The pain that took over my entire body didn’t bother me anymore. Four years of continuous pain made me give up on trying to figure out how I could prevent this pain from occurring. Sharp stomach jabs made me want to throw up. Bloating made me feel as if I had my own personal soccer ball inside my stomach. I felt helpless in my own body as the only thing I wanted to do was sleep; I felt as if I was slowly deteriorating.
I knew something was wrong with me, but I couldn’t put the pieces together. As years passed by, the most unsettling part was that the doctors couldn’t seem to figure out what was wrong with me either. I began to lose hope.
After countless visits and examinations to multiple doctors, a few weeks before my 22nd birthday, my physician finally informed me that I tested positive for celiac disease. I was confused. After 22 years, I had just tested positive for a disease that I knew nothing about.
According to the National Foundation for Celiac Awareness, only 1 in 133 Americans have celiac disease. Not only is that 1 percent of America’s population, but also about 83 percent of Americans who have celiac disease are either undiagnosed or misdiagnosed with other conditions.
“Celiac disease is an inherited autoimmune disorder that affects the digestive process of the small intestine,” according to the University of Chicago Celiac Disease Center. “When a person who has celiac disease consumes gluten, a protein found in wheat, rye and barley, the individual’s immune system responds by attacking the small intestine and inhibiting the absorption of important nutrients into the body.”
It all clicked together. My weight had fluctuated for the past four years, which I found unsettling, but my physicians seemed to find it “normal.” I was “in shape and incredibly active,” as doctors repeatedly told me.
Even after transferring schools and living back home, I still had discomfort and uneasiness in my stomach. After I ate out with friends and consumed alcohol, such as beer or dark liquors, there didn’t seem to be a happy medium. The only time I found comfort was when I ate at home, where my mother continually cooked gluten-free meals.
I put two and two together to realize that I had inherited celiac disease. My mother, who was diagnosed 10 years ago with celiac disease, has been living with the disease ever since. My grandfather dealt with it for more than half of his life, but unfortunately had died of intestinal cancer because he did not know he had celiac disease until it was too late. “5-22% of celiac patients have an immediate family member (1st degree relative) who also has celiac,” according to the National Foundation for Celiac Awareness. I was a part of that percentage.
The Mayo Clinic located in Rochester, Minnesota specializes in medical research for the diagnosis of celiac disease and is known as one of the largest treatment centers in the United States. “Celiac disease is becoming a major public issue and studies show four times the incidence compared to the 1950s, with fatal complications if it goes untreated,” says Joseph Murray, M.D., a specialized Mayo Clinic gastroenterologist. Not only has the number of people living with celiac disease increased, but it is now more commonly found in different age groups. “The cause is unknown, but Mayo investigators are trying to discover why celiac disease is on the rise,” Dr. Murray says.
I found out celiac disease had no pharmaceutical cures, but only to maintain a gluten-free diet. My mother helped me be more aware of the foods that I ate just as she did on a normal basis. A gluten-free diet consists of any food that is not baked in flour and eliminates wheat, barley or rye from my diet. Every meal I ate, I learned I had to incorporate fruits and vegetables, dairy products, fresh meat, or as my physician told me, “keep the plate colorful.”
After transitioning and transferring to Towson University last September, I was worried that I would not be able to eat as much on campus and if my food options would be limited, but I was completely wrong.
Chris Shoul, Towson University’s District Chef, constantly meets with students inquiring about their special dietary needs each semester. Answering all questions without hesitation, part of Chris’ job is to make each student feel more comfortable ensuring students with special dietary accommodations are able to eat on-campus.
“I discuss personal options and take requests from every student I meet with to make sure they are individually taken care of as much as is in our control,” explains Shoul. “If a student requests that we carry a certain food item that they are familiar with eating at home, we will make it a point to try and source that product for them and keep it aside for them when they come in.”
Not only did I feel comfortable knowing I would be able to have gluten-free options, but knowing that there were other Towson University students like me dealing with celiac disease made me more comfortable.
Just like me, Stephanie Bisselle, a freshman at Towson University had inherited celiac disease from her mother. Living with celiac disease for almost five years, she has learned eating anything that could possibly contain gluten is not worth the pain. “I constantly had stomach pains and suddenly became very sick, no one knew why.”
“Celiac patients may suffer severe stomach pain and diarrhea if they eat even traces of the protein gluten, which is found in wheat, rye, barley and in many supermarket foods,” according to the Mayo Clinic’s website. “Once gluten is eliminated from the diet, celiac disease is usually manageable.”
“Sometimes, you just have to be careful when getting food for chances of possible cross-contamination,” says Bisselle. “It isn’t too difficult though because I tend to keep a lot of gluten-free food in my dorm.”
Aaron Mazer having lived with celiac disease since March 2007 was the first in his family to have been diagnosed with celiac disease.
Mazer, a junior at Towson University who lives off-campus, makes all of his meals at his apartment. “I definitely prefer to make my own food because I have full control over my diet that way and don’t have to worry about anything being contaminated,” says Aaron. “I control the ingredients that go into my food as opposed to leaving it up to a chef.”
“When eating out with friends, the most important thing to remember is to ask as many questions as you need to,” explains Aaron. “It never hurts to bother the waiters or waitresses because they are there to help, and in most cases, know the answers. It is always better to ask than to assume something is alright when it might actually be breaded or have other gluten in it.”
Throughout the past six years, Towson University’s dining hall staff director John Brady recommends prospective or returning students with special dietary needs to go set up meetings with certain dining hall managers and chefs to review the special products, accommodations and to create individual arrangements to strive to its fullest potential to make each program succeed.
“The key to us being able to provide the most for our guests is communication because the more feedback we receive and the more heads-up we can get, all options become plentiful,” explain Chris Shoul. “We are willing to do anything reasonable to accommodate as long as there is constant communication.”
Being at Towson University makes me feel like I’m back at home with the different variety and satisfaction of the food options that are available to me. I’m able to enjoy my college experience because I don’t have to worry about finding a location or having to worry what I can or cannot eat. When I was diagnosed with celiac disease, I thought it was going to be the biggest struggle into having to find food that I can eat, but looking back on it now; having celiac disease has 100 percent changed me. I’ve never felt more alive into being able to control what goes in my diet.