Eimile Hart, a mother of four from Norman, Okla., remembers the day she decided her family was going gluten and casein free.
She began emptying her cupboards, filling huge trash bags with flours, breads and cookies. Her mother-in-law, who happened to be visiting, thought Hart had lost her mind. “She was sitting there watching me like I was a crazy person,” Hart laughs.
But Hart had a reason behind her rampage. She’d just finished the book “Unraveling the Mystery of Autism and Pervasive Developmental Disorder,” a memoir by Karyn Seroussi, who claimed to have cured her son’s autism in part by removing casein and gluten from his diet. Hart, whose twin boys were diagnosed with autism spectrum disorder (ASD) at age 2, was inspired. In came the trash bags, and out went anything containing gluten or casein.
Six years later, the Hart family remains on the diet, and many of the twins’ symptoms have faded. When they started the diet, the twins were nonverbal. Now they make eye contact, listen well and talk like any other kids. The Harts believe eliminating gluten and casein was key to those changes.
They’re one of a number of families who have tried dietary intervention in an attempt to treat autism, a development disorder whose symptoms range from difficulty communicating to sensory processing issues to gastrointestinal disorders.
“There is a long history of parents reporting that dietary changes have really helped their children. While this falls under the category of ‘anecdotal,’ it is very widespread,” says Lisa Lewis, PhD, who co-founded the Autism Network for Dietary Intervention with Seroussi. Still, scientific studies suggest dietary intervention is no magic pill. A 2010 study by the University of Rochester (N.Y.) concluded that removing gluten and casein from the diets of children with autism did not impact their behavior, sleep or bowel patterns.
So how do you decide if dietary intervention is right for your child? And even more so, what exactly is a gluten- and casein-free diet?
Gluten is a protein composite found in wheat, rye and barley. It’s the substance that gives bread dough its elasticity and baked goods their chewiness. Casein is a protein found in dairy products. Both can cause inflammation in the intestine.
Gluten is present in a wide range of products, including most flour, bread and cookies, prompting Hart’s purging frenzy. It’s also found in pizza crusts, bagels, cereal, pasta, beer, soy sauce and many imitation meats. Casein is present in everything from yogurt to pudding to cheese. Eliminating them from a diet can be difficult under the best of circumstances. And for picky eaters, which most kids with autism are, it can be even harder.
“At first it was extremely hard. All they wanted was milk, bread, chicken nuggets and mac and cheese. We were desperate to find something they would eat,” Hart says. “We spent every day for two weeks going to the store and reading labels.” Most families find emphasizing fresh foods, such as fruits, vegetables and meats, is the easiest way to make the switch. “You can still eat a lot of good foods,” says Angie Even, whose son, Dylan, has been on a gluten- and casein-free diet for four years. “Honestly, my 6-year-old [who is not gluten-free] prefers the gluten-free pretzels.”
In fact, going gluten- and casein-free often improves the nutritional value of a child’s diet, says Vicki Kobliner, MSRD, who advises parents and children on nutritional issues. “Most American children eat a lousy diet, and that is not what we’re striving for, not what we’re trying to replicate,” she says. “What takes the place of dairy and gluten is beans, nuts, fruits and vegetables. That’s far more nutritious than the Goldfish crackers or mac and cheese it’s replacing.”
Some children with autism see marked improvement, particularly with the gastrointestinal disorders commonly associated with autism—chronic constipation, chronic diarrhea and gastroesophageal reflux disease—with dietary intervention. Kelly M. Barnhill, certified clinical nutritionist and director of clinical care at the Johnson Center for Child Health & Development, a nonprofit in Austin, Texas, says the reasons for those changes are likely a combination of factors. Some children may have celiac disease but have never been tested because gastrointestinal problems are a common symptom of autism. She also notes many children with autism have never had normal bowel patterns, and simply removing casein can help firm them up.
