Coeliac New Zealand has announced a major milestone, with its national Patient Registry now exceeding 500 participants. The registry, launched just over a year ago to better understand the experiences of people living with coeliac disease and other gluten‑related disorders, is rapidly becoming one of the most comprehensive datasets of its kind in Aotearoa.
The November 2025 analysis shows strong participation from every region of New Zealand, including Auckland, Canterbury, Wellington, Waikato, Otago, Bay of Plenty, Northland, and Southland. Respondents range from infants to older adults, with 75% identifying as female - a trend consistent with global patterns in autoimmune conditions.
“This registry is giving us a much clearer understanding of coeliac disease in New Zealand,” says Wendy Bremner, General Manager of Coeliac New Zealand. “It’s capturing real data on diagnosis, diet adherence, ongoing symptoms, and everyday challenges. That evidence is invaluable for improving care and advocacy, and it will help us better understand and respond to the needs of people living with coeliac disease.”
Coeliac Disease Dominates, but Other Conditions Are Emerging
While most participants report a diagnosis of coeliac disease, the registry also captures cases of dermatitis herpetiformis, non-coeliac gluten sensitivity, gluten ataxia, wheat allergy, and non-responsive coeliac disease - an often-complex form requiring specialised medical management.
Diagnostic pathways vary widely, with many undergoing biopsy, coeliac serology, genetic testing, or colonoscopy. Others were identified through family screening or symptom-driven GP referrals. Common symptoms leading to diagnosis include abdominal pain, diarrhoea, weight loss, anaemia, and fatigue – which are all consistent with international data showing coeliac disease is frequently missed or misdiagnosed.
High Diet Adherence but Accidental Exposures Remain
“The data from the registry shows just how important early diagnosis and a strict gluten-free diet are for improving wellbeing in people with coeliac disease,” says Wendy. “Almost all respondents report that they are ‘always gluten-free,’ and most feel significantly healthier since diagnosis. Yet accidental exposures and ongoing symptoms for some highlight the need for continued access to knowledgeable dietitians, safe food options, and greater public awareness.”
A Real Impact on Daily Life
The coeliac registry also reveals the varied lived experience of those with gluten-related disorders. While many respondents report no missed work or school days, a small number however report missing more than 100 days per year, signalling significant health and socioeconomic impacts of the disease.
Why the Patient Registry Matters
Coeliac disease affects an estimated 1 in 70 New Zealanders, yet up to 80% remain undiagnosed. Left untreated, it can lead to long-term complications, including osteoporosis, fertility issues, neurological conditions, and additional autoimmune disorders. The coeliac registry aims to fill critical knowledge gaps in patient data. “The coeliac registry will help shape the future of coeliac care in Aotearoa,” says Wendy. “By capturing real‑world data on diagnosis, diet adherence, accidental gluten exposures, ongoing symptoms, and wellbeing, it provides the evidence we need to improve services, strengthen advocacy, and inform health policy. To truly reflect the diversity of our community, we need more people to take part so every region, ethnicity, and age group is represented. If you haven’t registered yet, now is the perfect time.”
Coeliac New Zealand Encourages More Kiwis to Join
We are inviting anyone diagnosed with coeliac disease, dermatitis herpetiformis, non-coeliac gluten sensitivity, gluten ataxia, or wheat allergy/intolerance to join the registry. The process is confidential, takes only a few minutes, and contributes directly to improving the understanding, support, and management of these conditions nationwide.
The more people who participate, the stronger the evidence base - and the louder the collective voice advocating for better care.
Why your experience matters
The iCureCeliac® Patient Registry is more than a research tool; it’s a global movement. More than 15,000 individuals and families worldwide have already joined, sharing their experiences to help researchers understand the real-world impact of coeliac disease.
Whether you or your child were recently diagnosed or have been managing coeliac disease for years, your journey holds crucial insights. By participating, you become part of a global network of patients and researchers working toward one common goal: transforming the future of coeliac care.
What Is the Patient Registry?
The registry collects confidential health data, symptoms, lifestyle impacts, and more from people living with coeliac disease. This information helps researchers explore pressing questions like:
The more people who share their experiences through the Coeliac NZ Patient Registry, the closer we get to better treatment options for all people with coeliac disease.
Please share your coeliac journey today by joining the patient registry.
coeliac.org.nz/patient-registry/
