The psychological research on adults regarding this question leaves little open to debate. The symbolism of “breaking bread” together–sharing in a common meal–crosses all cultural and religious boundaries, and studies have shown that adults with celiac disease struggle daily with their exclusion from, or isolation in, such rituals.
“There's a lot of anger and frustration about the rigidity of the diet, as well as the fact that it is chronic,” said Sharon Jedel, Psy.D., a clinical psychologist at Rush University's adult celiac disease program in Chicago. “A child doesn't necessarily have the developmental capacities to cope the way an adult might.”
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 Communiqué 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.
An 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, noted the British authors. “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).
In his analysis of almost 7,000 adolescents, 665 (9.5%) had a variety of chronic conditions including diabetes, asthma, allergy, scoliosis, epilepsy, arthritis, kidney disease, and ocular conditions. 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).
While 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.
While such options are becoming more widely offered, Dr. Edwards George said that 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. “We hear a lot of stories about adolescents and young adults going away to college and then not being in that protective bubble anymore and having a really difficult time.”
Her research in the field of adult celiac disease is uncovering personality traits and coping mechanisms associated with better adjustment to and adherence to the diet–information she believes can be used to provide targeted guidance to children. “There are lots of strategies that can come from the psychological world that really can help,” she said. “They need skills to advocate for themselves, and we can build in supports to help them be more organized and more conscientious. It's not changing their personality but it's helping them change the environment around them to make them more likely to adhere.”
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.