Prevalence of celiac disease in primary care: the need for its own code

Background Celiac disease (CD) is an autoimmune chronic enteropathy of the small intestine caused by exposure to gluten in genetically predisposed individuals. CD is not easy to diagnose due to its unspecific symptomatology, especially in adults, a diagnosed/undiagnosed ratio of 1:7 is estimated. CD does not have its own code in the International Classification of Primary Care (ICPC) but it is coded under code D99 "Disease digestive system, other", which hinders diagnosis, intervention and research. The aim of this study is to investigate the prevalence of CD in Aragon, Spain, using the information available from Primary Care, as well as to discuss the difficulties involved in determining prevalence of CD from data collected at this level of medical intervention. Methods We designed an epidemiological cross-sectional study and analysed 26,964 electronic clinical records from the Aragonese Health Service under code ICPC D99 collected up to December 31st, 2016. The clinical records were classified by their editable field "descriptor" according to their probability of being related to CD. Analyses of gender, age, age at diagnosis, province and health sector were carried out. Results We found 4534 clinical records under 293 different descriptors with a high probability of referring to CD. Prevalence in Aragon was estimated to be 0.35% ranging from 0.24 to 0.81% with important differences among health sectors. Conclusions The prevalence of 0.35% is a long way from the generally accepted 1% but within the usually considered ratio 1:7 of diagnosed:undiagnosed cases. Differences among sectors should be carefully analysed. Lacking its own ICPC code, diagnosis of CD in Primary Care Services is not included in a single category, but it is distributed under several descriptors, which makes it difficult to offer any firm diagnosis for treatment and hinders research. Finally, the high prevalence of CD justifies its own ICPC code and the need to withdraw CD from the generic D99 code "Disease digestive system other".