In Italy, celiac disease diagnoses continue to grow. According to the latest data from the Ministry of Health, there are almost 280 thousand people with a confirmed diagnosis, with over 14 thousand new cases in a year. Yet, the disease still remains largely hidden: estimates speak of around 600 thousand people with celiac disease and more than half do not know they have it.
Today, May 16th, World Celiac Day is celebratedan opportunity to bring attention to a pathology still surrounded by clichés and incorrect information. These days, the AIC (Italian Celiac Association) is involved in National Celiac Disease Week, with campaigns and initiatives dedicated to raising awareness and prevention. Why lCeliac disease is not a dietary fad, but a chronic autoimmune disease which, if not recognised, can cause serious consequences.
But why, despite increased awareness, are there still so many people undiagnosed? And how much misinformation about gluten-free still weighs today? We talked about it with Caterina Pilo, general director of AIC – Italian Celiac Association.
Director, does the increase in diagnoses mean that celiac disease is more widespread today than in the past?
«Actually, no. Rather than an increase in the disease, I would speak of greater emergence. We often use the image of the iceberg: celiac disease has always been accompanied by strong underestimation. We have known for some time, thanks to epidemiological data, that it affects approximately 1% of the general population. This means that in Italy we expect around 600 thousand people with celiac disease. Today we are slowly bringing out the hidden. The Report to Parliament referring to 2024 records over 14,400 more diagnoses compared to the previous year and we are now close to 280 thousand diagnosed cases. After the slowdown due to the pandemic, when access to hospitals and endoscopic examinations was much more difficult, the growth rate is consolidating. But the recorded prevalence is still 0.47%: it means that we have to diagnose more than half of the expected celiacs.”
Why is it so important to reach a diagnosis and why still today so many people remain celiac without knowing it?
«Because diagnosing celiac disease means preventing even very serious and irreversible complications. An unaware celiac person continues to eat gluten and is therefore excluded from the only available therapy, i.e. the gluten-free diet. In recent years, awareness among the medical profession has grown, even among specialists not strictly linked to the gastrointestinal system, but it remains essential to learn to recognize the less classic manifestations of the disease. The child with a swollen abdomen and growth problems today is just one of the possible clinical pictures. Very often celiac disease manifests itself in other ways. Let’s think of a young woman with early osteoporosis, or with treatment-resistant anemia, infertility or spontaneous abortion without other explanations. Or recurrent canker sores, alterations of dental enamel, neurological or eating disorders. These are symptoms that often lead people to repeatedly contact the Health Service without immediately getting to the real cause.”
In recent years, a lot has also been invested in pediatric screening. Where are we at and how important is it to identify celiac disease from childhood?
«Law 130 of 2023 introduced pediatric screening for celiac disease and type 1 diabetes for the first time. As regards celiac disease, a pilot project was concluded in four regions – Campania, Marche, Lombardy and Sardinia – which involved over 5 thousand children. This allowed us to define the protocol that will be used at a national level. Now there has been the green light at the State-Regions Conference and the screening will start progressively. It is essential to intervene as soon as symptoms appear. Celiac disease is a multifactorial disease: it requires a genetic predisposition, exposure to gluten and a triggering factor that can appear at any time in life. If a child has already developed the disease, the sooner the diagnosis is made and the sooner gluten-free therapy can begin.”
In terms of everyday life and inclusion, how much has the life of celiac children changed over the years, especially at school?
«The turning point was law 123 of 2005, the framework law on celiac disease. Among its objectives was the full social inclusion of people with celiac disease. The cure for celiac disease is not a tablet: it is daily food. And this inevitably has a strong social impact. The law introduced the right to gluten-free meals in public canteens, especially school canteens. Before 2005, many children could not eat at the canteen: they were picked up from school by their families, taken home for lunch and then brought back to class. In some cases, attendance allowances linked to civil disability were even requested. The association has always fought against this welfare logic: the objective was to eliminate obstacles to full social participation. Today the situation has changed a lot. We are not just talking about schools, but also about hospitals, barracks, prisons and public canteens in general. The principle is to allow the person with celiac disease to live like everyone else.”
However, the problem of the costs of gluten-free products remains. Is the state contribution sufficient today and how much does the price increase weigh on families?
«The Italian system is built in a very precise way. The spending limit is calculated on the basis of the energy needs scientifically defined by the Italian Society of Human Nutrition, taking into account age, sex and physical activity. The contribution does not have to cover all food needs, but only the portion relating to carbohydrates that require specific gluten-free products. In fact, part of the diet is naturally gluten-free: corn, rice, potatoes and legumes. In this sense the system also has an educational function, because it promotes a balanced and varied diet. Furthermore, the spending ceiling is increased by 30% in particular situations, such as pregnancy or jobs with high energy expenditure. It is clear, however, that the price increases affect everyone, celiacs and non-celiacs. This is why AIC is asking to standardize the VAT on gluten-free products and is also proposing an experiment with 0% VAT. We estimated that it would mean around 100 euros of annual savings per person. It may seem like little, but we are talking about essential foods.”
In recent years, “gluten-free” has also become a food trend. What risks does this trend pose?
«The gluten-free diet has benefits only for those with celiac disease. There is no scientific evidence that it improves the health of non-celiac people, makes people lose weight or improves sports performance. Everyone is free to eat as they want, of course, but personal choices must be distinguished from medical therapy. The main risk is hiding undiagnosed celiac disease. A person can start a gluten-free diet on their own, feel better and never complete the diagnostic process. But to carry out reliable tests the patient must consume gluten: if he eliminates it too soon, the diagnosis becomes much more difficult. For this reason, you should never start a gluten-free diet before testing. It is one of the most dangerous fake news. Unfortunately, many arrive at specialist centers already on a gluten-free diet, perhaps because they were recommended by friends or even healthcare professionals. And this enormously complicates the diagnosis.”
Is there still misinformation even among doctors?
«The situation is improving, but more transversal expertise is needed. For years, celiac disease was considered a pediatric and even reversible disease. Today we know that it can appear at any age and is permanent. Pediatricians are generally very knowledgeable, now we need to spread this knowledge to other areas of medicine.”
