Gluten free Casein free diet helpfull?

Anna - posted on 05/17/2011 ( 10 moms have responded )

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Our new doctor is highly recommending a gluten free casein free diet. I cannot express how difficult this will be on my daughter however I am willig to TRY it if it will help. Does anyone have experience either positive or negative with this?

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Stacy - posted on 05/18/2011

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We have been GFCFSF (soy free) and Feingold (no artificial dyes, flavors or preservatives) for 8 months now. At the beginning, I said NO WAY. It looked impossible! But after doing it for so long now, you figure out what's safe, what isn't, and it's really pretty easy. We started with Feingold first and saw the biggest changes. Tantrums were GONE. We started to see empathy and tons of eye contact. NO hyperactivity at all anymore. With the GFCFSF (if you remove casein, you need to remove soy, since it mimics casein), it was more subtle. We did a 6 weeks trial at first and found he was just a much more easygoing kid. No more arguments from him, lots of cooperation, he did better at school. We tested casein and gluten after the trial and the school called us to find out what changes there had been at home, he was so disruptive. So right there it told us it was working.

What part of the diet worries you so much that you think your daughter won't like it? My DS still has french fries, burgers, chicken nuggets, hot dogs, juice, fruit treats, jellybeans, you name it. There are very, very few things we've had to cut out entirely.

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Cynthia - posted on 09/19/2012

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Yes! I started my autistic daughter on it last March. I had been reluctant to do it since we're vegetarian, and I couldn't imagine that it would help that much. She had extremely severe chronic constipation that was getting worse, so I finally bit the bullet and tried it when I found the cookbook The Welcoming Kitchen on Amazon, GFCF and vegetarian. Within two days of starting the diet, the constipation was gone! It was the closest thing to magic I've ever seen! When she infringes the diet, the constipation is back immediately. It's not that bad. I alternate rice and soy milk as her beverage. Neither is ideal: rice milk has some arsenic, and since she has autism because she reacted to the hep-B vaccine and the DTaP, and doesn't excrete the heavy metals as well as most do, I was afraid of the arsenic being stored and accumulating. It doesn't have any protein, so I put a cup in the blender with a little Nesquik and a tablespoon of pea protein powder. It has calcium added to it already. The soy milk isn't ideal either, many people think it's as bad as gluten or casein, but that's not the case for my daughter. But it has estrogenic chemicals which are bad. But it has both protein and calcium, about as much as milk. And so we alternate.

There are several gluten free breakfast cereals which are good, marked boxes of Rice Krispies and Chocolate or Cinnamon Rice Chex. There's Glutino bread, bagels, hamburger and hot dog buns, which are good and gluten free. There's all sorts of bean and vegetable dishes, ratatouille, polenta with veggies, stuffed baked potatoes and potato pancakes, risotto and other rice dishes, buckwheat and quinoa dishes, delicious pasta made from quinoa or rice.

There are gluten free pizza crusts (Schar and others), pie crusts, cookies both packaged and homemade. You get Bob's Red Mill gluten free flour mix, mix it with a little guar gum as well as baking powder and soda, and you're all set. I made a delicious chocolate cake for my daughter's birthday with a recipe from The Welcoming Kitchen. Frosting made with coconut oil instead of butter, delicious!

The Spunky Coconut is a great cookbook, but there are actually lots of others, ask Amazon.

My daughter lost her bloated stomach because of the diet, her body wasn't properly digesting what she ate, because she, like most autistic children, is definitely gluten and casein intolerant. The relief from the horrible, painful, permanent constipation has been an indescribable relief! I dreaded going on the diet, but now, six months into it, I can say it's not that bad, you get used to it, and your child's improved health will make it all worthwhile! We're going to try SCD goat milk yogurt next week, cultured for 24 hours to pre-digest the lactose and casein, good nutrition and pecanbread.com thinks it's beneficial for autistic kids, but we'll find out.

Julie - posted on 06/01/2011

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It's amazing to read all these stories! I tried that diet with my son who has ADHD, ODD & PDD and his behavior got so much worse I had to stop!! I stuck with it for 2 months but in the 1st grade he almost got suspended so I called it quits.

Anna - posted on 06/01/2011

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Thanks for all the insight and encouragement. We are going to give Gluten free a try and then move into casein. Many prayers over this and my little PDD sweetie pie....we'll see!

