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Editorial: knowledge—a prescription for coeliac disease

The only available treatment for coeliac disease is a lifelong and absolute gluten-free diet. This is necessarily managed by patients themselves, and usually without any ongoing support or follow up from a specialist. How well people are really able to stick to the diet is unclear; estimates of complete adherence range from 42%91%. In contrast to the level of investment in potential new treatments for coeliac disease (all of which are still a long way from the clinic), there has been precious little interest in how best to support patients with their diet. Therefore, the survey of over 7000 patients with coeliac disease in Australasia published recently in this journal provides extremely welcome and timely information. A questionnaire completed by participants revealed that only 1% admitted to deliberate gluten ingestion. However, a standardised dietary adherence test suggested that, in reality, 39% failed to follow the gluten-free diet. As they were recruited through the websites of national coeliac disease societies, the survey respondents are probably also the most motivated and such figures are likely to be better than average. This attests to the problems that patients face in trying to exclude such a ubiquitous dietary ingredient. Several potential reasons for diminished dietary adherence were examined. Of critical importance, only 57% of coeliac disease patients had seen an appropriately qualified health care professional for advice about a glutenfree diet after diagnosis. Furthermore, fewer than 25% had seen a dietitian specialising in the condition. Such a lack of patient education is likely to be a universal problem and could perhaps be considered of equivalent negligence to a failure to prescribe an active medication (were it to exist!). Unsurprisingly, patients with poorer dietary adherence scored lower on a simple test of their knowledge of gluten-containing foods. However, although they correctly identified those foods that did contain gluten, they failed to appreciate many that did not. In essence this would lead to a more restrictive diet which is harder to follow and therefore paradoxically more likely to fail. Such patients with poor dietary adherence also experienced lower quality of life scores. One could perhaps envisage that, regardless of physical symptoms arising, the psychological stress of “trying too hard”’ and failing to achieve gluten exclusion could be contributing. A key message from this survey is that more support is needed to empower patients to maintain their diet. If we expect patients to follow a gluten-free diet, they need to know “why” and “how” to do it. How best to deliver this information needs to become a fundamental priority for healthcare professionals—it is, after all, the only prescription they currently have for coeliac disease.