Adherence to the gluten-free diet is not always easy. There are various factors that influence the dietary behavior of individuals with celiac disease.
The only treatment for celiac disease is a gluten-free diet for life. The gluten-free diet has evolved from the historic banana diet, a diet of exclusion, to one including many naturally gluten-free foods as well as many manufactured gluten-free products. However, it must also be recognize that eating encompasses more than just meeting ones physiologic need for nutrients. It is often interwoven into the fabric of our lives, culture, social, and emotional needs. The overall implication of the quality of life studies is the recognition of the difficulty in dietary compliance especially in social situations in a disorder where the only treatment is strict lifelong dietary compliance. The reasons for noncompliance may be as multifaceted as the consequences.
Gluten-free diet and quality of life
Several studies have described the inter-relationship between the rigid nature of the gluten-free diet, dietary compliance and quality of life scores. [1,2,3,4,5,6] Several of the studies describe increased anxiety associated with social occasions. [7,8] In the Gray study 74 % of the study population (n=788) reported anxiety and depression compared to only 50 % before diagnosis.  The fear and anxiety are often associated with socializing with friends, being different, fear of contamination of ones’ food. [2,6,9] In the studies by Lee, et al [3,1] the areas of dining out, travel, social interaction, and work are most negatively affected, similarly to the European studies. However, in contrast to the European studies there was no significant difference between genders. 
Similar negative impact on the social domain of quality of life was reported by Cranney et al.  Cranney found that 81 % of respondents avoided restaurants, 38 % avoided travel, and 91 % brought their own gluten-free food with them when traveling due to the difficulties of maintaining a gluten-free diet.  The emotional and social burden of the diet was reported as the reason for avoidance of social activities in another study  highlighting the pervasive negative effect of the diet on an individual’s life.
Multiple studies have reported on dietary compliance in celiac disease [11,12,13,14,9,4,15,7] In a study comparing British residents of South Asian and Caucasian ethnic background, the South Asians were less compliant to their gluten-free dietary regime.  The South Asian patients were less likely to attend dietetic clinics, join a celiac support group, and be satisfied with information provided by doctors and dietitians. 
Only 45.5 % of African-American patients with biopsy proven celiac disease reported strict adherence to the gluten free diet in a recent study in the United States. 
Studies have also shown age to be associated with dietary compliance.  In the Barratt study of celiac patients in the UK, only 4 % of those under age 35 reported full adherence and 12 % of the under 35 group reported partial adherence  compared to those over 36 years of age in the same study population. The reasons for non compliance were difficulty following the diet while eating out, socializing and personal relationships. Marriage or gender were not determining factors in compliance. 
In a study of 123 adolescents with celiac disease 65 % reported being compliant with a strict gluten-free diet, 23.6 % reported following a wheat based (non gluten-free diet) despite a prescribed gluten-free diet and 11.4 % reported occasional intake of wheat based foods.  The adolescents reported they were fully aware of their indiscretions and that they abandoned the diet to avoid difficulties in social situations.  Those not on a gluten-free diet reported more symptoms than the other two groups. Antibody levels were elevated in all three groups with the highest level 27.5 for those not consuming a gluten-free diet and 18.7 and 14.2 for those on a strict gluten-free and semi strict gluten-free diet respectfully. The elevated antibody levels correlate with villous changes on the subjects' intestinal biopsies. 
Green found that individuals would “intentionally cheat” on the diet in social situations, dining out, parties, and other functions outside of the home. Only 68 % of individuals reported following the diet “all the time” and 30 % reported following the diet “most of the time”.  Although this adherence rate may be viewed as positive amongst other diet regimes the consequence of non-adherence for the individual with celiac disease are grave. There are increased risks of infertility, peripheral neuropathies, bone loss, lymphomas, and cancers of the small bowel and esophagus. 
Similar findings were reported in a survey of adolescents.  The self report compliance ratings were then compared to the adolescent’s antibody level and intestinal biopsy reports. The reported non compliant group had various degrees of intestinal damage and mucosal abnormalities. Interestingly, those who reported strict adherence to the gluten-free diet also showed signs of mucosal abnormalities.  Ciacci’s conclusion was that even those who report being on a strict gluten-free diet may not really be strict.
In a subsequent study it was found that the degree of perceived dietary compliance was in sharp contrast to the actual compliance.  When a sample of 50 individuals with celiac disease were queried in general how compliant they were, both males and females responded with a high degree of compliance (98 %). However when furthered queried as to specifically when or where they would ingest gluten both genders reported high dietary indiscretion. Eighty one percent of males reported intentionally ingesting gluten at social activities, at restaurants (82 %), and with friends (58 %). Females reported higher dietary indiscretion rates than did males. Eighty eight percent of females reported dietary indiscretion at social activities and at restaurants, and 67 % with friends. 
These studies highlight the need for further research into the area of noncompliance on the gluten-free diet. As many of the noncompliance issues involve the area of the social domain of quality of life studies investigating methods to diminish the feelings of isolation and enhance the feelings of inclusion, acceptance, and normalcy of the dietary restriction are warranted.
As compliance to the gluten-free diet is the cornerstone of therapy for individuals with gluten-related disorders it is important to provide concrete solutions for their everyday lives. Here are a few suggestions based on the latest research.
- Provide the client with the name and contact number of the local support group. Face to face support is associated with higher compliance, increased feelings of empowerment, and decreased feelings of isolation.
- Provide educational materials to meet the clients’ immediate needs. The materials may need to be broken down into survival skills (which foods are gluten-free and what to avoid, where to find the foods locally), day to day coping (label reading, recipes etc) and longer term coping strategies (dining out and travel).
- Allow for time during follow up visits, to inquire about the clients adjustment to the gluten-free diet and lifestyle.
- Encourage the clients family to attend follow up visits, this provides an opportunity to discuss lifestyle adjustment.
- Encourage use of support groups, social workers, or family counseling for any clients that appear to be struggling with the diet and/ or compliance.
ANNE ROLAND LEE, EDD, RD, LD
Director of Nutritional Services Schar USA. Previously she was the nutritionist at the Celiac Disease Center at Columbia University where she was involved in patient care, and research.
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