“I cried at Olive Garden once. Everyone else was eating breadsticks and pasta and I swore I would never go back.”
Picture your favorite food. Now picture being told you can never eat this food again. Raeann Kramer, a junior at the University of Wisconsin-Madison experienced just that.
Kramer, like 18 million other Americans, suffers from non-celiac gluten sensitivity, or more plainly, gluten intolerance. NCGS, which is similar to celiac disease but with less severe effects, occurs when a person’s digestive system cannot tolerate gluten, a protein found in foods that have been processed from wheat, barley and rye.
Three ingredients doesn’t seem so bad, but next time you’re at a grocery store, check labels; you’d be surprised at some of the foods and products people suffering from NCGS or celiac disease have to permanently cross off their grocery lists. Other than obvious foods such as bread, pizza, pasta and cookies, certain soy sauces, pickles, hot dogs and even beauty products contain the protein. And to top off a college kid’s worst nightmare, guess what else contains gluten? Beer.
“Even though I don’t like [beer] I just can’t casually drink and hang out and it’s actually quite depressing. Especially game day,” Kramer said.
Shirley McCallum, a recently retired dietician of the American Family Children’s Hospital said the diagnosis of a food intolerance or allergy is much harder for adults than for children, largely because of the social effects.
“So much of our social life revolves around food and gathering with friends and family and if you’re limited in what you can eat you tend to feel somewhat left out,” McCallum said. She also added that it’s difficult for adults to deal with an intolerance or allergy because as years go on and “people become accustomed to eating a certain way their whole lives,” coping with a drastic diet change is challenging.
In addition to having NCGS, Kramer found out she was lactose intolerant her freshman year at UW-Madison after being unable to figure out constant bouts of sickness; but even with pills to help the lactose intolerance, Kramer experienced more on-and-off illness throughout her junior year, until finally after numerous doctor visits and tests, she was put on a trial-run gluten-free diet, and immediately noticed a positive difference.
“My test came back negative for celiac, but because I felt so much better after the gluten-free test they knew that was the problem,” Kramer said. Unfortunately for Kramer, unlike those with only lactose intolerance, she can’t pop a pill and eat a slice of pizza worry-free.
“They are doing research, but at this point … the gluten-free diet is the only treatment,” McCallum said.
Occasionally, Kramer breaks the no-gluten rule to sneak her favorite food, Topperstix cheese bread. The result is a day of stomach pain and discomfort. but she fortunately does not fall victim to the dangerous effects of “cheating” that a person with celiac disease encounters.
“There is a rare form of GI cancer, osteoporosis … is a problem; we see that in people that didn’t even realize. You would not want to have long term consequences from not following the diet,” McCallum said. One of the biggest pieces of advice McCallum gives to students with intolerances and allergies is to always plan ahead.
“It is probably the least compatible with being a college student because so much is spontaneous in the college setting, but kind of planning for spontaneous events will help,” McCallum said. She encourages her patients to pack a safe snack while walking around campus or a reserve of gluten-free food to prevent cheating, especially for those living in dorms. Calling restaurants ahead of time before a meal will also encourage proper handling of food and prevent cross-contamination. Less processed food and cooking for yourself are also tips McCallum provides.
“What you want to do is learn to cook so that you can make foods that you really like that will enhance your life,” McCallum said. “You will feel not like you’re deprived when you eat those foods.”
One of the struggles of celiac disease and NCGS is, frankly, taste. Take bread, for example. Latin for glue, gluten is the structure that gives regular bread its delicious airiness. Gluten-free bread lacks that structure, so it is very dense, and in most cases, not too appetizing. But McCallum notes huge improvements have been made recently, so there may be a light at the end of the gluten-free tunnel.
While that light may not be reached for several years, students on Madison’s campus can find sustenance from Gluten Free Badgers, an organization formed to support students experiencing difficulties with going gluten-free.
Hannah Bowman, a fourth-year graduate student at UW-Madison and treasurer of Gluten Free Badgers, found out she was gluten intolerant just after finishing her undergraduate degree at Purdue University. For her, it was a relief. After four years of tests, blood work and unidentified pain, Bowman decided to try out a gluten-free diet after reading about celiac disease symptoms.
“In the grand scheme of things, it’s an easier fix than surgery or having to take medicine,” Bowman said.
According to Bowman, GFB is made up of three parts. First, it acts as a support group for people who recently learned of their intolerance and helps them through the transition. Those new to UW can learn what to eat on campus.
Secondly, GFB is an advocacy group, that tries to work with the university to provide more options. “Food service on campus doesn’t do a good job and we’ve tried to talk to them about it, and it’s hard because of hundreds and hundreds of student workers who don’t really care,” Bowman said. She said working with the university has been difficult lately, as UW-Madison hasn’t made additional strides GFB has hoped for, especially after the construction of Gordon Commons and Dejope Hall; what Bowman described as “a perfect opportunity” to make gluten-free progress.
Lastly, GFB wants to help its members by having fun! The recent November meeting housed a themed potluck, where people brought in their favorite Thanksgiving food, but with a gluten-free twist.
“We didn’t have to worry about if it was safe, we could just eat a lot.”
Bowman said the December meeting will have a cookie swap, where members will decorate, trade and taste gluten-free goodies.
“It helped me, so I wanted to be able to help other people who had gone through the same thing,” Bowman said.
Bowman found out about GFB in 2011 from an acquaintance who was also gluten intolerant. Bowman eventually became the treasurer and was also in charge of setting up the organization’s website and Facebook page. She said GFB has over 200 members on their email list and over 200 likes on Facebook, but around 20 to 40 people normally show up to monthly meetings, and only about 30 people pay dues.
Dues and donations go toward putting together events; one idea Bowman mentioned was a tailgate in the fall, with the traditional brats, buns and beer, but all food would be gluten-free. Expensive products and a lack of funding make planning these events difficult.
“Part of our problem is we have a small group of people who are really motivated and do everything and then we have a lot of people who just show up for the free food,” Bowman said.
Luckily, GFB is fortunate to have sponsors and gluten-free companies donate food to provide at some of their meetings, which is useful for them because many of the foods are expensive.
Like Kramer, being a student makes paying for gluten-free difficult for Bowman, but cutting out processed foods does have its perks. “You’re cooking at home, you’re not going out to eat, you’re not eating a lot of bread and pasta and pizza and drinking beer all the time. You’re eating more fruits and vegetables and lean meat. Overall your nutrition goes up,” Bowman said.
Even with alternatives, students with intolerances and allergies can still dream about their long-lost favorite foods.
For Bowman, it’s Kraft Macaroni & Cheese “straight from the blue box,” donuts and “all the great-tasting Wisconsin beers.” For Kramer it’s Topperstix, Spongebob-shaped mac & cheese and quesadillas.
The final advice from a gluten-free veteran to a gluten-free rookie on campus? “First I’d give them a hug,” Kramer said. “I’d tell them to not eat gluten and to eat at The Old Fashioned because they have good gluten-free bread there and damn good hamburger buns.”