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If you're thinking about starting a Gluten Free/Casein Free (GFCF) diet for your child with autism, you're taking on a major project. Gluten is a wheat product, and it's present in everything from bread and cake to rice cereals and candy. Casein is a milk protein, and it's almost as common.

Still, anecdotal evidence says that GFCF diets can make a huge difference for children with autism. Are they worth the agony? Carol Ann Brannon, a nutritionist and expert in nutrition and autism, says "yes" - and offers hints and tips for getting your child started on a GFCF diet.

Do you have a child on the GFCF diet? How have you managed to get started and stay on track? Or did you find it was just too tough? Share your experiences here!

Comments
April 19, 2007 at 7:05 pm
(1) M_Apple says:

I am the father of a 4 year old in the Uk with autism formally diagnosed ASD in may 2006
We initially started the GFCF diet as skeptics i took the belief that i we could fix his digestive problems the diet would be worth the hassle

Within 2 days there were dramatic changes, eye contact, increased language and he stopped biting and self harming himself, better co ordination ,in fact at the time i produced a list of 22 improvements.
we are now using the SCD diet and continue to make progress.

good luck

April 24, 2007 at 7:33 am
(2) Lola Mateos says:

Children with autism present a form of ADHD. If you check the information booklet of any of the companies who want to sell ADHD medication you would notice that they suggest a change on diet as part of the treatment when taking the medication. Less carbohydrates and more protein is the key for success.

April 24, 2007 at 8:40 pm
(3) Devin's Mom says:

The GFCF diet is incredible. We noticed improvement within 24 hours.

My son was not being treated in any other way (including therapy) when we began the diet – so I am confident his changes were a result of the diet.

It does take some getting used to, but it’s not as difficult as most people make it out to be.

Here is my RECEIPE for GFCF success:

To a child’s life add;

1 story: “Unraveling the Mystery of Autism and PDD” by Karen Seroussi

2 receipe books: “Special Diets for Special Kids” Part One and Two

2 web sites: http://www.autismndi.com and http://www.tacanow.com (for lists of non-food products that contain gluten or casein to stay away from)

Remove any soy from the batch

Toss in 1 Organic grocery store

Mix together with a dash of non-toxic cleaning and healthcare products from Seventh Generation

Let the ingredients take effect.

Serve at a roundtable discussion with family, friends, caregivers and teachers explaining this is a commitment you need everyone’s support on.

…and enjoy the rewards!

-Devin’s Mom

April 25, 2007 at 4:57 pm
(4) Jennifer says:

I took our 7 y.o. off of gluten products almost 5 weeks ago and noticed a big difference in behavior. I’ve become creative in cooking and have found contacts that are members of a local gluten-free club. Additionally, I’ve done on-line research and have found recipies. I don’t mind the hard-work….it’s worth it! To Devins mom…Thanks for the recipe and listing the websites!

April 25, 2007 at 9:54 pm
(5) Devin's Mom says:

Jennifer-

You’re welcome.

….Thank you for working so hard at the diet. Your child is lucky to have such a dedicated mom.

April 28, 2007 at 10:03 am
(6) Jordan's Gramma says:

Jordan was diagnosed with Autism & ADHD in Dec 2004. We tried the gluten free/casein free diet with Jordan. It was such a horrible experience for him. The breads are the worst & were is biggest downfall. He’d cry for peanut butter & jelly sandwich on “real” bread. Any suggestions.

April 28, 2007 at 12:56 pm
(7) Devin's Mom says:

Jordan’s Gramma-

I know it is difficult when our children (or grandchildren) want something, can’t have it, and don’t understand why. Food is especially difficult because we need it to survive so it’s not like we can “just say no” to food; and food is also tied to us emotionally, socially and culturally.

Some ASD kids actually go through a physical withdrawl period when gluten and casein are removed from their diet (don’t forget to remove soy as well) so Jordan may have been experiencing withdrawls – or it may be just the emotional ties to the familiarity of the sandwich.

My best advice, without knowing Jordan, would be to start with more whole foods and avoid trying to substitute (especially with baking). Often the “no bread is better than subsitute bread” theory. Keep to organic meats, vegetables, fruits, nuts. Later experiment with substitues like bread, cookies, etc.

For my son, I put onions and garlic in with a steak while I fry it in avacado oil – the onions carmelize and then I pour the onions and juice from the steak over green beans (instead of butter) a dash of salt, a small portion of sliced oranges – my son loves it! Use the ‘drippings’ from cooking meat to flavor other dishes.

From Joran’s emotional standpoint, the other members of the family may have to do without the foods Jordan can’t have for a while, until he becomes accustomed to his new menu. (At least avoid eating the no-no foods in front of him.)

I encourage you to explore the resources I mentioned above in comment #3, and perhaps you might find a support group in your area that is partiacularly interested in, and experienced with, the GFCF diet. There are groups that specifically meet for that purpose. Do some investigating.

Most importantly, don’t give up. Jordan needs you to help him feel better.

Best Wishes,
Devin’s Mom

May 5, 2007 at 5:20 am
(8) Judith says:

How do I start the diet. What do I buy from the supplier and what can a day’s meal on GFCF diet look like.

July 30, 2007 at 1:28 pm
(9) Ilyas says:

Dear Devlin’s Mom,

I’d like to ask 2 questions if I may;

1) Why is it better to steer away from soy milk (or products conatining soy)?

