
Shortly after Becky Pekar's son Alex was diagnosed with autism spectrum disorder, she met another mom who asked, "So, do you have your son on the diet?"
Uh... diet?
The mom proceeded to regale her with the details: Gluten and casein produce opioids, which cause autistic symptoms, so kids with autism shouldn't eat any gluten or casein products and ...
"I filed her under, 'This is a loony,'" recalls Mrs. Pekar, a registered nurse.
"It was a lesson in 'Don't judge.'"
Why? Because less than a year later, Mrs. Pekar, of Manor, Westmoreland County, put her own son on the diet, and now she leads two autism support groups and educates others about it.
Gluten-free, casein-free, lactose-free and other such diets are relatively new forms of treatments.
In the 1960s, when Deborah Liedke of McCandless was diagnosed with celiac disease (inability to digest gluten products properly, which causes intestinal damage), most people had never heard of it. Now a celiac diagnosis is more common, as are lactose intolerance and food allergy diagnoses -- witness the peanut-butter ban in many schools due to the increasingly common peanut allergy. A gluten-free diet is even used by some acid reflux sufferers, such as Valerie Yocco of Jefferson Hills, as an alternative to medication.
But what is less common -- and less accepted by mainstream medicine -- is the use of gluten-free, casein-free and similar diets to treat disorders that seemingly have little to do with digestion: autism, attention deficit hyperactivity disorder, other developmental and learning disabilities, and even respiratory problems such as asthma. One reason the diets are more controversial for these types of problems is because many of the sufferers are children.
For autism in particular, it has become popular for parents to use a combined gluten-free, casein-free diet even for toddlers. Some parents of autistic children remove corn, soy, sugar, food dyes and artificial additives from their children's diets along with gluten (the protein found in some grain products, including wheat, barley and rye) and casein (the protein found in dairy products).
But why would food affect autism, which is usually considered a neurobiological problem centered in the brain?
A team of researchers at the Autism Center at Children's Hospital of Pittsburgh hopes to contribute to the discussion.
The theory, they say, is that gluten and casein break down into morphine-like products that are absorbed into the bodies of autistic people, who often have inflamed intestines and can't expel these compounds.
But is the diet a cure-all?
Dr. Cynthia Johnson, director of the autism center and the lead researcher, is reserving judgment until she has analyzed all her data from the 3 1/2-year study later this spring. But she suspects that over time, the medical community will conclude that the diet does indeed help a subgroup of children with autism, though not all of them.
Her team has tracked 36 autistic children, including my 3-year-old daughter Beth, studying their skills and behaviors while on a low-sugar diet, GFCF (gluten-free, casein-free) diet or Omega 3 supplements.
My daughter, who was diagnosed with autism a year ago, just completed the hospital's six-month study. Following the diet regimen (that included gluten-free, casein-free for the first three months and then Omega 3s were added during the last three months) wasn't that hard.
The harder part for us, however, has been determining whether the diet was effective for her. We didn't see in Beth any of the dramatic changes referenced by some of the parents of other autistic children included in the study. So I assumed the diet didn't help.
When the study was over, we took her off the diet. Within about four days her behaviors seemed to change -- she became spacey at times and seems to have more frequent tantrums.
Is it because of the diet or the weather (sounds strange but people with autism say barometric pressure changes do affect them), or potty-training? Hard to say. I chose to put her back on the diet just a couple of days ago to see what might happen.
For Dr. Johnson, families often have contacted her about such alternative therapies as the diet. Now she expects to advise patients more thoroughly, though she admits that the small number of families who participated in the study (they'd hoped for 60) will mean she'll be able to track trends but probably won't get hard-and-fast answers.
Putting a child on a GFCF diet is daunting: No chicken nuggets, no macaroni and cheese, no chocolate milk, and forget about traditional desserts.
Early on, a number of families dropped out of the GFCF diet group of the Children's Hospital study; the researchers blame themselves.
