What do you think about the GFCF diet and #Autism

I don’t know that I have ever actually discussed this.  I had a parent contact me and ask about the GFCF diet.

Basically, their child has been on it for a year and they haven’t seen any improvement. 

They asked for my opinion, which I shared. Personally, I don’t buy into the whole diet thing.  There is little if any scientific evidence that shows any benefit for kids with #Autism.

Having said that, many families swear by it.  It’s hard not to stand up and take notice when so many people think it’s the greatest thing in the world.

We have Celiac in my family and the GFCF diet can literally be the difference between life and death.  So, I’m very familiar with the diet from that perspective. 

My personal thoughts are that kids that do better on the diet, are simply responding to the absence of an allergen.  On the other hand, I often wonder how much of the success stories are people seeing what they need or want to see?

I’m not judging anyone for pursuing the GFCF diet as it’s actually a very healthy diet that most people would benefit from. 

Even if the diet does work for some people on the #Autism spectrum, that doesn’t mean it will work for everyone.

So I ask you. How do you feel about the GFCF diet in regards to improving the life of your child with #Autism? Do you think it works, if so, why?

Have you tried the diet with your child?

Let’s have an honest, open discussion about this because many parents are  desperately looking for answers or options. 

Much like the vaccine debate, this can be a hot issue and I only ask that we respect everyone’s views, even if we don’t agree.  Maybe we can all learn something from each other. After all, we’re all on the same journey and want what’s best for our children.

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Rob Gorski
Father to 3 boys with #Autism, 1 with Fragile Health. Award winning blogger, techy and advocate. #AutismDad @GuardianLocate
Rob Gorski

Rob Gorski

Father to 3 boys with #Autism, 1 with Fragile Health. Award winning blogger, techy and advocate. #AutismDad @GuardianLocate

0 thoughts on “What do you think about the GFCF diet and #Autism

  • December 4, 2012 at 9:34 am
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    The only thing I would like to add to this discussion is (because I believe a lot of the benefit to GFCF is due to ilimination of allergenic foods, at least for my son), if you go to a GFCF diet you need to rotate the alternatives or you will end up with an allergy to something else. 

    Before we had our son tested for allergies we went GFCF.  Soy seemed to bother him so we went with Rice because that was easy to get.  It was rice everything until we had him tested and discovered he was allergic to rice.  After nearly 10 years on the diet we have eased up and had him retested every year for food allergies, now we allow him milk products on a limited basis but very little in the way of wheat, corn, oats, rice, soy – all because of allergies which cause behavior problems assuming because he does not feel good.  He gets in rotation: MIllet, sorghum, quinoa, amaranthe, teff and buckwheat all which I make things from scratch.  The time and money involved is substancial and it is impossible to rotate all of the ingredients.  He might be developing allergies to those ingredients but I do not see any alternatives.  You do what you can do.

    It might be that going GFCF when they are very young helps them but when their systems mature the main thing is to eliminate the allergens. 

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  • December 2, 2012 at 4:51 pm
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    It doesn’t hurt to try.  Autistic kids are put onto all kinds of meds these days (particularly if they have a diagnosis of AD(H)D as well), so making healthy diet changes wouldn’t be bad.  I have read about real results using marijuana for kids with autism (probably at the very least helps calm extreme anxiety) and I’d consider that much safer than pharmaceutical narcotics to try, of course you have to be smart about it as well.

