- The Washington Times - Sunday, June 24, 2001

There are no dairy products or store-bought cookies or breads in Pat Jordans Falls Church home. Instead, there is soy milk and home-baked goodies that Ms. Jordan concocts with a mixture of carob, gluten-free flour and sugar substitute made from grapes and rice.

Four years ago, Ms. Jordan read an article that led her to believe that eliminating gluten the protein found in wheat, rye and oat products and casein the protein found in dairy products may be able to help her children.

Both of Ms. Jordan´s children, Daniel, 6, and Andrea, 8, suffer from autistic spectrum disorder, the developmental delay that affects social and language skills.

Using a special diet to help control behavior problems and improve communication seemed odd at the time, she concedes. Now, she is used to reading labels, baking cakes and seeing the changes in her son and daughter.

"It was hard at first," says Ms. Jordan, who works full time for the federal government. "I moved all the offensive foods to a cupboard in the basement and decided to give it a try. At first, I thought they would starve, but they adapted."

The children also progressed. Andrea was calmer, throwing fewer tantrums and able to concentrate better at school, Ms. Jordan says.

One way Ms. Jordan has gauged her daughter´s progress is through her artwork. Before starting the diet, known in the autism community as the "Gluten Free/Casein Free" (GFCF) diet, Andrea´s work was rudimentary. Within months, though, a talent beyond her years emerged, with drawings that showed vivid colors and incredible attention to detail.

"There is no way to prove that the diet had an effect on the art," Ms. Jordan says. "But it seems to me the improvement was too rapid not to be."

Therein lies the source of controversy about the GFCF diet. Thousands of mothers like Ms. Jordan have tried it, seen varying degrees of improvement in their children and have spread the word through support groups and Internet bulletin boards.

Generally, though, the mainstream medical community has not endorsed dietary interventions as a treatment for autism. Many doctors say it has not been widely studied, so they cannot make recommendations based on anecdotal evidence.

"There is no scientific basis for the hypothesis," says Dr. Benny Kerzner, chief of gastroenterology at Children´s National Medical Center in the District. "The burden to prove that the gluten-free, casein-free diet works rests on the proponents. It is certainly manageable to do the diet, but it adds further stress and anticipation to a group of people who don´t need (more stress)."

To the parents of children with autism, though, there is no time to wait for years of research. They want results now.

"When we took Ryan off dairy products, he started talking more and started looking at us," says Maureen Maicke, a Germantown woman whose 11-year-old son has been on the GFCF diet since 1996. "We could almost have a little conversation with him. It was like we discovered there was a kid in there."

The theory at work

Autism is mysterious. There has not been one cause identified, and there is not one treatment that works for all children. Even what was commonly called "autism" a generation ago has been broken down into various subtypes, making it a collection of symptoms rather than a static condition.

The theory behind the GFCF diet is equally mysterious. The basic premise is that some children with autism have a "leaky gut," which means that their intestines have an altered permeability, allowing partially digested casein and gluten proteins to enter the bloodstream, says Dr. Pamela Compart, a developmental pediatrician in Clarksville, Md.

The partially digested products become peptides, amino-acid substances that affect the brain in the same manner that hallucinogenic drugs do. That is why some of the children who are sensitive to products with gluten and casein also crave them. Ryan Maicke, for instance, was drinking more than half a gallon of milk a day before his mother put him on the diet.

"If casein, for instance, is getting into the body only partially digested, it is eventually going to make it to the brain, where it interferes with neurotransmitters," Dr. Compart says. "That means it will keep them from working well or sending their own message."

Paul Shattock, a British pharmacologist, has been studying the effects of gluten and casein in children with autism for nearly two decades. He says the intestinal problems that lead to peptides leaking out and affecting the central nervous system can be caused by infection or immunization. The possibility of a lingering measles infection, for instance, is one theory, since some parents of children with autism report an increase in symptoms after being given a measles vaccination.

"There is no single cause of autism but many subgroups," Mr. Shattock said from his office in Sunderland, England. "We are trying to identify which groups have which symptoms. No one has said the word 'cure´ on our side. Changing the diet won´t cure it. You still need to do intensive intervention. This just might apply the brakes."

There are several symptoms that might clue parents in as to whether a child might be in the group that can benefit from dietary intervention, Dr. Compart says. Those symptoms include chronic loose stools, looking "drugged," dilated pupils and, due to the narcotic effects of the peptides, a very high pain tolerance.

"After implementing the diet, one way I know the child is starting to feel better is they start crying more when hurt," she says. "They are starting to feel pain."

Dr. Kerzner says it would be more scientifically sound to at least test children for a leaky gut before eliminating foods. Intestinal permeability can be easily tested, he says, by measuring the ratios of small and large molecules found in a urine sample.

"To go on presuming without studies is unfair," he says. "We don´t need a subculture that says it is enough to have hypothesis but no scientific proof."

Going gluten-free, casein-free

The idea of throwing out pretzels and bread, ice cream and cheese can be daunting at first, says Vicki Kobliner, a registered dietitian in Stamford, Conn., and a consultant to GFCFdiet.com, a Web site for followers of the diet.

"The scope of doing this diet can put people off," Ms. Kobliner says. "You have to take it step by step, though. You have to look at the goal to have a child who can improve."

