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Introduction Patients with adult refractory coeliac disease type 1 (RCD1) are defined as those with persistent symptoms despite strict adherence to a gluten-free diet for at least 12 months and ongoing villous atrophy (in the absence of a significant aberrant intraepithelial lymphocyte population). Budesonide therapy has been described in small single centre studies. However, data supporting its efficacy and defining its risk profile in RCD1 remains limited. We present the 1st multi-centre study by the European Society for the Study of Coeliac Disease (ESsCD) to assess this.Methods All patients with RCD1 treated with budesonide from 11 hospitals (United Kingdom, Germany, Italy, Netherlands, France, Republic of Ireland, Malta and Spain) over a 23 year period were assessed for the effects of treatment with steroids. The steroid sparing agents used and side effects were also analysed.Results In total, 186 patients were treated with budesonide for refractory coeliac disease ((72.0% female, 41.9 years (IQR 29.6-53.0 years) at coeliac disease diagnosis). Patients were started on budesonide, a median of 7.0 years (IQR:3.2-16.0 years) after diagnosis. On budesonide, 50.0% of patients reported complete resolution of their symptoms, 31.2% some improvement, 17.7% no benefit to their symptoms and 1.1% a worsening of their symptoms. Of those who had a repeat gastroscopy on budesonide (n=134), 52.2% exhibited a histological improvement. A clinical response to budesonide was associated with a higher likelihood of histological improvement (OR: 9.4 (95% CI: 2.6-33.7). There was no association between age (p=0.158) or sex (p=0.787) and clinical response to budesonide.Side effects were reported by 5.9% of patients and adrenal insufficiency identified in 2 of 12 patients tested.Following initiation of budesonide treatment, 39.8% of patients required no further treatment, 19.9% required long term budesonide and 32.1% of patients required restarting or uptitrating of their budesonide treatment due to a return of symptoms. In those requiring further treatments, the most frequently trialled steroid sparing agent was azathioprine and 47.1% of patients who started it continued therapy long term.Conclusion We present the first real world multi-centre international study demonstrating that over 80% of patients symptomatically benefited from budesonide. However, of those, only half had histological remission and over 30% relapsed on withdrawal of budesonide. This study provides the evidence that budesonide is the first line treatment of choice for RCD I.