“Hey,” the smiling McDonald’s cashier greeted me, “what can I get you today?” 

“I would like to have that ice cream please,” I responded, pointing towards a picture. “Could you put it in a cup instead of the waffle cone, please? I am a gluten-free girl,” I explained. She nodded.

“Sure. Would that be all?”

A little while later, my order number was called out and I hurried to pick up the ice cream. There it was; ice cream inside a waffle cone flipped into a cup, upside down. That was surely not how I imagined it! The cashier didn’t know what “gluten-free” meant. Out of experience, I, having celiac disease, can claim that she is by far not the only person, who isn’t familiar with the term.

Throughout my life, I have heard a lot of explanations of what gluten is and where you can find it from people, who wanted to bake or cook for me. According to some of these theories, gluten is in milk with a fat percentage of more than 2.0, in vanilla sugar, vegetables, and paper cups. None of that is true. To clarify; gluten is a group of proteins, including prolamins and glutelins, which make up at least 75 percent of all the protein in bread wheat. It is found in various kinds of cereal grain, for example, wheat, barley, and rye. In baking, gluten’s main function is to provide structure and texture, keeping the item from being friable or collapsing under its weight. Since it is used so frequently to produce products that we eat almost every day, an average diet contains around 10-40 grams of gluten per day. People with celiac disease, on the other hand, should only consume about 6 milligrams a day. In celiac disease, the body reacts to gluten by damaging the small intestine, an organ found in the digestive system. Despite not being curable, a strictly gluten-free diet is the solution to all the occurring problems caused by the disease. Left undiagnosed, celiac disease, which is mostly spread through genetics, can cause severe complications.

A few of the first memories of my life show me, laying on my room’s cool floor with an aching stomach and tiredly sitting in my hammock. At night, I frequently sensed that bitter taste, which I would recognize immediately even today, lying on my tongue. Then, I had to be fast, hurried into the bathroom and tried to put my hair back before I started to throw up. My stomach was constantly bloated and there was no day going by without diarrhea. You could let me sleep for ten hours and I would still be tired and not have energy. Something was wrong with me, but my parents didn’t know what it was just then. Time passed by without anybody knowing what caused my miserable condition until my parents noticed eating habits that I was unconsciously developing; if there were vegetables served, I would pounce on the food, but whenever we had noodles, I barely ate. After a visit to the doctor, their guess was proven right; I had celiac disease. On the way home from the doctor’s appointment, we stopped at a local store, bought some gluten-free bread and started to adjust my diet on the same day. In a very short time, my health improved dramatically. I became an early bird, as active and full of energy as any other child my age. An aching stomach, lacking energy, throwing up, being bloated and having diarrhea - those are among the most common symptoms of celiac disease. Others include weight loss, delayed puberty, pain in joints, osteoporosis and even psychiatric disorders. Oftentimes, it is easiest to recognize celiac disease in children for in most cases, they show more obvious symptoms than adults, who sometimes barely show any or only after a long time of development. The disease can lead to infertility, nerve damage, weakening of bones, lactose intolerance, and skin rashes. While those symptoms and/or results are good hints on whether you are affected by celiac disease, it cannot be self-diagnosed. Usually, lab tests or imaging are required. Once diagnosed with celiac disease, one should start establishing a gluten-free diet as soon as possible like I did.

