Not consuming gluten is the only treatment available to prevent the consequences of coeliac disease, which can lead to serious complications such as intestinal cancer or infertility. Although adherence to the diet is vitally important, this is not always the case and, on many occasions, inappropriate food intake occurs because people with coeliac condition are unaware of a dietary transgression. That is why the UPV/EHU’s Gluten: health, safety and society research team has analysed the knowledge of patients and healthcare professionals with respect to the gluten-free diet: “We wanted to measure how much they know, to see where to place the emphasis when improving training, because the more knowledge there is, the better the health of people with coeliac disease. Our work indicates that the greatest shortfalls are among medical staff. They lack preparation and time and this is directly detrimental to dietary compliance,” explained Edurne Simón, leader of the research group that has been analysing issues relating to gluten and food for more than 25 years. 

The conclusions of the research were drawn from the responses by public health professionals in the 17 autonomous communities (regions) of Spain. In the questionnaires, 96% admit they need more training on the gluten-free diet and 80% say they would like to be able to spend more time with their coeliac patients. “Health workers are aware of the gaps they have. They miss more training because they are doing work that does not correspond to their area of expertise, and advising on issues they do not master. Moreover, surgery hours are limited. In the little time they have available, they focus on explaining the disease and do not have time to analyse whether the affected people are sticking to the diet,” added Simón.  

The UPV/EHU study detected specific aspects in which health professionals do not know very much. For example, the results reveal that one in five are wrong in thinking that quinoa contains gluten and 15% only know of three or fewer critical points in which contamination or cross-contact may occur. In addition, 70% of medical staff mistakenly believe that the declaration of gluten traces is mandatory on food packaging. In other words, most of them do not know that products really do not have to display such information on their packaging. The authors of the paper highlight the risks of this misconception: “If medical staff mislead their patients about labelling, there is a chance that the patients will eat gluten-containing food without a care in the world, which is harmful because the traces are also toxic.”

The Internet, the go-to source of information for people with coeliac disease

The research also managed to survey a broad sample of people with coeliac disease. Responses from more than 3,700 patients indicate that they have a good general knowledge about the gluten-free diet, especially those who have contacts with specialised patient associations.

However, people with coeliac disease were also asked where they address their dietary queries and 51.4% responded that they use the Internet or social media. The UPV/EHU researcher warned of the dangers of this reality, pointing out that there is a lot of unreliable content out there and that a certain amount of prior knowledge is needed to be able to discern between correct and erroneous information.

Furthermore, a fact that Simón regards as significant is that 31% turn to specialised patient associations to resolve their doubts and that only 15.2% go to the doctor’s surgery: “The coeliac expert associations are doing a great job, but it is not acceptable for them to be taking over work that should really be done by social security. We believe that setting up multidisciplinary clinical units comprising dieticians, doctors, nurses and psychologists to address coeliac disease would help to improve the health of people with coeliac disease. And it would also save money for the health care system, because it would prevent costs caused by late care or additional tests.”

Additional information

Edurne Simón is a member of the nutrition area in the Department of Pharmacy and Food Sciences. She leads the Gluten: health, safety and society research group, which has been analysing gluten and the gluten-free diet for over 25 years. Simón is a tenured lecturer on the Degree course in Human Nutrition & Dietetics and on the Degree Course in Pharmacy. She is also a lecturer on the Master’s courses in Nutrition and Health and in Healthy Ageing.