The other side of celiac disease: this is how it affects social life

When Aina Fernández (32 years old) was diagnosed with celiac disease as a teenager, restaurants with gluten-free options were scarce.

Oliver Thansan
Oliver Thansan
15 May 2024 Wednesday 10:27
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The other side of celiac disease: this is how it affects social life

When Aina Fernández (32 years old) was diagnosed with celiac disease as a teenager, restaurants with gluten-free options were scarce. In the fast food places that she frequented with her friends, she couldn't order anything and they wouldn't let her bring her own food either. “It was hard to adjust,” she explains. Almost 20 years later, the situation has changed, but she believes that there is still a long way to go and that celiac disease is surrounded by a certain misunderstanding. “One day they wouldn't let me eat at a restaurant because they couldn't assure me that any of their dishes were gluten-free. She doesn't want to play the game and prefers to say no to you. That denotes not only a lack of professionalism, but also of empathy,” she says.

For Queralt Ibánez (27 years old), the lack of options is more evident when he travels abroad, although he recognizes that here he usually only goes to trusted restaurants. “This way I save myself from having to explain to the waiter what gluten is and where it is found. It is a situation that I am too lazy to face,” he says. Anna María Gutiérrez (59 years old) coincides with her, who was diagnosed with celiac disease just a couple of months ago. “I have a hard time finding bars where I can eat a gluten-free sandwich and when I do, they charge me almost six euros for a muffin. Other times they have served me a potato omelet and they have not told me that they have thickened the egg with flour; or I have asked for a gluten-free beer and they have told me that they did not have it due to ignorance, when it was on the menu.”

Their experiences are different, but Anna, Aina and Queralt agree that, in one way or another, celiac disease has conditioned them when it comes to making plans or relating. And they are not the only ones. According to a recent survey by the Federation of Celiac Associations of Spain (FACE), 80% of people who suffer from this pathology claim that their social life has been limited by the fact of being celiac. “Many establishments are not very careful when handling food, which generates great mistrust among the celiac community when it comes to eating out,” explains Aaron Santana, president of FACE. “There is a lot of cross contamination. They use the same basket for bread with gluten and bread without it; or they cut both with the same knife. Going to a site may require prior research,” he adds.

“I get the feeling that restaurateurs take veganism more seriously than celiac disease,” Fernández continues. ”Obviously, I don't want to downplay the importance of the decision to stop eating meat for ethical reasons, but I think it is important that if the vegan public is cared for, the celiac public is equally cared for.”

But this misunderstanding around celiac disease is not only limited to restoration. “It is an illness that still carries a certain social stigma,” says Santana. And, in addition to having to invest more time in finding restaurants where they can eat, sometimes they have to put up with certain comments. “You have to constantly justify yourself and when you are strict about what you can and cannot eat, they tell you that it's no big deal, that you are exaggerating. Would you tell a person with a leg in a cast that they are exaggerating? "Let him start running?" Fernández laments. “A lot of older people think it's nonsense. At first my grandparents had a hard time understanding why I couldn't eat certain things,” adds Ibáñez.

These situations can make a celiac sufferer think more than twice when making plans. “Since I was diagnosed, I feel that it is a little more difficult for me to meet people to go out to eat. It even makes you feel a little anxious,” admits Gutiérrez. “Sometimes I have felt frustration, sadness and even anger,” says Fernández, on his part. And, according to the FACE survey, 65% of those surveyed consider that his illness has affected his mental health in some way.

The psychologist and regular collaborator of the Celiac Association of Madrid, Beatriz Arteaga, explains other circumstances that can trigger these negative feelings. “At first it can be a shock and it is common to feel sad about how your life has changed. Those who accuse celiacs of being exaggerated do not help either. These types of comments can lead a person with celiac disease to feel guilty or be forced to eat something that their pathology does not allow for fear of facing uncomfortable situations," says the expert.

Added to this is the high price of gluten-free products, which generates great frustration among those affected. According to another FACE study, the purchase of these specific foods means an additional 1,087 euros per year for a celiac patient. “And that's without adding that it is a pathology that currently has no cure. It is not the same as someone who is lactose intolerant, who can take a pill (lactase) and eat the products that normally make them uncomfortable. Our only medicine is to follow a gluten-free diet and, if we don't, it can cause serious long-term health problems," says the FACE president.

In short, celiac disease can have an impact beyond diet and emotionally affect people who suffer from it. As a psychologist, Beatriz Arteaga recommends allowing yourself to feel bad, connecting with the sadness that this change in life may imply or the unpleasant situations that go hand in hand with the illness. "But if this state of mind lasts longer, it is advisable to go to a specialist," she concludes.