The first thing to keep in mind is that the results will be different for each child, she says.

"I caution, don´t expect a cure, expect improvement," Ms. Kobliner says. Also, it may take days, even weeks, for the body to rid itself of gluten and casein. Sticking with it may lead to payoffs down the road, she says.

"I do have some parents who abandoned it and said it wasn´t working for them," Ms. Kobliner says. "Sometimes it doesn´t work for everyone. Sometimes parents aren´t doing it 100 percent. If you are going to work that hard, you should do it the whole way. Even one cracker is going to ruin it if you are going to get clear of these products."

Both Ms. Kobliner and Dr. Compart recommend beginning with eliminating casein products as they usually clear from the body quicker. When parents worry that their child won´t get adequate calcium, Ms. Kobliner advises them to substitute and supplement. She encourages parents to substitute enriched soy and rice milk in place of cow´s milk.

"Neither of those is equivalent to cow´s milk in terms of nutrients," she says. "But you can also get calcium from tofu, figs, sesame seeds and calcium supplements."

Getting children to try gluten-free products can be harder, Ms. Kobliner says.

"You really need to get your arsenal together," she says. "Some kids are so particular, especially children with autism, they may never accept a substitute until the food disappears."

There are a plethora of gluten-free products on the market. Some are mainstream foods, such McDonald´s french fries or the Duncan Hines Classic Vanilla frosting that Ms. Jordan puts on her gluten-free cupcakes. Others are sold at health food markets, specialty stores such as Fresh Fields, and via mail order. There is everything from gluten-free breads to pancake mixes to brownies to breakfast cereal.

"I found it most effective not to substitute foods at first," says Carol Guth, whose grandson, David, has been gluten-free and casein-free for more than three years. Ms. Guth says she noticed dramatic improvement after about five weeks. "Let them forget what certain foods taste like. Give them a week or two, then introduce the different food."

Ms. Guth, of Gaithersburg, heads the Maryland Autism Recovery Coalition (MARC), an advocacy and support group for parents of children with autism. A majority of children in the group are on the GFCF diet. Talk at a recent monthly meeting involved lots of nutritional tips.

Mrs. Maicke, also a MARC member, said it took a while to find the right substitutes for Ryan´s diet. Several breads were "hard as a rock and smelled terrible," she says. She told her older son to eat his regular sandwich in the garage. She had to experiment and perfect how to make gluten-free chicken nuggets that came close to tasting like the ones in fast-food restaurants.

"It is still a work in progress," she says. "It has helped, though."

Like many mothers, Mrs. Maicke also feared her son would starve without his favorite foods.

Ms. Kobliner hears that a lot and tells parents not to worry.

"If something is acting like a drug, you need to take it away," she says. "Think about when a child has the flu. He might not eat for three days, but he is OK. You should watch hydration and fluid intake. You should check with a nutritionist or doctor."

Real changes or false hope?

Perspective is part of the key to using the GFCF diet as a treatment for autism, Dr. Compart says. Perspective is also a tough thing to keep in mind when you are dealing with your childs future.

"Parents of children with autism are a vulnerable population that can be taken advantage of," she says. "It is hard to separate out the diet from the value of occupational therapy, speech therapy and other behavioral treatments. You should never claim that progress is all due to one thing."

Parents should look at the GFCF diet as one component of a multilevel treatment for the disorder.

"We want to do things that make the brain function optimally so you can best utilize the other therapies," Dr. Compart says.

Indeed, Stanley I. Greenspan, a Washington-area psychiatrist and co-author of the book, "The Child With Special Needs," says a GFCF diet alone won´t do much good if other therapies are not involved. A child with developmental delays first needs to have an active home therapy that works on problem-solving and motor skills, as well as speech therapy and occupational therapy at least two to three times a week. They also should be in an appropriate educational program, either a special education class or a mainstream class with an aide.

When all those are in place, it is all right to explore the biomedical side, Dr. Kerzner says.

"You have to tailor your approach to what is right for your child," he says. "You need to be cautious to not do anything to undermine the rest of the treatment. Since there have not been clinical trials on the nutrition part, you need to work with people who can help you decide what is reasonable for your child."

Most important, beware of anyone who uses the word "cure." While some parents have seen dramatic changes in their children to the point of saying they are recovered that is not the case for all children.

Karyn Seroussi, a Rochester, N.Y., woman, took her son, then 2, off dairy products. Within a few months, he was talking and making eye contact. She eliminated gluten, and by age 3 "all his doctors agreed that his autism had been completely cured. He tested at eight months above his age level in social, language, self-help and motor skills, and he entered a regular preschool with no special-ed support," she says.

Ms. Seroussi has since written a book, "Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother´s Story of Research and Recovery," and co-founded the Autism Network for Dietary Intervention (ANDI), an advocacy group. She says that she can only speak for her own experience and that she knows it won´t be the same for every family.

"My son was just tripping," she says of her son, who also was involved in behavioral therapy. "He was off playing with his fingers. Now he is quirky, but not abnormal."

Ms. Jordan wishes it were that simple in her house. Despite dietary interventions, medications and behavioral therapies, both her children have language delays and are in special education classes.

"The diet has helped," she says. "But it has not solved things. There is no cure. People say to me everyday, why do all this? I really don´t have a choice."

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