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Barriers at various levels of human ecosystem for maintaining adherence to gluten free diet in adult patients with celiac disease

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Abstract

Introduction

While lifelong and strict adherence to gluten-free diet (GFD) is essential for the successful treatment of celiac disease (CeD), only 30–50% of patients are able to maintain a good adherence to GFD. We determined factors influencing the adherence to GFD at various ecological levels including intra-personal, inter-personal, organizational, community and system-based levels in adult patients with CeD.

Methods

A questionnaire to assess the adherence was developed and it was administered in the CeD clinic to patients with CeD on GFD for >1 year. Adherence to GFD was assessed in a subset of patients (n = 320) using Celiac Disease Adherence Test (CDAT).

Results

Overall, 978 patients [median age: 29 years; females: 592] with CeD on GFD were recruited. They reported many barriers to adherence to GFD including intra-personal barriers such as lack of knowledge about GFD (19%), inadequate financial resources (27.2%) and lack of self-motivation/confidence (55.3%); inter-personal barriers such as intake of gluten-containing food upon forceful insistence of friends/family (23.4%); organizational barriers such as high cost (70.8%) and non-availability of GF-food products (48.6%); community-based barriers like consumption of gluten-containing food at religious occasions/festivals (11.1%) and social occasions (27.2%); and system-based barriers such as non-referral to dietitian for counseling (21.9%). As per CDAT, 204 (63.7%), 73(22.8%) and 43(13.4%) patients had good, average, and poor adherence to GFD, respectively. On multivariable analysis, occasional consumption of gluten, non-availability of GF-food while dining out and coercing by family and friends for consumption of GC-food were found to have highest odds for poor adherence to GFD.

Conclusions

Non-referral to a dietitian for counseling, irregular follow-up visits, unavailability of flour mill, non-supportive family/friends, high cost and limited availability of GF-food are the most common barriers to adherence to GFD. There is a need to create infrastructure and develop strategies to overcome these diverse barriers at various levels of ecosystem and thereby facilitate better adherence to GFD.

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Data availability

The data generated and analyzed during this study can be found within the published article, or from the corresponding author on reasonable request.

References

  1. Parzanese I, Qehajaj D, Patrinicola F, Aralica M, Chiriva-Internati M, Stifter S, et al. Celiac disease: From pathophysiology to treatment. World J Gastrointest Pathophysiol. 2017;8:27–38.

    Article  PubMed  PubMed Central  Google Scholar 

  2. Ludvigsson JF, Leffler DA, Bai JC, Biagi F, Fasano A, Green PHR, et al. The Oslo definitions for coeliac disease and related terms. Gut. 2013;62:43–52.

    Article  PubMed  Google Scholar 

  3. Poddighe D, Abdukhakimova D. Celiac disease in asia beyond the middle east and indian subcontinent: epidemiological burden and diagnostic barriers. World J Gastroenterol. 2021;27:2251–6.

    Article  PubMed  PubMed Central  Google Scholar 

  4. Silvester JA, Weiten D, Graff LA, Walker JR, Duerksen DR. Living gluten‐free: adherence, knowledge, lifestyle adaptations and feelings towards a gluten‐free diet. J Hum Nutr Dietetics. 2016;29:374–82.

    Article  CAS  Google Scholar 

  5. Tovoli F, Negrini G, Sansone V, Faggiano C, Catenaro T, Bolondi L, et al. Celiac disease diagnosed through screening programs in at-risk adults is not associated with worse adherence to the gluten-free diet and might protect from osteopenia/osteoporosis. Nutrients. 2018;10:1940.

    Article  PubMed  PubMed Central  Google Scholar 

  6. Costa AF, Sugai E, Temprano MdelaP, Niveloni SI, Vázquez H, Moreno ML, et al. Gluten immunogenic peptide excretion detects dietary transgressions in treated celiac disease patients. World J Gastroenterol. 2019;25:1409–20.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  7. Paganizza S, Zanotti R, DʼOdorico A, Scapolo P, Canova C. Is adherence to a gluten-free diet by adult patients with celiac disease influenced by their knowledge of the gluten content of foods? Gastroenterol Nurs J Soc Gastroenterol Nurses Assoc. 2019;42:55–64.

