As a former school psychologist, Dr. Edwards George agreed. “Children report feeling different and embarrassed, left out, and angry,” she wrote in a recent article for the National Association of School Psychologists (NASP Communiquè 2006 June;34:8). “It can be heart-breaking for a child to be unable to eat gluten-containing treats at special occasions, such as birthdays or holidays.”
However, both Dr. Edwards George and Dr. Jedel treat psychological issues in adult patients only, and there are very few studies examining the social burden of following a gluten-free diet in the vulnerable adolescent years. “The most important thing we think of with adolescents is the social network,” Dr. Jedel said. “If they are not able to eat what their friends eat, all of the shame, the embarrassment, the frustration associated with these ongoing social situations would I'm sure produce a lot of anger, and depression.”
One Italian study which included 39 adolescent patients pointed to the ages between 12 and 17 years as being the most problematic. “That is the period of life in which the individual tends to oppose the adult world in search of an individual personality,” wrote Dr. M. Cinquetti and colleagues from Verona (Italy) University (Pediatr. Med. Chir. 1999;21:279-83). “In this group, the search for an individual personality is disturbed.”
Even after adolescence, such experiences can have lasting effects. In one study of adult patients, a subset of patients who were diagnosed as children remembered situations from their childhood “with intense emotions, even if the events had occurred many years ago” (J. Hum. Nutr. Dietet. 2005;18:171-80).
In Search of Normalcy
Even in the absence of anger or depression about their condition, adolescents with chronic diseases are more likely to be “risk takers,” and this is another possible explanation for the increased deaths by accident and violence, the British authors noted.
“Adolescents in general don't have to prove they are 'normal', but adolescents with chronic conditions do,” explained Dr. Joan-Carles Suris, head of the research group on adolescent health at the Institute of Social and Preventive Medicine of the University of Lausanne (Switzerland).
One way to accomplish this is to behave the way they think their healthy peers are behaving, even though their assumption that “everyone” is drinking, or smoking, or doing drugs is often erroneous, he said in an interview. In his analysis of almost 7,000 adolescents, 665 (9.5%) had a variety of chronic conditions including diabetes, asthma, scoliosis, epilepsy, arthritis, and kidney disease. Dr. Suris found higher rates of risky sexual activity, history of pregnancy, history of sexually transmitted disease, smoking, drinking, and illegal drug use among those with the chronic conditions, compared with their healthy peers (Eur. J. Public Health 2005;15:484-8).
Although Dr. Suris' study did not include patients with celiac disease, he said any condition involving food restriction presents limitations to an adolescent's social life. “It is hard to go out for pizza with your friends and not be able to eat it,” he said. “It has been said that the best contribution for diabetic patients after insulin was the introduction of sugar-free beverages, because this allowed them to socialize with their peers without being seen as different. Maybe we should try to do that with other food problems, so that cafeterias or restaurants have options for them,” he said.
Such options are becoming more widely offered, but Dr. Edwards George said children with celiac disease also need the tools to cope in a gluten-filled world–lessons they might be taught with the help of more psychological research. “They need skills to advocate for themselves, and we can build in supports to help them be more organized and more conscientious.”
In the meantime, she also believes that vigilance is of utmost importance for physicians. “We need to be more aware of mood factors and more proactive about screening and treatment for depression, anxiety, and suicidal ideation.” Included in this careful follow-up should be targeted screening for eating disorders, she said–a practice soon to be adopted at her center–since her research suggests that these disorders may often be missed in this perhaps more vulnerable population.
“We see a lot of people fearful of eating anything at all” at diagnosis, she said. Patients may have a general fear of long-term consequences, such as cancer or osteoporosis, or may be afraid of short-term consequences, such as becoming violently ill after eating a food containing gluten. Patients also become “hyperfocused on food” as a result of constantly reading labels and asking about ingredients, she said.
Such disturbed eating patterns and hypervigilance, coupled with a common increase in weight after a malnourished patient is diagnosed and treated, can be a cause for concern. In one of her studies “we did find some people who actually ate gluten in order to lose weight,” just as diabetic patients have been known to withhold insulin for the same reason, she said (Eur. J. Gastroenterol. Hepatol. 2007;19:251-5).