Refractory Coeliac Disease in a Country With a High Prevalence of Clinically-Diagnosed Coeliac Disease

Published 6.1.2014

Abstract

Background

Refractory coeliac disease (RCD) is thought to be a rare disorder, but the accurate prevalence is unknown.

Aim

We aimed to identify the prevalence of and the risk factors for developing RCD in a Finnish population where the clinical detection rate of coeliac disease is high.

Methods

The study involved 11 hospital districts in Finland where the number of treated RCD patients (n = 44), clinically diagnosed coeliac disease patients (n = 12 243) and adult inhabitants (n = 1.7 million) was known. Clinical characteristics at diagnosis of coeliac disease between the RCD patients and patients with uncomplicated disease were compared.

Results

The prevalence of RCD was 0.31% among diagnosed coeliac disease patients and 0.002% in the general population. Of the enrolled 44 RCD patients, 68% had type I and 23% type II; in 9% the type was undetermined. Comparing 886 patients with uncomplicated coeliac disease with these 44 patients that developed RCD later in life, the latter were significantly older (median 56 vs 44 years, P < 0.001), more often males (41% vs. 24%, P = 0.012) and seronegative (30% vs. 5%, P < 0.001) at the diagnosis of coeliac disease. Patients with evolving RCD had more severe symptoms at the diagnosis of coeliac disease, including weight loss in 36% (vs. 16%, P = 0.001) and diarrhoea in 54% (vs. 38%, P = 0.050).

Conclusions

Refractory coeliac disease is very rare in the general population. Patients of male gender, older age, severe symptoms or seronegativity at the diagnosis of coeliac disease are at risk of future refractory coeliac disease and should be followed up carefully.

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Authors

T Ilus, K Kaukinen, L J Virta, H Huhtala, M Mäki, K Kurppa, M Heikkinen, M Heikura, E Hirsi, K Jantunen, V Moilanen, C Nielsen, M Puhto, H Pölkki, I Vihriälä, P Collin

Additional Information

Peer-Reviewed: yes.
Open Access: yes.
Cite as: Ilus, T., Kaukinen, K., Virta, L. J., Huhtala, H., Mäki, M., Kurppa, K., Heikkinen, M., Heikura, M., Hirsi, E., Jantunen, K., Moilanen, V., Nielsen, C., Puhto, M., Pölkki, H., Vihriälä, I., & Collin, P. (2014). Refractory coeliac disease in a country with a high prevalence of clinically-diagnosed coeliac disease. Alimentary pharmacology & therapeutics, 39(4), 418–425. https://doi.org/10.1111/apt.12606