New national study aims to enhance understanding of coeliac disease

A new study into the health of New Zealanders living with coeliac disease was launched (3rd June) in a significant step forward in understanding the autoimmune condition and improving the lives of those affected by it.

The 2024 New Zealand Coeliac Health Survey will investigate the health and dietary management of Kiwis living with coeliac disease, estimated to be at least one in every 100 New Zealanders. The survey also sets out to determine if there have been any significant changes since the first national Coeliac Health Survey was carried out in 2012.

The study is being spearheaded by the University of Otago PhD student and lead researcher Sophie Hall, overseen by Dr Angharad Hurley, Professor Andrew Day and Dr Kirsten Coppell, the latter of whom are both members of Coeliac New Zealand’s medical advisory panel.

Dr Kirsten Coppell, who initiated the 2012 Coeliac Health Survey, says this survey will cover a wide range of aspects, including symptoms and experiences prior to diagnosis, experiences following commencement of a gluten-free diet, access to information, support and treatment and suggestions to help improve the lives of people with the condition.

“The 2024 survey will provide insights into the challenges of living with coeliac disease and will help us determine if the health and quality of life of New Zealanders with the disease has changed since 2012,” says Dr Coppell.

Lead researcher and PhD student Sophie Hall says she wanted to be involved in the study to help Kiwis living with coeliac disease live their best lives.

“It is important that we understand the implications of living with coeliac disease so that we can make sure we are offering the right support for their journey,” says Ms Hall.

Coeliac disease occurs when exposure to gluten, a protein found in wheat and several other grains, triggers an immune response. This reaction causes damage to the small intestine and can lead to a wide range of symptoms but most commonly abdominal pain, bloating, diarrhoea, and fatigue. If left untreated, coeliac disease can lead to serious health issues, such as osteoporosis, fertility issues, and nervous system disorders.

As part of Coeliac Awareness Week this year (10-16 June) Coeliac New Zealand is calling on New Zealanders who have been diagnosed with coeliac disease to participate in the survey.

“The more people who participate, the more comprehensive the data and the better our understanding will be to inform healthcare practices and policies related to coeliac disease,” says Coeliac New Zealand general manager Wendy Bremner.

“By gaining insights into people’s daily struggles and triumphs, we can better tailor support and ultimately enhance their quality of life.”

The survey, which will be available on Coeliac NZ’s website, will run for six weeks and will take no more than 10 minutes for participants to complete. The gathered data will be analysed to identify trends, challenges and potential areas for improvement in healthcare and support services. The results are anticipated to be released early next year.

The theme of this year’s Coeliac Awareness Week focuses on a culture of care, by caring about colleagues in the workplace to highlight how both employers and employees can better support colleagues with coeliac disease to feel safe at work.

“We hear so many stories from people with coeliac disease about how their need to follow a strict gluten free diet sees them excluded from activities and events where kai is involved. A lot of people who have no awareness of coeliac disease don’t realise the anxiety that these people face on a daily basis trying to avoid the smallest crumb of gluten which can cause real harm to their bodies, says Mrs Bremner.

“I hope the findings will not only benefit those currently living with the condition, but also contribute to broader awareness and understanding in workplaces and the wider community.”

For more information about Coeliac Awareness Week 2024 or to complete the survey, visit www.coeliac.org.nz.