Approximately 1% of the U.S. population has celiac disease. But some people have gastrointestinal symptoms without having celiac disease, and some have celiac disease but few symptoms. How can you tell what’s going on with your teenager? Your Teen asked Dr. Jeremiah Levine, chief of pediatric gastroenterology at NYU Langone Medical Center in New York, for answers and advice on celiac treatment, symptoms, and lifestyle changes.
Q: What is celiac disease?
Levine: Celiac disease is an autoimmune disorder caused by eating gluten—a group of proteins found in wheat, barley, and rye. Some patients will have abdominal pain, bloating, diarrhea, gas, and other nonspecific gastric complaints after eating foods that contain gluten. The major concerns arise when these kids are eating but losing weight, feeling bad, and are unable to function. But that is relatively atypical. What we see most commonly are celiac patients who look and feel perfectly healthy and have only mild, nonspecific complaints.
Q: How is a celiac diagnosis made?
Levine: A positive diagnosis requires four criteria: (1) some symptoms; (2) an abnormal blood test; (3) an endoscopy which confirms inflammation in the small intestine; and (4) treatment which alleviates celiac disease symptoms in teenagers, confirmed by a blood test which shows improvement. If there is any question about any part of steps 1-4, then making a diagnosis can become problematic. If there is a positive diagnosis, then we sit down and discuss long-term implications and eliminating gluten from the diet.
Q: For asymptomatic celiac patients, why is eliminating gluten important?
Levine: There are long-term issues and complications associated with celiac disease. It’s much easier to make a diagnosis at age 3 or 4 when parents can make necessary dietary changes and a child simply grows up that way. But with an adolescent who doesn’t have symptoms—or they are minimal—and they aren’t suffering, it can be very challenging. It’s difficult to convince an adolescent who generally feels fine that lifestyle changes have to be made to avoid problems 10 or 20 years down the road, especially when they generally feel fine.
Celiac is not like having an allergy to milk where maybe you can find out how much milk you tolerate before you get hives or stomach cramps. I always say it’s like being pregnant: You are, or you aren’t—you can’t be a little bit pregnant. It’s an all-or-nothing thing. The long-term risks of celiac disease include other autoimmune diseases such as thyroid disease, diabetes, and the elevated risk of intestinal cancer. And you can’t delay a gluten-free diet until you have developed diabetes—you can’t undo diabetes once you have it.
Q: What role do parents have in overseeing a teenager’s diet?
Levine: From ages 11-13, parents are the major enforcers of the gluten-free diet and have almost complete responsibility for eliminating risks. But by age 14 and older, parents increasingly have less control over what their children do. At home, parents can generally control risk and eliminate exposure to gluten and cross-contamination. But outside of the home, at friends’ houses, school, parties, etc., kids have a much harder time sticking to a gluten-free diet.
Parents have limited control over adolescents generally. Getting them to buy into the notion that this is to prevent long-term complications can be challenging. We’re thrilled if they realize that eating things they shouldn’t makes them feel bad, and they want to avoid feeling bad. But this can be a very subtle disease, and teens who want the immediate satisfaction of eating pizza with their friends (when it doesn’t make them feel especially bad) have to remember that there are long-term complications. That’s what we are trying to avoid.
Q: How can parents help a child transition to a gluten-free lifestyle?
Levine: Involving kids in the grocery shopping and menu planning is effective. Parents can face challenges when one child in a family has celiac, but the others don’t. While it’s safest to eliminate gluten completely, then you’re imposing dietary restrictions on someone who doesn’t need it. Most families just try to minimize the cross-contamination and be reasonably on top of what’s going on in the kitchen to keep things separate. At NYU Langone, we have a Pediatric Celiac Disease & Gluten-Related Disorders Program for patients which provides grocery guides—so they know which foods to buy and which to avoid—as well as nutritionist-developed recipes for gluten-free living.
Q: Is having celiac disease the same as being gluten-free?
Levine: That’s actually a real problem right now because being gluten-free is currently in vogue.
Some people have eliminated gluten from their diets just because they feel better, and these people have the luxury of deciding what they can tolerate. They don’t tend to be very strict with their consumption of gluten. But this is not an option for celiac patients and does not translate well into the celiac experience. Celiac patients are going to need support. They’ll need to work closely with a nutritionist and medical providers to make sure they are following a gluten-free diet. Having celiac disease is not at all the same as deciding not to eat gluten.