Thursday, January 8, 2009

To Have Gluten Or Not, That Is The Question

A little more than 2 years ago we put Adam on the Gluten Free Casein Free (GFCF)diet. He was allowed no gluten (wheat, barely, rye) or dairy. None. Zip. Luckily we live in an area where finding alternative foods was easy. We soon found there really was nothing he couldn't have - just had to be a GFCF version.

We did this because in the Autism Community there is a lot of talk of improvement with this diet. My thought was hey - I'm not putting something in him, so it can't hurt. And it didn't. And we noticed improvements. Within 3 weeks. Small things - like he stopped chewing on his shirts. He sat when doing classwork. He reduced his random noises big time. He reduced his focus/preoccupation on nontraditional/developmental appropriate objects. He started asking for playdates. And he knew every one's name in his class for the first time. Little things that impeded his communication, social development and behavior faded away. His teacher noticed a difference too. There were a few days I'd give him something he shouldn't have had and not told his teacher. Sure enough those days she came by my room to let me know he had been 'off' that day.

As much as we believed the diet was leading to this significant and positive outcomes, I always questioned it. I mean really. You take out gluten and casein and autism 'symptoms' go away? And why?

The rational behind the diet is Leaky Gut Syndrome. Basically it means that your stomach has holes, and that because of the holes, nutrients - the protein from gluten and casein - leak into the bloodstream when they shouldn't. This then causes an opiate effect on the person. There are studies that show this with mice. Lots of folks think its the vaccinations that are tearing up the insides of these kids stomachs. I remembered that Adam had 2 of 3 shots of a Rotovirus vaccination that was recalled before he got the 3rd one due to stomach obtrusion in some kids. He also had Cdiff when he was 6 months and on his first round of antibiotics.

So it made sense that his stomach was torn up and needed healing. But I always thought, if gluten and casein proteins go through the holes, wouldn't other stuff and wouldn't that also have some kind of effect? Yet, on the other hand, he was doing well. Really, really well. And we hadn't changed anything else medication, educationally or behaviorally.

Every 6 months we'd let him cheat to see how he reacted. And within 45 min his ears were bright red, and he was acted more 'autistic' for the next day or so. But the last cheat, last spring, the ears were only red for 30 min and the behavior effects only lasted about 2 hours. Yea, I noticed something, but not much different than when a kid goes to a birthday party and has a lot of sugar.

Over the summer we decided to do some medical investigation. We took him to a Ped Gast who we liked immediately. He didn't dispute that kids on the spectrum often have stomach/bowel issues. But he didn't know why either. The scientific evidence just simply isn't there (yet). With the testing we found out he had the gene for Celiacs. But so do a lot of people. The only true way to find out if he had Celiacs would be to dump gluten in him, wait for a reaction and scope him. Something we really aren't willing to put him through.

But on the other hand, I really (and Adam) wanted to know if he would always have to be on this diet. So we let him having dairy - slowly at first. Maybe it was Celiacs and dairy would b fine. There were no negative reactions. He stayed the same behaviorally. So maybe it was just the gluten I thought. Maybe he really does have Celiacs, and because of the Aspergers, it exhibits a little different behaviorally than in others.

Before Christmas we were out of town at a holiday party. I forgot to pack breakfast for him. So he had regular cereal at our friends house. I didn't tell hubby because I knew I would be looking for a reaction, but he didn't know he was supposed to be. And there was no reaction. Neither of us noticed anything. (and yes I did tell him later that day).

So, we started letting him have gluten. Really slowly. Like cereals that only had a trace of it. Then a small portion of something gluten based. And we still haven't seen a reaction.

So. Now I'm wondering. Did he have Leaky Gut Syndrome and it has healed (websites report it takes about 2 years to heal). Did I fall victim to a fad diet? Am I wishfully thinking that all is fine now? Or, over the next few months as the gluten continues to pass through his stomach will we start seeing regression in his behavior and/or bowels.

I know that while he was on it he made significant progress in so many areas that were deficits due to Aspergers. I don't know if it was because of the diet. And I don't know what the future has in store for his eating.

Right now he is on a point system at school. He's been having problems focusing. I'm not attributing it to dairy. I'm attributing it to the fact that this year he is one of 32 in a trailer. His teacher has little experience with Aspergers. He was an organizational mess, not completing assignments and classwork, and a drop in his grades. He puzzled his teacher because when she asked him something he always knew the answer. His pretest scores on district tests aimed at the entire year of curriculum were a 97. On topics he hadn't been taught yet. So why did he have a few C's? So we put him on a point system more so I knew SHE was monitoring him more. She doesn't know that he is having gluten right now. We've been doing the point system for the 3 weeks before break. I'm really curious what this and next weeks points are going to look like.


Stimey said...

This is really fascinating. Please keep us updated. You know I've thought about putting Jack on a GFCF diet, but haven't had the follow-through to do it yet. I'm curious to hear how this goes with your guy.

hellokittiemama said...

oh wow!!! This is fascinating and I hope you do keep us posted.

My son is on the diet and has been since 2007. Anytime he gets something forbidden it is a big mess in every way - bathroom & behavior... For him the dairy seems to make the bigger problem bathroom-wise but the gluten affects behavior/sleep/and mood/temper...

Best of luck without the diet and enjoy the extra $$$ you save too!!!

Our baby Zambia said...

Thanks for this. My nephew has just been diagnosed and so all of this information helps.

Stacy said...

I really like this post, I'm considering doing a gluten free trial with my son but I haven't started yet, still researching and learning. I am glad to see how it worked for you. I have heard slightly different explanations about how the gluten is processed in the gut, that in the absence of leaky gut, the breakdown of gluten releases peptides that most people can process but somehow in some cases of children with ASD they interact with neurotransmitters in the brain. I'm not sure if this is the opiate effect or just similar. Regardless, it's all worth trying, especially after seeing your positive results. I have also been told by professionals/therapists that they have seen improvements in kids when they go gluten free but then a regression after a few months, as though it is somehow only temporary.
I'm new to the Autism community ... so much information!