248 Copyright © 2012 Society of Gastroenterology Nurses and Associates Gastroenterology Nursing Copyright © 2012 Society of Gastroenterology Nurses and Associates. Unauthorized reproduction of this article is prohibited. Adolescents With Celiac Disease A Literature Review of the Impact Developmental Tasks Have on Adherence With a Gluten-Free Diet Jacqueline Arnone, MSN, RN Virginia Fitzsimons, EdD, RNC, FAAN Received April 11, 2011; accepted September 5, 2011. About the authors: Jacqueline Arnone, MSN, RN, is with Kean University, Union, New Jersey. Virginia Fitzsimons, EdD, RNC, FAAN, is with Kean University, Union, New Jersey. The authors declare no conflict of interest. Correspondence to: Jacqueline Arnone, MSN, RN, 4 Fieldstone Ct., Eatontown, NJ 07724 (jackiea412@aol.com). DOI: 10.1097/SGA.0b013e31825f990c ABSTRACT Celiac disease is an autoimmune disease affecting individuals at any time across the developmental lifespan. The only treatment for celiac disease is lifelong adherence to a gluten-free diet to prevent future complications and malig- nancies. The ratio of occurrence between children and adolescents is 1:104. When the phase of adolescence is coa- lesced with having celiac disease, normal developmental tasks become more challenging, therefore impacting adher- ence with the gluten-free diet. An abundance of both qualitative and quantitative studies from the Netherlands, Europe, and Canada focusing on adolescents with celiac disease and adherence to the gluten-free diet was found in the literature. Conversely, in the United States, there was a dearth of literature examining adolescents diagnosed with celiac disease, their adherence to a gluten-free diet, and their lived experience of having celiac disease. The relevance to nursing practice and recommendations for future research are discussed in light of these findings. T he face of celiac disease (CD) has changed. No longer considered a childhood malab- sorption syndrome, this autoimmune disease can affect individuals at any time across the developmental lifespan. The only treatment for CD is lifelong adherence to a gluten-free diet to prevent future complications and malignancies. Incidence rates for the disease have escalated in the United States and affect 1% of the total population. The ratio of occur- rence between children and adolescents is 1:104. The period of adolescence is marked by the vital develop- mental tasks of identity formation versus identity con- fusion, the cultivation of peer relationships, risk taking, revolt against authority, and uncertainty of choice selection. When the phase of adolescence is coalesced with having CD, normal developmental tasks become more challenging, therefore impacting adherence with a gluten-free diet. Background One in every 133 people in the United States has CD (Celiac Disease, 2006). This number accounts for the prevalence of the disease in not-at-risk groups in the United States (Fasano et al., 2003). Subsequently, the ratio of individuals with CD escalates to 1:56 in symptomatic clients, 1:39 of those with second- degree relatives with the disease, and 1:22 for those who have first-degree relatives with the disease (Fasano et al., 2003). For children and adolescents in the United States, the number increases to 1:104 (Rashid et al., 2005). The incidence has been demon- strated to be elevated among those with European ancestry from Italy, Ireland, and the Netherlands, and affects women two times more frequently than men (Harvard Women’s Health Watch, 2006). The geographical incidence accounts for the prevalence of studies originating from the countries delineated pre- viously. The interest in doing a review of the litera- ture on this topic was stimulated by the dramatic rise in CD in the United States. Therefore, EBSCO, SAGEpub, MEDLINE, and CINAHL databases as well as hand searches of the literature were initiated for the years 1990–2010 using the terms “‘celiac disease,” “gluten,” “adolescent,” “compliance,” “gluten-free diet,” and “adolescence” restricted to English.