Coeliac disease (CD) is a multi-system autoimmune enteropathy caused by an inappropriate immune response to certain storage plant proteins known as gluten. Gluten is found in wheat, barley, rye and triticale. The autoimmune response causes damage to the gut resulting in gastrointestinal and non-gastrointestinal symptoms. Untreated CD leads to malabsorption resulting in nutritional deficiencies and long term damage including an increased risk of intestinal lymphomas. The only treatment is removal of gluten from the diet, which in most cases, allows a full mucosal recovery and return to full functionality. In New Zealand the prevalence of CD is about 1%. However, there is little information on the health of people with CD in New Zealand. This study aims to fill that gap.Methods: The eligible study population was members of Coeliac New Zealand Incorporated who had an email or postal address. 2,200 members were invited by email and 500 members by postal letter to complete a questionnaire online or a paper copy. The questionnaire was adapted from the Canadian Celiac Health Survey and consisted of 10 sections investigating demographics, health, diagnosis, diet, quality of life issues, associated medical conditions, CD and associated medical conditions among relatives and recommendations. Data from completed postal surveys were entered, and all results collated in Excel. The results were analysed using STATA. Proportions and means were calculated as appropriate.Results: The response rate was 46.5%. Responses from 936 biopsy positive adults aged 16 years and over were analysed. 94% were New Zealanders of European descent. The ratio of males to females was 1:4.7. The mean age was 57 years for males and 53 years for females. The mean age at diagnosis of CD was 43.5 years and the mean time between the reported onset of symptoms and a diagnosis of CD was 11.6 (SD -3.6 -26.8) years. At the time of diagnosis the most common symptoms were bloating, gas and abdominal pain (76%), extreme weakness or tiredness (67%), diarrhoea (64%) and anaemia (57%)., When diagnosed with CD, 82%had been referred to a nutritionist or dietitian.96% found their health improved to some extent after commencing a gluten free diet (GFD). A large number of respondents continued to have ongoing symptoms despite 92% always following a GFD. The most common, and highly rated source of information about CD and its treatment was Coeliac New Zealand Incorporated. Three-quarters had received information from dietitians/nutritionist, but 19% considered the information to be fair or poor quality. The two factors which participants believed would contribute the most to improving the lives of individuals with CD were earlier diagnosis of CD (55%) and better labelling of gluten-containing ingredients in foods. Conclusions: CD is a common condition in New Zealand, but the disease is often misdiagnosed with the diagnosis being delayed for up to 12 years. Despite best efforts, accidental ingestion of gluten appears to be a problem with most people having ongoing symptoms to varying degrees. This may relate to inadequate dietary education, contaminated food products, or co-existing conditions. Given the significant delays in the diagnosis of CD, and the fact that a GFD is the only available treatment for CD, there needs to be greater awareness among health professionals of CD symptoms and its atypical presentation, improved knowledge about CD and its dietary treatment among dietitians, and improved knowledge among those preparing and manufacturing gluten free foods.
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