This all started with my seeing Jenny McCarthy on Oprah talking about her son. She talked about his terrifying seizures and his steady decline into the non-communicative world of Autism. Having a son myself who was recently diagnosed as being autistic, I watched avidly. This condition is so new to me and I’m still seeking out any information I can find. Obviously, there are the official websites and books that give all the facts and figures and even suggest a course of treatment (not a cure), but I like hearing from parents - people who are going through, or have been through, the feelings that I’m having.
My son never had seizures and he never had the use of words that he then lost. He simply never learned to talk. He’s three and half now and although he can scream and squeal and make a wide range of sounds, none of them are words. Words that we can understand, anyway. We always got the impression that he just didn’t see the need to communicate verbally.
All that would be fine if we felt like we had some other form of communication with him. But he doesn’t point either. Or wave. He reaches for the things he wants or let’s us know by his actions. For example, he sits at the kitchen table when he’s hungry.
Anyway, Jenny McCarthy swears that a change in diet for her son has brought tremendous improvements in his autistic behaviours. He started making more eye contact and even started getting some words back. This diet is the gluten-free casein-free diet (or GFDF).
‘Dairy’ as in anything containing milk or any form of milk. Anything with ‘lact’ in the ingredients list is a no-no.
‘Gluten’ as in wheat, barley, malt… pretty much everything processed. Battered or breaded fish fingers? No. Bagels? No. Bread? No. Cereal? No. Margarine? No. No, no, no! All my son’s favorite foods would have to be avoided. Hell, not just avoided but completely omitted from his diet.
The theory behind the diet is that some autistic children have troubles digesting these types of foods and they therefore end up acting like a toxin in the child’s body. Take away these toxins and some autistic children become more alert and ‘with it’. The diet is fairly controversial in that the medical profession has not found any substantial link between the diet and improvements in autistic children, but like with a lot of these things, it’s the parents who see the results.
Wishful thinking? Maybe. But why not try it? What have you got to lose? A few extra dollars on speciality food is the answer. But that’s it. Your child will still get his calcium from his milk substitute which, I might add, tastes just like the real thing, and can still have his toast or cereal in the morning as long as you buy the gluten-free brand.
So, we’re trying it. As of yesterday, we have cut dairy out of our son’s diet. He has started his new carton of Soy Milk, made from the soy bean rather than from a cow. Fortified with calcium and loads of other vitamins! We bought non-dairy yoghurt at $1.39 for a single serving container and non-dairy cheese (which I found to be pretty gross and it would not melt. Oh well, you can’t have it all).
The gluten-free part will be a lot harder as gluten in its many forms seems to be in everything. But we will faze it in. Dairy-free comes first and then, when we see or do not see any results from that, we’ll get on with the gluten-free part. His gluten intake has simply been reduced for now.
So after 24 hours of being dairy free have we noticed any results? It’s hard to say. Our son was happy and cheerful all day. But that’ not unusual. Hubby feels that our son was a bit more affectionate towards him today. I hope!
I’ll keep you posted.
October 24th, 2007 at 4:05 pm
No need to shun margarine, Earth Balanace and Smart Balance (1/3 less fat) work great. Also, I believe Fleischmann’s has a good one, but I don’t use it due to the hydrogenated oils.
If you need any help, my site above caters to gluten-free as well as the obvious casein-free. Feel free to email me if you are looking for anything. Good luck!
October 24th, 2007 at 9:48 pm
Hi Alisa,
I’ve just checked out your site and I was impressed with your recipes section. As we’re so new to this GFCF thing, we need all the help we can get! I’ve bookmarked your site and I’ll go back to read more.
Thanks for your comment.
October 25th, 2007 at 1:37 am
Oh I am glad you find it helpful! Feel free to let me know if you are ever looking for anything. I have trialed the gluten-free diet myself (along with the obvious dairy-free), for about 6 months, so I found a lot of options.
November 6th, 2007 at 9:41 am
I think Jenny McCarthy went sugar-free too, that’s an important factor in helping stop/reduce seizures; and also in stopping yeast overgrowth. Just an fyi.
