Monday, February 15, 2010

Gluten Free and a Rant

One of the things that has kept us all busy lately has been our switch to a gluten free, casein free, soy free diet for the big O man. I had wanted to try it in the past because I have heard great things about how it could help with some autism symptoms and also help his overall health, but it wasn't until I finally googled "red ears" that I felt really SURE that he needed to at least try this out. My boy has always had ears that turn bright red for no reason. Sometimes just one ear. The picture below shows his red ears - turns out that red ears can be a sign of a food allergy - most likely gluten.

I have to say, I was really intimidated by the thought of this diet. How in the world could I take away gluten and casein from a kid who pretty much lived on pizza? I also was skeptical. I have seen the very real link between diet and behavior over and over again with my other kids and myself, but for some reason this one was hard to grasp. The gluten/casein/soy (or whatever your particular child is allergic to) causes problems in the gut, the gut then doesn't process food properly, bing bang boom, suddenly your kid has autism. Hmpf. It sounded so crazy. And every doctor told me the same thing. "Well, it won't hurt if you want to try, but it isn't proven. And it is really hard." Mmmmkay. Super inspirational, thanks. Yes, I read all the anecdotal evidence, saw stories about kids who had shown improvement, even some that were "recovered" from autism. But could we do it?

First step was to clean out the house. And research what to buy, what to cook, what NOT to buy, what NOT to cook, what not to cook IN (new pans, new toaster, new pizza stone). Got rid of the bread, the flour, the chicken nuggets, the frozen pizza. And the pizza rolls. Asked for a bread maker for our anniversary. (Check out that beautiful loaf I made with gluten free bread mix.) We spent the week of Christmas Vacation at home. And it was a loooong week. We did discover that Five Guys is gluten free except for the bread, so we spent some time there. Yum.

So ... results? It seems to be helping! My guy has shown an improvement in eye contact, decrease in "stims" and more interest in the people around him. And guess what else? The red ears are GONE. They were gone the FIRST day. Eye contact improved the FIRST day. Stims were reduced the FIRST day. So, we are now sticking with our Gluten Free, Casein Free, Soy Free diet, adding it to the list (we were already off the refined sugar and colors.) It is a challenge, but we have found some fun stuff to eat. Chips and salsa. Specifically Utz brand chips. Or as my boy says, "Oooh, tomatoes taste like chips!"

Snow crab legs. These are a big favorite around here. And sometimes on sale. Sometimes not, sigh.

Rice and beans! This is a shocker - and yet another great result of this new diet. My food challenged son who resisted adding new foods to his diet for years has now added new HEALTHY foods to his repertoire. Beans?? Beans??? I am still amazed. I had to take pictures.

He likes it. He really likes it!!

Warning: RANT AHEAD. Read at your own risk.
Bottom line, I should be really happy about this new diet. But I am not. Well, I am but my overwhelming emotion has been anger. Driving down the highway, crying in my car kind of anger. All those years of stomach issues, all the times I asked the doctors about this diet, all the times they said, "Well, it is really hard. Can't hurt to try I guess." All the times they rolled their eyes at me. ALL of them. Not just the regular pediatrician, but the developmental pediatrician who specializes in autism. WHY? Why don't they push parents to try it? An overwhelming percentage of kids with autism have stomach issues. If my "typical" kid had stomach issues, I am pretty sure the doctor would suggest an elimination diet to rule out allergens like wheat and milk. So why don't the kids with autism get the same respect? Are they expected to live with stomach issues just because they have autism? I am not going to even get into the fact that some of the autistic traits improved -OK, well maybe I am. Just wait a second. But aside from that, WHAT ABOUT THE PHYSICAL ASPECT? Don't these kids have the right to good physical health?? I am kind of nervous about what I am going to say at our next visit to the pediatrician, because I actually kinda like the guy. I'm worried that the words, "HOW DARE YOU" may come out of my mouth.
OK, so now I am going to just talk a little about the "other" improvements. Those controversial ones. From what I have read, just using my little google search, I have learned that most kids with autism have SOME improvement on this diet. OK, not everyone is recovered, not everyone makes ginormous strides, but most make SOME improvement. THIS article says 81% make some improvement. I have seen other quotes that say 90%. Guess what? I will take it. SOME improvement for a kid who has been doing therapy from age 2.5 and has creeped through all his developmental milestones so slowly that it hurts - SOME improvement is awesome to me. Just the fact that my kid is now eating some vegetables, after YEARS of working with the school, therapists and online supports - THAT is a big deal. No, he isn't typical. Yes, he still has autism. Yes, he will still be going for all his other therapies and getting occupational therapy, ABA, Discreet Trial and all that good stuff that has helped him to get to this point. But if this diet can help him in any way, we are going to do it.
I came across THIS article on an autism support group and it also made me mad. Suggesting that the improvements seen on this diet could have been seen if the parents would have just tried harder to get their kids to eat a more varied diet - are you kidding me? I have tried for YEARS and been very successful with my typical children AND my son with autism, in cutting out the sugar and colors. We worked hard (and even involved the school) and NEVER got past the resistance, the addiction to wheat & cheese and the determination to eat only a few things. ONE day on this diet and we saw improvements. And suggesting that it is not worthwhile because kids are not "recovered" is ridiculous. OK, fine, some parents will say a child is recovered and the child still has some issues. Does that mean that no one should bother to improve their child, because they may never be "normal" ? Is it only of value if there is a full recovery? Articles like this do nothing but discourage people from trying something that HELPS. It helps. For a large percentage of kids, it helps. And if those kids come so far that their parents want to call them "recovered" - let them.

A paralyzed person who regains the ability to walk may still limp. But I am pretty sure the doctor would not discourage them from going to therapy or say that they might not really be recovered because they will always walk funny. I'm pretty sure doctors would not be publishing articles to point out that occupational therapy for paralyzed individuals is not proven 100% effective because it doesn't work for everyone. I'm pretty sure they wouldn't be pointing out all the people who worked hard to walk again and still remain in a wheelchair, or say, "well, it wouldn't hurt to try, but it will be really hard." I am even more sure they would not roll their eyes if a paralyzed person asked to pursue a therapy that worked for someone else. No. They wouldn't. So, I am just amazed and angry that this easy little fix, just a change in diet, has become something so controversial that doctors won't even recommend it to TRY.
OK, rant over. If you have a kid on the spectrum and you haven't tried this diet, I highly recommend it. That's all. And look for more about what we eat, where we eat and how to shop for this stuff. I'll be keeping you updated on our progress too.

1 comment:

  1. Excellent rant. And I had to have that conversation with our ped. I made an appointment for just myself to go in and talk. "This is what we will be doing. If you can't be supportive, please let me know so we can find another doctor."

    Good luck, Wendy. It does get easier. Maisie hits the 7 year gfcf mark this spring. And it's such a routine thing for us now. I'm so glad O is doing so well. :)