrote. We are in the minority here, I guess, but it did help us. Hope I have not added to your confusion!

Katherine

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Registered: 03-26-2003
Wed, 11-08-2006 - 10:05pm

The conference I was at last weekend did say that they are finding with regards to preschool aged or younger children, that diet changes have been beneficial in about 50ish percent of the kiddos in this group so worth a try at any rate.

HOwever, it was also noted (and I agree) that if you don't see a significant effect then it isn't worth continuing the full diet.

My kids really weren't those that had the huge digestive issues (other than the 1 NT) so rather than a full GFCF we instead went with a sugar free/organic diet. I choose this because my one son with the most significant issues often acted similar to a diabetic so it seems he had a really hard time processing sugars and all overprocessed foods. Plus it is just healthier.

It really helped us and we were pretty strict for a good couple years. Now I have been able to relax a little without such huge effects. Last year sugar at halloween instantly sent them off the deep end. You could watch it happen. This year it wasn't that big of a deal to let them have it or an occasional slice of cake.

I still stick for the most part on our regular diet to sugar-free/organic but I don't have to be as militant any longer.

Renee

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Registered: 03-26-2003
Wed, 11-08-2006 - 11:52pm

PS.

Wanted to tell you that my dd Cait (12-AS) was diagnosed PDD-NOS at age 4 for similar reasons(odd language delay so couldn't be AS). In fact now she would likely be diagnosed as autistic if she was 4 but the idea of a spectrum was still really new then.

At any rate, Cait is now 12 and in many ways a typical teen (oh JOY!). Her language blossumed and she moved up the spectrum. She is still very much on the spectrum but she is also very much just a middle school girl with middle school girl issues. She is a great pal and a great kid who gets B's and C's in school, loves to post to her neopet buddies online, volunteers every week at a theraputic horsemanship program, has a "boyfriend" (an aspie one) and is the heart throb of TOO MANY boys.

Renee

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Registered: 03-20-2003
Thu, 11-09-2006 - 10:46pm

Hey Lisa, you've gotten some great advice.

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Registered: 01-19-2005
Fri, 11-10-2006 - 4:27pm

Debbie has a good point. We didn't get into dietary stuff until Eric had been going to ST, OT, and ABA for a little over a year. But, we did jump right into the therapy merry-go-round all at once. One week, he's in his own little happy home, next week, going to ST 2x a week, OT 2x a week and having the ABA person come to our house every day. He was only 18 mos., thinking back, it must have been a big change for him.

We got into the diet stuff later, and mostly to correct other problems. At first it had nothing to do with ASD. Just trying to straighten out his tummy.

But also, in addition to change for your child, the diet stuff is a lot of work at first. Deb is right you ALL need to get used to the therapy stuff, have it be a normal routine, then ease slowly into the dietary things. If your doctor says it is ok. You are unusual in having your doctor suggest removing gluten and casein, most docs are not really into the idea yet! I think you are fortunate to have that support from the doc.

Katherine

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Registered: 03-20-2003
Fri, 11-10-2006 - 11:47pm

Katherine, you have a good point too about Lisa's doc being "abnormal"....at least in my experience, anyways...not one (even the ped neuropysch who dx ds) doc has suggested any dietary changes.

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