Just a few years ago, most people had never even heard of gluten. Now, chatter about the protein that's found in wheat and other grains seems to be everywhere. And not just on celebrity Twitter feeds—but on playgrounds, playdates, autism message boards, and mommy blogs as parents are jumping on the gluten-free bandwagon. Some are eliminating gluten to treat celiac disease, an autoimmune disorder that's on the rise in both kids and adults. But others say that switching to a gluten-free diet changed their child's behavior and quality of life for the better—even dramatically improving the symptoms of autism. We'll help you decide if there could be a benefit for your child too.
Gluten gives pizza crust its stretchiness and bread a puffy texture. You'll find it in foods like pasta, cereals, crackers, cookies, and grains such as couscous, bulgur, bran, and spelt. (Most brands of oats are not gluten-free because they can become contaminated during processing and transport.) Gluten is in many less obvious places too, like soy sauce, candy, lunch meat, marinades, vitamins, and lip balm.
We've been eating gluten for centuries, so why is it suddenly an issue for an increasing number of people? The grain our grandparents ate was very different from what we eat today, explains Alessio Fasano, M.D., medical director of the Center for Celiac Research at MassGeneral Hospital for Children, in Boston. Modern grains have a much higher concentration of gluten, thanks to selective breeding to get higher crop yields. Our overuse of antibiotics could also be changing the bacteria in our gut and making it more difficult for us to manage gluten. And the hyper-sanitized environment (think antibacterial everything) may be signaling some people's immune system to see gluten as an enemy.
That kind of immune-system misfire is exactly what happens to people with celiac disease: Gluten sets off a reaction that damages the walls of their intestines, causing symptoms like stomach pain and vomiting. The injured intestines can't digest and absorb nutrients properly, leading to weight loss and serious problems such as anemia and low bone mass.
Ruth Milligan took her son Joseph to the pediatrician when he was 4 because of unexplained vomiting; the doctor also noticed his paleness, distended belly, and slowed growth. After Joseph was diagnosed with celiac disease and stopped eating gluten, his GI problems disappeared and he gained a much-needed pound a month. "He finally became an energetic kid," says the Columbus, Ohio, mom.
Doctors screen for celiac with a blood test to look for antibodies against gluten and then diagnose it with an endoscopy and intestinal biopsy to check for damage. However, some kids who test negative may still have trouble with gluten. A fairly new diagnosis called gluten sensitivity is given to someone who has the physical symptoms of celiac but none of the intestinal injury or antibodies against gluten. It's estimated that as many as 6 percent of the population has it (compared with 1 percent for celiac).
If digestive conditions like colitis are ruled out, a child feels better on a gluten-free diet, and symptoms return after reintroducing gluten, he's considered gluten sensitive.
When Jennifer DeRouen's son Mitchell was 2, he was irritable, frail, waking frequently at night, struggling with language development, and projectile vomiting. Though his celiac test came back negative, a doctor thought that Mitchell might have gluten intolerance. DeRouen, of The Woodlands, Texas, says she removed gluten (and dairy) from his diet, and he became a different kid within a matter of days. The physical problems stopped, and his mood and speech greatly improved. Though she was relieved they found the root of Mitchell's problem, it's frustrating that among teachers and parents his gluten sensitivity isn't taken as seriously as food allergies are. "People think we're just making some kind of wacky health choice," she says.
A gluten-free diet has been embraced by many parents in the autism community, who say eliminating gluten (along with casein, the protein in dairy) improved their child's symptoms significantly -- in some cases even "curing" their child of autism. In fact, the gluten-free, casein- free diet (GFCF) is the number-one alternative treatment parents are trying for autism, with about one out of five families following it, according to a survey by Autism Speaks. "This isn't a diet that we actively promote, but we want to be supportive of families without giving them false hope," says Daniel Coury, M.D., medical director of the Autism Speaks Autism Treatment Network.
There is reason for skepticism: A large controlled study on the effectiveness of the GFCF diet has never been done. However, there have been some recent, hopeful findings. Researchers at Penn State found that a GFCF diet improved symptoms such as tantrums, poor eye contact, impaired speech, and skin rashes for certain groups of kids with autism: those who followed the diet most closely, those who stayed on it for at least 6 months, and those who also had food allergies or digestive issues such as chronic constipation and diarrhea (nearly half of kids with autism have GI problems).
When Denise Fulton's son Grant was diagnosed with autism at age 2, he had chronic diarrhea and rashes that frequently became infected, and he was waking every hour during the night. After removing gluten, dairy, and soy, his GI issues stopped, he began sleeping soundly, and his skin cleared over a few weeks. "His speech improved and his behavioral therapies became much more effective," says Fulton, of Bellingham, Washington.
However, when Alison Singer tried a GFCF diet after her then- 3-year-old daughter Jodie was diagnosed with autism, she stopped the diet after a few months. "I saw no changes, except that I was exhausted from buying and cooking new foods and worrying that Jodie wasn't eating enough," says Singer, from Scarsdale, New York. "I felt like it only added to her difference because she couldn't have the same things as other kids." Singer, who is now the president of the Autism Science Foundation, advises parents to focus instead on the interventions that are proven to help, such as applied behavior analysis and occupational, physical, and speech therapies.