Lynn - posted on 05/26/2011

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There is actually basic science to the GFCF diet. I can only speak from my son's unique experience but here's the way his dietary condition was described to me. Casein, milk protein, was being trapped by yeast in his body and then fermenting into an opiate. This caused him to appear cloudy headed or drunk. It takes a long time to get casein out of the system because the yeast peels away slowly like an onion. As casein leaves the body it can cause behavior flare ups. All casein must be eliminated and that includes all soy products of any kind. It also helps to have probiotics to flush the system out. Supplements were prescribed to my son because many things like vitamin C for instance were not being absorbed properly because of the yeast in his system. He used to moan while he slept, pooped several times a day and walked in circles telling stories. All of this behavior has stopped since the diet. We experimented by giving him a glass of milk and his reaction was almost immediate. He went right back to the circle walking, story telling, and sleep moaning. Don't be afraid to try it with with your picky eaters. I know parents just want to see their kids eat but if they are supposed to stay away from casein and gluten chances are that's the food they will crave. My son was a diaryaholic before the diet but he adjusted. I want my son to get better so there is nothing I won't try—as long as I can afford it :) (*Note: I corrected "bacteria" for "yeast")

Melissa - posted on 05/26/2011

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We did the diet with my son and saw no marked change. His behavior changed somewhat, but it can't be attributed to the diet because it continuted to change positively after he went off it. If your child has a dietary issue, such as an allergy, that would necessitate an extreme diet, that's one thing. But eliminating what may be most or all of his preferred foods in hopes that it might make him pay attention or act out less, I'd be wary.

Stacy - posted on 05/25/2011

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My DS had ZERO digestive issues prior to starting this diet. It was all behavioral and we still saw improvement. He also tested negative for casein and gluten intolerance. He doesn't have an allergic response to them - he has a sensitivity and that can't be measured by tests.

Kellie - we did it slowly. I found things that he could have to replace the things that he liked the most. He used to love Tyson chicken nuggets - now we use Ians. Ore Ida is out, but Alexia fries are safe. Any candy by Surfsweet is safe (including gummy bears, sour gummy worms, jelly beans, etc). Any plain meat is safe. Any fruit or vegetable is safe. As far as supplements - he hasn't needed any. Calcium-fortified orange juice has as much calcium as a glass of milk! I've got a list of breakfasts, lunches and dinners he likes and I rotate them, if he can't have what the rest of the family is eating. It's become really easy.

Start slow. Feingold was easiest for us - no artificials. The we went CF about 6 weeks later. About 4 weeks after that, I was able to remove all gluten and soy. I slowly made changes tho....if I found one new thing he liked, then I would eliminate one of his other snacks that contained gluten or casein. We slowly did this - over time you eventually just have a new list of things he can have that are safe. A lot of things were duds, but we also had a lot of new favorites as well.

One word of caution - be careful with cheese and yogurt subs. Wait a few months before reintroducing these, because they don't taste anything like milk-based products. We tried them a few weeks after going GFCF, and DS didn't like them. Tried again about 3 months in, and he loved them!

Lynn - posted on 05/25/2011

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I saw a HUGE difference! I cannot stress enough how much it helped my son. We did it on our own at first then we saw a DAN! (Defeat Autism Now!) nutritionist who discovered he only needed to be on a casein free diet. I highly recommend having your child tested for gluten/casein intolerance first before you start so you don't waste time and money with unnecessary treatments. I know first hand how hard it can be to implement this diet, but if it works it's more than worth it.

Melissa - posted on 05/19/2011

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I see a difference. It's hard for us as we have 1 with GF 1 who doesn't need any restrictions and one diabetic. The dibetic needs what the GF can't kinda fight all the time. I say start small and work your way up. angel food minstries has a allergy box that is GF.
http://www.angelfoodministries.com/menus...

Also some things you may like to buy before you learn to make them are the GF breads. Some bigger cities have specialty stores but you can buy online. Also you can season your own meat with things like Alegro smoke seasoning. It's flavorful, we use it a lot. Fresh/raw fruits and veggies and lots of them. I love that it gave me a reason to eat healthy again. I always have fruit on the table for the kids to just grab now. Marshmellows and fruit snacks are treats. Look for corn or rice chips. If you have a publix they have a GF and a CF list on there websites to help your shopping. :)

Within a week my son was sleeping! He hasn't ever slept! When we let him splurge ( family get togethers where its hard not to watch his every bite) we have a hard time for about a 2 to 3 day span but once we get that all flushed out, he is back to a routine. He listens better, follows directions better and he stops seeking so much.

Good luck

Kellie - posted on 05/19/2011

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My son's grandparents want me to try the diet as well. I'm not against it, it just that it is expensive. I was also wondering if they needed extra supplements or anything like that? Did you guys cut everything out right away or did you slowly do it? I know you don't see any dramatic results until it completely cut out, but I'm curious. Stacy, with the nuggets, do you make your own now? and if so any particular way you make them?

Jen - posted on 05/18/2011

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The diet works if your child's autism or autistic like behaviors are exacerbated by problems in digestion. I tried the diet for 8 months, and didn't see any changes in my child. Then, we had a power outage and were caught in a restaurant where we could not control our daughter's grasping of the bread rolls, etc. We decided to let her eat what she wanted. Two weeks later, our daughter made a huge leap in developing communication skills. I realized that if she had made that leap while still on the diet, I would have attributed her gains to this regimen. She would never have had milk products or gluten again! So, you can try it -- it can't hurt. But also know that children mature and change over time. If his stomach is bothering him, the foods you give him could be making it more difficult for him to concentrate, etc. But it shouldn't take more than two weeks to see a difference.

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