Wednesday, December 06, 2006

GF/CF diet

Translated: Gluten Free/Casein Free. Gluten: think wheat, rye, barley and any derivitives thereof. Casein: a protein in dairy products. Think milk, cheese, pudding, ice cream, chocolate...

The GF/CF diet is part of the world of biomedical treatments available for people with autism. The theory is that these kids, due to their compromised digestion, have something called a leaky gut. While digesting food, esp. gluten & casein, these proteins leak out of the intestines and into the bloodstream, where they eventually end up in the brain. The brain reacts like it's on drugs - a narcotic effect. Some kids have major digestion troubles and allergies, and are constantly sick or have loose stools and are grumpy, and might not even sleep through the night because of acid reflux. Many of these kids crave these foods and eat them exclusively, even though they are so damaging to their bodies. This is the theory, in a nutshell.

Rob & I have dug in our heels about going down this road for T because he is a happy guy with normal bowel movements and who eats a good, balanced diet (well, practically no veggies, but what 5 year old likes veggies? Okay, if your 5 year old does, that's amazing and fantastic. I don't want to hear about it!) He sleeps through the night and just doesn't fit the usual description of the kids who really benefit from this diet.

But what about the narcotic effect? Some kids present no outward symptoms of these food "allergies", but just act stoned/spacy all the time. Oh geez.

If I'm honest, I must also admit that I really don't want to do this diet. No wheat? There goes his sandwiches, cookies, Goldfish crackers, pretzels, pancakes, waffles...basically all his favorite foods. No dairy? Okay, that's a little easier, but he really enjoys the one cup of milk he has a day, loves string cheese and mows through macaroni & cheese like he's me (I STILL love Kraft mac & cheese!) There are substitutes for most of these items at our local health food stores, but great scott are they expensive.

So why am I writing about it? I am a believer in messages. A friend with an autistic son has been doing this diet for awhile for him, and she says she sees great improvement in his behaviors. My sister is having lots of trouble with food and digesting lately and had some testing done - the result: she's on a GF/CF diet, and has discovered some pretty major food allergies in addition. And yet another new friend has her son on the diet, and believes firmly that it has helped him - and I must admit, her son is doing amazingly well. So when she told me that the doctor that is the expert on these biomedical treatments up in the Big City north of here was having a parent information night - and that we should go - I looked to Heaven and said "All RIGHT already! I'll go. Grr."

I just don't want to leave any stone unturned.

I also know that every medical treatment is experimental at first. And as the treatments are done, there is only anecdotal evidence at first. This is how it goes. There is research being done, but the medical community is not of one voice on these treatments yet.

So Rob & I went to the parent information night last week. We went being skeptical, to say the least. But this woman (an M.D., sorry all you D.O.s out there) said the magic words for us: "This is NOT a cure. But this may help your child." And: "I don't want you to leave your pediatician. I will work with your pediatician on a consulting basis." Further: she doesn't have her own line of products to sell. In fact, she learned about these treatments when her daughter, who has Asberger's Syndrome, wasn't responding to traditional therapies. So she started researching alternative treatments, and long story short, she's a believer because it worked for her daughter. She now commits one day/week in her practice to autism because she believes so strongly in these treatments - and the more kids she treats, the more she sees that it works.


So, T is worth it. If it may help him, we owe it to him to give it a try. So we will.

What I'm finding interesting is my grieving for his diet, and what he'll miss! I would just be heartbroken if I missed all the Christmas cookies and dilectable treats this season. But how silly is that? I'm really not sure that he remembers the cookies from last year, and I could make him some of his own very special cookies made from almond flour. But isn't that funny? I'm projecting my desire for those cookies on him, and I'm considering delaying this just so he can have some sugar cookies!

Another lesson I'm learning again & again: do what's best for him, not what I would want for myself. What's best for him usually isn't something I would chose for myself.


EA said...

"Another lesson I'm learning again & again: do what's best for him, not what I would want for myself. What's best for him usually isn't something I would chose for myself."

Food is such a big deal for me. This seems so tough, but me too on the lesson above in my music psychotherapy is so humbling for me.

nonie said...

You have good intuitive skills.
Trying this approach may have benefits for T...but, if afterall, the diet creates issues that were not there before, maybe this is one approach that goes into the " tried that, not right for T" catagory. Ultimately it will work out to be what is best for all.

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