As awareness about gluten sensitivity grows, Syracuse University offers more options

Carly Shapiro felt sick. Again.

She knew she shouldn’t have eaten that bagel, but it had looked so good! Her friends had suggested Bruegger’s for breakfast—what else was she supposed to eat there?

Now, though, the nausea hit with full force. Doubled over in pain, she ran to the bathroom.

Shapiro knew she would have to see the doctor again. She knew he would probably confirm her fears and issue the ultimatum she had dreaded for eight years.

“You have to go entirely gluten-free or else you’re going to get Crohn’s,” her doctor said, “And then it’s going to get worse than you can imagine.”

Soon, some may be celebrating the impending end of the decision to give up a certain food for Lent, but it’s now been four years – not just six weeks -- since senior management major Shapiro has eaten gluten, a protein found in foods processed from wheat and related grains.

Today, jumping on the gluten-free bandwagon may seem like an easy thing to do -- Syracuse University, for example, provides a myriad of accommodations. But 11 years ago, when gluten sensitivities were not common knowledge, a gluten-free diet felt like a punishment, not a fad.

Between 5 and 10 percent of all people suffer from some form of gluten sensitivity, according to a study conducted by Dr. Alessio Fasano, medical director of the University of Maryland’s Center for Celiac Research, and Peter Green, director of the Celiac Disease Center. Gluten allergies exist in a broad spectrum though, with minor sensitivities at one end to celiac disease at the other, according to Kris Gaziano, a Boston-based health coach specializing in gluten sensitivities. For those with celiac, eating grain-based products containing gluten damages the small intestine. Individuals with gluten sensitivity can experience varied combinations of symptoms though, making it difficult to identify. And the symptoms for gluten sensitivities—bloating, diarrhea, depression, exhaustion, and anemia, among others—are also symptoms for other diseases, according to the National Foundation for Celiac Awareness.

As a result, it took time before doctors correctly diagnosed Shapiro, even though her gluten intolerance began taking a toll on her health immediately after birth. She was regularly in and out of the hospital with ear infections, colic, incessant crying, and reflux. Throughout childhood, doctors gave different opinions and prescribed different tests. Anemia? Crohn’s? Irritable Bowel Syndrome? Chronic Fatigue Syndrome? All the results proved negative. 

Her parents decided to stray from traditional Western medicine when Shapiro got older: she visited a chiropractor to get weekly adjustments, took natural supplements and vitamins, cut dairy products out of her diet and, later, tried acupuncture.  Nothing worked completely.

Shapiro still struggled in school: she had difficulty paying attention and grasping information. She felt bloated and suffered constant nausea. So much fluid clogged her ears that she heard and pronounced words with difficulty.  Her vision blurred, her legs cramped, and her head ached. She always felt lethargic, dragging through days.

“Instead of wanting to go and play with friends, I often would be so tired I would have to come home and sleep,” Shapiro said.

Finally, Shapiro’s chiropractor suggested seeing an allergist.

“I knew there had to be an answer,” said Diane Shapiro, Carly’s mother, who searched for a holistic doctor to find the cause of her daughter’s symptoms.

When the new doctor tested her with skin patches, he found she had general sensitivity to wheat. When she was 10, Shapiro took a newly available blood test, which showed she had a major intolerance for gluten and soy. Finally, Shapiro was given a diagnosis: gluten intolerance. At that time, gluten intolerance was relatively unheard of, and celiac testing was brand new in the U.S., Diane Shapiro said. Regardless, finding an answer was a relief.

Doctors immediately instructed Shapiro to start a gluten-free diet. No more bread, pasta or other wheat-containing foods—a prison sentence to a 10-year-old living in a gluten-heavy world.

At that time, stores and restaurants offered limited gluten-free substitutes. Bread tasted like cardboard, Shapiro said. She packed lunch for school every day, because she couldn’t eat anything the cafeteria served. Salads and vegetables provided her main options.

“But at 10 years old,” she said, “I wasn’t dying to eat salad.”

Children find eating gluten-free especially challenging because of the social constrictions, health coach Gaziano said. Not being able to eat what other children eat prompts feelings of deprivation, especially in environments where everyone around them is eating the same tasty “junk” foods like pizza, mozzarella sticks and birthday cake.

For these reasons, Shapiro regularly broke her diet, wolfing down chicken fingers and the occasional bagel, meaning that she often still felt sick, tired, and unable to focus.

“But it wasn’t bad enough to stop cheating,” her mother said.

Visits to the stomach doctor continued. He ran tests again. And again. All only confirmed what they already knew—Carly would continue to be sick as long as she continued to ingest gluten.

At 18, Shapiro left her Long Island home for Syracuse University as a freshman—and her stomach problems rapidly spiraled out of control.

“She had no respite from gluten like she had at home,” Diane Shapiro said. “The responsibility was solely on her. Now it was her choice.”

There was no g-free section in the dining halls at that time.  Staff members usually returned blank stares in reply to her query: “Is this gluten-free?” So, Shapiro continued to indulge in gluten products

During her freshman year, Shapiro grew so sick she almost left school permanently because of the stress of traveling home almost every weekend for doctor’s appointments. Her blurred vision returned, as did the unbearable stomach pains.

It was at this point that Shapiro’s doctor finally gave her the ultimatum. Shapiro regained her strength, and finally accepted that she had to live completely gluten free.

“It’s definitely a lifestyle,” Shapiro said. “It takes time to adapt but, thankfully, it’s 100 percent easier now than it was even a year ago.”

As more students report having gluten sensitivities and celiac, the university has responded. SU now offers a gluten-free line at Ernie Davis Dining Hall, and registered dieticians continue to work one-on-one with students to figure out what works best for gluten sensitivities. This includes the university buying specific g-free foods and providing amenities like toasters designated for only g-free breads to prevent cross-contamination, according to Ruth Sullivan, registered dietician of Syracuse University Food Services.

There are hundreds of gluten-free substitutes for bagels, pasta, pizza, brownies, cupcakes and cookies on the market—anything Shapiro could possibly imagine. The gluten-free aisle of Wegman’s is packed full of hundreds of products and brands—Udi’s, Tinkyada, Glutino, and more. They don’t taste exactly the same as the real thing, Shapiro says, but she’ll take it. 

“I don’t feel like I’m missing out anymore,” she said.

Her health improved dramatically too. No more constant nausea or bloating and her energy levels have risen—she can now stay up later and wake up earlier. Her focus has increased—she can pay attention “10,000 times better” and even made all A’s last semester.

“Carly is a whole different person now,” her mother said.

Shapiro launched Go G-Free With Me, a blog which highlights and reviews different gluten-free restaurants she has dined at across the country, on Jan. 22.

 “I’ve just tried so many things over these years and I’ve gone to so many places, I just decided that it would be a smart idea to help other people when they’re traveling,” she said. 

 Although Shapiro still can’t walk into Bruegger’s and mow down a Signature Bagel, at least she can now confidently grab a pack at Wegman’s without worrying about feeling sick.