Exploring the Gluten Free Casein Free Diet

by Kelly Dorfman, MS, LND, Co-founder, Developmental Delay Resources

Many parents of severely developmentally delayed children have become aware of a research study that was done in Norway.

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 test for the presence of these proteins and how to institute this diet have been well outlined in Dr. Lisa Lewis’s Special Diets for Special Kids, Volumes I and II.

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 2 to 3 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 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 pervasive developmental disorders (PDD) 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 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 and seek professional advice from adjunct therapists such as an occupational therapist, an oral motor therapist or a developmental optometrist.