Background & Aims: Celiac disease, or gluten-sensitive enteropathy, is a chronic immunological disorder triggered by an immune response to gluten found in wheat and similar grains in genetically predisposed individuals. It is characterized by the presence of gluten-dependent clinical symptoms and specific celiac antibodies. The current cornerstone of treatment for celiac patients is a lifelong strict gluten-free diet. Strict adherence to this diet is essential not only for the resolution of symptoms and mucosal healing but also for preventing complications such as anemia, osteoporosis-related fractures, and small bowel lymphoma. Based on modeling estimates, approximately 42,000 deaths in children under 5 years of age worldwide are attributed to celiac disease annually, accounting for about 4% of diarrhea-related mortality in children. The prevalence of celiac disease in Iran is approximately 1%, which is similar to its prevalence in Western European countries. A major cause of treatment failure, symptom recurrence, and the onset of complications is incomplete adherence to the gluten-free diet, with long-term compliance rates remaining low. Reasons for non-adherence include limited knowledge, consumption of food from restaurants and supermarkets, and insufficient patient education provided by physicians. Furthermore, parental knowledge has been identified as an independent factor influencing treatment adherence in children with celiac disease. This study was conducted to evaluate the level of adherence to the gluten-free diet and identify factors influencing it among celiac patients referring to the Children's Medical Center from the beginning of 2021 to September 2023.
Methods: We used a cross-sectional method and the Pv-CDAT questionnaire to measure adherence to the gluten-free diet. 337 (54% female) celiac psatients enrolled in the study and and asked to fill questionnaire and undergone followup serologic assessment. Factors affecting treatment compliance were included in a questionnaire based on previous studies and expert opinions.
Results: Among 337 patients, the mean age was 9.55 years, with an average time since diagnosis of 2.77 years. The rate of full compliance to treatment was approximately 14.54% and the partial compliance was 22.23%. History of hospitalization influenced adherence to the gluten-free diet (p value = 0.046). The presence of comorbidities predicted better adherence (p value = 0.002). Availability of gluten free foods (p-value<0.01) and academic literature of mother(p-value=0.006) were significantly influenced compliance. A significant relationship was found between adherence to treatment and levels of Anti-TTG IgA antibodies, with lower compliance associated with higher antibody levels (p value < 0.001).
Conclusion: Factors associated with reduced treatment adherence in this study included the caregiver's (usually the mother) lower education level, poorer access to gluten-free foods, and a lower ability to afford and spend on a gluten-free diet. A caregiver's low education level (illiterate or below high school diploma) increases the risk of non-adherence to treatment. A primary reason for this is an inability to acquire correct and sufficient information about the disease and its complications. These findings are consistent with the 2020 study by N. Abu-Janb, which found that a higher level of education and knowledge about the gluten-free diet contributed to better treatment adherence. Given that Iranian food culture is primarily based on wheat and bread, parental education by specialists on preparing foods using rice flour, rice, soy, and potatoes as substitutes for wheat and barley-based foods can help improve adherence. Access to a gluten-free diet is a major factor in treatment adherence. In the present study, the strongest predictor of treatment adherence was access to a gluten-free diet, followed by subjective affordability. Consequently, measures that can significantly increase adherence should target improving access. Furthermore, the financial burden of a gluten-free diet was approximately 5.3% of household income, and many families considered gluten-free products to be very expensive or expensive. This issue leads to an increase in dietary failure or causes patients to abandon the diet completely after some time (a CDAT score higher than 30 or more than 10 dietary failures in the past month may indicate complete treatment abandonment). These results align with the study by K. MacCulloch et al., which identified affordability and access as the greatest barriers to treatment adherence. Additionally, the study by María Fernández Miaja cited the increased costs associated with a gluten-free diet as a cause of treatment failure. Conversely, factors that increased treatment adherence included the presence of a comorbid condition such as type 1 diabetes or hypothyroidism and a history of hospitalization. Various studies have reported inconsistent and non-aligned results regarding the presence of comorbidities and dietary adherence. The study by F. Sbravati et al. found no association between the presence of a comorbid condition and the level of treatment adherence.