New study reveals 75% underdiagnosis of coeliac disease

In a recently published study on nature.com scientists discovered a 75% underdiagnosis of coeliac disease in what they describe as the largest yet screening study of coeliac disease with biopsy-confirmed diagnoses and dietary intervention.

Large population-based study

Almost 13 000 adults participated in a population-based health study in Tromsø, Norway. The aim of the study was to identify how many undiagnosed cases of coeliac disease they could find. It was discovered that 75% of the population who actually had coeliac disease were previously undiagnosed. The conclusion of the study is that there should be a low threshold for testing for coeliac disease, even in the absence of abdominal complaints since the large majority of the tested patients considered the symptoms to be a part of their normal state. This causes many not to ask for being tested.

Study revealed a 75% underdiagnosis of coeliac disases

The proportion that previously was diagnosed with coeliac disease was 0.37% when the study began. In the study, it was discovered that undiagnosed coeliac disease in the clinical test population was 1.10%. Thus, a total of 1.47% of the population had coeliac disease, of whom 75% were previously undiagnosed.

Results came as a surprise

The test leaders were surprised by the high prevalence of undiagnosed coeliac disease despite the well-organized healthcare system in Norway. The study shows that the prevalence of coeliac disease in Norway is in line with what has been estimated globally which has been found to be around 1,4%[1]. The prevalence of coeliac disease however varies across countries and regions.

There is an ongoing discussion about public screening for coeliac disease in many countries.

- The study confirms the importance of all the work done by our members, the National Coeliac Societies, to raise awareness with public health institutions on early diagnosis as well as tackling underdiagnosed cases so that more people can get a correct diet and better quality of life, says Veronica Rubio, Secretary General at AOECS.

About the study

The study was published on nature.com in August 2022 by Kvamme, JM., Sørbye, S., Florholmen, J. & Trond S. Halstensen et al. Population-based screening for celiac disease reveals that the majority of patients are undiagnosed and improve on a gluten-free diet in Sci Rep 12, 12647 (2022). The study is open and can be read in full by clicking on the link below.