Diagnostic and Self-Management Experiences of People With Coeliac Disease: The 2024 New Zealand Coeliac Health Survey

Introduction

Coeliac disease (CD) is a common immune-mediated enteropathy requiring a strict, gluten free diet (GFD), which is mostly self-managed. The aim of this study was to describe the health, diagnostic experiences, and dietary management of people with CD in Aotearoa New Zealand (NZ).

Methods

The 2024 NZ Coeliac Health Survey (based on the previous 2012 survey) was a self-administered, cross-sectional survey. An invitation to complete the survey was disseminated electronically through the national patient advocacy group, Coeliac NZ Incorporated. The survey examined symptoms associated with CD, diagnosis, dietary management, general health, and the challenges associated with self-management.

Results

There were 1164 participants aged ≥ 16 years with doctor-diagnosed CD that completed the survey. The group were predominantly female (83%), and the average age at diagnosis was 39 (SD 17.1) years. The most frequently reported symptoms prior to diagnosis were bloating, gas, and abdominal pain (69%), extreme weakness or tiredness (55%), and diarrhoea (51%). The median duration from the onset of symptoms to diagnosis was 4.0 years (IQR 1–10.6). More than half (58%) of participants reported being diagnosed with another condition prior to their CD diagnosis. Almost all (95%) respondents self-reported strict adherence to a GFD. Despite this, 68% reported persistent symptoms, with 50% of all respondents reporting accidental gluten exposure only occurring rarely.

Conclusions

This large cross-sectional study illustrated the ongoing challenges that people face in establishing a diagnosis of CD and the subsequent management. Whilst this cohort had some similar reports to the earlier cohort, some improvements are noted: this includes a reduced period of symptoms prior to diagnosis. Further improvements in awareness (to enable faster diagnosis) and enhanced support and monitoring following diagnosis are needed to improve outcomes of people with CD in NZ.