GFCF – Re: Unraveling the Mystery of Autism

11 May

Re: Unraveling the Mystery of Autism

I wish I had time to read a book like this, as I know a lot of other parents are reading it. However, I did manage to find the most top-rated review of the book by someone who DID read it, and her response is much better than anything I could have written.

Would that it Were so Simple, October 6, 2000
By Liane Gentry Skye, “www.lianegentryskye.com” (Florida, USA) –

Karen Seroussi has woven a remarkable, well-written story of her son’s recovery from Autism through tedious dietary interventions. Her offering of recipes gives the parents considering the diet for their children a place from where to start. As the mother of two Autistic children myself, I felt compelled to read it, even though a grueling 18 month trial of the diet in our home offered few, if any, results, other than depriving my sons of what foods they were willing to eat.
Seroussi is a gifted writer, and tells her story from her mother’s heart. But facets of her story disturbed me deeply. After reading this book, I felt my choice to live as a mother who has come to accept her children’s Autism and lead them towards a good life in spite of grim prognoses was viewed by the author as something to feel ashamed of. While this may not have been Seroussi’s intent, the insistence that something is wrong with parents who don’t try her techniques, or tried the diet and had it fail are somehow lacking was very bothersome to my heart.


Granted, dietary interventions have helped many Autistic children. However, this his book implicates that any parent who does not attempt the diet which benefitted Ms. Seroussi’s son is failing his/her child. Children who respond to diet are most specifically those showing a serum IGE response to specific allergens and gliadin antibodies. I’d strongly recommend any parent who considers putting a child through such a restrictive regime will get the bloodwork done first. This diet is not easy to implement and it is not easy to encourage an older child to follow it when away from home.


This book tells a rare, triumphant story. It is well documented, and worth a read. But please, don’t see diet as a cure-all if the techniques outlined simply don’t work for your child. The sad truth is, if diet were the cure, there would be no Autism.

I felt the need to blog on this because I had a parent of one of my students who wanted to try this diet bring the book up. I gave her what you read above plus a link to my blog so she can see whatever comments this particular article generates. And it will probably generate a few.

The Gluten Free Casein Free (GFCF) diet is controversial for a lot of reasons, most of which are covered above by Ms. Skye above. I do have a study that was done on dietary intervention for autistic behaviors and it did seem to indicate that the diet might be helpful:

Knivsberg, Reichelt, Hoien and Nodland (2003) Effect of a dietary intervention on autistic behavior. Focus on Autism and Other Developmental Disabilities, 18, 247-256

Abstract:
Autistic syndromes are characterized by impaired social, communicative, and imaginative skills. Urinary peptide abnormalities, in part due to gluten and casein, have been detected in some individuals With autism. These abnormalities reflect processes With opioid effect, Which may explain the behavioral abnormalities seen in autism. The aim of this single-blind, controlled study Was to evaluate the effect of a gluten-free and casein-free diet for children With autism and urinary peptide abnormalities. Observations and tests Were carried out With the 20 participanting children before they Were randomly assigned to either the diet or the control group. The experimental period Was 1 year, after Which observations and tests Were repeated. Significant reduction of autistic behavior Was registered for participants in the diet group, but not for those in the control group.

It’s the best study I’ve ever seen on the subject, but it still has flaws that you can read for yourself if you want to get the full article.

My wife and I did try the diet when our son was younger. It was not the best of efforts and it was resisted strongly by Thomas (I’ll keep his blog name the same to avoid more confusion than there already is!). His favorite food of all time is pizza which is pretty much nothing except gluten and casein. His favorite thing to do of all time is to eat out at the neighborhood pizza buffet. So right off the bat, we were off to a poor start. Let’s add a couple of other things into the mix:

  • – He has a younger brother who likes pizza, hot dogs, cheese burgers and other more typical “kid food.”
  • – He has a mother who basically likes the same sort of diet.
  • – We were a single-earner family, and that would be me on a teacher’s salary.
  • – We had a lot of other things going on just like everyone else

The cook in the family is me, and I resisted the diet for a long time because of the bother and the expense, but my wife, Jane (We’ll keep her blog name too) convinced me to try it, especially after I read the above study. So I did more research on the subject and did some thinking.

Wheat is not native to North America, so the people living here before the arrival of Europeans had to live on something else. That thing was maize (corn) and a variety of vegetables and potatoes which *are* native to the Americas. So it seemed like a more simple task for us to adapt to a more native diet as opposed to trying to find adaptations of a European one. I was thinking outside the box, but apparently ranged too far for the rest of the family. I did by the corn and soy-based noodles and flours and assorted other GFCF foods.

