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What is it like for those whose list of prohibited foods sometimes seems longer than the list of acceptable ones? For whom any invitation to visit or a meal in a restaurant entails a lot of inconvenience? Several people diagnosed with celiac disease talk about their experiences and achievements, about the inconvenience and feeling of being left out, and about what it means to be much more attentive to yourself.
silent disease
Celiac disease is a disease that has a special status. It may not manifest itself for years, quietly and slowly destroying the intestines. It cannot be cured, but can be “lulled” with the help of a special diet.
Often people treat the symptoms of the disease as small, quite common difficulties (bloating, diarrhea, fatigue), and usually they even manage to adapt to them. So it was with 32-year-old Svetlana: she was diagnosed “accidentally” – the girl came to donate blood for a sick friend, and she was diagnosed with serious anemia. She underwent a full examination, as a result of which gluten intolerance was discovered.
“When a person is told about this disease, he must first realize that he is sick, and then that he has celiac disease,” Svetlana recalls. – At first I was seized with panic, because I did not consider myself sick at all. There were small problems, but I lived with them and did not particularly worry about this.”
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Talk about your problems
For other people, on the contrary, the final diagnosis brings a sense of relief: after many years of inexplicable torment, they can finally understand what is happening to them. But the treatment is not subject to discussion – a gluten-free diet. Passing this stage is often quite difficult. “I felt relieved that I finally knew the cause of my many years of suffering. But the thought of having to radically change my diet made me panic. In addition, I was also worried about the need to delve into the composition of each product that I buy, ”admits 40-year-old Larisa. Many people with celiac disease report “feeling left out” when they find out how many foods are off limits. Necessary, restrictive, daily and… for life – this is what a gluten-free diet means.
Social disease
A special story – lunch / dinner in the company: the need for special food can cause a person to have a painful feeling that he is not like everyone else. A patient with celiac disease is forced to carefully read the inscriptions on food packages, in a restaurant meticulously ask the waiter about the composition of the dish, and when he comes to visit, take gluten-free cookies out of his bag. All these worries exacerbate his sense of separation from the rest of society. “I try to avoid joint meals, because I have to invent something all the time,” Larisa shares.
To purely practical difficulties, psychological discomfort is added: the infringement from the fact that a person cannot afford everything he wants, the feeling that he attracts attention. Many people with celiac disease talk about this additional and constant burden – the need to explain what they are sick with. At the same time, they are forced to skillfully dose out information so that, on the one hand, they do not underestimate the severity of the disease – then others will not take seriously the restrictions that it imposes, and on the other hand, not overly dramatize. “If I overdo it with warnings, people around me start to worry too much: they think that I am seriously ill,” laughs 25-year-old Karina. And someone is oppressed by the very need to justify and explain. “In the beginning, you get very tired of having to repeat the same thing endlessly.”
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The main thing is to get used to
Strictly following a diet is largely a matter of balancing “price” and benefit. The price is a feeling of deprivation, infringement and complexity of the organization of the food process. The benefit is good health. If a celiac patient makes a choice in favor of a diet, the disease ceases to seem so unbearable. “I began to feel much better, it inspires, motivates me to keep going,” Svetlana explains.
“As a rule, we intuitively do not like those products that do not benefit us, do not give us joy or satisfaction. Therefore, people do not suffer so much from prohibitions: when they eat foods that are not recommended for them, they feel worse, says psychoanalyst Gérard Apfeldorfer. “Having experienced the harm of such products, people say goodbye to them more easily.” Other factors also contribute to the successful fight against the disease. For example, age. Those who learn about their disease before the age of 25 perceive the limitations associated with it more easily. The sooner the patient gets used to the diet, the more easily they tolerate it, and the feeling of loss is not experienced so acutely by them.
Is it a matter of character?
“After several years of a strict diet, I learned to find a replacement for all products and enjoy the food that I eat. I am sure that there are much more serious diseases in the world, and I try to focus on the advantages of my position, ”says Svetlana. Maybe it is this approach that helps to calmly relate to the disease?
“Natural curiosity helped me to return the feeling of joy from food: at some point, there was an interest at all costs to find something new for myself,” says Karina. “Today I have a whole range of safe treats at my disposal.” The ability to replace one ingredient with another, to invent, to seek out, to focus on what is possible, and not on what is impossible – without this, it becomes more difficult to cope with the disease. By developing culinary ingenuity, discovering new taste pleasures, we thereby take the disease into our own hands, and, therefore, suffer less from it.
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Organic products
Is there any benefit in celiac disease? All our interlocutors answered this strange question in the affirmative. It turns out that the illness made them pay more attention to what they eat. “I think about eating healthy, I cook more. I carefully read the inscriptions on the packages, look at the composition of products, especially industrial production, says 45-year-old Vera. – Not only gluten is targeted, but also other harmful substances that have been talked about for so many years: trans fats, dyes, food additives. This is important not only for me, but for the whole family. We are what we eat, in order to feel good, you need to eat right.”
Karina’s celiac disease helps her take better care of her body. “I try to cook everything myself and buy as few convenience foods as possible. My mom likes to say that my illness allowed us to discover many new tastes, we remembered what we cooked before, and the youngest in the family now eat much less of any nasty things.
New and well-forgotten old tastes, dietary products, the need to give up wheat flour, which means the ability to fantasize, invent and vary, open up truly new culinary horizons for celiac patients and their families. Saying goodbye to gluten makes them more inquisitive. In addition, today the inscriptions on the packages are read not only by sick people: proper nutrition, the purchase of environmentally friendly and natural products is becoming one of the main trends of our time.