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GFCF DIET? TACA Talks, Autism Speaks Whispers

For many years, learning about the GFCF diet has been like learning about sex.  You hear things. Rumors. Whispers.  You ask yourself, "Can this be true?"  You're excited, intrigued and a little scared too.

One parent tells you that her child is sleeping through the night after removing dairy from the diet. You're at the CVS refilling yet another scrip for Clonidine, the high blood pressure drug your doc prescribed off label for your child because its main side effect is drowsiness.  You're an exhausted parent, whose child still drinks 6 glasses of milk a day and eats mac and cheese for lunch and dinner, and sleeps no more than four hours a night. Your ears perk up.  "Sleep?" You ask your doctor about this diet. The doctor, who knows next to nothing about the GFCF diet and who thinks the only "treatment" for the sleep disorder is Clonidine says, "Mrs. Smith. There are no studies proving this diet works. Don't waste your time." 

I've heard over and over from Moms who say their doc pooh-poohed the diet. Of course! No pharma rep ever walked into a pediatric practice offering a can of Dari-Free milk substitute and a Namaste GF chocolate cake mix as an autism treatment for the dozens of ASD kids the docs see.

For complete information on the GFCF Diet visit the TACA site HERE.  You'll find everything you need to get started including a ten week plan. Good Morning America ran a segment today about the diet. We can thank Jenny McCarthy, TACA spokeswoman for the publicity on using diet for treating autism.   

HERE is a link to the Good Morning America piece.

Oh, and here's what Autism Speaks offers its website readers on the diet. Not a ringing endorsement, but at least it's on the site.  You're on your own though to really learn anything useful. Autism Speaks won't hold your hand unless there's a hundred dollar bill in it.

From the Autism Speaks site: 

"Gluten Free, Casein Free Diet (GFCF)

Many families of children with autism spectrum disorders are interested in dietary and nutritional interventions that might help some of their children's symptoms. Removal of gluten (a protein found in barley, rye, oats, and wheat) and casein (a protein found in dairy products), in what is known as a Gluten Free, Casein Free diet, or GFCF, is a popular dietary treatment for symptoms of autism. It is based on the hypothesis that these proteins are absorbed differently in children with autism spectrum disorders and act like false opiate-like chemicals in the brain. The hypothesis is not based on an allergic response. Neither the hypothesis nor the effectiveness of this dietary intervention has been demonstrated in scientific studies to date. Studies are ongoing in a number of centers. However, many families report that dietary elimination of gluten and casein has helped regulate bowel habits, sleep, activity, habitual behaviors and enhance overall progress in their individual child. No specific laboratory tests can predict which children might be observed by their families to have a positive response to dietary intervention. For that reason, many families elect a trial of dietary restriction with careful observation by the family and intervention team.

A trial of dietary restriction requires attention to basic nutritional guidelines. Dairy products are the most common source of calcium and vitamin D in young children in the U.S. Many young children depend on dairy products for a balanced protein intake. Alternative sources of these nutrients require substitution of other food and beverage products with attention to nutritional content rather than solely as a milk substitute beverage. Substitution of gluten free products requires attention to the overall fiber and vitamin content of a child's diet. Vitamin and supplement use may have both positive effects and side effects. Consultation with a dietitian or physician should be considered and can be helpful to families in the determination of healthy application of a GFCF diet. This may be especially true for children who are picky eaters."

Consultation with a physician?  Doctors are the last folks who know about this diet and most of them will admit that.  Doctors prescribe drugs. Doctors order tests. They consider the diet to be a "fad" treatment. It's just not part of their training.

Don't listen. Give the diet a try. Join a Yahoo group like TACA-USA or GFCFKIDS for support and jump in. Sure, the pharmacist at CVS will miss you if you stop needing that Clonidine. So what? The difference in your child could amaze you. 

The first few weeks on the diet can be difficult and awkward, like losing your virginity. But once your child starts feeling better, and like so many kids on the diet begins talking and sleeping? Stops stimming? Like sex, you'll never want to give it up.

Comments

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Benedetta

African Mango Extract;
This is not the article that explains all. It is a parent that is just observing how it is going in the regular community. Hearing things that make a parent stop and look deeper into the science.