A lot of people ask me if I am frustrated about not being able to eat gluten. For a long time, my answer to this question was no. Eating gluten-free enables me to live normally and since I don’t even recall the taste of non-gluten free food, there is no missing it. Besides, there are a lot of gluten-free products available anywhere nowadays and their quality has already improved a lot from the time I was a toddler. But the older I get, the more I see the persisting issues that come with a gluten-free diet. While eating at home is not a problem, it gets more complicated when visiting a restaurant or fast food. Especially at fast-food restaurants I usually meet employees, who have never heard of the word “gluten-free”. If they don’t find an allergens list close by, they mostly claim that the restaurant doesn’t carry anything gluten-free, putting themselves out of risk. This way, I only ordered a salad at Taco Bells for one and a half years until a cashier told me about a gluten-free taco kind. It is regrettable that most of the new options and innovations at restaurants like gluten-free pizza dough, etc. don’t have any use for people, who are affected by celiac disease, if the employees of the restaurants aren’t informed about them because the customer either doesn’t get to know about their existence in the first place or can’t be sure of the employees preparing and handling the food appropriately. As a result, the selling rate is low, which puts the gluten-free options at risk of getting disestablished. In general, I often end up having to bring my own food when going out to eat while the others get to order anything they’d like, freshly made and still warm. While this is annoying, it becomes a real struggle on field trips and camps. Once, I almost couldn’t attend a summer program because there was no gluten-free food available. The manager stuck to her saucy statement, “This is not a diet cuisine”, so I had to provide own food for a whole week, and still pay the full tuition. Even ordinary things like visiting a friend are a little more complicated with celiac disease. Normally, kids accompany their friends home directly after school and have lunch with them but if I want to visit somebody, I either go home to eat first, bring my own lunch or wait until the evening when I return home. Many of my friend’s parents want to provide food for me instead because they feel like it is impolite to have me bring some. But often they don’t comprehend how a single negligence can cause symptoms to occur. Therefore, I try to keep an eye on the preparations of the food, which lets me seem picky or distrustful towards their abilities. Additionally, knowing what products are gluten-free and where to get them can be a real challenge. Not only my friend’s parents are having a hard time, trying to organize a meal, but sometimes even people, who are very experienced with gluten-free food like my mom and me are stumped for an answer to the question of whether I can eat something. Albeit the basic no-gos are learned quickly, it is tricky to keep track of all the chemical terms, artificial additives, preservatives and the different kinds of starches as well as their components. Reading through the ingredients list can take a long time, handbooks don’t stay up-to-date with all the new items on the market and on internet forums different user’s entries tend to not match each other, causing even more confusion. Labels or symbols on the packaging bring some light into the dark and save lots of time in the store when organizing a gluten-free meal. Unfortunately, by far not all companies provide those little, but extremely helpful indicators or only use it to justify higher pricing for their products, which leads us to the next issue. 

Gluten-free food is by far more expensive than “normal” food. The price for it being twice as high is more standard than it is a rarity. Once, I went to the supermarket to buy bread, but the only package left did not have a price label on it. “How much can it cost? It’s just a small, normal bread,” I thought and took it. At the checkout, my jaw dropped; 10$ for ten small slices of bread! People with celiac disease being dependent on it and others, who voluntarily decide to eat gluten-free, willing to pay a lot, are spending an excessively high amount of money for products with a gluten-free label. Through the media, the diet gets recommended a lot, sometimes even glorified. People are led to believe myths that say eating gluten-free will make them thinner, healthier, happier or, rich, which is bizarre. Experts strongly advise avoiding living gluten-free if not intolerant, because the substitution of gluten usually requires more sugar and additives than in normal food. Whether the people follow a trend or try to improve their health; the increasing request for gluten-free products and the acceptance of the high pricing rise the living cost of a person with celiac disease, who is dependent on this special food. When I talked to my dad about wanting to be a professional dancer, he responded that I would probably not make enough money to afford living gluten-free in this career field because dancers are usually paid less than the average person. This thought made me very sad. I and so many other people too are dependent on gluten-free food. Without it, we damage our organs, lose the ability to use the nutrients in our food, and have to deal with any other symptoms. We are forced to pay whatever price the industry demands. I felt like a marionette, tied to strings that lie in someone else’s hands. Do I really have to give up my dream because of not being able to digest some proteins? What about people with celiac disease, who are poorer than me and can’t afford their so badly needed food?

To come to an end, I would like to state that celiac disease is nothing bad and does not prevent the affected people from living a completely normal life, enjoying food, being healthy and feeling happy. Even though it does require some getting used to, the disease is not an obstacle if it’s diagnosed and the nutrition adjusted. The true problem with it is not the food itself, but the lack of information of people at (fast food) restaurants, the infrequency of labels on food packaging, the myths about gluten-free food as well as its glorification, and the industry, which cruelly takes advantage of the dependency on gluten-free products. But these issues can be resolved if the people in charge just try a little harder and get acquainted with the problems a gluten intolerant person may have to face. I firmly believe that as a society in the 21st century, we should be able to not disadvantage people because of microscopic parts in their bodies that can’t deal with a protein group.