About six years ago, Diane and Jim McConnell and their son, James Jr., 11, embarked on a dramatic diet change. They decided to give up foods containing gluten, a protein found in wheat, rye and barley. Sticking to the regimen is no easy feat—gluten is ubiquitous in the American diet, as well as in other nonfood products. Not only is it in almost every kind of commercially baked good and pasta, it's even in medications, lipsticks and Play-Doh.
Why take such a life-changing step? It all started when James Jr. began suffering from chronic constipation. "Sometimes I couldn't play with my friends because I was hurting so bad," he says. His condition baffled doctors, who initially prescribed laxatives. He stopped growing and started losing weight. Finally, doctors diagnosed his condition as celiac disease, an autoimmune disorder of the small intestine that's caused by a reaction to the gluten protein gliadin. The only treatment is a gluten-free diet. Bye-bye, regular pizza and birthday cake.
For James McConnell and the estimated 3 million other Americans with celiac disease, staying away from gluten is a fact of life if they want to prevent long-term intestinal damage and the myriad digestive discomforts that come with the disease. But they're not the only ones avoiding this common protein. Gluten has become the new diet villain. Over the past year, manufacturers in the United States have sold more than $2 billion worth of products with "gluten-free" claims, according to the Nielsen Co. Devotees of the diet include parents of children with attention-deficit hyperactivity disorder (ADHD) and autism, pregnant women, people with allergies and others who say they simply feel better on a gluten-free diet. Some 15 million to 30 million Americans are buying gluten-free products, says registered dietitian Cynthia Kupper, executive director of the Gluten Intolerance Group. "It's a much bigger market than just the celiac population."
High-profile abstainers are adding to the hype. During her 21-day cleanse this summer, Oprah Winfrey avoided gluten. (She followed the advice found in former model Kathy Freston's book "Quantum Wellness," which urges people to eliminate sources of toxins and allergens.) The actress Jenny McCarthy put her autistic son on a diet free of the protein.
But is this trend more about hype than health? "To my knowledge, celiac disease is the only indication for a gluten-free diet," says gastroenterologist Peter Green, director of the Celiac Disease Center at Columbia University and author of "Celiac Disease: A Hidden Epidemic." "All this gluten intolerance, and using the diet to treat autism, ADHD … there's no documented scientific reason for that at all. However, patients without celiac disease often do notice an improvement in a whole spectrum of gastrointestinal or neurological symptoms when they start a gluten-free diet. But it's not defined by any medical diagnosis."
Even without direct scientific support, many families of autistic kids just say no to the protein anyway. The theory is that kids with autism may have a "leaky gut," which allows some toxins from gluten-containing foods to get into their brains and cause problems, says Peter Bell, executive vice president of Autism Speaks. Bell's own son was a "nonresponder" to the diet. But anecdotally, he says, "as many as 20 to 40 percent of kids seem to respond favorably."
Researchers are sympathetic to, if skeptical of, these claims. "If I was a father of a kid with autism, I would do anything," says Dr. Alessio Fasano, a pediatric gastroenterologist at the University of Maryland. "However, these are the facts: celiac disease is present in roughly 1 percent of the general population and maybe can affect twice as much [of the population] among autistic kids." That means perhaps 2 percent of autistic kids have it "at the most," says Fasano. "I don't think there's too much scientific basis to justify [the] broad intervention of a gluten-free diet." By contrast, 10 percent of people with type 1 diabetes and 10 percent of people with Down syndrome have celiac disease, he says.
Getting a celiac diagnosis in the first place can be complicated. Some 97 percent of those who have it are currently undiagnosed, says Columbia's Green. Typically sufferers see specialists and physicians for 11 years before their condition is recognized and treated. Patients are often misdiagnosed with other problems, such as irritable bowel syndrome, he says. They may come in complaining of fatigue, muscle cramps, missed menstrual periods and depression. Kids with undiagnosed celiac disease may have discolored teeth. The average age of diagnosis is in midlife, when people are 40 to 50 years old. "It was once thought to be a disease of childhood. Actually, it can be triggered at any age, by anything from a surgery to a pregnancy to a cold," says the Gluten Intolerance Group's Kupper. "It's like turning on a light switch."
People who think they might have celiac disease can experiment with not eating gluten, but Green says it's better to be tested. After all, why avoid wheat for a lifetime if it's not necessary? The gold standard of diagnosis requires a biopsy of the small intestine. That way doctors can check for the inflammation that occurs when people with celiac disease eat the protein, which their bodies see as a foreign object. But first, patients typically take a blood test that looks for the antibodies the body creates in response to things that irritate the small intestine and damage the villi that are crucial to absorbing nutrients.
When patients lay off gluten, their intestine should heal and symptoms should go away, says Kupper. But following a gluten-free diet is a challenge, especially for kids. In the McConnell family, it requires planning. "At birthday parties, either I eat a giant dinner before it, or my mom buys a gluten-free donut for me to bring," says James Jr. It helps that his mom and dad are also on the diet. The disease often runs in families, so doctors tested James's mom, who had been misdiagnosed as having Crohn's disease but turned out to have celiac disease, and his father, Jim, who is simply gluten intolerant. The family says their efforts have paid off—on their fruit- and veggie-laden regime, James grew more than an inch a few months after he began the diet, and the whole family feels better than ever, says Diane.
"It can be a very healthy diet," says registered dietitian Dee Sandquist. After all, substitute grains such as quinoa are filled with more nutrients than white, refined flour. For some people without celiac disease, a gluten-free diet may make them feel better through the placebo effect, says Sandquist, and of course simply eating fewer cookies and pies can contribute to feeling healthier overall. But unlike foods made with wheat, many gluten-free products are not fortified with B vitamins, so those people who avoid the protein may want to take a multivitamin supplement.
For celiac suffers and gluten-free advocates alike, it's easier these days to find a variety of food options. Restaurants such as Outback and Carino's Italian are now offering items free of the protein. And household-name manufacturers are jumping into the game. Hain-Celestial markets a gluten-free line fortified with iron, folate, calcium and B vitamins. Anheuser-Busch offers a barley-free, sorghum-containing beer called Redbridge. And General Mills now sells gluten-free Rice Chex.
Food makers are eagerly awaiting an FDA rule on "gluten-free" labeling. "Once that goes through, we will see some of the big boys label gluten-free," says the Gluten Intolerance Group's Kupper. FDA spokesman Michael Herndon says coming up with a final rule is an "agency priority."
Alternatives to avoiding wheat include genetically modifying it to remove the genes responsible for the toxic fragments of gluten in it. But historically Americans have been leery of so-called "frankenfoods." Another possibility: a vaccine. An Australian group is working on one, but it is not in clinical trials. Researchers are also working on a pill that people with celiac disease could take before eating to help them digest gluten.
In the meantime, experts say the current gluten-free fad is unlikely to hurt anyone's health. It is, of course, generally good to eat fewer processed baked goods and more vegetables. Still, says Columbia's Green, those without a celiac diagnosis should be cautious about adopting the restrictive diet: "I don't think people should torture their children unnecessarily."