In children, the symptoms are many and varied: chronic diarrhea, constipation, stomach pain, abdominal bloating, fatigue, growth problems and failure to thrive. Undiagnosed adults might have a completely different set of symptoms including iron-deficiency anemia, infertility or osteoporosis. Or the disease might be asymptomatic, but still dangerously harmful.
Those varying symptoms, seemingly disparate, can all point to one condition: celiac disease, which affects 1 in 133 people. Even more surprising, the chronic disease can be managed just by making changes in the food one eats, with a strict gluten-free diet for life.
Even though it is a reaction to food, celiac disease is not a type of food allergy. Rather, it is an inherited autoimmune disorder in which the body attacks itself. When a person with celiac disease ingests gluten—a protein in wheat, rye and barley—the body attacks the small intestine, damaging the villi, which are fingerlike projections that absorb nutrients and send them into the bloodstream.
When the villi are damaged, nutrients aren’t absorbed, resulting in a host of serious ailments, says Lara Field, MS, RD, CSP, LDN, a pediatric nutritionist with The University of Chicago (U of C) Comer Children’s Hospital. “If untreated, celiac disease may affect growth potential, bone development and general vitamin absorption,” Field says.
Embarking on a strict, lifelong gluten-free diet means avoiding all traces of wheat, rye and barley. Even as little as 1/8 of a teaspoon of flour can cause symptoms and damage the intestine.
For children, that means cake and pizza—typical party fare—are off limits at birthday parties. So are foods like mac and cheese, pretzels and even licorice. Navigating day-care and schools becomes an exercise in avoiding forbidden food and cross-contaminated surfaces.
Luckily, since celiac disease has been getting more publicity, once-rare gluten-free foods have been exploding into grocery stores with gluten-free cereal, crackers, cookies and even cupcakes.
Onset of celiac disease can occur at any age. To diagnose celiac disease, physicians first take a blood test to measure levels of certain antibodies, including antitissue transglutaminase (tTG), antiendomysium (EMA) and antideamidated gliadin peptides (DGP). If blood tests are positive, they follow up with an endoscopic biopsy of the small intestine to look for damage to the villi.
Antibody tests, however, are only accurate when a patient is on a gluten-containing diet, so patients who suspect celiac disease are advised not to embark on a gluten-free diet before being properly tested.
“Celiac disease used to be a very serious, occasionally even fatal, condition in children. Thankfully, we now have very good tools that test for and diagnose the disease, so that we can catch it early and quickly, reversing its damaging effects,” says Dr. Stefano Guandalini, chief of pediatric gastroenterology, hepatology and nutrition at Comer and founder and medical director of the U of C Celiac Disease Center.
Researchers there are investigating alternative treatments and looking for a cure for celiac disease, Guandalini says. With the new groundbreaking research, he adds, hope is on the horizon.
Published in Chicago Health Summer/Fall 2012