A new study into the health of New Zealanders living with coeliac disease is being launched today 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.Lead researcher and PhD student Sophie HallDr Kirsten Coppell
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 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.”
To view or complete the survey, click here.
For more information about Coeliac Awareness Week 2024 visit www.coeliac.org.nz.