Our experience with Gluten Free / Casein Free and AUTISM

So, we’ve been hearing about the positive effects that a Gluten Free / Casein Free (milk products) diet can have on kids on the autism spectrum, but we like to try to make only a few changes at a time, so we can observe the results as accurately as possible. We have some family members with Celiac disease, so we are familiar with the Gluten Free restrictions, but Casein Free is a new challenge for us.

Even worse, some of J’s favorite foods include Mac & Cheese, breads, cheese, MILK (glug glug), and more pasta. See the problem here?

To add even more complexity, there seems to be some concern about eating Soy as well, so we’ve attempted to eliminate that as well. Well, that makes cheese substitutes just about non-existent. We did find one almond cheese that did not appear to have any casein or soy, and it tasted … well, bad.

So, we finally jumped in the water, and it was *not* easy. But, if there was a chance that this could help, even 10%, it would be completely worth the effort! We started poking around in August 2007 and seriously started implementing it in September 2007. They recommend you don’t try to go “cold turkey”, but we worked around that by allowing some comfort foods that we couldn’t eliminate immediately anyway. It seems to have worked out OK.

One thing that we do is we taste *everything* we give to J … if we wouldn’t eat it, unless he says he likes it, we don’t make him eat it.

Overall, we’ve been able to replace his diet with on that is GF/CF/SF (soy free, for the most part), and the results seem to be very encouraging. Just over 3 months later, he does seem to be more lucid when he communicates,;we are seeing more spontaneous conversational communication (not just stuff like “school bus!” when he sees a school bus, but real conversational bits); he’s “home” more often and has been able to accommodate more intricate tasks requested of him; etc.

Some of the things that he’s done just out of nowhere makes your jaw drop — it’s amazing.

Now, lately, he’s been in a bit of a funk because of the transition back to the parents, but when he’s not in the middle of a regressive behavior, his skill performance has definately increased. Also, we do expect regular progress because we *know* he’s capable of mainstreaming — it’s just a mater of work on everyone’s part to help him get there, but the progress he’s made in some areas does seem pretty encouraging.

Of course, all of this is still purely anecdotal evidence at best, and we’re trying to be as objective and pessimistic as possible, but we’re still pretty happy. 2-3 word phrases have become 4-5 word phrases in short order, and although his need for prompting has remained fairly high (which we attribute to stress and anxiety from the transition and uncertainty), the intensity of the prompt (gesture or a single word vs a phrase or full sentence or physical prompt) has greatly reduced.

We’ve been doing as much as we can to work with the parents to find foods that he likes and are easy for them to prepare … we cook a lot at home, but with their schedules, that’s not as likely, so we are trying to help them find foods that will work, rather than them put him back on a McD diet out of convenience.

We have a Whole Foods / Wild Oats that we shopped at a lot to get started, but we’ve been able to find more products at the local Safeway and King Soopers, too … also at the Vitamin Cottage (locally owned chain) as well as some Internet mail order sites. I probably should do a separate post for the foodstuffs, as this one is already long enough, plus I think I can edit it after the fact to modify the list.

Short story, we think it worked for J. I don’t know how much time we’ll get with him after the transition, so I’m not sure if we’ll be able to observe his behavior and also get accurate data on how his diet maintenance has been going, but if I do, I’ll post updates.

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