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Dietary adherence and the gluten-free diet

Dr. Schär Institute Coeliac disease Gluten intolerance Dietary adherence and the gluten-free diet
This short article looks at the issues surrounding adherence to a gluten-free diet and effect on quality of life in coeliac patients.
The only treatment for coeliac disease is a life-long gluten-free diet. The gluten-free diet has evolved from a relatively restricted diet to one including many naturally and specially manufactured gluten-free foods. Whilst the importance of strict adherence to the diet must not be overlooked, it must also be recognised that eating encompasses more than just meeting our physiologic need for nutrients. It is interwoven into the fabric of our lives, culture, social, and emotional needs. The quality of life studies in this area recognise the difficulty of dietary adherence at times, especially in certain social situations. The reasons for non adherence may be as multifaceted as the consequences.

INFO

The “banana diet” was thought to be the only treatment for children with coeliac disease for many years. Actually Dr Samuel Gee was the one who promoted its use back in the 1880's. The children were fed bananas, rice and cream. Because the diet excluded gluten – the children got better. Dr Fasano and Dr Guandalini often refer to the “banana diet” as part of the history of coeliac disease.

The gluten-free diet and quality of life

Several studies have described the inter-relationship between the rigid nature of the gluten-free diet, dietary adherence 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. [7] This fear and anxiety is often associated with socialising with friends, feelings of being different, fear of cross-contamination. [2,6,9] In the studies by Lee, et al [3,1] the areas of eating out, travel, social interaction, and work are most negatively affected, similar to the European studies. However, in contrast to the European studies there was no significant difference between genders. [10]

A similar negative impact on the social aspect of quality of life was reported by Cranney et al. [3] 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. [3] The emotional and social burden of the diet was reported as the reason for avoidance of social activities in another study [2] highlighting the potentially negative effect of the diet on an individual’s life.

Adherence issues

Multiple studies have reported on dietary adherence in coeliac 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. [16] The South Asian patients were less likely to attend dietetic clinics, join a coeliac support group, and be satisfied with information provided by doctors and dietitians. [16]

Only 45.5 % of African-American patients with biopsy-proven coeliac disease reported strict adherence to the gluten-free diet in a recent study in the United States. [17] Studies have also shown age to be associated with dietary adherence. [2] In the Barratt study of coeliac patients in the UK, only 4 % of those under age 35 reported full adherence and 12 % of the under 35 group reported partial adherence [2] compared to those over 36 years of age in the same study population. The reasons for non adherence were difficulty following the diet while eating out, socialising and personal relationships. Marriage or gender were not determining factors in adherence. [2]

In a study of 123 adolescents with coeliac disease 65 % reported adhering to a strict gluten-free diet, 23.6 % reported following a wheat based (non gluten-free diet) despite a prescribed gluten-free diet being recommend and 11.4 % reported occasional in-take of wheat-based foods. [11] The adolescents reported they were fully aware of their indiscretions and that they abandoned the diet to avoid difficulties in social situations. [11] 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 respectively. The elevated antibody levels correlate with villous changes on the subjects' intestinal biopsies. [11]

INFO Definition of adherence

There are a number of different terms that are used to describe how patients ‘follow’ a gluten-free diet.
  • Compliance: the extent to which a person’s behaviour coincides with medical advice. [1]
  • Adherence: implies a more active and collaborative involvement with the patient, working together with the clinician in planning and implementing treatment. [2]
  • Concordance: in agreement with/in harmony with.
  • Conformance: following generally accepted norms.
Adherence and concordance are the terms increasingly being used to describe how a patient and healthcare professional approach the task of following a gluten-free diet. It implies the decision-making and responsibility for treatment is shared between the healthcare professional and individual rather than the majority of responsibility falling to the healthcare professional. One associated problem with this shift in responsibility for an individual’s health is that there is inequality of access to healthcare. This is affected by social and cultural factors and may mean some individuals receive a different level of treatment and care to that of other individuals with the same condition. Consequently, those more proactive individuals may receive an increased level of care. Research has shown that individuals are more likely to benefit from intervention when they understand and accept the diagnosis, agree with the proposed treatment and have any of their concerns addressed by the relevant healthcare professional.
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”. [18] Although this adherence rate may be viewed as positive amongst other diet regimes the consequence of non-adherence for the individual with coeliac disease are serious. There is an increased risk of infertility, peripheral neuropathies, bone loss, lymphomas, and cancers of the small bowel and oesophagus. [19]

Similar findings were reported in a survey of adolescents. [6] The self-reported adherence ratings were then compared to the adolescent’s antibody level and intestinal biopsy reports. The reported non-adherent 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. [6] Ciacci’s conclusion was that even those who report being on a strict gluten-free diet may not actually be.

In a subsequent study it was found that the degree of perceived dietary adherence was in sharp contrast to actual adherence. [1] When a sample of 50 individuals with coeliac disease were questioned, as to how well they adhered to a gluten-free diet, both males and females responded with a high degree of adherence (98 %). However when further questioned 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 males. Eighty eight percent of females reported dietary indiscretion at social activities and at restaurants, and 67 % with friends. [1]

Conclusion

These studies highlight the need for further research into the area of dietary adherence and the gluten-free diet. As many of the non-adherence issues revolve around the social aspect in quality of life studies, investigating ways to reduce the feelings of isolation and enhance the feelings of inclusion, acceptance, and normality of the dietary restriction are warranted.

