A large proportion of the 100,000 New Zealanders estimated to be living with coeliac disease aren’t even aware they have it. That’s according to Coeliac New Zealand who says many more Kiwis are living with the autoimmune condition than are officially diagnosed due to the nature of the often vague and wide-ranging symptoms, as well as the barriers to diagnosis.

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 and epilepsy. It’s estimated that one in 50 Kiwis have coeliac disease, but a significant number of these cases remain undiagnosed.

As part of Coeliac Awareness Week this year (12-18 June) Coeliac New Zealand is calling on New Zealanders who may be at risk of having the condition or who have symptoms, to speak to their doctor and get tested.  Those at high risk include people with a family member (blood relative) with coeliac disease or an autoimmune condition such as type 1 diabetes.* Coeliac NZ general manager Wendy Bremner says once coeliac disease is diagnosed, following a strict gluten-free diet will improve most problems related to gut malabsorption caused by the disease. Ongoing issues like alopecia, dental defects, mouth ulcers and infertility can be overcome because as the gut heals, the absorption of nutrients increases.

“Getting a diagnosis can be life-changing,” says Mrs Bremner. “That is the important first step before starting a gluten-free diet. That’s because testing looks for antibodies that your body produces when you eat gluten. If you are not eating gluten you will not be producing antibodies so the results will come back negative.  Once diagnosed and gluten is eliminated, people with the condition get a new lease on life.” Associate professor and public health physician Kirsten Coppell, says that while the only treatment for the disease is to avoid gluten currently, this in itself can create a barrier to diagnosis that needs to be overcome.

“Most people feel so much better following a diagnosis and beginning a gluten-free diet. Getting a diagnosis does require seeing a paediatrician or gastroenterologist. Previously, it was recommended all people suspected of having coeliac disease have a gut biopsy as part of the diagnostic pathway, however, this is now no longer required for children, but they must still see a paediatrician”. The theme of this year’s Coeliac Awareness Week is “My Coeliac Challenge – Take Charge, Get Diagnosed and Find Help.” As well as encouraging at-risk people to get tested, Coeliac New Zealand is raising awareness of the daily challenges people living with the condition face and the range of resources and support available to help them live well. One of the many challenges faced by people with coeliac disease is the psychological impact of avoiding gluten in everyday situations - including at home, at work, when eating out and at school.

Coeliac NZ offers a variety of resources and tools to support people with coeliac disease and their whānau, from YouTube videos and webinars to Wellness Journals and kids’ clubs held in some regions around Aotearoa. The organisation is also trialling buddy shopper guides whereby an expert in shopping for gluten-free food assists newly diagnosed people with their food shop. “The Crossed Grain logo is another helpful way for people to find safe, gluten-free food when doing their grocery shopping. Coeliac NZ reviews and approves food to carry this internationally recognised logo.  “We also run the Dining Out Programme and other gluten free certifications for restaurants, cafes and caterers, training staff on safe food preparation and providing an independent endorsement to give people the confidence to eat out safely,” Mrs Bremner says.

For more information about Coeliac Awareness Week 2023, coeliac disease and Coeliac NZ membership, visit www.coeliac.org.nz.