A life restricted

Sarah Curtiss can’t eat corn. She can’t eat broccoli, cantaloupe or pretty much any form of dairy. Seafood is out. Lemons, tomatoes, squash, mustard and barley are all bad. And if a restaurant puts wheat or soy fillers in its burgers and hot dogs, she can’t eat those either.

Sarah, a 29-year-old graduate student in human development, has eosinophilic esophagitis, or EE, a long name for an elusive autoimmune disorder where heartburn and difficulty swallowing are linked to specific dietary allergens found in so many of her forbidden foods.

The allergies from EE are so vast that some may never realize they have the disease. Sarah’s diet focuses on whole foods — mostly fruits and vegetables with lean meats for protein — and resembles dietary recommendations for all Americans, not just those with EE. What Sarah originally thought would alter her life has actually in many ways enhanced it.

When Sarah would eat any of her forbidden foods, her white blood cells would overproduce and leach ridges of scar tissue inside her esophagus, causing structural damage that kept her
from swallowing.

She had tubes shoved down her throat, saw photos of her insides; her esophagus like a fluffy cake donut. She was referred to Cincinnati Children’s Center for Eosinophilic Disorders and matched with both an allergist and a gastroenterologist. During all this, Sarah graduated with a bachelor’s in psychology, married her long-time friend Caleb, bought a house, started graduate school and went about a seemingly normal life in Champaign.

She made trips back and forth to the center, going through the painstaking process of identifying every food she needed to stop eating for her esophagus to stop swelling. It would take three years to pinpoint every allergen. In the meantime, meals would mean a lot of guesswork. What would make her esophagus swell? Would she even know if it did? She hadn’t felt the initial damage. Indeed, one false ingredient wasn’t going to cause her throat to close up instantly. But too many allergens absorbed over too long would push her body too far.

And Sarah’s allergies don’t stop at food. Her wedding band and engagement ring, a modest round-cut diamond surrounded by white gold, has been specially treated so she doesn’t break out in hives. A dust mite-resistant liner is on her mattress and all her bedroom pillows. When she was a child, she had a bad reaction to penicillin — another allergy. And if she gets too close to her cat, Buffy the Mouse Slayer, she has a sneezing fit. Buffy and her dog Bubba both came from the Champaign County Humane Society, and they’re not going back. Sarah says she’s too stubborn to give either of them up. They are part of her family, and family is special to Sarah. When Sarah and Caleb are ready for children, their family may include more cases of EE.

“In many ways, I’d be prepared if we had a little guy with dietary issues,” Sarah says. “There is prenatal testing — it is genetic.”

Sarah and Caleb know the child could have extreme food allergies. They would recognize the signs a lot sooner than parents who didn’t have firsthand experience living with eosinophilic esophagitis. The question of how likely it would be that their little guy would not be able to accept milk is not stopping them when it comes to thinking about having children.

Like many students, Sarah’s work can be all-encompassing. Some nights, she is so exhausted she has no energy to cook.

When she first started her allergen-free diet in January 2012, Sarah would sometimes be overwhelmed by the amount of preparation needed just to make dinner. She found herself fed up, snacking on a bag of carrots; her brain too fried, her body would be too exhausted to orchestrate a meal. But those nights are few and far between now that she has time to plan meals.

She scours MarthaStewart.com and The Food Network and reads old cookbooks looking for inspiration. When she does find something that sparks her interest, she runs through the list of ingredients, sometimes literally taking her index finger through the page or hovering over the computer screen, making sure she doesn’t skip over any ingredients she may later have to substitute.

Corn is the hardest thing to avoid, since it’s in everything. Corn is a flavor in fruit juices, corn oil cooks french fries, and corn is often used as a filler in artificial sweeteners, vitamin supplements and even some mouthwashes. Corn metaphorically, geographically and literally surrounds Sarah.

Two crows are inked across her back, swarming around a cornstalk on her right shoulder blade. Apparently the crows can swallow corn, even if she can’t. Modeled after painter John James Audubon’s “Crows On Corn,” corn was something Sarah knew she could commit to on her back, if not in her stomach. A single gray-blue wingtip of the tattoo peaks out from the back of her sweater’s crew neck as Sarah’s cart squeaks and veers slightly to the side — she is in the produce section of a local grocery store and the front wheel is stuck. But Sarah doesn’t notice because she is on a mission: Do they have parsnips? She likes parsnips as a hearty filler for beef stew, and they’re fairly inexpensive. But most importantly, she’s not allergic to them.

Sarah has spotted a store worker and is inquiring on the whereabouts of any parsnips. The worker checks, but the store is out.

Sarah sighs.

“When you can’t have so much — like, I can’t have a lot of the really common green vegetables — eating the same things over and over again can get boring.”

Fluorescent walls of temptation and torture glare at Sarah as she strolls down the frozen dairy aisle.

She is diligent. She is strong. But her eyes wander. She is stopping. Abandoning her cart, Sarah bends down to inspect the label on a box.

“Oh, are these Fudgesicles? And they’re made with coconut milk — this is so exciting!”

She tosses the eight-pack into her cart and flees the scene. A week later she will discover that the thrill of the kill wasn’t quite worth the purchase of another box. She prefers coconut in macaroons instead of Fudgesicles.

Growing up, Sarah ate regular ice cream. She didn’t have to think about allergies. She played with cats and dogs, slept on beds without special liners and ate whatever her father put on the table. Every Christmas, there would be Belgian waffles for breakfast and spaghetti for dinner. Her sisters both grew up with asthma, so Sarah did learn about managing serious health conditions. And although it has been five years of living with it, she sometimes still forgets about her extreme allergies.

“I’ve made stupid mistakes even recently, like ordering lemonade at a restaurant,” she says, “I just wanted something other than water to drink and got so caught up in the fact that it was homemade without any fillers or artificial flavors that I forgot: ‘I can’t have lemons!'”

Doctors still don’t know everything about EE. Treatments may change, but there is no cure. There are alternatives to Sarah’s diet. She could take steroids twice a day for the rest of her life. But uncertainty of any side effects, coupled with the monetary cost, keeps Sarah set on her diet. Sarah is resilient, but she is also human.

This year means a huge change for Sarah’s family — no more Belgian waffles on Christmas morning, and they will have ham instead of spaghetti that night for dinner. She is surrounded by a supportive family: parents who are willing to change tradition, a husband who doesn’t mind eating in much more than dining out. Her friends bring their own bread to her home for dinner parties. But most of the discovery, stress and responsibility of living with eosinophilic esophagitis falls on Sarah. She has to think about what’s safe to eat for the rest of her life, maybe even for the lives in her future family.

“I guess I’m optimistic, but I never really saw it that way,” Sarah shrugs, smiling with a slight laugh. “I’m not going to get offended if you eat cake in front of me.”

Sarah can’t have cake. But that’s okay — she’s having coconut macaroons for dessert.

– Renee Wunderlich (source: dailyillini.com)