GFCF Diet

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I just recently read about the gluten free, casein free diet for people with autism. I've read a lot of really amazing success stories, but they are all written by parents of very young austistic children. I'm wondering if there are any teens or adults on here who have had success (or not) with this diet who wouldn't mind sharing their experience.

(Edit)::Sigh::.. Allow me to clarify: THIS IS NOT A WEIGHT-LOSS DIET! This is a diet that has reportedly given many people with Autism Spectrum disorders relief from their symptoms and allowed them to lead "normal" lives.

(Please, be a good aspie and google it before you reply with something irrelevant.)

There is a theory that gluten and casein are not digested properly by people with autism. Instead, they act as opiates in the system, causing the person to have an experience similar to being on morphine. I have read many accounts of children who, before starting the diet, did not speak, make eye contact, couldn't even use the toilet, etc. and a few months into the diet are nearly indistiguishable from other children their age.

I want to hear firsthand experiences from adults and/or teens, rather than observations by parents.

I know theres a lot of gluten in dairy products, and casien in artificial products if im correct, I tried very slowly weening myself off of dairy products to see if it has an affect, and it hasn't really changed anything so far. They say autistic people become addicted to things with gluten and casien in them, and become more autistic with both also. I agree with that, when I was younger I almost died because I'm so fussy with food, I needed a certian kinda food, or I wouldn't eat, almost became anorexic, but didn't but looked it haha, anyways I started drinking boost which saved my life, but became an addiction and I never knew why until I looked up the ingrediants, and there was casien in it, and everytime I drank a boost, I felt more along the lines of not being able to control some of my traits, and my sensory input went bonkers, but it also felt so good, I never knew why.

I am just now starting a gluten free diet, but I don't know what caesin is. I haven't noticed any changes yet though, but I just started so there hasn't been enough time.

We tried the GFCF diet with our son (now eleven) who was five years old at the time. We were told that it would take three weeks or more to see any effects. We thought (?) that he seemed less hyper, but we weren't convinced, so we stopped doing the diet. We did, however, have our son take enzyme pills, which basically help the breakdown of casein and gluten in the diet, and we thought that those helped. We did that for two or three years, but then stopped. We did not see bad behaviors return after we stopped.

Kris

To go on a gluten-free diet I'd have to avoid anything of wheat and its close relatives. What would I have to give up to go casein-free?

casein is found in dairy products.

I have been gluten and cassein free and felt no different cognitively/emotionally/ perceptually. My guess is that those kids were eating a horrid diet (like most kids) before their parents started them a better diet-- ANY improvement in diet will improve overall health. Iam a health nut when it comes to food... I don't even eat sugar.

My youngest wasn't talking and was acting very autisitic. I had him evaluated by the early intervention people and they told me they couldn't diagnose, but they agreed with me that he was very likely autistic. I cut gluten out of his diet (he is allergic to wheat, but I had been giving him other glutonous grains, like rye, barley, etc.) He started talking 2 weeks later.

And no, he wasn't eating a horrid diet. I buy mostly organic foods and cook almost everything from scratch. We eat a lot of vegetables and nothing containing artificiual dyes, etc. We have a MUCH healthier diet than the average American family.

He's still obviously on the spectrum, but hey, he's talking, which makes it much much easier for me, and HIM, more importantly. He no longer stands in a room and screams because he wants something. Now he either points to it or verbally asks for it. This all happened very recently. He was 18 mos old when he started talking and he is now talking in sentences at 20 mos of age. I guess it could have been a coincidence, but it's enough for me to keep him off the gluten, at least for now. It's not any harder to go completely GF than it is to go wheat-free, which I have to do anyway, since he's allergic to wheat. I'm going to try the whole family out on the GF/CF diet this summer to see if it makes a difference. I have a mild milk allergy, so I know that at least will make me feel better. I go dairy free for a few years periodically, then I slip up and remember how GOOD cheesecake and yogurt are and I start eating thjem again until my health starts declining. THen I say, oh yeah, this is why I gave up dairy. And so it goes.

