So out goes Gluten

A few years ago, Right before Monster was 4, we decided to try a gluten free/casein free diet*. From my reading it states that it may take up to a year before all the gluten is out and to see results. Monster had all the signs-inexplicable rashes, rosaitia, red ears, an almost addiction to Milk (he was drinking about 48 oz of cow's milk a day), no speech, hyperactivity, etc. etc. etc. It was pretty bad from every perspective.

First, finding alternatives for dairy-yogurt was his main source of protein along with the milk-milk, pudding, cheese. Finding alternatives for gluten-cereal, bread, fish sticks, playdough. Getting his grandmothers on board enough to follow through. :shudders: To this day, Monster won't touch any form of "fake" milk. He went totally to water and nothing else. We saw a nutritionist to help us identify what we could do to help with protein and fat (side note: after spending my entire adult life cutting fat out of my diet, it was very weird to look for ways to add it into Monster's).

Second, I was in the midst of a huge case at work. I was easily putting in 80+ hours a week while dealing (i.e. fighting) with the school district (that year we started the IEP process in December and finished it in June, when we signed with reservations).

Third, his behavior tanked big time (explanation below). He was biting someone nearly every day, with me being the main target. I looked like and abused woman, with bite marks up and down my neck and shoulders. I often wondered if anyone at work noticed.

We made it about 5 months when one day he got some casein. Ok, I admit, I gave it to him. For some reason, it didn't strike me until after he ate it that buttered flavored popcorn would have butter in it. Casein is a milk protein, and is found in butter. The reaction was immediate-his ears got red, his eyes got glassy and he "checked out", meaning he was shut inside himself-we stopped existing, as did the world we live in. The final kicker was when he literally started bouncing off the walls. For those who haven't had the pleasure of seeing this, picture a small bundle of energy-about 3 feet tall, running full speed with arms stretched in front if it, until the arms come into contact with a wall. In a nearly fluid motion, the arms, acting like shock absorbers, flex at the elbow, then push back off the wall while the body pivots and runs full speed at the opposing wall. This went on for about 5 minutes, and only stopped because we picked him up and started throwing him (literally tossing him through the air) onto the opened futon. The entire time, Monster was giggling maniacally.

So we knew that casein had a huge effect on him. However, when he snuck (aka grandma gave it to him) a piece of pizza crust, no effect. So we cut out casein and allowed gluten back in.

We were able to trace a similar reaction back to artificial dyes (you know those things labeled "Dye No.") and cut those out (f'ed up side note, did you know that marshmellows have blue dye in them to make them white? WTF is up with that?).

Recently, we started to notice another inexplicable rash, with reddened ears, so on and so forth. We have been keeping track and found that some soy products were causing problems (not sure if it is a specific ingredient or cross contamination) and today we had a full fledged reaction to some pita chips. These chips had pretty much nothing in them but sea salt, enriched wheat four and some vegetable oil (they were an organic product). So, we've decided to pull gluten entirely, again.

Sigh. Since his main dinners are pizza (no cheese) and pasta, this should be fun.

Wish us luck!

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GF/CF Diets

There are a lot of good resources about GF/CF diets (good website http://gfcf-diet.talkaboutcuringautism.org/index.htm) and autism. I'm not sure I completely understand this whole thing, but since I learn best by trying to teach others (even if they are just in my own mind) here's what I think I know. Research shows that autistic individuals have a lot of gastrointestinal (GI) issues and a large percentage suffer from intestinal distress-including inflammation. It is hypothosized that either an auto-immune response, or some other cause, prevents these people from being able to break down the gluten and casein proteins. In addition, the chemicals that act like gates to seal off the gut are not present (or present in insufficient amounts) allowing these proteins to pass from the gut into the blood stream. These proteins then attach (or react, again, I'm not clear on this) with the neuro-receptors in the brain that receive opioids (like heroine). In essence, if I understand it correctly, these people get strung out on milk and wheat, and they become addicted to it.

Thus, when removing gluten and casein (and I've read soy acts the same way, but I haven't seen that as widely discussed as gluten and casein), the person goes through a withdrawal. This is why it is suggested that this is done slowly. Of course, not really understanding everything and wanting to "cure" Monster, we completely cut him off from all casein and gluten cold turkey. His behavior was atrocious! He was completely out of control for several months.

If one is interested, there are several good references I would recommend. First, for those with a biology/medical background (or the truly geeky among us), I highly reccomend "Changing the Course of Autism" (http://books.google.com/books?id=BP86uPB3bi8C&printsec=frontcover&dq=changing+the+course+of+autism&lr=). I'm also reading "Children with Starving Brains" which seems to be a bit easier to understand. I've heard great things about Jenny McCarthy's new book "Healing and Preventing Autism", but I haven't read it yet (it's next).

These types of diets do not "cure" people with autism, in my opinion. What they do is treat the physiological aspect of autism (which mainstream medicine is just starting to recognize).