GRAND JUNCTION, Colo. (KKCO) -- Ask the parent of a child with autism what they would give for their child to not have to suffer through the disorder, the answer would likely be “Anything.”
Some parents desperate to help their children cope are turning to a controversial diet that some say is depriving. The concept is simple: remove gluten and casein, a complex phospho-protein found in milk, and some of the symptoms of autism disappear.
No milk, no cheese, no bread-- the restrictions of the autism diet are very lengthy. One local woman says the costly and demanding diet has improved her daughter’s behavior, but it’s been a life-altering change, and those who want to try have to be willing to go the distance.
Annette Nakai noticed her daughter Nozomi's behavior was different from her other kids and had her tested for autism when she was three years old.
"She had a blood test done in that same month, and it actually came back that she had celiac disease," said Nakai.
Those who suffer from celiac disease are unable to process gluten. Nakai was told Nozomi would have to change the way she eats for the rest of her life.
So Nakai eliminated gluten-- a protein commonly found in wheat, rye, barley and some grains-- and casein-- a protein in dairy. She said this alleviated her daughter's gastrointestinal issues, but it also improved her behavior.
"We did see, within three months of putting her on the diet, her eye gaze was much better. She would actually look at us for longer, where before I had to force her face to look at me," said Nakai.
Nakai said Nozomi’s speech changed too. Before going on the diet, Nozomi echoed her, repeating the last part of what she heard.
"She started coming up with a little bit more of some spontaneous speech that was noticeably different," said Nakai.
Nozomi sometimes woke every hour at night kicking the walls and screaming before she changed her eating habits.
"[The diet] improved the temper tantrums did not totally go away but they improved in their severity and the length of time that they would go on," said Nakai.
Dr. Patrice Whistler deals with autistic children and said the autism diet lacks scientific evidence, but she said she has seen it work.
"One of the theories is that the intestines might be a little bit leaky to these and allow these proteins to go into the body faster," said Whistler.
According to a study funded by the National Institute of Mental Health, these proteins can act similar to morphine, clouding the mind. They can be addictive, and they are transported from the intestine to the brain through the bloodstream, the study says.
"So they keep eating them and that keeps them spacey, so if you eliminate them completely that opens up the brain," said Whistler.
The doctor says other studies show the removal of the two proteins did nothing, but those results have been criticized.
"Say you can’t just take it away for six weeks or three months. You've got to give the children a long period of time to be off these foods to see if they get better," Whistler said.
Further testing should be done, Whistler admits, but she believes simply eliminating gluten and casein isn’t enough and shouldn’t be seen as a cure for autism.
"The science behind these is questionable, but the hope is unending. Every parent wants something that will make their child better," said Whistler.
Nakai said if you decide to incorporate this diet into your life, be ready for a big change.
"Then it is something the parent has to be willing to go the distance with it,” said Nakai.
Whistler said it’s important to remember that not every autistic person has celiac disease, and every patient will have other unique circumstances to contend with.
She encourages parents who are interested in learning more about the autism diet or any other diet to consult their doctor before making any changes.
The autism diet was developed by two doctors whose research shows a link between improperly digested gluten and casein and autistic behaviors.
The theory has not been widely accepted by the scientific community, but Whistler says many are dedicated to the diet and have seen results.