In this blog post, Kelly Dorfman, MS, LND, answers frequently asked questions that parents have when exploring the gluten-free casein-free diet for their child.

Mutant Protein

Many parents of severely developmentally delayed children may be aware of a research study that was done in Norway a while back. It found that a high percentage of children with autism had a “mutant” protein in their urine that was created by the consumption of gluten (found in wheat, oats, barley and rye grains) and/or casein (milk protein) contain­ing foods.

This “mutant” protein was the gluten and casein protein bound to a morphine-like substance. The research­ers theorized this was what was causing the children to become spacey and addicted to these foods. When one or both of these protein groups was removed from the diet, many of the children reportedly became more interactive.

The technical details of how to institute this diet can be found here. The purpose of this article is to answer the most commonly asked questions about the gluten­-free casein-free diet.

Who May Benefit From This Diet?

I have found that a child with a severely self-restricted diet containing mostly gluten- and/or milk-based foods is the perfect candidate for this diet.

How Long Do We Have to Stay on the Diet?

The original researchers recommended one year to be certain before re-evaluating, but I recommend a minimum of two to three months. If improvement is noticed, obviously, the diet should be continued indefinitely. The longer you can test out the diet, the better.

How Do We Know If There Is Improvement?

Measuring improvement is difficult. When the diet works, it increases a child’s ability to benefit from other therapies. This leads many parents to believe that the other therapies (speech, occupational therapy, etc.) are finally working. In the best-case scenario, the child appears suddenly to be “outgrow­ing” the delays or simply is more energetic and happy. Often secondary physical issues such as stomachaches or bowel symptoms ease.

What If My Child Stops Eating?

If your child has severely self-restricted his diet to gluten- and/or milk-based foods, he may go on a hunger strike for a few days. To minimize problems with the gluten-free casein-free diet, start eliminating milk products first, and then, after a week or so, work on gluten. A vast majority of children begin to eat other foods once the addictive foods are eliminated. Many under­weight children even gain weight.

In rare cases, children continue to avoid eating. In every case of this that I have followed, this failure to eat was due to severe oral motor defensiveness and low muscle tone in the face and mouth. Instituting the diet brought these serious issues to light. Speech and eating generally improved simulta­neously as speech or occupational therapy focused on oral-motor issues.

If My Child Improves on This Diet, What Does That Mean?

Nobody knows why people form “mutant” proteins in response to eating wheat and dairy products. The forma­tion of mutant proteins is just one of many unusual allergy, inflammation or unknown responses that more and more people are having to an increasingly polluted and toxic environment.

One theory is that children with autism who appear normal at birth are actually born with an unknown susceptibility to develop­mental delays related to compromised immune functioning or an inability to efficiently breakdown everyday toxins.

This first theory appears as repeated illness or occasionally as lack of illness. Medications used to treat the sickness further contribute to immune confusion and dysregulation. Because the immune system is compromised, it uses huge amounts of the body’s resources to deal with the emergency, which it views as an immediate threat to survival. This leaves less energy for cognitive functioning and achieving major developmental milestones.

If No Improvement Is Seen, What Do I Do?

Consider staying on the diet longer. You could also explore other dietary interventions such as an elimination diet, the Feingold diet, the low-glutamate diet or a gut-healing diet. You could seek profes­sional advice from adjunct therapists such as an occupa­tional therapist, an oral motor therapist or a developmental optometrist.

About Kelly Dorfman MS LND

As a go-to expert on nutrition issues, Kelly is frequently interviewed and quoted in the media. She has been featured in articles in The Wall Street Journal, Parade, Bethesda magazine, Living Without magazine, and the Huffington Post.

Kelly holds a master’s degree in nutrition/biology and is a licensed nutrition dietitian. She is a co-founder of Developmental Delay Resources, which has merged with Epidemic Answers. You can find out more about Kelly and her practice at kellydorfman.com

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