November 6th, 2007 at 11:03 pm
Hi Anne,
I’ve finally finished reading the Jenny McCarthy book and, yes, she did go sugar-free too. Like you said, it had to do with yeast. But that means taking fruit out of his diet too. I have to be honest here and say that if I took that out too I wouldn’t know what was left to feed him! It’s hard enough now with just gluten-free and casein-free.
Obviously, I would want him to go sugar-free as well if I knew that there was an overgrowth of yeast in his system.
It must be nice being a celebrity and having the cash and the connections to get all the tests done and to maybe even have a nutritionist come by and explain which foods the poor kid CAN eat.
Ah well.
November 7th, 2007 at 3:23 pm
The diet is simple once you find the right products. There are great brown rice pastas,
cereals,waffles,doughnuts you name it. Feel free to e-mail me if you would like a list. I live in Canada so some brands may be different. Joann
December 16th, 2007 at 11:29 pm
[…] Gluten-Free, Dairy-Free, and Autism […]
August 29th, 2008 at 9:35 pm
I have also started this diet about 2 weeks ago with my son who is 6 and has autism he is also non verbal he sounds alot like your son at that age. My son talks more now but most of it is some sort of babble it is very difficult to raise a child when you can’t communicate very well. I took him off dairy I noticed a change in his bowl movements and for the first little while he was alot more hyper but seems to be calmer now. As for the gluten fee man this is almost impossible, we are having a really hard time trying to find a bread with no gluten or eggs it is crazy, I also am not sure that I have seen much of a diffrence, they say it take at least 6 months to get out of your system. man here is to hoping
February 2nd, 2009 at 7:14 pm
I want to give you encouragement. My son was one of the ones born with autism, screamed from day two, started talking, then stopped at 15 months, at 3 1/2 a wonderful speech pathologist got him to say “bop” for “stop” — we were elated. He had exhibited severe asthmatic problems when I had cooked cheese twice while nursing him so he NEVER had casein otherwise, and we removed gluten from his diet back in 1994 due to him being temporarily deaf and I was trying to convince the dr that it also was allergy caused as I knew he was allergic to wheat, bananas, and a few other things besides milk by then. THE GOOD NEWS! Christopher is now 17. He’s considered Aspbergers. We never had enough money to try all the new things others were trying, but the MOST EFFECTIVE and WORTHWHILE thing we did was the gluten free-casein free diet. Later we realized he was allergic to salycilates (apples, grapes, everything he loved including almonds). For about 5 years, using electrodermal allergy testing we discovered he was allergic to all but 17 foods with amaranth being the ONLY grain he could tolerate. We used de-glycyrhhizinated licorice with meals so he could have rice and soy milk (watch ingredients on soy milk, not all are gf). We also used a very mild form of chelation over a period of 3 years. First NDF which is chlorella drops, then later ImmoChelex, under a naturopath’s direction and both helped a lot. He could feel pain after 6 months on the chlorella. :-) He’s now a really neat teen, a joy to so many, especially senior citizens and kids. He doesn’t hug me but he hugs my lady friends when he sees them! They all think that is So neat!!
So be encouraged, I stumbled through years of gluten-free diet before discovering any recources other than the Gluten-Free Gourmet that only held one recipe of interest to him. The Diet is WORTH the trouble. We always carry food with us so he doesn’t have to go hungry if we end up eating with friends or dining out. I always plan ahead and keep things in the car for him. Traveling has meant our tiny trunk barely held room for our clothes after getting his food in there but he’s worth the effort! He wants to be a jungle pilot. I don’t limit God. Right now he’s not capable, but maybe another period of chelation or something we don’t yet know of could clear his thinking even more :-)
We have homeschooled and it was FRUSTRATING, but more than WORTH the frustration. He now takes 2 classes at the local high school. He will graduate one year later than average, but we repeated grades 2 and 3 each a couple times. He will graduate KNOWING things, whereas in public school they just push you along to get you out the door.
Don’t give up! Your child is WORTH the gfcf diet!