Presence of alarm symptoms at coeliac disease diagnosis is not associated with poorer long-term treatment outcomes.

Objectives: Alarm symptoms at coeliac disease (CeD) diagnosis predict a more severe disease presentation, but the long-term implications remain unclear. We studied the prevalence of alarm symptoms at diagnosis and their association with outcomes.

Methods: A mixed-method cohort study combined retrospective medical record review with data collection through patient interviews and blood sampling from 814 adult patients with CeD after a median of 9.7 years on a gluten-free diet (GFD). Validated questionnaires assessed symptoms and quality of life. Alarm symptoms included anaemia, weight loss, dysphagia, vomiting, melaena, and rectal bleeding. Patients were grouped by the presence or absence of alarm symptoms.

Results: 45% of the patients presented with alarm symptoms, primarily (95%) anaemia and weight loss. These patients were significantly more often female (83 vs. 71%; P < 0.001), had more severe clinical presentation (P < 0.001; reported severe symptoms 41 vs. 2%) and more advanced mucosal damage (P < 0.001; subtotal or total villous atrophy 72 vs. 57%) than those without these symptoms. On GFD, these patients experienced fewer persistent symptoms (asymptomatic 71 vs. 79%; P = 0.035) but more often had osteopenia/osteoporosis (15 vs. 9%; P = 0.008). The groups did not differ in the strictness of GFD, positivity of CeD autoantibodies, quality of life, fractures, or other comorbidities.

Conclusion: Alarm symptoms were common at CeD diagnosis. After 9.7 years on a GFD, patients with alarm symptoms had a higher incidence of osteopenia/osteoporosis, but generally did not demonstrate poorer long-term outcomes compared to those without alarm symptoms.