‘It was hell on earth’: perspectives of people living with celiac disease on diagnostic delay

Abstract

Background

Celiac disease (CD) is underdiagnosed and associated with diagnostic delays. This has long-term consequences for the health and well-being of people living with the condition. Little is known about the qualitative configurations of the assessment processes of people living with CD.

Methods

Using a thematic network analysis of 24 in-depth interviews, this study explored the experiences of people living with CD related to their assessment processes leading to being diagnosed.

Results

A significant diagnostic delay (up to 26 years) was evident in many interviews. Factors contributing to diagnostic delay included limited knowledge about CD among general practitioners (GP) and in the general population, categorisations of symptoms as ‘typical’ or ‘atypical’ and psychosomatic explanations of symptoms. Diagnostic delay resulted in (1) decreased psychological well-being due to severe symptoms, changes in self-perception and self-blame; (2) decreased physiological well-being due to comorbidities; and (3) mistrust in the healthcare system, leading to an increase in informants' responsibility for expediting their assessment processes. This suggested the presence of a neoliberal tendency because informants felt they were primarily responsible for their assessment processes.

Conclusions

We encourage the implementation of initiatives to increase awareness of CD among GPs as well as more consistent and frequent use of the screening guideline due to variations in its clinical presentation. Increased awareness and consistency could reduce variations in assessment processes given GPs' varying knowledge about the condition.