    Article  Google Scholar 

  8. Dana ZY, Lena B, Vered R, Haim S, Efrat B. Factors associated with non adherence to a gluten free diet in adult with celiac disease: A survey assessed by BIAGI score. Clin Res Hepatol Gastroenterol. 2020;44:762–7.

    Article  PubMed  Google Scholar 

  9. Fueyo-Díaz R, Magallón-Botaya R, Gascón-Santos S, Asensio-Martínez Á, Palacios-Navarro G, Sebastián-Domingo JJ. The effect of self-efficacy expectations in the adherence to a gluten free diet in celiac disease. Psychol Health. 2020;35:734–49.

    Article  PubMed  Google Scholar 

  10. Ruiz-Carnicer Á, Garzón-Benavides M, Fombuena B, Segura V, García-Fernández F, Sobrino-Rodríguez S, et al. Negative predictive value of the repeated absence of gluten immunogenic peptides in the urine of treated celiac patients in predicting mucosal healing: new proposals for follow-up in celiac disease. Am J Clin Nutr. 2020;112:1240–51.

    Article  PubMed  Google Scholar 

  11. Zarkadas M, Cranney A, Case S, Molloy M, Switzer C, Graham ID, et al. The impact of a gluten-free diet on adults with coeliac disease: results of a national survey. J Hum Nutr Diet J Br Diet Assoc. 2006;19:41–9.

    Article  CAS  Google Scholar 

  12. Lamontagne P, West GE, Galibois I. Quebecers with celiac disease: analysis of dietary problems. Can J Dietetic Pract Res. 2001;62:175.

    CAS  Google Scholar 

  13. Rajpoot P, Makharia GK. Problems and challenges to adaptation of gluten free diet by Indian patients with celiac disease. Nutrients. 2013;5:4869–79.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Ukkola A, Mäki M, Kurppa K, Collin P, Huhtala H, Kekkonen L, et al. Patients’ experiences and perceptions of living with coeliac disease - implications for optimizing care. J Gastrointest Liver Dis JGLD. 2012;21:17–22.

    Google Scholar 

  15. Dowd AJ, Tamminen KA, Jung ME, Case S, McEwan D, Beauchamp MR. Motives for adherence to a gluten‐free diet: a qualitative investigation involving adults with coeliac disease. J Hum Nutr Dietetics. 2014;27:542–9.

    Article  CAS  Google Scholar 

  16. Muhammad H, Reeves S, Jeanes YM. Identifying and improving adherence to the gluten-free diet in people with coeliac disease. Proc Nutr Soc. 2019;78:418–25.

    Article  CAS  PubMed  Google Scholar 

  17. Garnweidner-Holme L, Sende K, Hellmann M, Henriksen C, Lundin KE, Myhrstad MC, et al. Experiences of managing a gluten-free diet on multiple levels of society: a qualitative study. BMC Nutr. 2020;6:1–7.

    Article  Google Scholar 

  18. Abu‐Janb N, Jaana M. Facilitators and barriers to adherence to gluten‐free diet among adults with celiac disease: a systematic review. J Hum Nutr Dietetics. 2020;33:786–810.

    Article  Google Scholar 

  19. Salihu HM, Wilson RE, King LM, Marty PJ, Whiteman VE. Socio-ecological Model as a Framework for Overcoming Barriers and Challenges in Randomized Control Trials in Minority and Underserved Communities. Int J MCH AIDS. 2015;3:85–95.

    PubMed  PubMed Central  Google Scholar 

  20. Elder JP, Lytle L, Sallis JF, Young DR, Steckler A, Simons-Morton D, et al. A description of the social–ecological framework used in the trial of activity for adolescent girls (TAAG). Health Educ Res. 2007;22:155–65.

