Sunday, July 30, 2006

the gf/cf disaster

Something I've failed to mention so far in all of this is Jacob's problem with food. It's not that the kid doesn't like to eat, he just won't try anything new. He picked at food until he was about 18 months old, and at that point, what he'd already been willing to eat he started eating in enough quantity to sustain his life, and those things that he hadn't tried yet just never got tried.

So when I first read about how a lot of kids with Autism have problems eating gluten (wheat protein) and casein (dairy protein), the whole thing sounded really believable to me. These kids supposedly self-limit their diet to those things that contain gluten and casein. Jacob's mainstay was (still is!) cheese and crackers (more specifically, wispride cheddar cheese spread on red oval mini stoned wheat thins). Other favorites were english muffins with cream cheese and double cheeseburgers from McDonalds. (I will post seperately at some point about McDonalds, the savior of my child.) Hm gluten and dairy. The gluten in particular was supposed to cause an opiod-like substance in these kids that caused them to become addicted to it and crave it. And because the kids were sensitive to it, the substance crossed through their "leaky gut" and caused symptoms that appeared to be Autism.

I got excited. This made sense to me -- maybe this was MY kid. The websites and passionate e-group posts certainly led me to believe that this was an extremely common cause of Autism that most people don't even think about. Could it be, that just by eliminating these foods from Jacob's diet, we could make his Autism dissappear? Talk about building up hope! I dedicated the next month to devouring every bit of information I could get on the gf/cf diet. I made shopping lists, drove to specialty grocery stores an hour away for supplies, joined every e-group I could find, and gave away all of our gluten- and casein-containing foods, committing our entire family to go gf/cf (and don't think The Map Man wasn't thrilled about that! hee hee).

I was more than a little concerned at the fact that Jacob ate so few foods anyway (about a dozen), and most of them contained gluten or casein. Pretty much we were going to be left with apples, bananas, and corn chips as the only foods he could eat. I posted my concerns on the e-groups and got a rousing round of support, with advice on substitute foods. And everyone -- and I mean EVERYONE -- said that he would soon be off his addiction and willing to try new foods, so for the time being he'd be fine on apples, bananas and corn chips. When he was hungry enough, he would eat something else. He would try the substitutes. He would try new foods. No child is going to starve himself to death. HE WILL EAT.

(I also had a few emails warning me that ASD kids sometimes have problems with salicylites, which apples and bananas are high in, and some kids with gluten addictions will then become addicted to corn so the corn chips might have to be eliminated too. That just made me nuts, so I deleted those so I didn't have to look at them!)

So we did it. When he asked for something he was used to having, we offered him a substitute. When he agreed to try the substitute, he'd burst into tears, and then NEVER touch that food again (ever -- even after we abandoned the diet and tried to get him to eat the original). Pretty quickly we stopped trying substitutes because they obviously weren't working and were cutting his list of foods that he would eat in half. Telling him no to something he wanted was easier -- he was upset, but at least we were preserving a few items that he was willing to eat. So he started eating corn chips. The only thing he'd eat was corn chips. Two weeks later, he was still eating only corn chips. Every day I wrote posts of worry and woe on the e-groups, every day I received support and assurance that it was OK, it wouldn't hurt him, he WOULD eat. So I kept sticking it out, although inside I was dying a little every moment of every day.

Two weeks to the day I started withholding gluten and casein, Jacob collapsed. In a weak little voice he begged "white chips" (corn chips), as this was the only food he knew I'd let him have. That was it -- I immediately drove him to the nearest McDonald's and bought him a double cheeseburger. As I handed it to him, I expected him to devour it -- given that he was supposedly an addict that had been deprived of his "drug" for 2 weeks. He examined the burger the way he always does with his food, and ate it in polite little bites as usual.

So that was our attempt at gf/cf diet. Everyone tried to convince me that if I cut out gluten first and THEN casein or the other way around, it would have gone smoother. But there was really no way of doing that anyway, the foods he ate were a combination of both. I really don't think that Jacob has a problem with gluten or casein, so I see no reason to attempt it again. I guess it was worth a shot once. But I truly believe that he WOULD starve to death rather than try something new.

From that day forward, I vowed to stop worrying about his diet (a vow I didn't really keep, as a few months ago I had a rather severe worry about it, but I'm sure I'll talk more about that later). I let him eat what he wanted, gave him the opportunity to try new things but didn't push it with him. I was just happy that he was eating again and healthy! And he HAS added a few new things to his repertoir since then, and he's back up to about a dozen foods that he'll eat again. In the spring of 2005, he tried and discovered he likes Froot Loops, and now eats them for snack most afternoons. Soon thereafter, he discovered that he likes chocolate and will now eat hershey bars and m&ms. (OK, not exactly health food, but at least something different.) And he's become a big fan of yellow cake with just about any color frosting -- we've been hiding rice protein powder and ground flax seed in our cake mixes, so that's been a good addition. Oh, and just this spring, he discovered that he has an absolute passion for Marshmallow Peeps. So much so that we've been using them lately to produce some actual potty training successes, so that's very exciting.

Oh, yeah, potty training. I haven't talked about that yet either. I've still got SO much left to tell.... With any luck, by the time I finally get around to writing about it, he'll actually BE potty trained! (I can dream, right?) Posted by Picasa


At 4:16 PM, Blogger Frog's mom said...

We had a similar trial with the GF/CF diet. We tried going off Casin for a month, then off Glutten. While our little guy did accept some subsitutes, he did not learn to like anything new, he did not start talking, he did not experience any dramatic behavioral changes - he did develope an ongoing battle with loose stool until we gave up on the diet and took him off of soy based products.

I also had a nutrionist suggest we send him to his room without dinner if he threw his food on the floor. And to not worry because kid's don't let themselves starve. Obviously not a nutritionist specializing in autism! I've since learned that many autistic kids do let themselves starve rather than trying highly offensive foods.

Good for you for trying but trusting your gut!

At 8:28 AM, Blogger Þorgerður said...

I can see this diet thing is old news for you but I had such a great laugh at your description of the gfcf diet it descriped my sentiments very well. I did try that one and am in the middle of food fascism right now trying the gap diet. Luckily my son eats a great variety of foods so we do not have dramatic problems with nutrition. But it is like howling against the wind. Wishing for improvements and no guarantees whatsoever. The label autism is such a trash bin for various symptoms. Your blog is very informative and well written. Best of luck Gerdur


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