Practice Tips

As strict adherence to the gluten-free diet is the cornerstone of treatment for individuals with coeliac disease it is important to provide practical and useful suggestions and advice for their everyday lives. Here are a few suggestions based on the latest research.
  • Provide the patient with the name and contact number of the local coeliac support group. Face-to-face support is associated with higher adherence, a feeling of increased empowerment, and a reduced feeling of isolation.
  • Provide educational materials to meet the patient’s immediate needs. The materials may need to be broken down into basic information (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 patient’s adjustment to the gluten-free diet and lifestyle.
  • Encourage a family member 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 patients who appear to be struggling with the diet and/or adherence to it.
Author
ANNE ROLAND LEE, EDD, RD, LD
Director of Nutritional Services Schär USA. Previously she was the nutritionist at the Coeliac Disease Center at Columbia University where she was involved in patient care, and research.
References
  1. Lee, A.R., Diamond, B., Ng, D., Ciaccio, E., Green, PHR. (2012). Quality of life of individuals with ce-liac disease; Survey results from the United States. Journal of Human Nutrition and Dietetics. 25, 233-238.
  2. Barratt, S.M., Leeds, J.S., Sanders, D.S. (2011). Quality of life in coeliac disease is determined by perceived degree of difficulty adhering to a gluten free diet, not the level of dietary adherence ulti-mately achieved. J Gastrointestin Liver Dis, 20;(3): 241-245.
  3. Cranney, A., Zarkadas, M., Graham, I.D., Butzner, J.D., Rashid, M., Warren, R., Molly, M., Case, S., Burrows, V., Switzer, C. (2007). The Canadian Ce-liac Health Survey. Dig Dis Sci. 52: 1087-1095.
  4. Hallert, C., Granno, C., Hulten, S., Midhagen, G., Strom, M., Svensson, H. et al. (2002). Living with celiac disease: controlled study of the burden of illness. Scan J Gasteonterol, 37, 39-42.
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  6. Ciacci, C., D’Agate, C., Franzese, C., Errichiello, S., Gasperi, V., Pardi, A., Quagliata, D., Visentini, S., Greco, L.. (2003). Self-rated quality of life in celiac disease. Digestive Disease Science, 48(11), 2216-2220.
  7. Gray, A.M. & Papanicolas, I.N. (2010). Impact of symptoms on quality of life before and after diagnosis of celiac disease: results from a UK population sur-vey. BMC Health Services Research 10; (105).
  8. Hauser, W., Janke, K.-H., Klump, B., Gregor, M., Hinz, A. (2012). Anxiety and depression in adult pa-tients with celiac disease on a gluten free diet. World Journal of Gastroenterology, 16 (22); 2780-2787.
  9. Sverker A, Hensing G, Hallert C (2005). Controlled by food-lived experiences of celiac disease. J Hu-man Nutrition and dietetics; 18;171-80.
  10. Lee, A.R., & Newman, J. (2003). Celiac diet: Impacts on quality of life. J Am Diet Assoc. 2003;103:1533-5.
  11. Mayer, M., Greco, L., Troncone, R., Auricchio, S., & Marsh, M.N. (1991). Compliance of adolescents with coeliac disease with a gluten-free diet. Gut, 32, 881-885.
  12. Ciacci, C., Iavarone, A., Siniscalchi, M., Romano, R., & De Rosa, A. (2002). Psychological dimen-sions of celiac disease: toward an integrated ap-proach. Digestive Diseases and Sciences, 47(9), 2082-2087.
  13. Fabiani, E., Catassi, C., Villari, A., Gismondi, P., Pierdomenico, R., Ratsch, I.M. et al. (1996). Di-etary compliance in screening-detected coeliac disease adolescents. Acta Paediatr Suppl, 412, 65-67.
  14. Hauser, W., Gold, J., Stein, J., Caspary, W.F., Stall-mach, A. (2006). Health-related quality of life in adult celiac disease in Germany: results of a na-tional survey. European Journal of Gastroenterology and Hepataology; 18(7); 747-754.
  15. Casellas, F., Rodrigo, L., Vivancos, J.L., Riestra, S., Pantiga, C., Baudet, J.S. Junquera, F., Divi, V.P., Abadia, C., Papo, M., Gelabert, J., Malagela-da, J.R. (2008). Factors that impact health related quality of life in adults with celiac disease: A mul-ticentered study. World J Gastroenterology; 14(1); 46-52.
  16. Butterworth JR, Iqbal TH, Cooper BT. (2005). Coeliac disease in South Asians resident in Brit-ain: comparison with white Caucasian coeliac patients. Eur J Gastroenterol Hepatol. 2005 May; 17(5):541-5.
  17. Brar P 1, Lee AR, Lewis SK, Bhagat G, Green PH. 2006). Celiac disease in African-Americans. Dig Dis Sci. 2006 May; 51(5):1012-5. Epub 2006 Apr 27.
  18. Green, P.H.R., Stravropoulos, S., Pangagi, S., Goldstein, S., McMahon, D.J., Absan, H., Neu-gut, A.I. (2001). Characteristics of adult celiac disease in the USA: Results of a national survey. The American Journal of Gastroenterology, 96, 126-131.
  19. Green, P.H., & Jabri, B. (2003). Coeliac disease. Lancet, 362, 383-391.
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