Friday, February 13, 2009

gluten and casein free

Well, it's been a long time since I've posted anything. It has been a whirlwind of activity combine with lots of waiting! But we are getting somewhere. There's lots I could share about the journey so far, but this week we have been somewhat focused on putting Lewis on the gluten free and casein free diet (GFCF) that I'll choose to write about that first.

Lewis has historically been a very picky eater so this diet was the last thing I've wanted to do. His favorite foods are ones of the cracker and cereal variety--hard crunchy and made mostly of flour! But the transition has been relatively easy. We had taken him off of regular milk a while ago, and have settled on Rice milk for the moment because it is cheaper and soy free. For now we are avoiding anything with gluten: wheat, oats, barley and their derivatives, soy and milk products. That eliminates a whole lot of things. The foods Lewis no longer can eat in our pantry: cereal bars, Goldfish crackers, graham crackers, animal crackers, pretzels, oreos, Cheerios, Kix cereal (though there is a version I think he can eat) and chocolate; and from the fridge: yogurt and chicken nuggets.

He still can eat fruit, veggies (he will only eat sweet potatoes and squash pureed), beans (his current fave), marshmallows, Smarties, most potato chips, french fries, meat (chicken nuggets are the only meat he has eaten lately), and of course GFCF versions of things.

We got GFCF versions of Cheerios and Kix, called PerkyO's and Gorilla Munch, which he seems to like okay. He's eating some Veggie Chips from Trader Joe's that are really good and provide some veggie intake. Most notably though he is eating homemade chicken nuggets. I'm dipping chicken in cornstarch, then in egg, and finally rolling it in crushed potato chips with some herbs and spices which I then fry in olive oil. They taste great, but are different and the breading slips off fairly easily. Still, in front of his video Lewis doesn't seem to mind.

We are making sure he eats beans every day too, which should help with his protein intake. All in all I think he is actually eating more than he did before.

The thing that really frustrated me though, was that in the paperwork from my doctor encouraging us to take on this diet, all kinds of other things were included as stuff to avoid too.

Now you may have gotten this far and are thinking--why GFCF? What is the point? In kids with ASD (autism spectrum disorder) the enzymes in gluten and casein are thought in many cases, to not get broken down properly in the body. What results is an opiate effect which leaves these kids in a sort of "high" state where their brains can't function properly or learn well. It would be like walking around drunk all the time and trying to learn to talk. Many of the self-stimming behaviors are thought to be a result of this altered state and so 65% of kids with autism actually show great improvement when gluten and casein are removed. Many make great gains verbally after starting the diet.

So in my mind I'm thinking--okay, it will be tough, but we can do this. It's expensive, yes, but it could be well worth it! But then I started reading that we should avoid sugar, and pre-packaged chips and every preservative in the world, and I almost gave up. This info even said that apples and bananas are the worst of the fruits (due to sugar levels) and should be limited. That was really discouraging because Lewis most regularly eats bananas mixed with natural applesauce, or grapes. He tolerates other fruits sometimes, but it is much harder to get him to eat those things.

We don't make a lot of money so it is a stretch for us anyway. But I kept thinking that if gluten and casein are the real problem, why make it so much harder by adding all these other things to the list? It would be like telling a drug addict that along with LSD they needed to give up coffee, fast food and chocolate too. Just knock out all your bad habits at once! It makes sense that all organic foods are best without dyes or preservatives.....it's just not possible for us right now. Lewis has to eat SOMETHING!

So, all this to say, we are gluten and casein free, and we are avoiding soy as much as possible (trace amounts of soy are okay by me at this point) and I feel like we are doing great. There are a host of supplements we'll be trying in the near future too, along with our ABA program and hopefully the combination will make a difference.