A gluten-free camp allows children with celiac disease (CD) to enjoy a camp experience without concern and preoccupation with foods they eat or the stigma of their underlying disease. The objective of this study was to evaluate the impact of gluten-free camp on quality-of-life indicators for children and adolescents with CD.
Children aged 7 to 17 years with CD were administered a 14-question survey at the beginning and the end of a 7-day gluten-free camp. Surveys used a Likert scale to examine general well-being, emotional outlook, and self-perception for the week before each survey. Differences between the time points were compared. Data were analyzed by paired t test.
Of the 104 campers who attended camp, 77 (21 male) completed the survey at both time points. Most (70%) had been on a gluten-free diet (GFD) for <4 years. All seemed to benefit from camp, no longer feeling different from other kids or feeling frustrated with a restricted diet. A more beneficial impact was found for campers who were on a GFD for <4 years. Overall, campers reported an improvement in 11 of 14 questions, statistically significant (P < .05) for 8 of those 11 questions. Improvement was observed in each of the 3 categories of questions: well-being, self-perception, and emotional outlook.
Children who had CD and attended a week-long gluten-free camp demonstrated improvement in well-being, self-perception, and emotional outlook. The positive effects of camp were more apparent among campers who had been on a GFD for <4 years compared with those who had been on a GFD for ≥4 years, suggesting an adaptation to CD with time. A gluten-free camp that provides an environment of unrestricted foods can at least temporarily alleviate stress and anxiety around food and social interactions. Durability of these observations on return to daily life requires additional study.
The article “Impact of Gluten-free Camp on Quality of Life of Children and Adolescents with Celiac Disease” by Simon Bongiovanni, Garnett, Wojcicki, and Heyman (March 2010, Vol. 125, pp. 525-529) was of great interest to me, both on a personal and professional level. I was recently diagnosed with Celiac Disease and am personally familiar with the challenging dietary restrictions associated with maintaining a gluten-free diet. I also work with children who have different food allergies and understand the many challenges these children face.
Children want to “fit in” and they want to feel accepted by their peers; not labeled “different”. Social relationships often happen around food; making children with Celiac disease or other food allergy feel uncomfortable, different, or that they are a “burden” due to their unique dietary needs.2 The idea of a gluten-free camp is fascinating to me; it is a place where these kids can feel accepted, feel good about themselves, and feel as though they “fit in” or belong.
Evidence from several studies with individuals who have Celiac disease suggests that their quality of life is increased when they follow and maintain a gluten-free diet. The results of this study suggest that children who have been on a GFD for a short time (less than four years) will demonstrate a greater increase in their quality of life compared to children who have been on a GFD four plus years after attending a week long GF camp.1 Simon Bongiovanni et al. (2010) suggest that GF camp temporarily relieves stress/anxiety about food and the social interactions that occur around food.1 Another study, “Food That Makes You Different: The Stigma Experienced by Adolescents with Celiac Disease” found similar results. There is a stigma of being different by having celiac disease due to the differences in appearance of the GF meals as well as the assumed difference in taste. “Feelings associated with social deviance and the discomfort of visibility were described as being more pronounced at primary school age but still made adolescents feel awkward.”2(p979) Further stigma is associated with a GFD because they don’t want to be singled out, feeling that they are “being a burden”, or have others feel sorry for them. The evidence suggests that children adapt to their new life style and are able to maintain a healthy life. I believe that children need a positive environment, where they can feel good about themselves (increasing their self-esteem), will enhance their quality of life.
Additional information/research is needed to evaluate the long-term effects after children attend a GF camp. “Currently, the only treatment for CD is a strict gluten-free (GF) diet for life.”3 (p42) Many doctors and health care professionals are not well informed about CD (i.e. symptoms, diagnosing, and treatment); therefore further education of CD should be a requirement in the education of doctors and dietitians.3 For example, the general population often has the opinion that gluten ingested accidentally in small amounts will not cause harm and restaurant staff typically are not familiar with GFD in relation to their menu. Further research needs to be conducted to gain a better understanding of the impact of a GFD on children who have Celiac disease and their quality of life, which will help provide better treatment, increased quality of GF products, and increase the awareness of celiac disease and the dietary restrictions associated with it. To further expand the study, “Impact of Gluten-free Camp on Quality of Life of Children and Adolescents with Celiac Disease,” a larger population sample should be used to gain more data. Control groups should be added, which is necessary for increased significance of the data and to generalize the effects of a GFD on their quality of life. Similar studies could be conducted with adults who have been diagnosed later in life for further comparison.
The future of healthcare with respect to celiac disease should include the following: (1) increase the awareness to the general public of the restrictions and dietary requirements of a gluten-free diet, (2) detect and diagnose the disease as early as possible, and (3) provide increased education for healthcare providers (e.g. doctors and dietitians) to assist their clients more effectively with current, up-to-date knowledge of the disease as well as available gluten-free foods and dietary restrictions.3
References
1. Simon Bongiovanni TR, Clark AL, Garnett EA, Wojcocki, JM, & Heyman, MB. Impact of gluten-free camp on quality of life of children and adolescents with Celiac disease. Pediatrics. 2010; 125: 525-529. Available at: http://www.pediatrics.org Accessed March 7, 2010.
2. Olson C, Lyon P, Hornell A, Ivarsson A, Sydner, Y. Food that makes you different: The stigma experienced by adolescents with celiac disease. Qualitative Health Research. 2009; 19 (7): 976-984. Available at: http://www.sagepublications.com Accessed March 10, 2010.
3. Zarkadas M, Crannery A, Case A, Molloy M, Switzer C, et al. The impact of a gluten-free diet on adults with Celiac disease: Results of a national survey. Journal of Human Nutrition and Dietetics. 2006; 19: 41- 49. http://www.wiley.com/bw/journal.asp?ref=0952-3871 Accessed March 10, 2010.
Conflict of Interest:
None declared