The entire family, including Jane, rebelled and none of them really went for it. They were sneaking donuts, cheese, pizzas and every type of forbidden thing every chance they got. The thing about doing this sort of diet is that “in for a penny, in for a pound.” You are either all in or all out. Having ANY gluten at all basically kills the whole process. This is not about scaling back or reducing intake it is about going cold turkey! So the entire family really has to be on board for it to work, and it was a forgone conclusion that by the end of our experiment the only one who stayed gluten free was me. That’s because I liked the things I made with corn tortillas and I don’t mind eating the same thing almost everyday. For everyone else, it was not a happy arrangement. The corn and soy noodles are probably still in our pantry as is some extra GFCF pancake mix.

Will a parent see improvement? Some will and some won’t, but this is not a light undertaking. A body has to be willing to go all the way with it, which our family was not collectively willing to do. And you know what? It’s all right. We are not poisoning our children by letting them eat the food they enjoy. We balance our meals with fruits and vegetables every meal. I grow a lot of my own fruits and vegetables in our own garden. Our family is okay and I might venture to say we are doing well because we are a more balanced family that has gotten away from letting autism rule over our lives. It’s something we live with and deal with but we’re not going to let it dominate us and get us all down. Parents who don’t want to try every single intervention under the sun shouldn’t feel guilty for not doing it anymore than I should be made to feel guilty about not getting LASIK surgery for my eyes. I have bad eyes and I wear glasses. My choice. If Thomas decides he wants to go on the diet later in life, that’s his choice. What about those autistic persons who can not make their own choices? Then caregivers do have to make those choices and make it on the best information available.

But let’s knock off the evangelical guilt-mongering by the various proponents of various cures. If you have a cure, conduct a study and publish it and open yourself up to some serious scrutiny.

D.

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4 Responses to “GFCF – Re: Unraveling the Mystery of Autism”

  1. lookingforlifeshumor May 11, 2008 at 9:09 pm #

    I have that book and agree with the review! We went GFCF for over three years and we really didn’t see any benefit – no real changes after going on the diet or after coming off it. I am glad we tried it, but it isn’t THE CURE or even a one-size-fits-all support for anyone with Autism. It may help a few, but I think too many parents do the diet and then interpret every gain, every loss, every change as being the result of staying on the diet or from having slip ups. It is tempting to follow something that gives you sense of having some sort of control over something. I found it a dangerous trap and for us a waste of time (other than being able to check it off our list).

  2. mimijackson May 11, 2008 at 9:15 pm #

    Well written, and you make LOTS of good points. As the Mom of an autistic child for whom the GF diet worked WONDERS, I do want to add that the whole family does not have to particiapte for it to work. I consider it to be about what I do not let my son have, rather than trying to change what we all eat. Each family finds its own way, but for us, it was an absolute miracle.

  3. Daniel Dage May 12, 2008 at 6:07 am #

    Yes, Lookingforlifeshumor, I agree that many families who try this are also doing various therapies, medications and other interventions, yet they attribute the gains to the diet. As one who provides intensive services, I find that to be very frustrating. Why battle over IEPs if it’s all about the diet? This is what makes a study on this so difficult, as families who do this are also very proactive in all areas. A good thing to be sure, but who gets the credit? The speech therapist, OT or the diet/suppliment guy? Obviously the one getting the most money!

    I’m glad the diet is working for you Mimjackson, and its worth giving it a try. The problem with not having the whole family on board is that it is too easy for the child to go about sneaking in things, but this depends on the age and compliance of the child, too. Mine was entirely too clever about getting in the fridge and pantry and helping himself to things.
    D.

  4. momof2 July 11, 2008 at 3:18 pm #

    I was so relieved to see your comments on this. We have had my son on this diet for 7 months. At the same time we have had him in speech, language, ot, pt, and an ESE Pre-K and started all of the supplements and shots as well. As an ESE educator myself, the therapies and Pre-K were a no brainer for me. The diet, supplements, and shots we were sort of pressured into. We were made to feel guilty because we were not doing all we could for our son. Now all of the “improvements” are credited to the diet and supplements (by the people who were pressuring us to start). I believe that he has come a long way because of all of the accommodations we have made for him with the help of his therapists and teachers. I won’t say diet didn’t help at all because I really don’t know…I just know it wasn’t extremely noticable. I am somewhat torn as to where to go from here because all of this is driving us into quite a bit of debt.

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