I tried it for a little while, but it didn't really improve my AS. Plus it was boring and expensive I gave it up for good on my 12th birthday.
There is ONE thing it has changed though, which I'm very grateful for:
Before I was 12, I'd get a very bad stomace ache and throw up all day once a year. It may not seem like much but throwing up is seriously the one thing I hate more than anything in the world!
But I haven't had my "annual stomahe ache" since I tried the diet. Coincidence? I think not

Wendy, that still could be coincidental because this period (12-24 months) is so rife with developmental shifts and peaks. That's the problem with making associations with children that are still in such a nascent stage developmentally. It's the mistake the vaccine blamers make... so many vaccines are given during early childhood that you could associate practically anything developmental with them.

I have a daughter about the same age (she is 20/21 months). She is basically nonverbal but about a month ago she went through a "streak" of talking where she was regularly saying 5 words (which was a lot, considering she had been silent). Then she went silent again. If I had taken her off gluten or dairy (she actually already is dairy free, come to think of it) or had her vaccinated I might be pointing to that as a causality either for the onset of speech or the abrupt halt. The problem is you can't really know, because you can't go back in time, do the opposite, and watch what happens.

Chances are there is a tendency for dairy and gluten sensitivities among autistics, but if it were the cause of difficulties, I think it would have been scientifically determined and less anecdotal by this point.

There's this thing called exercise. I suggest you try it.. it's been working for the past millions of years.

Gluten and gluten-like proteins are found in wheat and other grains, including oats, rye, barley, bulgar, durum, kamut and spelt, and foods made from those grains. They are also found in food starches, semolina, couscous, malt, some vinegars, soy sauce, flavorings, artificial colors and hydrolyzed vegetable proteins.

Casein is a protein found in milk and products containing milk, such as cheese, butter, yogurt, ice cream, whey and even some brands of margarine. It also may be added to non-milk products such as soy cheese and hot dogs in the form of caseinate.

The theory is that some people with autism and PDD cannot properly digest gluten and casein, which form substances that act like opiates in their bodies. This "drug" substance alters the person's behavior, perceptions, and responses to his environment, according to this theory. Research in the U.S. and Europe has found substances with opiate activity in the urine of a significant number of children with autism.

One recent study found behavioral improvements in children on a GFCF diet, while another study found no significant effects from the diet.

It's been suggested that the use of enzyme supplements, which would aid in the digestion of such foods, is just as effective if not more so than avoiding said foods.

I can't take the risk. I like having meat on my bones, besides I'm following a combo of Nutrisystem, Weight Watchers and the Canada Food Guide.

I realize it is most likely a coincidence, but it still seems strange. He had a few words and didn't point at all (except at lights) when he was evaluated, and 2 weeks later, he started pointing AND talking. Just weird. And pointing that late is much more abnormal than not talking.

Like, I said, even if it's a coincidence, I'm going to stick with it for a while. It's not a trial for me b/c of his wheat allergy. We already can't eat pretty much anything processed b/c he's allergic to eggs, soy, wheat, peanuts, nuts, and shellfish, and I'm allergic to eggs and milk, so between all of those, that's the bulk of American food. LOL. It's actually easier to find gluten-free recipes than it is to find just wheat-free ones. Not that we ate much processed foods before, but I did indulge once in a while. Now my only indulgance is Green and Black's dark chocolate. Maya Gold. YUM!

Most of his talking is still echolalia. If you say something, he'll repeat the last phrase over and over and over. But he does say what he wants when he wants something. I think he's actually easier to understand than my 3 year old!

btw, Chimaera, did you know bulgar, durum, kamut, and spelt are really just types of wheat? So it's kind of redundant to list them separately. When I'm listing them, I usually put them in parentheses after wheat. So many people don't realize that they are types of wheat. And especially spelt and kamut are marketed as being "different" from wheat, more digestible, etc, when they are actually just a type of wheat. It's very misleading. My son is allergic to wheat, and while he has no noticable reaction at all to rye or barley, he has the same reaction to spelt and kamut as he does regular durum (pasta) or bread wheat. He reacts to oats only sometimes, which makes sense as oats themselves do not contain gluten. They are listed as a gluten containing grain b/c American oats have a large amount of wheat contamination. Irish oats are supposed to be ok for the wheat or gluten allergic/intolerant. There is also an American company that guarantees their oats are free from wheat and gluten contamination, but I can't remember the name.