How awareness is enabling better solutions for children living with celiac disease and gluten sensitivity
Living gluten-free isn’t easy for kids with celiac disease, or who are sensitive to gluten. Every school celebration, birthday party and holiday is a potential minefield of gluten-filled treats to navigate. But greater awareness of celiac disease and an abundance of new, gluten-free products are making life easier for kids and their parents.
“For our patients who have celiac disease, it is so much easier to find foods they can eat now,” says pediatric gastroenterologist Ashish DebRoy, MD, assistant professor of pediatrics at The University of Texas Health Science Center at Houston (UTHealth) Medical School. “Kids are going to be kids. They are going to want to eat cupcakes, and now they don’t have to feel left out.”
So what exactly makes this humble protein found in wheat, rye and barley so troublesome? Gluten is in cookies, crackers and cereal—and other foods kids like to eat. It is even in foods you wouldn’t normally suspect, such as marinades, soups and luncheon meat.
Most people are able to handle gluten just fine. But in people with celiac disease—an autoimmune disease, not an allergy—the protein triggers the body’s immune system to mount an attack, causing inflammation in the small intestine. For children, the inflammation causes problems with absorbing nutrition and with growth. Patients are often skinny, have diarrhea and, in the case of infants, fail to thrive. However, not all kids have those classic symptoms, DebRoy says, but may have stomach pain or a skin rash instead. Catching the disease early is important, he adds, because chronic inflammation may lead to more serious health problems in adulthood.
“The problem is not just one cupcake. We worry about the level of inflammation that gluten exposure causes over decades in patients with celiac disease,” DebRoy says, adding that chronic inflammation of the intestine increases the risk of developing intestinal cancer for these patients. “That is why it is important for them to eliminate gluten from their diets for the rest of their lives.”
DebRoy’s patients aren’t alone in their struggle to live gluten-free. An estimated one out of 133 people in the United States is affected by celiac disease, according to the Celiac Disease Foundation. The disease is most common in people of European descent and is common in parts of Africa. However, people with celiac disease aren’t the only ones avoiding gluten. Growing health movements that advocate eating like our hunter-gatherer ancestors (often called Paleo or Primal), discourage followers from eating foods containing gluten, claiming that humans have not evolved to handle its gut-irritating properties.
While not all doctors agree with that line of reasoning, new studies are showing that gluten may be harmful to more people than previously thought. The incidence of celiac disease has grown by 400 percent in the last 50 years, according to a 2009 study in the journal Gastroenterology. And a growing body of research shows that people who may not test positive for celiac disease may still have a form of gluten intolerance.
“Traditionally, if you didn’t have celiac disease, you didn’t have anything,” DebRoy says. “But now, our thinking has evolved so that we believe that there may be something called gluten sensitivity. We think of it now as a spectrum. You may have it to varying degrees.”
Greater awareness about gluten sensitivity and better screening for celiac disease translates into more gluten-free choices for kids. What can they eat? Scanning the shelves of a local grocery finds a wide variety of gluten-free products, including breads, pastas, cereals and cupcakes. You can also buy gluten-free products on the internet, at local bakeries, or make gluten-free treats yourself, using flour made from almonds, soy or teff, a grain similar to quinoa or millet. The Celiac Disease Foundation also publishes a list of resources and gluten-free products, making it easier to live a gluten-free lifestyle (see sidebar for more information on a gluten-free diet).
But don’t launch a gluten-free diet without first testing for celiac disease, DebRoy cautions. Diagnostic testing for celiac disease includes blood tests as well as endoscopy. For the tests to work properly, kids need to be eating a diet containing gluten. Otherwise the test might not come back positive for celiac disease, and the child will need to go back to eating a traditional diet that contains gluten to help make the diagnosis. That’s a hard sell for parents who have taken their children off of gluten and see them thriving and healthy for the first time in a long time, DebRoy says.
“If you have any suspicion that your child has celiac disease, please talk to your pediatric gastroenterologist first,” he adds.