Jessica A. Ness
Aberdeen, South Dakota, United States
“You just ate chocolate cake.”
Gluten is the new answer to all that is wrong with what people are eating. You want to lose weight? Go gluten free. You cannot sleep, have frequent stomach aches, or want to rule the world? Go gluten free. Some claims are excessive but many others are common. Gluten is a natural protein found in all varieties of wheat, rye, and barley. It has been cast as a villain in a number of scenarios, but is it really bad for the general population? It is worth considering the stories of people that have a serious condition caused by gluten intolerance versus unsubstantiated health claims.
A twenty-year old college student has a lot going on. She lives with her mother who is spending all of her time with her grandmother, who is very ill, leaving the young woman to take care of the house and run errands for both homes. She is taking her niece to school and helping her with homework while doing her own. And she is sick; she is exhausted, depressed, and has serious stomach issues. The symptoms do not seem to be related and are getting worse. No one notices at first, and she does not say anything. Eventually someone sends the young woman to the doctor, who asks, “What foods cause the symptoms?” The answer: everything. After months of tests and poking and prodding she finally receives a diagnosis: celiac sprue.
For 1 in every 133 people, gluten truly is a villain. It sneaks into the most random foods and drinks, hiding in minute quantities and dangerous for people with celiac sprue, also known as celiac disease. Celiac disease is an autoimmune disorder that makes it impossible for the body to tolerate gluten. Eating gluten causes the body of a person with this condition to attack itself, specifically the villi of the small intestine. The villi are then not able to absorb nutrients, resulting in symptoms such as depression, nausea, a myriad of gastrointestinal issues, failure to thrive in children, anemia, infertility, fatigue, dermatitis herpetiformis (an itchy, blistering skin rash), and canker sores. There is no cure for celiac disease. The only treatment is a gluten free diet for life.
The young woman has just learned she cannot have bread, cakes, cookies, pizza, or pasta. “How can I live like this? What am I going to do?” she asks herself. “Those donut holes look so good . . . just one can’t hurt.” Thirty minutes later, just one can hurt. It is embarrassing to run to the bathroom to vomit in the middle of a card game.
A gluten free diet may sound easy, given all of the options out there and the hype in the media. But it is not easy; it means a lifetime of reading labels and forgoing homemade treats with questionable ingredients. Different brands of the same product might have an addition gluten surprise: Ore-Ida French fries are okay, but Great Value fries are not. For a long time Doritos Nacho Cheese chips were on the “no go” list, while Doritos Spicy Nacho Cheese chips were fine. It is not just bread and cakes and cookies that are soldiers in the gluten army. Condensed soup is dangerous. The prevalent use of wheat as a thickening agent strikes fear into the heart and gut of every person with celiac disease. The problem is that even a small amount can cause issues. Pouring beer on grilling meat can cause a reaction, even if it was not poured on the “gluten free” portion. Beer is still on the grill and cannot be burned off; the grill would need a very thorough cleaning to remove the particles. Frying something in a communal fryer that has not been cleaned can cause gluten to attach itself to the food. I have been a victim to both of these unintentional contaminations. A mix up in containers, one holding gluten free and another with normal pancakes, causes great discomfort and two days of sick leave.
A teen, newly diagnosed with celiac disease, has begun to explore gluten free eating beyond rice, vegetables, and fresh fruit. He is cooking and learning more, but he is human and makes mistakes. On a road trip he is eating Twizzlers, his favorite road snack, and starts to feel ill. “What is going on? I am so tired.” He checks the ingredients and reads the second one on the list: wheat starch. “Are you kidding me? I can’t have Twizzlers? This sucks.”
Cooking everything yourself in your own gluten free kitchen is one way to avoid contamination, but it is not a very fun way to live. So many social situations revolve around food that it is unrealistic to think that you will never eat anything prepared by a non-Celiac again. A major issue is that people on gluten free fad diets do not have as much at stake as Celiacs do. If a waiter brings them a salad with a crouton hidden at the bottom, they can just pick it out and go on living. For a Celiac, this is a bigger issue. Did the cook mix the whole salad with croutons and just pull the rest out? How sick is this going to make me? Will I make it to work tomorrow or will I have to call in sick because of this small, seemingly innocuous, crouton? In restaurants I have to make sure that the server understands that I am not on a fad diet, but that I have a verified medical condition. It is a big deal. Even if the establishment has a gluten free menu, there are still concerns. Is the kitchen using common equipment or counter space? Did the conscientious worker wearing gloves forget to change them between plates? Did a distributor change brands and now there is gluten in a dish? Gluten hides everywhere and it is up to us to do all we can to ensure that we do not get sick from it.
A five-year-old boy is diagnosed with celiac sprue. His mother learns all she can about it. The kitchen is cleaned of all gluten-containing food. The toaster and strainers are replaced and everything else is scrubbed down. The mother even goes gluten free herself to avoid transferring particles with kisses or from her hands. He is still getting sick. She packs a lunch and wraps everything in plastic and sends a clean placemat so it will be safe at school. He is still getting sick. Finally the doctor asks a question. “What is your morning routine?” She thinks about it and answers, “I get up, shower, get dressed, do my hair, wake my son, feed the fish, make breakfast, do my make-up, and take him to school.” The doctor suggests that she check her hair products, makeup, even the fish food—everything she comes in contact with. The culprit: the fish food. The remnants of fish food on her hands when she makes her son’s breakfast are causing a noticeable reaction in him.
It is not just the food that causes worry as a Celiac, but everything that you might ingest. Gluten hides everywhere—in makeup, lotion, shampoo, body wash, even toothpaste. You have to remember to ask the dentist if the polish and mouthwash are gluten free. And ask the pharmacist if the company uses gluten as a filler ingredient in your medications. When visiting non-Celiacs, you cannot use the butter or peanut butter unless it is in a squeeze bottle or brand new. Not all alcohol is safe. You cannot just have a beer with friends, you must bring your own not made with wheat, barley, or rye. Malt beverages are on the no go list. Wine is fine, if there is no added flavoring. You might have to check with the manufacturer because they are not required to put ingredient lists on alcohol.
Even with the severe issues that gluten can cause in a person with celiac disease, Hollywood seems to believe it is okay to joke about it. On an episode of a sitcom, the main characters are at a restaurant and have ordered a gluten free dish. They are very impressed with it. “This is gluten free?” they ask. “What’s your secret?” “Gluten, lots and lots of gluten. Basically it is all gluten.” This was meant as a joke to mock the fad dieters, but for someone with a medical condition, this is their worst fear when eating out: a chef who thinks their dietary restriction is a joke.
JESSICA A. NESS, BA, BS, is an administrative assistant by day and reader and writer by night. She has been living with celiac disease for thirteen years. She grew up in South Dakota with three siblings, two older and one younger. Jessica has always been an avid reader and loves to learn new things. She has tried to instill her two passions in those around her and is proud to have had some success in converting non-readers into readers.