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Experiences with Autism and The Gluten Free Casein Free Diet (GFCF)

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Posted 11 years ago

My daughter was diagnosed on the most severe end of the spectrum, the bottom 1%, one of the most severe cases. Many have observed that while girls are affected far less often than boys, the girls are often much more severely impacted. I was told that my daughter would probably never speak, was severely mentally retarded and would never attend a regular school. In fact I was told that as she got older and all the self-injurious behaviors and anger was turned on me, and she became too big for me to handle, I would have to have her institutionalized. I was told to go home and get a lawyer to help draw up a "life plan" and just love her until it went beyond what I could physicaly handle. But since I knew my daughter was not born with autism and I blame vaccines, I decided to treat her condition as a traumatic brain injury, which I believe it was. One of the first treatmens I instituted was the GFCF diet. My daughter was what I call a "nuclear reactor" she looked as if I had taken her off of heroin. The withdrawal was horrific. Then she slept for 48 hours straight and over the next few days slowly started coming out of it and we would never be the same. 10 days into the diet she pointed and said "our car". I dropped to my knees and cried, we were definitely on to something. Language increased from there adding 20 to 50 new words a week. Within a few months we initiated an ABA program which would have been impossible before the diet. Since starting the diet she had stopped having hundreds of meltdowns a day, had stopped biting herself and pulling out her own hair, and she stopped the horrific banging of her forehead on any available hard surface, and the rocking and hand flapping had slowed considerably. The ABA program took off and she was mastering hundreds of goals a week. The therapists and me found it hard to keep up with her. A few times she was accidently given forbidden foods we saw definite reactions and regressions. Every move we made kept proving we were on the right track. And the biggest change of all, was she was happy, the happiest child I have ever met. From misery to joy all from a diet. Some have criticized parents for instituting the diet, even claiming we are "experimenting on our children with a scientifically unproven treatment." I have seen parents that would allow half their child's brain to be removed in order to stop intractable seizures and yet there are those that worry about a custom diet. We supplemented her diet and ensured adequate nutrition, and in fact since instituting the diet she started eating a greater variety of foods that she had refused to touch before. Her diet became better and more well rounded without the gluten and casein that she was using to self-medicate. After years of ABA and sticking to the diet, my daughter has attended public school with great success. She is completing Jr. High and has made the honor roll every term this year as an 8th grader. She just finished trying out for High School cheerleader for next fall and was picked for the varsity squad. She plays 6 differnt musical instruments and writes her own music. She is very smart, has a photographic memory and is very articulate. I have no doubt we would not be where we are today without both the diet and our exceptional ABA program. Some people say she is a miracle, but that takes away from all the really hard work that she and a lot of other people have done to get her where she is now. Do we still have autistic issues, yes we do. She is still immature for her age, she has trouble with some social situations, and she is very literal and a visual learner. She still has some narrow interests as well as some sensory issues such as sounds that send her diving for cover. She still really doesn't realize that there is any danger in the world, that there are people out there that could have ill intentions and she is not capable of reading that or having "gut feelings" about people. She loves everyone and is sometimes too friendly to strangers. But compared to the gloom and doom predictions we started with and where many other children are that we met at the beginning and who never got the treatments and therapy that she did I will take what we have now happily. And we are never done, never done teaching and learning. She still has great spurts of improvement and exhibits abilities beyond what she has ever had before, so we still have great faith that one day she will be able to live independently, have a job in music, and a fulfilling and happy life, free from pain and hopefully prejudice. I know that the diet does not work for every child, but I always say it is worth a try, after all it is just a diet, and if it doesn't have the dramatic results that it did for us and many other families that I know, you can always go back to a regular diet. But I say first make sure that you try it, and make sure that you are not unknowingly giving gluten or casein in hidden forms. It is not easy to do, the diet, it takes a lot of research, hard work, pre-preparation, supplementation, and you have to be on top of everything. Extra prep for school parties or birthday parties so your child is not left out. There are also now enzymes available that take care of the gluten and casein proteins if there is ever a time when it is unavoidable. But I do not recomend using these in place of the diet and use them sparingly for special occasions. One woman told the story of her son, who like my daughter reacted amazingly to the diet, and when he was a teenager they challenged the diet, seemingly without a reaction, so they slowly went back to a regular diet. six months later their son was diagned with schizophrenia. Needless to say, they went back on the diet. But how devastating to have seemingly beat the autism diagnosis only to be hit with that. There are many anectdotal stories of those with schizophrenia having the same reaction and luck with gluten free as we are seeing with many on the autism spectrum. It needs some serious investigation, better than the lame study that was done so far, going against everything parents told them, and literally setting up the study for failure. It was a poorly devised and poorly conducted study with so many flaws it is really worthless. But trying the diet, doing it correctly and conscientously is woth it, and might just be the miracle that it was for us.

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Olivia Cerf 11 years ago

Wow, thanks so much for sharing! At what age did your daughter receive her diagnosis, and at what age did she start the diet?

achsel 11 years ago

She was diagnosed at 3 years old and we started the diet about 1 month before she turned 4. We started ABA when she was 4 years-4 months old. We did some other things as well, but diet and ABA were the mainstays of our program. I was also told later that had I removed gluten and casein one at a time I could have lessened my daughter's horrible reaction and withdrawals may have been eased. But when I finished Karyn Seroussi's book I dove in without hesitation, the warning about removing one at a time for kids under 4 came a few books too late. A part of me is glad because the dramatic reaction was proof we were onto something and all the incentive we needed to keep going. It would have been nice to have a physician to support us but for most of us that is impossible. Most standard allopathic physicians offer nothing but gloom and doom, and when you do your own research they tell you there is no proof it works, refuse to support you, when the truth is they don't know if it works because it has not been properly studied. The outright misinformation and lack of knowledge by most doctors and pediatricians is immoral in the middle of this epidemic. Not only are they not up on new treatments they usually do not even know about mainstream, tested treatments such as ABA. Even the common co-morbid conditions many of our children suffer from such as immune system problems and severe gut issues are simply ignored and left untreated. As if having Autism dooms you to suffer and are unworthy of their time and treatment. "Well, she does have Autism" is not an answer to serious medical issues. These are the same doctors who then lecture parents about seeking alternative methods. Knowledge abhorrs a vacuum. It amazes me that they offer you nothing then are surprised when you seek answers elsewhere and even angry when you claim they help. I had no time nor intention to wait for them to do studies that they have no intenetion of ever conducting because "to which cause it may point". Women have a history of being mistreated by the medical industry so it is very easy for us to step out of the paradigm and find our own answers. The best part is, that what most doctors do is medicate and cover symptoms, what we are doing is fixing the cause. The GFCF diet can't be patented, bottled, and it will never make any pharmaceutical company rich, and for that reason it will never be truly studied or acknowledged by mainstream medicine. But for some of us, it really works.