Our understanding of refractory coeliac disease relies on reports from tertiary centres, with recruitment periods of over 10 years hinting at its rarity. Ascertainment of the prevalence of refractory coeliac disease is complicated by a definition relying on symptoms (despite coeliac disease itself presenting with a variety of symptoms or none at all) and the uncontrollable uncertainty of adequate gluten exclusion, compounded by a lack of objective inclusive criteria for diagnosis of type I refractory coeliac disease. The contribution from Ilus and colleagues is therefore welcome. A meticulous approach underlines the value of this study, demonstrated by the high detection rate of coeliac disease, and the level of dietary adherence in this Finnish population. One result of this rigour may be to reveal the true rarity of refractory coeliac disease by excluding patients permissively labelled as type I refractory coeliac disease in whom lack of response is due to ongoing gluten ingestion. This is supported by the low ratio of type I to type II refractory coeliac disease (3.4:1) compared with other reports (5.8:1; 11:1) that describe a higher prevalence of refractory coeliac disease.
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