Enzymes offer relief from autism for family

By TONY LEYS
Register Staff Writer
01/30/2003

Johnston, Ia. - Matthew DeFelice remembers the headaches in vivid, fifth-grader terms.

"Pretend my brain is Tokyo," he says. "And then imagine Godzilla coming in and smashing all the buildings."

The monster was autism, and it appears to have been tamed. Matthew's mother believes an unusual treatment deserves part of the credit, and she is spreading the word.

Karen DeFelice thinks tiny leaks in her son's stomach helped cause the trouble in his brain. She believes she suffered similar problems and passed them on to Matthew, 10, and his brother, Jordan, 9. All three found remarkable relief from enzyme supplements that help them digest food.

DeFelice wrote about her experiences in a book that sold out its first, 1,000-copy printing in a few months last year. Despite skepticism from some mainstream doctors and alternative-medicine purists, several thousand more books are headed for bookstores and nutrition shops.

DeFelice is part of a growing movement of frustrated parents who want help for children with brain disorders that physicians admit they don't fully understand.

Her book is based on a theory that digestive problems can poison the brain. Proponents believe that some people have problems breaking down certain foods - including a common grain component called gluten and a dairy protein called casein. That damages the intestines, they say, allowing toxins to escape into the bloodstream and eventually attack the brain.

People who ascribe to the increasingly popular theory often put their children on very restricted diets, which they claim can reduce the symptoms of autism and similar disorders. DeFelice's family had some success with those programs, but hated the bland and expensive food.

"When the enzymes came out, we bought them and they worked," she says. "And we were like, 'Wow, we don't have to be on these diets anymore.' "

DeFelice, who has a master's degree in plant science and writes technical manuals for a living, has more scientific background than the average layperson. She says she was wary at first of the incredible array of alternative therapies touted for autism.

DeFelice's husband, Mike, is a scientist for Pioneer Hi-Bred seed company. He was even more skeptical.

"We know this area is full of charlatans and snake-oil salesmen," he says. "We weren't going to wade into just anything."

The enzymes they buy are made from plant extracts, which are designed to bolster the body's normal digestive functions.

The DeFelices say the theory makes scientific sense. Unlike some alternative-medicine activists, they also are careful to note that they continue to see physicians and use prescription medicines.

"It's not like you take the enzymes and, wham, you're 100 percent better," Karen DeFelice says.

She says for her family, the enzyme supplements completed the improvements offered by mainstream treatment. The boys start slipping back into their old problems when they accidentally skip enzyme doses, which confirms that the capsules make a difference, she says.

The treatment couldn't cure a severely autistic person, she says. "But they help a lot of people."

With the combination of treatments, Matthew stopped banging his head, rocking and acting out in school. Jordan, who had less severe symptoms, also improved. Karen DeFelice says her unbearable headaches abated. She says she has heard from hundreds of other families who have had similar success.

Doctors choose their words carefully when they discuss the theory and treatments.

Some say they're afraid that if they show disdain for alternative treatments, patients would hide their use of supplements that could interfere with prescription medicines.

Dr. Lynn Rankin, a Des Moines neurologist who's treated Karen DeFelice, says she's impressed with the book. She says there might be something to DeFelice's theory that intestinal flaws cause problems with the brain, and that enzymes could be part of the cure.

"I can't dispute the fact that in her family, they seem to have helped," Rankin says.

An autism expert at the University of Michigan is more skeptical. Dr. Luke Tsai says he sees too many self-styled experts touting unproven remedies.

"I appreciate these are people who want to help," he says, "but they forget about all the people they might disappoint."

Tsai, who studied at the University of Iowa, empathizes with frustration over the slow pace of research. He has a grown son with autism who has never spoken.

But he says proof involves more than a few patients improving when given a new treatment. Those patients might have improved on their own, he says, and even if the treatment helped them, it might not help others.

DeFelice acknowledges those points, but says families like hers can't wait for scientists to complete exhaustive studies. She says the issue is complicated by a lack of money to perform research on inexpensive supplements, which wouldn't be wildly profitable even if they're proven.

DeFelice also has heard skepticism from some autism activists who believe in strict diet plans or rival supplements. She filed a libel lawsuit against a California man who she claims questioned her integrity on the Internet. A judge ruled last year that the lawsuit was frivolous, and ordered DeFelice to pay the activist $39,000.

DeFelice says the legal tussle is an unfortunate example of how fractured the world of autism treatment has become. She's determined now to stick to her own efforts, which include selling the book in Canada and Europe. The success has been a surprise.

"Heck," she says, "I was just happy not to be in pain all the time, and have the boys 'typical' and doing OK in school."

 E-mail this story

 Send a letter to the editor

 Subscribe now