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Life StoryOct/Nov 2011 Issue

A Gluten-Free, Dairy-Free Love Story

When Jessica Montague phoned her parents to say she was sick and needed to be picked up from college, a three hour drive from their home in northwest Ohio, it wasn’t the first time Deb and Dar Nevergall had received such a call. Jessica, then a freshman at Bethel College in Mishawaka, Indiana, had been experiencing debilitating stomach cramps for years. Doctors couldn’t pinpoint a problem and eventually chalked it up to stress. To help manage the pain, Jessica had been getting regular acupuncture treatments.

But that afternoon as Jessica, doubled over in pain, crept from her dorm room to the stairwell to wait for her parents, she fainted and fell down the entire flight. Jessica had passed out before and each time, it was preceded by intense stomach cramping.

“I would be hurting so much that my body would just shut down. It seemed like passing out was my body’s way of telling me it couldn’t take it any longer,” she says.

Miraculously, Jessica wasn’t injured in the fall. She was able to get up, and, dazed, head back up the stairs to ask her roommate to stay with her until her parents arrived moments later.

“We didn’t actually see her fall but it was no less scary for us,” says Deb. “We decided then and there we needed answers. This wasn’t just stress.” Once home, Deb wasted no time, quickly finding Jessica a new doctor and lining up an appointment that week.

“She really listened to me,” says Jessica, recalling her first visit with her new doctor. After a thorough exam, the doctor, an internist, ran a number of blood tests and later called Jessica at college, telling her, “I think you have celiac disease.”

Passing out isn’t a typical sign of celiac disease but stomach pain and bloating are key symptoms. So is iron-deficiency anemia, which tests revealed Jessica also had. A biopsy soon confirmed the diagnosis and Jessica got started on the gluten-free diet right away.

“It was incredible. I felt better almost overnight,” she says. “My stomach cramps disappeared and I haven’t fainted since.”

But the diet wasn’t easy to manage at her new school. That fall, Jessica had switched majors and transferred to Malone University in Canton, Ohio.

“Most food in the cafeteria was either made with gluten or cross contaminated by it,” says Jessica.

At first, the dining hall staff didn’t understand her dietary needs. The manager, who hadn’t heard of celiac disease or the gluten-free diet, was resistant to making some of the changes needed—like cooking her food separately and using freshly washed pots, pans and utensils. Deb called the school to help explain how important the diet was to her daughter’s health and sent along a doctor’s note. Meanwhile, Jessica created a small book for the manager, detailing safe and unsafe ingredients, as well as suggested foods and menus for her. She worked out a plan with the dining hall manager—she’d call 30 minutes before she went to the cafeteria and they’d ensure a gluten-free meal was ready for her. Although she came a long way with the dining hall staff, it was a relief when graduation came around.

Jessica eventually got an apartment and kitchen of her own. There she enjoyed focusing on all the things she could eat without the risk of cross contamination and she started to hone her gluten-free cooking and baking skills.

But before long, it wasn’t just gluten she was watching out for.

Marrying Special Diets

Jessica met Brandon Montague at church, shortly after getting her own place. He was leading a Bible study class she’d signed up for and over the next year they became good friends.

“Just friends,” says Jessica. “He wasn’t interested in dating at first.”

It wasn’t until Jessica made a move—she baked for him—that the friendship suddenly sweetened.

Like Jessica, Brandon follows a special diet. He has galactosemia, a genetic condition that affects how the body processes a simple sugar called galactose. Rare in any racial group, it occurs in approximately 1 in 60,000 Caucasians.

Normally, when a person eats food with lactose, such as milk, cheese or butter, the body breaks lactose down into two sugars: glucose and galactose. Glucose is readily usable but special enzymes are needed to break down galactose before the body can use it. In galactosemia, those enzymes are missing. As a result, galactose accumulates in the blood and can cause serious complications, like liver, kidney, eye and brain damage. Galactosemia differs from lactose intolerance, which may cause uncomfortable symptoms but doesn’t result in long-term adverse health effects.

