“Eating out with people is everything but chill,” she told us.

Iva can count on one hand the restaurants in Hamburg, where she lives, that offer a safe gluten-free menu. “I can’t decide spontaneously. I always double-check where it can be safe to eat, or I eat something beforehand,” she said.

Every single crumb hurts

You may have come across gluten-free products on supermarket shelves, wondering who buys them after checking the price tag. But coeliac disease is not a lifestyle choice, nor should it be confused with a wheat allergy or gluten sensitivity.

Unlike those conditions, coeliac disease is an autoimmune disorder. Eating gluten triggers an immune reaction that inflames the small intestine, causing symptoms ranging from digestive problems to fatigue and iron or calcium deficiencies.

In Europe, about seven million people suffer from the disease, with noticeable differences between countries: while Finland tops the chart with 2.4%, in Germany, only 0.3% of the population is affected.

But that may be just the tip of the iceberg. According to the latest European clinical guidelines, coeliac disease remains heavily underdiagnosed. A 2021 Norwegian study found that three in four people with coeliac disease had not been diagnosed before taking part in the research.

“There is a general need for improving knowledge on the disease and sensibilising people,” Susanna Neuhold, board director of the Association of European Coeliac Societies, told The European Correspondent.

Awareness is crucial. On average, it takes 10 to 13 years from the onset of the disease to the diagnosis, often with a high impact on the patient's quality of life. But the burden does not stop there.

An expensive disease

There is currently no cure for coeliac disease; the only option is to stay away from gluten. No bread, no cake, no pasta, no beer.

But gluten-free alternatives are far from cheap. In Hamburg, for instance, a kilogram of gluten-free bread costs at least €10.

“With gluten-free products, I had to increase my grocery budget,” Iva said. “To balance my finances, I don't eat out so often as I used to.”

For Susanna Neuhold, these prices can be explained. “Not only is the raw material – rice, corn, quinoa – more expensive, but it also has to be controlled,” she said. Producers must also make sure no gluten gets into the food during manufacturing.

Support varies heavily across Europe. In some countries, people diagnosed with coeliac disease receive no financial help at all; in others, they get a monthly allowance to compensate for the price difference of gluten-free food. But it can quickly become an administrative burden.

France, for instance, offers patients up to €45 per month. “To be reimbursed, however, I have to scan and send my receipts every month,” said Muriel, actress and marketing professional living in Paris. “It is a bit absurd when I think that I will now have to repeat this procedure every month for the rest of my life.”

For Iva, there isn't much to expect from Germany's public healthcare system either, apart from a discount on appointments with a nutritionist.

Italy’s coeliac paradise

Italy may be the best option in Europe for people with coeliac disease, thanks to its practical approach. Once diagnosed, patients get between €75 and €124 a month, depending on their age and gender, credited directly to their health insurance card.

“When I do my groceries, I can pay for my gluten-free products directly with my insurance card,” Neuhold explained.

Italians are also ahead when it comes to public awareness of the disease. “This has been possible thanks to the efforts made to detect it and adapted policies,” Neuhold said.

Most of Italy's current policies on coeliac disease come from a law adopted in 2005. In its first article, the legislation recognises coeliac disease as a “social disease” – one with a negative impact on social and economic life. As a result, from health professionals to caterers through the food industry, everyone is expected to take their part.

Schools, hospitals and other public catering services must provide gluten-free options, while the Italian Coeliac Association trains cooks and waiters to ensure a safe offer.

“We still have to fight against growing disinformation about the disease,” said Neuhold. Coeliac disease is still often dismissed as a lifestyle choice.

It is an idea that strikes a chord with Iva. “I wish people and society in general would show understanding, so I don’t always have to justify myself.”