MacKenzie Palumbo, whose 4-year-old sons Cash and Hollis have ASD, tried the diet after speaking with pediatricians and specialists. Though the Fall River, Mass., resident says she was told that there wasn’t enough scientific evidence to support dietary changes, she wanted to help her kids without adding to the more than 40 hours of therapy they already receive weekly. Her children have been on the diet a couple months, and she already has seen changes.
“One of my sons [Hollis] has been struggling with sleep for over three years. He’d be up five or six nights a week for hours. We’ve had him scoped to see if anything was wrong, had sleep studies done, you name it,” Palumbo says. “Three days after being on the diet, he started sleeping through the night.”
Still, Barnhill cautions there are no studies that have examined dietary intervention and autism and come up with consistent results. “I think the best research hasn’t been done yet,” she says.
Indeed, dietary intervention doesn’t work for everyone. “Honestly, it has not been the results I would have loved to have,” says Even, who lives in Burleson, Texas. Though her son sleeps better than he did before going on the diet, Dylan remains nonverbal and has not experienced the sort of drastic improvements noted by the Palumbos or Harts. Even says they continue the gluten- and casein-free diet because Dylan seems less hyper. But she’s open to returning to a gluten-containing diet when he gets older.
Barnhill notes that there is currently an extensive study on autism and dietary intervention taking place at Massachusetts General Hospital, led by director of the Center for Celiac Research & Treatment Dr. Alessio Fasano. Barnhill hopes that the study will provide a better understanding of how and why going gluten-free could help children with autism. At the least, Lewis would like to see doctors become more open to recommending dietary intervention. “Most doctors still do nothing more than treat symptoms, often with very powerful and potentially dangerous drugs that were developed for disorders other than autism,” she says. “Why they won’t recommend diet is mystifying.”
Autism, also referred to as autism spectrum disorders or ASD, is a brain development disorder. Those on the spectrum have difficulty with social interactions and communication. They may avoid making eye contact, experience delays in speaking or making hand gestures, and communicate in ways that fail to convey their feelings. They often engage in repetitive behavior, such as opening and shutting doors or hand-flapping. They may also demonstrate intense preoccupations or obsessions. In older children and adults, this can manifest as a strong interest in numbers, dates, patterns or science.
According to Autism Speaks, an advocacy organization, 1 in 88 American children are on the spectrum, about 10 times the number who were diagnosed just 40 years ago. The reason for the increase is unclear; it could be that diagnoses have simply gotten better in that time, or, some argue, it could be environmental factors are upping the number of cases. Autism is more prevalent in boys than girls.
The cause of autism is still not entirely understood, though Autism Speaks says most cases “appear to be caused by a combination of autism risk genes and environmental factors influencing early brain development.”
There may be a correlation between a gluten-free, casein-free diet and improvements in behavior and physiological symptoms of children with autism, according to a recent study. Researchers at Penn State University asked 387 parents or primary caregivers of children on the spectrum some 90 questions about their children’s dietary habits, food allergies, food sensitivities and gastrointestinal issues. They also surveyed them about the children’s adherence to a gluten-free, casein-free diet.
Christine Pennesi, a medical student at Penn State College of Medicine, and Laura Cousino Klein, associate professor of biobehavioral health and human development and family studies, found that parents of kids with ASD reported a higher proportion of GI and allergy issues than the general population. They noted that parents whose children were on a gluten-free, casein-free diet reported more improvements in kids’ behaviors and symptoms than those who were not on such a diet. Improvements included language production, eye contact, engagement, attention span, requesting behavior and social responsiveness.
“There are strong connections between the immune system and the brain, which are mediated through multiple physiological symptoms,” said Klein in a statement. “A majority of the pain receptors in the body are located in the gut, so by adhering to a gluten-free, casein-free diet, you’re reducing inflammation and discomfort that may alter brain processing, making the body more receptive to ASD therapies.”
The study appeared in the journal Nutritional Neuroscience last year.