Ok so I am a little late to show up to this debate but better late than never. In January the Journal of Pediatrics published 2 articles “Recommendation for Evaluation and Treatment of Common Gastrointestinal Problems in Children with ASDs” & “Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals with ASDs:” I first heard about these papers when my mother told me there was an article in our local paper she wanted me to read. Saying that the gluten & casein free diet does not work. It was a quick and short 5 paragraph article. But it had my blood boiling. Later my autism boards lite up with the debate about this. My family has been super supportive of the diet. Looking for items in their local grocery stores for us. Finding out from friends who have food allergies foods we could possible try for our son. Doing grocery shopping for us. So up to this point we didn’t really have any discussions about it. But this was the first thing my mother saw in a paper about the diet. She is worried that her grandson is going to be malnourished. I can understand that and continue to try to explain to her that I am not harming my son. It’s very hard to explain to someone why and how this diet can work. Especially when I have now been reading articles, books and 100+ emails a day about it for over a year. It’s impossible to relay all the information to someone.
What most of mainstream media has summarized about these articles is false, misleading and harmful to those who don’t get the true story. I have read both articles and I don’t know how the papers and internet have turned this article into a conclusive statement that the gluten and casein free diet does not work. I will include links to the article at the end of this post where you may hopefully read it and come to your own informed conclusions without the bias of me or the media.
But here is my opinion. What I read in the first article is that pediatricians should be on the look out of GI distress in children with Autism. And that all children diagnosed on the autism Spectrum showing signs of GI distress should be tested for celiac’s disease (gluten intolerance). And from what I am reading it does not say that every child with Autism has GI problems. It says they may be more likely to have these problems and that some of the symptoms of GI distress look like Autism markers (self-injury, stimming, constipation, reflux, sleep disturbances). But the study also said more evidence based research was needed. And when they talked about gluten they said that gluten should be reintroduced, when testing for celiac’s, if you are on the gluten-free diet. The second article statements 9, 11 and 12 is where I think the media must have taken and twisted their the information. The writers say that child with Autism on the GFCF diet are just a likely to be malnourished as children not on the diet. They also go on to say not enough research has been done, and in fact only 1 double-blind study on the GFCF diet with 15 children who have Autism. The study was only 12 weeks. (BTW I read this study and with my 101 science knowledge it was seriously flawed). While it takes approximately 2 weeks to get casein out of your system it can take up to a year to clear all gluten from your system. So how would you be able to see results positive or negative in just 12 weeks. This all leads me to believe that the some of the media did not do their reading.
And mostly I am annoyed because these articles were not on the gluten and casein free diet. They were on Gastrointestinal problems. I don’t know how it turned into another opportunity to make us parents who put their children on the diet look like idiots. One of my groups has 14,000+ members. Not all children with Autism. The diet is being used to treat ADHD, ADD, Asthma, Tourette’s, Asperger’s and others ailments. And the majority of the group swearing by the diet. It seems like a hard number to ignore. The diet is not the only answer. It is one thing we are doing for our son. In addition to traditional therapies and seeing more specialists. We have been on a waiting list to see one of the writers of the these articles. It takes more than a year to get in to see him. What should of come out of these articles was to inform parents, with children on the spectrum, to go and see a GI specialist if they suspect GI distress. Push your pediatricians to get these referrals and get a better medical history of your child’s possible symptoms of GI distress. And inform pediatricians to be on the lookout for GI distress that presents as classic Autism symptoms. Here they are though for you to interpret on your own.
\”Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals with ASDs\”
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