    Article  PubMed  Google Scholar 

  21. Singh P, Arora A, Strand TA, Leffler DA, Catassi C, Green PH, et al. Global prevalence of celiac disease: systematic review and meta-analysis. Clin Gastroenterol Hepatol. 2018;16:823–36.

    Article  PubMed  Google Scholar 

  22. Saleem SM. Modified Kuppuswamy socioeconomic scale updated for the year 2020. Indian J Forensic Community Med. 2020;7:1–3.

    Article  Google Scholar 

  23. Leffler DA, Dennis M, Edwards George JB, Jamma S, Magge S, Cook EF, et al. A Simple Validated Gluten-Free Diet Adherence Survey for Adults With Celiac Disease. Clin Gastroenterol Hepatol. 2009;7:530–536.e2.

    Article  PubMed  Google Scholar 

  24. Pourhoseingholi MA, Rostami-Nejad M, Barzegar F, Rostami K, Volta U, Sadeghi A, et al. Economic burden made celiac disease an expensive and challenging condition for Iranian patients. Gastroenterol Hepatol Bed Bench. 2017;10:258–62.

    PubMed  PubMed Central  Google Scholar 

  25. Barratt SM, Leeds JS, Sanders DS. 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 ultimately achieved. J Gastrointestin Liver Dis. 2011;20:241–5.

    PubMed  Google Scholar 

  26. Hall NJ, Rubin GP, Charnock A. Intentional and inadvertent non-adherence in adult coeliac disease. A cross-sectional survey. Appetite. 2013;68:56–62.

    Article  PubMed  Google Scholar 

  27. Ford S, Howard R, Oyebode J. Psychosocial aspects of coeliac disease: A cross‐sectional survey of a UK population. Br J health Psychol. 2012;17:743–57.

    Article  PubMed  Google Scholar 

  28. Dowd AJ, Jung ME. Self-compassion directly and indirectly predicts dietary adherence and quality of life among adults with celiac disease. Appetite. 2017;113:293–300.

    Article  PubMed  Google Scholar 

  29. Kothe EJ, Sainsbury K, Smith L, Mullan BA. Explaining the intention-behaviour gap in gluten-free diet adherence: The moderating roles of habit and perceived behavioural control. J Health Psychol. 2015;20:580–91.

    Article  PubMed  Google Scholar 

  30. Villafuerte-Galvez J, Vanga RR, Dennis M, Hansen J, Leffler DA, Kelly CP, et al. Factors governing long-term adherence to a gluten-free diet in adult patients with coeliac disease. Aliment Pharm Ther. 2015;42:753–60.

    Article  CAS  Google Scholar 

  31. Sainsbury K, Mullan B. Measuring beliefs about gluten free diet adherence in adult coeliac disease using the theory of planned behaviour. Appetite. 2011;56:476–83.

    Article  PubMed  Google Scholar 

  32. Gorgitano MT, Sodano V. Gluten-free products: From dietary necessity to premium price extraction tool. Nutrients. 2019;11:1997.

    Article  PubMed  PubMed Central  Google Scholar 

  33. Lambert K, Ficken C. Cost and affordability of a nutritionally balanced gluten‐free diet: Is following a gluten‐free diet affordable? Nutr Dietetics. 2016;73:36–42.

    Article  Google Scholar 

  34. Missbach B, Schwingshackl L, Billmann A, Mystek A, Hickelsberger M, Bauer G, et al. Gluten-free food database: the nutritional quality and cost of packaged gluten-free foods. Peer J. 2015;3:e1337.

    Article  PubMed  PubMed Central  Google Scholar 

  35. Do Nascimento A, Fiates G, Anjos A, Teixeira E. Availability, cost and nutritional composition of gluten-free products. Br Food J. 2014;116:1842–52.

    Article  Google Scholar 

  36. Pinto-Sanchez MI, Verdu EF, Gordillo MC, Bai JC, Birch S, Moayyedi P, et al. Tax-deductible provisions for gluten-free diet in Canada compared with systems for gluten-free diet coverage available in various countries. Can J Gastroenterol Hepatol. 2015;29:104–10.

