BackgroundCeliac disease is a major public health problem in many countries, including Iran. Considering the disease’s exponential spread throughout the world and its risk factors, identifying the educational priorities and minimum data required to control and treat the disease is of great significance.MethodsThe present study was conducted in two phases in 2022. In the first phase, a questionnaire was developed based on the information obtained from a review of the literature. Later, the questionnaire was administered to 12 pundits in the fields of nutrition (n= 5), internal medicine (n= 4), and gastroenterology (n= 3). As a result, the necessary and important educational content was determined for developing the Celiac Self-Care System.ResultsAccording to the experts’ viewpoints, the educational needs of patients were classified into nine categories of demographic information, clinical information, long-term complications, comorbidity, tests, medications, dietary recommendations, general recommendations, technical capabilities as well as 105 subcategories.ConclusionsDue to the increased prevalence of Celiac disease and the lack of an established minimum set of data, determining the required educational information is of great importance at the national level. Such information could be useful in implementing educational health programs to raise the public level of awareness. In the field of education, such contents can be employed in planning new technology based on mobile phones (mobile health), preparing registries, and producing widely used content.Supplementary InformationThe online version contains supplementary material available at 10.1186/s12875-023-02076-8.