Living with celiac

Stephanie Patterson’s celiac disease went undiagnosed for 10 painful years, mostly by Patterson herself.

“Bad things were happening to my body,” said the administrative assistant for Messiah’s occupational therapy and dietetic internship programs. “I was anemic. My hair was falling out.”

She’d get sick after a trip to Dairy Queen and figure she had a milk allergy. She’d attribute her endless abdominal pain to the aftereffects of her two pregnancies.

“I chalked up every single thing to something else,” she said, not realizing how abnormal her symptoms were. 

The silence also was a form of refusal. Fifteen years ago, Patterson’s mother was diagnosed with celiac disease, an autoimmune disorder that attacks the small intestine and often is passed down genetically.

“I helped her through it,” Patterson said. “I knew all about it and was just in complete denial that it could ever happen to me.”

When Patterson finally sought the blood test and endoscopy that confirmed her own celiac diagnosis, it was less a shock than acceptance, one that was long in coming.

The tests confirmed that her body was rejecting gluten, a protein found in wheat, barley, rye and other grains. Her immune system targeted the protein like an unwelcome invader, causing the stomach pain. At DQ, it wasn’t the ice cream attacking her system. It was the cones.

Things changed overnight,” she explained. “I learned in that moment that I’d never eat Subway again, never get another cheddar bay biscuit from Red Lobster, never eat another Panera grilled cheese.

That day, she started a gluten-free diet. Soon, the previous 10 years of symptoms began to fall away. One of those symptoms, which she didn’t even realize she had, was lethargy.

“I would sleep for nine or more hours, take a nap after work and then be ready for bed at 8:30 again that night,” said Patterson. “It was about two weeks after I was gluten-free when I noticed I actually wanted to take a walk or do something. My stomach pain went away at about the same time. It was really gradual, but within two months or so I felt much, much better.”

What is gluten?

For those of us not especially well-versed in the science of food, gluten is what makes dough elastic and bread chewy. For those forced to think about it daily, it’s the molecule that causes the immune system to fire off a defensive response that flattens and damages the villi, the finger-like projections lining the small intestine. Michael Howell ’97, a biology and chemistry grad from Messiah who holds a Ph.D. in microbiology and immunology, compares it to an anaphylactic reaction in the intestines.

“It’s a massive inflammatory response,” said Howell, senior director of translational research at the Incyte Corporation. “It leads to incredible discomfort, the epithelial barrier of the intestine being broken down and, ultimately, a lot of complications that may require hospitalization.”

Once these villi are injured, the small intestine can’t absorb crucial nutrients, leading to diarrhea, fatigue, weight loss, bloating, gas and nausea.

“It wreaks havoc on your immune system,” said Joy Bozzo ’07, a pre-med major who is now a licensed naturopathic doctor specializing in autoimmune disease in Santa Monica, California. “For whatever reason — stress, infection, trauma, maybe lifestyle habits — your immune system loses the ability to distinguish itself from the non-self. Your body is saying, ‘Is this me?’”

Symptoms vary from person to person, Howell says. Some patients can manage the problem with over-the-counter medication, while others require consistent monitoring by medical staff. More than half of adults with celiac also see symptoms such as loss of bone density, infertility and anemia; some research indicates it can even lead to neurologic disease or cancer.

“It’s very stressful, and it’s life-changing,” said Nicole Benner, registered dietitian and campus nutritionist. “It’s also emotionally and socially impactful.”

In addition to the health problems, celiac means a lifetime of reading product labels and asking waiters specific questions about what’s in the salad dressing. Just one molecule of gluten can trigger an adverse reaction.

Celiac is estimated to affect 3 million Americans and one percent of the world’s population, though more have a lower-acuity version called a “gluten sensitivity.” According to celiac.org, “People with a first-degree relative with celiac disease (parent, child, sibling) have a 1 in 10 risk of developing celiac disease,” which is probably how Patterson ended up with it, though its exact cause remains elusive. An estimated 2.5 million Americans remain undiagnosed. Researchers believe that as few as 20 percent of sufferers ever receive a proper diagnosis.

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.”