    Article  PubMed  PubMed Central  Google Scholar 

  37. Estévez V, Ayala J, Vespa C, Araya M. The gluten-free basic food basket: a problem of availability, cost and nutritional composition. Eur J Clin Nutr. 2016;70:1215–7.

    Article  PubMed  Google Scholar 

  38. Panagiotou S, Kontogianni MD. The economic burden of gluten‐free products and gluten‐free diet: a cost estimation analysis in Greece. J Hum Nutr Dietetics. 2017;30:746–52.

    Article  CAS  Google Scholar 

  39. Lee AR, Ng DL, Zivin J, Green PH. Economic burden of a gluten‐free diet. J Hum Nutr Dietetics. 2007;20:423–30.

    Article  CAS  Google Scholar 

  40. Lee AR, Ng DL, Diamond B, Ciaccio EJ, Green PH. Living with coeliac disease: survey results from the USA. J Hum Nutr Dietetics. 2012;25:233–8.

    Article  CAS  Google Scholar 

  41. Butterworth JR, Banfield LM, Iqbal TH, Cooper BT. Factors relating to compliance with a gluten-free diet in patients with coeliac disease: comparison of white Caucasian and South Asian patients. Clin Nutr Edinb Scotl. 2004;23:1127–34.

    Article  Google Scholar 

  42. Mahadev S, Simpson S, Lebwohl B, Lewis SK, Tennyson CA, Green PHR. Is dietitian use associated with celiac disease outcomes? Nutrients. 2013;5:1585–94.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  43. Goodyer L, Brown LJ, Crowley E. Celiac disease knowledge and practice of dietitians in rural New South Wales, Australia. Food Nutr Sci. 2016;7:874–83.

    Google Scholar 

  44. Herman ML, Rubio–Tapia A, Lahr BD, Larson JJ, Van Dyke CT, Murray JA. Patients with celiac disease are not followed up adequately. Clin Gastroenterol Hepatol. 2012;10:893–9.

    Article  PubMed  PubMed Central  Google Scholar 

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Acknowledgements

We acknowledge the contribution of each of the participants of the study. We would like to acknowledge Indian Council of Agricultural Research, Department of Biotechnology for providing grants for research on Celiac Disease. We do acknowledge the University Grants Commission for providing Fellowship to Wajiha Mehtab.

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Funding

This research received no external funding.

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Authors and Affiliations

  1. Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India

    Wajiha Mehtab, Samagra Agarwal, Alka Singh, Anam Ahmad, Anjali Bhola, Namrata Singh, Vineet Ahuja & Govind Makharia

  2. Department of Home Science, University of Delhi, New Delhi, India

    Wajiha Mehtab

  3. Department of Gastroenterology, All India Institute of Medical Sciences, Jodhpur, India

    Ashish Agarwal

  4. Department of Gastroenterology, Indira Gandhi Medical College, Shimla, India

    Ashish Chauhan

  5. Department of Home Science, Lakshmibai College, University of Delhi, New Delhi, India

    Anita Malhotra

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  1. Wajiha Mehtab
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Contributions

WM: Review of literature, questionnaire development, data collection, data analysis, drafting of manuscript; AA: Review of literature, questionnaire development, data proofing, critical review of the paper; AC: Review of literature, questionnaire development, critical review of the paper; SA: Data analysis; AS: Data proofing, data analysis, critical review of the paper; AA: Data collection, data proofing; AB: Questionnaire development, data proofing, critical review of the paper; NS: Questionnaire development, critical review of the paper; VA: Critical review of the paper; AM: Questionnaire development, study supervision, critical review of the paper; GKM: Overall guarantor of the paper, designed the study concept, study supervision, data analysis, and finalization of the paper. All authors revised and approved the final version.

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Correspondence to Govind Makharia.

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Mehtab, W., Agarwal, A., Chauhan, A. et al. Barriers at various levels of human ecosystem for maintaining adherence to gluten free diet in adult patients with celiac disease. Eur J Clin Nutr 78, 320–327 (2024). https://doi.org/10.1038/s41430-024-01399-8

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