You will have to look around yourself just I we all did.
But

here is an article that John Hopkins Medical Unverisity put out.

http://www.hopkinsmedicine.org/Press_releases/2005/12_05_05.html

Most of these kids do have epilepsy by the way.

Then there is the guy that spent 20 years researching a vaccine that in the end caused ceiliacs and he was kind enough to reseach why that was. Remember that celiacs is on the rise just like peanut alleries, nut allergies, and gee every immune disease there is. Celiacs by the way is a diseae that is rather sneaky - that a lot of people do not catch on that eating gluten translates into their symptoms.
This man was featured in a big article in "Scienctific America" But this one will lead you to a radio interview so you won't even have to read unless you want to - because they have it in writing too -- so you can follow along listening and reading too.

http://chriskresser.com/pioneering-researcher-alessio-fasano-m-d-on-gluten-autoimmunity-leaky-gut

These two things should get you started.

I think and I might be wrong on this that Gerneration Rescue is changing form glutin free to the more carb free diet. Milk has a lot of carbs. I tell you this because I was shocked by how much carbs milk had. I always thought of milk as a protein drink -- but that is not true.

So now we have two things to think about -- is the kid allergic to dairy or was that dairy - milk with lots of carbs.

Good luck in your search.

african mango extract,

One parent tells you that her child is sleeping through the night after removing dairy from the diet.

Skye

Can these symptoms occur in teenagers also?

Diane

"Autism Speaks won't hold your hand unless there's a hundred dollar bill in it." I LOVE THAT! Perfectly said and perfectly true (unfortunately).
One more thing...my daughter has been GFCF for over 2 years. The big issue we had was the birthday parties. Once she got better and started realizing what everyone else was doing, she wanted the "real" pizza, not the GFCF pizza I brought along for her. (And, boy, did she freak the first time she was aware that she couldn't partake.) We started using a digestive enzyme and have found that she can tolerate foods "off the diet" with it. It has been a real help for her to be part of what the others are doing...she feels good about doing what the other kids are doing and therefore, about herself. Digestive enzymes are great, but, for the record, check with your DAN! doctor first and be VERY careful about their use with a NY bagel. Far too dense...that was three days of insanity after we tried that one. Just the occasional pizza and birthday cake as your child moves into the mainstream.

Stagmom

Amen, Lisa. Tonight I was at the YMCA where Mia and Gianna take a special needs personal training class. I heard one child, maybe 5 say, "Grandma, can we have McDonald's for dinner?" in my left ear as another Mom was on her cell phone ordering pepperoni and sausage pizza for her family in my right ear. Two families eating pretty unhealthy dinners on a Monday night. Doesn't bode well for the rest of the week, does it?

The diet changed my kids' lives. I had a child the neurologist said, "Oh, she'll be on Ritalin by 1st grade." (The child was three!) When I pulled dairy her red papery cheeks cleared up, her eyes stopped tearing (guess we didn't need those tear duct probe operations after all) and the fluid left her ears (guess we didn't need the ear tubes either.) And her behavior completely changed for the better. She stopped screaming and tantruming and running out of her classroom in a rage after snack (where she drank milk) and lunch (where she drank more milk.) But no, the diet doesn't work say the docs.

KS

Lisa A jeffs mom

If you eat crap, you feel like crap. So - just maybe if you healthy and avoid the foods that make you feel like crap (cause everyone has some of those crappy feeling foods!) just maybe you will feel better? Just maybe?

This concept is not that hard. As a parent controlling my kids diet was something I COULD DO.

Defending crappy foods and a crappy diet (chicken fingers, french fries, gallons of milk) just makes no sense to me.

Garbage in / garbage out. It is pretty simple and a double blind placebo study is not needed to tell you that.

Sorry - I am preaching to the choir.

Jennifer

Awesome post. My daughter is high functioning autistic, almost 3. We started GFCF diet because we wanted to just give things a try. My daughter sleeps through the night almost every night now. I didn't even know that was one of the positive things to come from the diet. Bonus! I tested her with some gluten recently to see... maybe it was just all the therapies she's had. She was a MESS from just the small amount I gave her. Her special preschool noticed right away and wrote home to me that they had taken her temperature afraid she might have been sick. (She wasn't.)

She's back to her wonderful normal (at times difficult) self and full of life. Verbal, social, interacting, dancing! Everyone is amazed by her progress and intelligence.

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