Living with Celiac: What to do
The good news is, there’s a treatment, one that doesn’t require medication and surgery, one that some patients say provides relief within weeks.
“The standard of care medication is basically gluten avoidance,” said Howell. “Diet alone is often enough to resolve the majority of the symptoms.”
While they are not curing themselves, they are reducing the potential for a significant flare-up. That means no bread, cake, baked goods, beer, pasta, cereals, some hot dogs or cold cuts and even some toothpastes and medications. Gluten also can be present—but hidden—in preservatives, food starch and some vitamin and mineral supplements.
“You’ll never be able to eliminate all gluten,” said Benner. “The cross-contact is just so prevalent. But you can eliminate most of it.”
The process, as you might imagine, requires constant vigilance. “I’ve become really good at reading labels,” said accounting major Jocelyn Cribbs ’18. “Some people are worse off than I am and can’t be around gluten at all. I don’t have that severity, but you still have to watch for cross-contamination.”
Cribbs sticks with fruit yogurt and gluten-free bagels and muffins for breakfast; her lunch is usually soup, salad, grilled chicken or mashed potatoes. She gives Messiah high marks for its offerings and transparency regarding menus and meals. When Bozzo was a student in the mid-2000s, she says the school was still finding its way around gluten sensitivity. That’s no longer the case.
“Lottie [Nelson Dining Hall] is flat-out sensational when it comes to food allergies,” said Patterson. “I never feel full when I eat out at restaurants, but at Lottie there’s so much choice.”
In Lottie, gluten-free food is housed in a separate area to avoid cross-contamination, complete with a dedicated gluten-free fridge, toaster and waffle maker. Also, a new initiative, Net Nutrition, allows students and staff to inspect every ingredient in every meal. (See sidebar.)
“It’s not just gluten. There are alerts for people who are vegetarian or have a shellfish or peanut allergy,” said Cribbs.
That’s partly the work of Benner, whose job involves acting as a liaison between students and dining services. “In the case of celiac, I’m there to help them find what they need to get through the semester,” said Benner. She estimates half a dozen students each semester indicate being gluten-sensitive on their orientation questionnaires.
When Patterson adjusted her diet, she saw improvements within weeks. “My hair immediately stopped falling out. I wasn’t nauseated all the time. My skin cleared up. Mosquitoes stopped biting me all the time!” she laughed. “I can’t say whether that was the celiac, but prior to it I was a mosquito magnet.”
That sentiment speaks to the current state of celiac, both on campus and nationwide: serious yet manageable. Howell says pharmaceutical companies have recognized the unmet medical need associated with celiac and have increased their research efforts to identify potential therapies. In the meantime, patients continue with their current treatments.
“If I was going to have any lifelong illness, I’d take celiac again and again and again,” Patterson said. “I don’t have to take medication or see doctors, there’s no surgery. It’s just food.”
