When a parent receives a diagnosis of autism for their child, whether their child has autism, pervasive development disorder, or Asperger Syndrome, the impact of that doctor’s diagnosis can be immediate and striking. For some parents, the diagnosis is a relief; finally, there is a name for the hundreds of abnormal behaviors they’ve noticed in their child, and the diagnosis means that a treatment plan can be put in place. For other parents, massive grief sets in; no one wishes an autism diagnosis on their child, and for these parents the doctor’s words may be overwhelming, treatment plans seem too much, and the world seems to stop.
Parents choose different treatment paths, too, when confronted with a diagnosis of a developmental disorder in their child. Some kids have regressive autism, in which the child’s development was normal to fifteen or eighteen months and then they regress. Other kids are diagnosed with PDD-NOS: pervasive developmental disorder–not otherwise specified, which is a very fancy way of saying that the child has some of the behaviors noted in autism, but not enough to meet the criteria for autism. Still other children are diagnosed with classic or classical autism: non-verbal, rocking, spinning, or stimming, often incontinent, and in a world of their own. Asperger Syndrome diagnoses also come with different behaviors. Children can be academically advanced but severely socially impaired, or have coordination disorders that make them look like “klutzes” or “lazy slouchers.”
All of these diagnoses, as different as they are from each other, are considered autism.
And all, researchers, parents, and doctors are learning, can be helped to some degree with a gluten-free, casein-free diet. While not every child can find improvement, some children with every conceivable diagnosis on the spectrum find improvement–either incremental or monumental–when their parents put them on the gluten-free, casein-free diet.
Gluten includes all wheat, barley, rye, oats, spelt and anything made with these items. Casein means all dairy products, and all items containing whey and casein, proteins involved in dairy products. Many manufactured foods contain gluten and/or casein, so following the diet means giving up an enormous percentage of standard grocery store items. Even a box of rice cereal, seemingly gluten-free, can have barley malt in it. Rice cheese, made from rice milk, can have casein as an ingredient. Parents who choose the GFCF diet need to become careful label readers, careful shoppers, and must monitor everything that goes into their child.
Why go GFCF? Current research points to the fact that autistic children often lack the ability to digest the proteins in gluten and casein. These proteins are only partially digested, and act like opiates, or narcotics, in the child’s body. Over time, the theory goes, these undigested proteins cause neurological damage, thus producing the standard behaviors associated with autism spectrum disorder.
Removing the casein protein and gluten protein, according to researchers, removes the undigested proteins, and stops the neurological damage from occurring. In some instance, it can take six to nine months for all gluten proteins to leave the body, and up to twelve months for casein proteins to leave. The body must be completely free of gluten and casein; there cannot be “cheating,” at least for the first nine to twelve months of the diet.
So what can kids on a GFCF diet eat? All vegetables and all fruits, all meats (except those breaded in gluten or marinated in gluten), rice, millet, flax, corn, soy, and non-gluten grains. Chocolate is fine, as is plain cocoa; many recipe books and gluten-free cake mixes taste as good as mainstream gluten-based cakes and breads. Virtually all processed dinners contain gluten, and parents learn to read and dichipher labels. Some brands of potato chips are fine, while others contain gluten. Seemingly benign ingredients, such as soy sauce or maltodextrin, often contain wheat. Learning to be diligent on GFCF is part of the process.
Parents and doctors report that autistics children on the GFCF diet show marked improvement in eye contact, reduction in “stimming” (hand flapping, rocking, spinning, jumping on people/things), increased verbal skills, increased social fluidity, and decreased anger and tantrums. Approximately 60-65% of all children respond well to the gluten-free, casein-free diet, to varying degrees.
When a child accidentally or intentionally eats gluten or casein in the first few months of the diet, regression can occur. Some parents report that after a year or more on the diet, they can “cheat” once amonth or so, allowing their child to have a piece of birthday cake, for instance, at a friend’s birthday party. Other parents find that their child must follow the GFCF plan rigidly, never eating any “illegal” foods.
Some families are finding that GFCF for six to nine months, followed by digestive enzymes, helps their child’s digestive system to heal, and leads to greater improvements in behaviors. Gluten-free, casein-free diets are one tool for parents, doctors, and researchers working to help children on the spectrum to improve and heal.