Tina Szenasi's quest to cure her two autistic sons began with soy milk.
Ms. Szenasi switched to the milk substitute after reading testimonials from other parents who said their autistic children's symptoms had improved - even disappeared - when dairy and wheat were eliminated from their diet.
Her doctor dismissed it as farfetched. But the mother of three from Barrie, Ont., felt she had no choice but to try the gluten-free, casein-free (GFCF) diet for her boys, whose neurological disorder made them easily distressed and socially isolated. Introducing the diet "gave me a sense of hope," she says.
She quickly transformed her kitchen into a culinary laboratory. Her butterless cookies crumbled. Cakes made using rice flour were a disaster. Grocery bills topped $500 each week as she ordered gluten-free bread and potato-based milk substitutes that weren't available in her small city.
But her sons improved within weeks, she says. Now, Adam, 11, often hugs his parents and has fewer tantrums. Alex, an eight-year-old soccer and video-game enthusiast, behaves like most other kids. "He's almost fully recovered, I think because of the dietary intervention," Ms. Szenasi says.
More Canadian parents are adopting the controversial diet for their autistic children as support spreads through a fringe group of health professionals, commercial websites and chat forums. Supporters say gluten and casein are not well digested by autistic kids, who often exhibit digestive problems and food allergies.
The protein compounds, they say, wreak havoc with the children's neurological development. To eliminate those triggers, parents spend thousands of extra dollars on special foods, vitamins and enzyme supplements as well as laboratory testing in the United States.
But most mainstream scientists remain skeptical of the gut-brain connection in autism. They say there's no scientific proof that the diet works. Some doctors warn that parents' desperation, paired with the mystery surrounding autism's causes, makes the field ripe - as a top American pediatric gastrointestinal specialist put it - for "charlatanism."
"If there's nothing else that you think is going to help and you're desperate, you'll do anything," said Wendy Roberts, the head of the autism research unit at the Hospital for Sick Children in Toronto.
The GFCF diet eliminates two major food groups from an autistic child's diet: dairy products, which have casein, and grains such as wheat, barley and rye, which contain gluten. Children on the diet often eat a lot of meat and vegetables, plus wheat and dairy alternatives. Some families add vitamin and enzyme supplements.
Even supporters say it isn't clear how the diet works. One explanation involves the "leaky gut syndrome." Undigested bits of protein, according to this theory, are absorbed through the intestine into the body, affecting the brain and producing symptoms associated with autism.
To date, only one double-blind controlled clinical trial - the gold standard for health research - has tested the diet. Published in March, 2006, in the Journal of Autism and Developmental Disorders, the study found that the group of children on the diet saw no significant improvements compared with the control group. Researchers say more testing is needed because the study was based on a small sample.
"The information that's out there suggests that the diet probably does not have a substantial effect on children's behaviours," says Lonnie Zwaigenbaum, a University of Alberta associate professor and director of autism research at Edmonton's Glenrose Rehabilitation Hospital.
Yet almost every parent Dr. Zwaigenbaum sees has either tried the GFCF diet with their autistic child or heard of it, he says. Parents are leaping ahead before science has definitively proved whether such a treatment works, he says, because there are compelling anecdotal cases of improvement.
Autism's causes have long stumped experts. They know that genes play a major role - but increasingly, with diagnosis of the condition on the rise, researchers are looking to environmental triggers including prenatal hormones, toxins, food allergies and infections. As a result, treatments such as the GFCF diet, which focus on removing such triggers, are gaining ground.
"It's word of mouth," say Paul Cutler, a family doctor based in Niagara Falls, N.Y., who works one day a week in Burlington, Ont. "Thanks to the Internet, they're finding these alternatives."
