Teens with celiac disease, or any chronic disease, face extra hurdles transitioning into the adult health care system, but there are very few guidelines for how to make this transition smoother, according to a European consensus report.
Teens with celiac disease, an immune disorder in which people cannot tolerate the gluten protein found in wheat, rye and barley, should gradually assume exclusive responsibility for their own care, learning how to follow a gluten-free diet and the consequences of not following it, the authors write.
"Adolescence is a period of time where young people like to revolt and change things and they may be tempted to leave their gluten free diet, which puts certain restraints on their life," said senior author Dr. Steffen Husby of Hans Christian Andersen Children's Hospital, Odense University Hospital in Denmark.
"The consequences can come years later with iron deficiency anemia or osteoporosis," he said.
"We recommend close communication with the doctor when transitioning to adult care," he said.
Traditionally, celiac disease management includes regular physician visits to collect weight and height measurements, discuss dietary adherence and check celiac disease-specific antibodies in the blood.
But unlike other chronic conditions, celiac disease does not require prescription medication so patients may have less contact with doctors, particularly if they believe they have mastered the gluten free diet, the authors write. Even those who do not follow the correct diet may not have symptoms like anemia or seizures for years. This puts teens at risk for dropping out of the health care system.
Adult gastroenterologists may believe that celiac disease is less serious than gastrointestinal cancer or irritable bowel syndrome, and assume celiac patients will be able to care for themselves, which may not be the case if teen patients were not adequately transferred to adult care, the researchers caution.
Ideally, teens with celiac disease could visit a clinic with pediatric and adult services that handles such transitions, the authors write. They recommend that the transition process also include a "transition document" created by the pediatrician with written information on the patient's diagnosis, follow-up, body composition data, other health conditions and dietary compliance.
The authors also conclude that most teens and young adults do not need routine small intestine biopsies to reconfirm a childhood diagnosis of celiac disease, unless pediatric diagnostic criteria, like a blood test for gluten antibodies, were never fulfilled, according to the recommendations published in the journal Gut.
"We think it most important to stress that celiac disease is a definite disorder," Husby told Reuters Health. "We should make a regular diagnosis of celiac disease before putting kids on a gluten free diet."
Three decades ago celiac disease was almost always diagnosed in childhood, but since then diagnoses among adults have increased, Husby said. Celiac disease is a lifelong chronic condition.
"All youth, whether or not you have a chronic disease, need a better transition," said Dr. Patience White, co-director of Got Transition, the Center for Health Care Transition Improvement at the National Alliance to Advance Adolescent Health in Washington, D.C. "We do it poorly in every country."
Managing conditions like celiac disease or type 1 diabetes does not change much from childhood to adulthood, "but the way you go about getting people to be adherent between age 14 and 25 changes," White, who was not part of the new consensus statement, told Reuters Health.
Young people tend not to register risk for future health consequences, whether the risk is lung cancer as a result of smoking or osteoporosis as a result of eating gluten, she said.
A better motivator would be "boy, if you don't adhere to your diet you're going to look terrible at prom," she said.