Understanding the patient experience of coeliac disease diagnosis: a qualitative interview study

Background: Coeliac disease (CD) presents with non-specific symptoms and delays to diagnosis are common. The traditional diagnostic pathway involves serological testing then endoscopic biopsy; however, literature on the effectiveness of no biopsy is increasing. Aim: To understand patient experience being diagnosed CD. Design Setting: Qualitative study involving semi-structured interviews adults CD living in UK. Method: Participants (n=20) were purposefully sampled from 200 who had completed a confidence survey. Interviews conducted via Zoom, recorded, transcribed verbatim. Data analysed using reflexive thematic analysis. Results: Interviewees faced pre-diagnostic uncertainty, presenting that many experienced for several years may have normalised. GPs often attributed alternative diagnoses, commonly IBS or anaemia. Investigations caused further half interviewees unaware their initial serology included test CD, reporting long waits endoscopy challenges managing diet around procedure. Uncertainty reduced upon receipt results. Endoscopy was presented as ‘gold standard’ most felt procedure necessary conviction lifelong gluten free diet. Conclusion: Patients uncertainty diagnosis. could improve experiences by mindful possibility sharing information testing. Policy guidance should address time during If adopted, consideration be given clinical implementation communication approaches reduce uncertainty.