Like most people with galactosemia, Brandon was diagnosed as an infant, just days after birth. Symptoms, which typically start soon after initiating breast or bottle feeding (if using a lactose-based formula), include vomiting, rapid weight loss, lethargy and jaundice. A simple blood test confirms the diagnosis. Today, all 50 states screen newborns for the condition via a “heel prick,” usually within a week of birth.

Treatment means avoiding milk and other foods containing galactose, such as casein, whey, ghee and even a few less obvious sources, like garbanzo beans; some legumes have high levels of galactose.

Like Jessica, Brandon scours food labels. There aren’t any medications to treat galactosemia—it’s managed exclusively by diet. On the rare occasions when Brandon accidentally eats something with galactose, it’s very scary, says Jessica. “He slows down neurologically. He can’t think straight, gets fatigued and has to go to sleep. Some research suggests permanent damage may be caused by even trace amounts so he takes his diet very seriously and is extremely careful.”

“Jessica was one of the first people not intimidated by my diet,” says Brandon. Having dealt with food restrictions herself, she was not only sympathetic, she was up for the task.

“The very first thing I made for him was German chocolate cake,” says Jessica. “His favorite.”

She kept notes detailing exactly how she prepared the cake, which wasn’t gluten free because she wasn’t sure she could pull off a gluten- and galactose-free cake yet. She also saved the labels from each ingredient that went into the cake so Brandon understood just how closely she was paying attention.

It didn’t take long for him to realize he could trust her cooking—and her. Three years later, they were married.

Eating Well

Brandon has always wanted to try a Snickers bar. He blames his curiosity on good marketing. “You know—Snickers satisfies,” he says. Because Brandon was diagnosed with galactosemia as an infant, he’s never had a Snickers bar, which contains milk chocolate, off-limits on a galactose-free diet. (Cocoa powder, used in Jessica’s cake, is allowed.) When Brandon learned that Jessica loves Snickers bars, he insisted she continue to enjoy them.

“She’s already given up a lot of favorite foods going gluten free,” he says.

Likewise, Jessica wants Brandon to still have a regular bun on his burger or a bagel on occasion. So the pair work it out—if they can’t both eat it, they have it when the other isn’t around.

Together, they’re gluten and “dairy-plus” free. (Strictly speaking, a galactose-free diet means steering clear of more than just dairy.)

“It’s much more fun eating together,” says Jessica. “And going gluten and dairy free is how we support one another. Special diets have been a common bond for us from the beginning.”

But gluten- and dairy-free cooking isn’t always easy. Baking can be especially challenging.

“Gluten-free flours seem to change the texture while non-dairy substitutes change the consistency,” notes Jessica, who spends more time in the kitchen than Brandon. That means some things crumble, or in the case of her chocolate pudding, they get too runny. Swapping cow’s milk for soy milk, the pudding refused to thicken, she recalls.

“It turned out more like soup and I was so disappointed, I wanted to cry.”

She’d planned to serve it to Brandon and his brother, who also has galactosemia. Instead, the dessert went down the garbage disposal. “Recipes may take some tweaking when you use gluten- and dairy-free alternatives and it’s best to do the experimenting before your company comes over,” she adds.

Jessica has come a long way since the pudding flop, even perfecting a semi-homemade gluten- and dairy-free version of Brandon’s German chocolate cake. A big help has been the explosion of great food-allergy websites and blogs offering free recipes and tips, she says. She’s found that using just a few quality ingredients and simple preparation make a winning combination.

“We like to broil salmon with fresh rosemary, lemon and olive oil. And we love grilling, even in the winter. We lightly marinate some chicken and throw it on the grill along with some fruit,” Jessica says.

Leftovers go to Pandi, the couple’s recently rescued 7-year-old Border Collie mix. Pandi’s also on a special grain-free diet due to skin allergies she had prior to being adopted by the couple. For Jessica and Brandon, she was the perfect match.

Medical writer Christine Boyd lives in Baltimore.

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