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  • December 1, 2012 at 4:26 pm
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    It is my personal belief that many children with atypical presentation celiac disease are misdiagnosed on the autistic spectrum. Or, put another way, it is my personal belief that undiagnosed celiac disease in a developing child can cause symptoms of PDD-NOS. Many people who try the diet because a child has autism or has been preliminarily diagnosed with PDD-NOS, particularly when the child is very young, do not adhere to the diet to the extent they would if the child was diagnosed with celiac disease. I believe in many cases this accounts for the absence of noticeable change. Atypical presentation celiac disease can include seizures and other neurological symptoms, autoimmune problems, headaches, migraines, fatigue, “foggy brain.” In a very young developing child, it would be easy to chalk all these things up to a spectrum disorder. With all due respect to @notanaffliction – an allergist cannot tell you whether eliminating gluten or dairy will help you, although many many people erroneously believe this. Moreover, tests for celiac disease *frequently* result in false negatives, even in the population of people with a typical presentation. And finally, symptom relief will not be obvious until someone has been 100% GF for a period of several weeks, ideally as many as 8. A person who goes GF for two weeks and makes a mistake (even a minor mistake) every day will never see any difference. This is true even for celiac disease. It’s not the kind of thing you just “try,” half-heartedly, or even whole-heartedly for a very short period. It is very very difficult not to make mistakes when you are just starting out on a GF diet. You will inadvertently ingest gluten. So a long, earnest 100% trial is essential.

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  • November 30, 2012 at 9:34 am
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    An allergist can tell you if eliminating gluten or dairy will help you before you make radical changes to your diet. My son was diagnosed with a wheat allergy but not a milk allergy, which makes both our lives easier.

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  • November 30, 2012 at 4:18 am
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    There are studies that show that gluten can be an inflammatory factor for a lot of people, even people who may not show other signs of being gluten intolerant. That being said, having a diet low in inflammatory foods has shown in some studies to improve brain functions in people with certain disorders, especially schizophrenia and its related conditions.

    I think that in general, GF diets CAN be healthier, but it really depends on how people do it. So many people do elimination diets and either substitute with things that can be worse for them, or they don’t substitute at all and end up losing entire portions of their diet and nutrition because of it. It’s really important for people to do all the research into how to have a properly balanced diet when eliminating things, and this is especially important with developing children (for example, cutting out gluten and replacing everything with rice is a bad idea considering the levels of natural and man-made arsenic that rice can contain).

    I think, if done properly, GF diets are important things to try, but I also think that there’s the possibility that a lot of people go about it in the wrong way and end up doing more harm than good.

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  • November 30, 2012 at 1:48 am
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    A lot of people with allergies do have non-physical reactions to food – behavioral and emotional reactions, basically. I totally believe that the diet can have benefits for anyone who has allergies to those foods – and those are pretty common allergens, so it can’t hurt to try. 

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  • November 29, 2012 at 7:00 pm
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    Our child has been on the diet for 12 years, and we just decided to eliminate soy (there was very little of it in his diet anyway, but we noticed that too much soy margarine upset his system). There is a history of digestive disorders in our family and even with the diet my son’s digestive health is a constant challenge. Whether it is part and parcel of autism people can debate for some some kids it is clearly a factor. What I can say is that when he is unhealthy his is more autistic, and when he is gluten casein and soy free he is healthier, happier, and more communicative. When we began these interventions in 2000 we had concrete, data driven results (I will spare you the graphic detail) that convinced us our son was healthier without gluten and casein – we would never have stuck with it without those clear, positive outcomes. My mantra is that you do what is in your power to help the child that is in front of you, and you let the data drive the process. That goes for diet, sensory input, learning styles, speech, everything. Stick with what works, ditch what does not.

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  • November 29, 2012 at 7:00 pm
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    My son was diagnosed with food sensitivities by a DAN Doctor/ allergist in Kansas. We have eliminated Gluten/wheat, Casein/dairy, Soy, Corn, etc. from his diet for the past 3 years and have had him on multiple supplements, B12 injections and allergy shots. We recently moved to Colorado and have been seeing a new allergist. He dismisses the treatments as bunk. He has taken our son off the allergy shots, he now takes 10 mg of Claritin per day, and we have been reintroducing some foods. I haven’t seen a huge difference in his behaviors since we’ve begun reintroducing foods, but I did notice improvements in speech, eye contact, focus and a reduction in aggressive behaviors once we converted to the elimination diet. I have read where we may have “healed” some of our son’s leaky gut issues, so I’m still somewhat hesitant to allow him to eat anything he wants. I’m afraid he may regress and some of his behaviors may return. The jury is still out on whether the diet “worked” for him or not, but it’s definately a huge commitment.

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