2) What do you use as a milk substitute, if any?

September 19, 2007 at 4:21 pm
(10) John says:

The gluten free diet is beneficial for many different illnesses-try adding rice oil-www.californiariceoil.com. It has wonderful natural health benefits.

September 19, 2007 at 9:45 pm
(11) Shira says:

My 10 y/o son has ADHD and while I would like to try the GFCF diet, he is so picky that there are very few things he will eat anyway, and nutrition has always been a problem. I have been giving him supplements for years. It’s hard to avoid 90% of what he eats! He has been tested and found allergic to wheat, soy, and peanuts, but only mild according to the skin pricks. Any suggestions? He won’t listen to reason at all.

September 26, 2007 at 8:39 pm
(12) suzanne says:

Hello, I am a mom of an 5 yr old autisic boy. I am starting the gfcf diet. I also heard about OMEGA 3.6.9.and anti fungal drugs. Have you done any of these and did they work for you? And how did you go about the diet? Thank you

December 19, 2007 at 10:17 pm
(13) Kelly says:

Let me guess, most of your children had the autism symptoms after the third round of shots?

yep, thought so

It’s in the shots!

March 6, 2008 at 8:31 am
(14) jennifer says:

my 6 yr old was diagnosed when she was 2 1/2
she has never had any type of digest issues, does that mean the GFCF diet will do nothing for her????????

March 22, 2008 at 8:07 am
(15) Stacy says:

Sorry Kelly…in response to comment 13, my daughter was this way before her vaccinations. She was diagnosed developmentally delayed at 9 months old. Please don’t leave misinformation for parents. There is no evidence-based facts regarding vaccinations causing autism. I’m not a doctor and would like them to find the cause just as much as all of you, but that’s probably not it. It is a neurological disorder. Please research and check your facts. Also, this is not to say that there is NOT a link or to discredit what other moms think.

April 15, 2008 at 3:54 pm
(16) Zoila says:

I just started my 7 y.o. boy on a gfcf diet. I find it very hard not only to follow it but also to find the items. For example my son is a cheese and milk lover. What can I replace the cheese with?… thanks…

June 10, 2008 at 12:08 am
(17) Tanner's mom says:

Can anyone answer the other mom’s question about soy? Why should we keep our kids away from it?

July 3, 2008 at 6:24 pm
(18) kim says:

Soy is a bean so it has a bit of gluten in it. Also about 80% is GMO and it has a lot of phytoestrogens in it. All bad stuff for those with neuro sensitivities.

September 10, 2008 at 4:31 pm
(19) Liz says:

Beans are NOT gluten-containing foods. While it is true that many soy-based foods contain gluten, this is because they are processed with wheat. Most Soy Sauce contains wheat, for example. Soy does not naturally have gluten in it.
I am not trying to defend soy here. It’s highly likely to cause its own sensitivities, is one of the “top 8″ food allergens, and it has chemicals in it that mimic estrogen. I shy away from a heavily soy-based diet, and I prefer to use rice milk or almond milk where dairy must be avoided. I tend to think that soy can be part of a healthy diet for most people as long as it’s not consumed too heavily — but, like gluten and casein, it’s in so much of our American diet of processed food, I doubt very many people in this country keep their soy intakes within a reasonable level (unless they cook everything from scratch, as I’m learning to do on a GF diet).

October 30, 2008 at 1:27 pm
(20) Lela says:

I follow a gluten free diet and beans do not contain gluten. THey are allowed on a celiac diet. Please don’t spread misinformation. Learn of what you speak before you do! I don’t mean to be unpleasant, but the gluten free diet is hard enough without misinformation! Beans are highly nutritious and a good form of protein, carbs, vitamins and minerals. Soy products frequently have wheat added to them so that’s the rub with wheat, as the othe rposter suggested.

November 3, 2008 at 3:32 pm
(21) Vicki says:

We started the GF diet 1 year ago for my adult daughter (33) with autism & epilepsy. The number of seizures has been greatly reduced, she is more responsive, increased eye contact, and her stiff hands and arms are more relaxed. She is also on a lactose free diet which helped her chronic sinus infections and extreme constipation.

Regarding the vaccine topic: My daughter displayed signs of autism as early as 1 month (prior to any vaccines); however, she did get epilepsy from the Pertussis vaccine, as well as an increase in self-abusive behavior.

November 16, 2008 at 1:59 am
(22) Lee says:

There is evidence regarding vaccines, see case of Hannah Poling in the US.
It may not be true in your case, however it is not misinformation!!

And lots of kids on GFCF diet can’t tolerate soy as its molecular structure is so close to that of casein.

November 17, 2008 at 1:11 pm
(23) nickey says:

my son is 6 yrs old and has no speech, although he is very hyperactive.I am depearatly seeking advice to how to start a gfcf diet everything is so expensive.

March 5, 2009 at 7:43 pm
(24) Bryn says:

Thank you Lee says, It’s so nice to finally hear from someone that doesn’t just throw out personal opinions as facts… I really appreciate your comment of (accurate information.)

June 23, 2009 at 11:59 pm
(25) Tara says:

I have a five year w/ autism and will be starting the GFCF diet very shortly. I will be doing it cold turkey, I am worried he might try to starve himself. But will keep you all updated on how the diet goes for him.

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