Abstracts of Communications

Abstract

Life-long strict compliance with a gluten-free diet is considered essential in the management of coeliac disease (Holmes er o f . 1989). For those diagnosed at an early age, education will have been directed at parents and carers. As children with coeliac disease. grow up and develop increasing responsibility for their dietary intake and food choices, education appropriate for age and development is important to ensure compliance.A group of patients with coeliac disease (n 125) was identified, who had been diagnosed 5 to 15 years previously, from biopsy reports (n 40) and hospital records (n 85) from Our Lady's Hospital for Sick Children, Cmmlin. Assessment of their current medical follow-up, compliance and understanding of the gluten-free diet was carried out by means of a postal questionnaire. This resulted in sixty-nine analysable responses. The responses represented patients with the age range 5.1-22.8 years (mean 13.69, SD 4.63). Mean age at diagnosis was 2.95 (SD 2.84) years of these patients. 66%(44) claimed smct maintenance of their diet, 21% (14) reported nqplarly breaking the diet and 13%(9) responded that they kept poorly to the diet. The most common reasons cited for non-compliance of the diet included difficulty in maintaining the diet, especially during social occasions. 16%( 10) with gluten-containing confectionery and cakes being consumed, 10%(6) found the diet too expensive. Other reasons given included ingestion of communion hosts, alcohol, social occasions and boredom with the diet.When asked to choose gluten-containing foods from a list of eight everyday foods, 11%(7) correctly chose the three gluten-containing foods; 42%(26) chose two correctly, but 36%(23) could not identify any of the gluten-containing foods correctly.Of those responding to the question, 61%(33) have attended a follow-up clinic in the last 3 years; 13%(7) have not attended follow-up. Despite medical follow-up, 47%(29) have only seen a dietitian once and 13%(8) have never seen a dietitian before. As coeliac disease is treated with diet, one would expect the dietitian to play a major role in treatment, but this is apparently not the case in practise. These figures are of concern as dietary compliance is considered necessary to avoid long-term complications such as intestinal carcinoma (Holmes er al. 1989).Various factors were taken into account when interpreting the results of this study and were shown not to confound the results in any way. These factors included: membership of the Coeliac Society of Ireland, whether a parent or child responded and the attitude of the subject to coeliac disease in general.A more comprehensive assessment of the understanding of coeliac disease and compliance with glutenfree diet is necessary in order to develop appropriate and effective education strategies for these patients, who require follow-up education as they grow up. Coeliac disease results from intolerance to dietary gluten, a state which is thought to be permanent. Treatment of the condition requires the dietary exclusion of glute...