Why the GFCF diet seems to help certain children but not others isn't fully understood. One theory is that some kids with autism are unable to fully break down gluten and casein; they may have a "leaky gut" that allows the partially digested proteins to seep through the intestinal walls and into the bloodstream, where they collide with immune cells. The activated immune cells then slip into the brain and cause inflammation. "Brain inflammation produces a cascade of chemicals that can increase sensory hypersensitivity, sleep disturbances, and problems paying attention," says Martha Herbert, M.D., Ph.D., assistant professor of neurology at Harvard Medical School and coauthor of The Autism Revolution Whole-Body Strategies for Making Life All It Can Be. "There's also evidence that the proteins cross into the brain and act like opiate drugs." This would not only cause behavior changes but also explain why some children with autism eat a "beige diet" consisting of mostly gluten- and casein-containing foods like crackers, grilled-cheese sandwiches, and milk: They are literally addicted to them.
Some parents are also getting rid of gluten with the hope of improving their child's ADHD -- and there does seem to be a connection between gluten intolerance and attention. People with celiac disease often report brain "fogginess" and agitation when they eat gluten. A small Italian study found that 15 percent of kids and adults with ADHD tested positive for celiac. After they ate a gluten-free diet for six months, they had a decrease in distractibility and impulsiveness.
Though her son Oliver doesn't have celiac, New York City mom Katherine Pennington says cutting out gluten three years ago made a difference in his ADHD and eventually enabled him to stop taking meds. "He became calmer, kinder, and easier to connect with," she remembers. When Oliver, now 12, occasionally splurges on a bagel, he immediately becomes restless.
Kids with undiagnosed celiac or gluten sensitivity may simply be showing ADHD-like symptoms. "With primary ADHD, however, diet changes don't make a dramatic difference," says Jay Salpekar, M.D., director of the Neurobehavior Program at Children's National Medical Center, in Washington, D.C. "A healthy diet will improve a child's energy level and feeling of well-being, but it probably won't make him less hyperactive or more attentive if he truly has ADHD."
The diet is a big commitment. Since gluten isn't inherently unhealthy in the way that something like trans fat is, you shouldn't consider nixing it without good reason. "There's no research showing that kids who tolerate gluten just fine should cut it out," says Amy R. DeFelice, M.D., associate professor of clinical pediatrics at Columbia University Medical Center. Fortified bread and cereal are a major source of vitamins and minerals for kids, and gluten-free products aren't always enriched with these nutrients. Gluten-free processed foods also often contain extra fats and sweeteners. Even more incentive to think twice: Gluten-free products are usually more expensive than their counterparts. But if you think that gluten may be a problem for your child -- whether you suspect celiac or want to help alleviate autism or ADHD symptoms -- follow this expert advice.
Have your child tested. Ask your doctor for a referral to a pediatric gastroenterologist for a blood test and, if needed, an intestinal biopsy (it's a 20-minute procedure, but involves anesthesia). Avoid the number-one mistake: having your child try the diet before the tests, which can result in false-negative results. If the tests are positive, your child has celiac disease. But kids who have gluten sensitivity -- and possibly autism or ADHD -- may test negative but still do better without gluten.
Seek professional help. Work with an experienced practitioner, such as a registered dietitian, who can help you map out meals and snacks. Gluten is found in so many foods -- and many kids with autism are already very picky eaters -- so eliminating it can leave gaping holes in your child's diet. Find out whether he needs vitamin or mineral supplements.
Plan ahead. Expect to eat at home most of the time and to spend extra time shopping for food and organizing meals, especially when you first begin the diet. "Every Sunday afternoon we make a menu for the week," says Esther Snodgrass, of Baltimore, whose 7-year-old daughter, Laura, has celiac. "This gives me a sense of control that I felt was lost when she first got the diagnosis." If your child has celiac, you'll need to be mindful of cross-contamination with gluten, since even a few crumbs of bread can cause damage to the intestine. That means that you can't share serving spoons, cutting boards, or even toasters.
Do some detective work. If you're going gluten-free for ADHD or autism, it's helpful to pinpoint what improvements you're hoping to see. "Take a day or two to establish a baseline of your child's symptoms," says Dr. Coury. How many words is she saying? How many tantrums does she have in a week? How long can she focus on her schoolwork? Then you can reassess over the course of weeks and months on the diet. If you're not seeing any significant changes, the diet may not be worth your while.
Be patient. Children who have gluten sensitivity will feel better within a few days on a gluten-free diet, says Dr. Fasano. But with celiac, it can take at least 4 to 6 months for the intestines to heal completely. Experts say that you'd need to stick with a gluten-free diet for at least 3 to 6 months for a child with autism or ADHD to see if there will be any improvement.
Focus on quality. Though experts disagree about whether a gluten-free diet is helpful beyond celiac disease, they all believe that a healthy diet full of fresh whole foods is the best way to feed kids. That may be the key lesson from the gluten-free diet, which tends to eliminate a lot of processed foods. Says Dr. Hyman, "When children eat better, they're going to feel better."
The base of any diet -- including a gluten-free one -- should be whole foods such as produce and lean protein. But for convenience, it's nice to have a small stash of packaged goods. "Products finally taste great and are easy to find in stores or online," says Jen Cafferty, a Chicago mom who founded the Gluten & Allergy-Free Expos. We asked gluten-free families for their picks; the products below topped their list.
Originally published in the April 2013 issue of Parents magazine.
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