Coeliac disease is a chronic immune-mediated enteropathy triggered by gluten intake, which affects the small intestine in genetically susceptible individuals (HLA-DQ2 and/or HLA-DQ8). This disease, which occurs in both children and adults, is among the most common genetically determined disorders in Western countries. It is characterized by the presence of very varied and often nonspecific clinical manifestations (primarily digestive symptoms and signs of intestinal malabsorption), as well as the presence of specific antibodies (tissue transglutaminase and endomysium) and enteropathy. Currently, the only treatment for coeliac disease is a strict gluten-free diet for life. The main objective of the NATURCEL (NATURal history, epidemiological, clinical, diagnostic and therapeutic aspects of CoELiac disease and noncoeliac enteropathies) registry is to collect selected variables on different aspects of the disease (epidemiological, clinical, genetic, immunological, etc.) for a subsequent shared analysis for scientific and translational purposes.
Objective: Ulcerative proctitis (UP) usually presents a milder course, but some patients develop significant symptom burden, severe forms, or refractory UP (RUP). Our objective was to characterise RUP and generate recommendations for daily practice.
Methods: A systematic review (SR) was conducted to analyze epidemiological, clinical, and pharmacological treatment aspects of RUP. The results were discussed in a nominal focus group meeting composed of seven gastroenterologists specialized in the management of inflammatory bowel disease, a nurse, and a patient. Several statements on the management of PU were proposed and voted to achieve agreement.
Results: The SR included 43 articles of low to moderate quality. Nearly 30% of patients presented RUP, and the impact of the disease on their quality of life was highly significant. Different gaps of knowledge related to the clinical characteristics and course of the disease, efficacy, safety, and selection of pharmacological treatments were identified. The experts proposed 13 practical statements that reached the established level of agreement. These address the diagnosis of UP and RUP, their therapeutic goals and treatment selection, monitoring, treatment response, and the role of the nurse.
Conclusions: RUP is common and can have a significant impact on patients. More research is needed to characterize RUP and the long-term efficacy of available treatments. The proposed statements aim to address the knowledge gaps related to RUP.