"We learned how to be more helpful to families" over the course of the study, Dr. Johnson said, noting things have run more smoothly since they developed more supports, including a parent support network composed of experienced GFCF families.
Linda Amity and Marla Green have served in the support network and swear by the diet, not that they'd call it easy.
Mrs. Green of Lower Burrell had to "bribe" son John, now 9, to eat GFCF foods when he started the diet at age 3. First he took a bite of the diet food, then he got a bite of a chip, then diet food.
For Todd and Leanne McLean of Robinson, starting the diet with their toddler was even harder. Like many kids with autism, Austin, 6, previously ate limited foods, only bread or toast, milk, grilled cheese sandwiches and Lays potato chips.
A program at The Children's Institute in Squirrel Hill helped to build his tolerance for other foods and textures. He learned to touch the undesired food once, then twice, then touch it to his lips, and finally to take a bite, using preferred foods as rewards.
For the Amitys, of Monroeville, the diet is perhaps harder now. Son Nicholas, 10, has been on the diet since preschool and his sister Kaitlin, 6, since babyhood. Now they're old enough to protest and recognize that others eat differently. Mrs. Amity jokes that parents in her situation are "laundry room eaters and closet eaters" -- they hide stashes of chocolate.
These families say they saw quick changes, however, that convinced them the diet was working.
Within a few days of going off milk, Austin McLean wanted to ride an amusement park ride, then got off and said, "Wow, that was fun!"
"Where did he learn to talk?" his mom recalled exclaiming, as she dropped everything she was holding out of pure shock.
Similarly, Mrs. Amity and husband Duane remember their son shifting within a month on the diet from using only a couple of words to speaking in three-word sentences. The first time, Mrs. Amity was stirring a pot on the stove, and Nicholas said, "Mommy is cooking."
"It's very odd to hear your own child's voice speaking to you when you're not used to it," she said.
Nicholas also began to say "ow" and feel pain when he fell. Children with autism often have a high pain threshold.
Within 24 hours off dairy products, John Green Jr.'s eyes became bright and shiny, and this normally silent child began to babble and make noises, his mother said.
The Green family -- it also includes John Sr., and daughter Emily, 6, who does not have autism -- continues John Jr.'s diet because they believe it still helps him. Mrs. Green recalled an episode at Kennywood last summer when they ate French fries -- naturally gluten-free -- that they assume were cross-contaminated by a gluten product sold at the same stand.
Within 10 minutes, John Jr. was running through Kennywood, screaming, and their friends' autistic daughter began to twirl and spin, using typical austistic behaviors.
It helps that others support John Jr.'s diet. Even his friends are vigilant. He won a gumball at a birthday party last year, and the girls at the party took it to his mom and said, "He's not allowed to eat this."
Some families believe it doesn't work for their children. Opinions differ on why: Some people insist these families have failed to remove every crumb of gluten and casein. Others say it truly doesn't work for some kids.
Even families that find initial success on the diet sometimes back off. That's what has happened with the McLeans.
Mrs. McLean says Austin has progressed so much that he now seems like the other kids in his class. So she wanted him to be able to eat like other kids, too, and also buy lunch at school.
The diet also was hard for the family because they travel frequently for ice hockey games for Austin and his brother Ian, 9, who does not have autism. Before, they had to carry along a cooler of Austin's food.
So two weeks before kindergarten, they ditched the diet.
Was it a good decision? Maybe. A few small "pre-diet" behaviors have crept back in, but for now, it seems like the right thing.
Mrs. Pekar believes there's nothing to lose in trying. "Diet can make the biggest impact on a person's health" -- not just for autism, but for general physical health. "It's worth looking at."
For me, if I've learned anything in this first year of dealing with autism, I've learned respect for other parents in the same situations.
No one can give us hard-and-fast answers, so we all have to use our judgment and make the best treatment choices we can for our own children.
