The 2024 New Zealand Coeliac Health Survey was the second such national survey, with the first undertaken in 2012. The 2024 survey was completed by 1370 people with doctor-confirmed coeliac disease, of whom 83% were women and 206 were aged less than 16 years. A key finding among those aged 16 years and over in the 2024 survey was that the median time from the onset of symptoms to diagnosis of coeliac disease was 4 years, compared to 5 years in the 2012 survey. This important result suggests that there is greater awareness of the many different ways coeliac disease can present among health professionals and the community, and people are being tested for coeliac disease sooner than in the past.
Coeliac New Zealand remained the most common source of information about coeliac disease following diagnosis (80% of participants), followed by dietitians (62% of participants) and gastroenterologists (52% of participants). It was notable that since the first survey in 2012, print media was less frequently sourced, and social media platforms were accessed by close to half of the survey participants. The quality of information was considered to be excellent or very good by 90% of those accessing Coeliac NZ information unlike all other sources of information including dietitians (68%), gastroenterologists (75%), family doctor (54%), cook books (64%) and social media (54%).
Looking into some results for adults (those >16 years old) from the 2024 survey
Most adults who completed the 2024 survey (87%) were diagnosed with coeliac in their adult years. The age at the time of their diagnosis ranged from under one year to 81 years old, with the average age at diagnosis being 39 years. One-third (33%) reported major stress, a significant illness (including COVID and major surgery) or pregnancy before diagnosis, and about one-third (34%) reported having symptoms for more than 10 years before diagnosis.
Before diagnosis, over half (58%) were advised that their symptoms were due to another health condition, including anaemia (27%), stress/nerves/depression (21%), irritable bowel syndrome (19%), and vitamin deficiencies (16%). Almost all (98%) reported symptoms at the time of diagnosis, the most common being bloating, gas and abdominal pain which was experienced by more than two-thirds (69%).
Following a diagnosis of coeliac disease, three-quarters (75%) were referred to a dietitian to support transition to a gluten-free diet. Regardless of seeing a dietitian or not, most people (94%) began a strict gluten-free diet after being diagnosed with coeliac disease. Following a gluten-free diet was reported to be not difficult for 21%, a little to moderately difficult for 74% and very difficult for around 6% of participants. Almost everyone noticed at least a little improvement in their health after starting a gluten-free diet, with almost two-thirds noticing a lot of improvement. However, not everyone’s symptoms resolved after starting a gluten-free diet, with two-thirds reporting they had not fully recovered from all their symptoms and three-quarters of them did not know why they had not fully recovered. However, some reported possible reasons for their ongoing or recurring symptoms included difficulties adhering to a gluten free diet and being unaware of hidden sources of gluten.
If gluten was accidentally consumed, almost three-quarters had a reaction and 17% were unsure if they did or not. The most common symptoms after accidentally consuming gluten included stomach/abdominal discomfort (65%), diarrhoea (57%), fatigue (52%), bloating/gas (60%) and nausea/vomiting (45%). These symptoms would appear within 3 hours of consuming gluten for 69% and within 12 hours for 88%. For most people (89%), accidental consumption of gluten occurred rarely or occasionally, but it occurred at least weekly for 3%.
These results indicate that coeliac disease is an ongoing challenge for many people and that efforts by Coeliac New Zealand to support people with coeliac disease continues to be important for all people with coeliac disease.
The next article in this series will report on the survey findings for children and adolescents aged less than 16 years.
Thank you to everyone who participated in the 2024 NZ Coeliac Health Survey and thank you to Coeliac New Zealand for their assistance with undertaking the survey.
Article provided by Dr Kirsten Coppell and Registered Dietitian Sophie Hall, both members of the Coeliac New Zealand Medical Advisory Panel