A Subtle Red Flag
“You’ve lost a little weight.” With those five words, our lives—and specifically, our ability to eat whatever we wanted whenever we wanted—were changed.
It was the summer of 2013. Julia had just finished her junior year of college; Hannah had just finished her freshman year. We’d both always been healthy kids aside from the occasional cold or stomach virus. In college, that started to change. Since freshman year, Julia had been sick far more frequently, often battling colds that lasted for weeks and weeks. That June, Julia went in for her annual physical. Julia was 20 and still seeing the family pediatrician, planning to switch to another physician after college. The doctor mentioned that Julia had lost about five pounds. Five pounds—that was it! Julia had always been petite and wasn’t worried.
The doctor felt differently: “Have you been trying to lose weight? Because you really don’t need to.” Julia explained that she hadn’t been trying to lose weight but had been trying to live a healthier lifestyle, working out twice a week at the campus gym and trying to eat more veggies and fewer cookies at the dining hall. To Julia, it was a perfectly rational explanation for very minor weight loss.
The pediatrician pointed out that Julia was now considered “underweight” and asked whether Julia had been tested for Type 1 diabetes, which our younger brother Evan had been diagnosed with about two years earlier. Julia reminded the pediatrician that yes, she had gotten tested a few months after Evan’s diagnosis, and it had been negative. The pediatrician asked Julia about other symptoms. Constipation? Diarrhea? Extreme thirst? Mind fog? Julia shook her head. She might have experienced some of those things occasionally, but not enough that she’d ever been worried something was wrong.
The doctor suggested running a few tests anyways, including tests for Type 1 diabetes and celiac disease. Julia thought it was kind of silly. She had lost five pounds—after adding regular workouts and healthier meals to her daily routine—and had no other symptoms. But she shrugged and said, “Sure. Better safe than sorry, I guess.” They took a few vials of blood, and Julia promptly forgot about it.
Then, a few days later, Julia got a voicemail. All of the tests were fine, except for the celiac test, which had come back positive. Julia’s stomach dropped. She listened to the message again. Celiac disease? How was that possible? Julia was no stranger to celiac disease. Her boyfriend of about six months, Kerrey, had been diagnosed with celiac disease back in high school, long before they had met. But she’d never suspected that she could have celiac disease too.
She immediately began mentally running through all of the foods that she wouldn’t be able to eat. Birthday cake. Thanksgiving stuffing. Pizza rolls. Bagels. The Oreo bars that they serve in the dining hall sometimes. Somehow feeling both numb and overwhelmed at the same time, Julia told our family that night. As Julia explained, Hannah felt a surge of recognition. She had also lost weight over the past year—10 pounds, in fact. Because she was still considered a healthy weight for her height, it hadn’t raised a red flag. But in light of Julia’s bad news… “I think I have it too,” Hannah announced. “I have a feeling. I need to get tested.”
We both scheduled our follow-up doctor appointments. Hannah got blood drawn for testing, and the pediatrician referred Julia to a gastroenterologist to get an endoscopy. We began reading up on the gluten free diet. After Julia’s endoscopy, the gastroenterologist came in and told her that based on his preliminary opinion, it looked like celiac disease. Julia nodded, feeling disappointed but not surprised. Hoping for the blood test to be wrong had been a longshot. After Julia’s results were in, Hannah resigned herself to the same fate, and sure enough, her blood test and then endoscopy both indicated celiac disease. After her endoscopy, the doctor commented on the extreme damage to her intestine.
Julia was leaving for a five-week study abroad program in France just a couple of weeks after her endoscopy, and since she was almost asymptomatic, she made the decision to wait until she returned to the U.S. to begin the gluten free diet, allowing her to have a “last hurrah” with gluten-filled foods. The week after Julia’s return, our family was planning to go on a weeklong cruise, so Hannah decided to use the cruise as her “last hurrah” without dietary restrictions.
Beginning Gluten Free Life
While in France, Julia began suffering from more gastrointestinal symptoms, especially after eating dairy. Her last meal with gluten was on the plane back to the U.S. After our family boarded the cruise ship a few days later, she felt totally overwhelmed when our family went to the ship’s buffet, coming back to the table with just a few slices of cheese and some pieces of fruit while everyone else loaded up their plates. But luckily, Carnival had a full-time staff member dedicated to handling food allergies, which made the first few days of gluten free life much less easier. Hannah, meanwhile, enjoyed eating whatever she wanted aboard the cruise, and when we returned, she too began the gluten free diet.
The next year was hard as both of us returned to college, where the dining halls’ gluten free offerings were mediocre at best. We couldn’t join our friends for $1 pizza slices or drink beer at parties. It was hard to not feel resentful sometimes when we had to miss out on things that everyone else our age was enjoying.
But it got easier. We were both lucky to have great support systems. Our family—both immediate and extended—went above and beyond to help us feel like we weren’t being deprived. Our mom figured out how to bake gluten free birthday cake. Our uncle tweaked the recipe for his legendary chocolate chip cookies to make a gluten free batch. We didn’t go hungry at Thanksgiving, Christmas, or birthday parties. Our boyfriends both made life as easy as possible: Kerrey, of course, was already gluten free, and Hannah’s boyfriend Dan started eating gluten free to help Hannah avoid gluten cross contamination. Most of our friends tried to be conscious of our dietary restriction, allowing us to pick the restaurants where we dined out and letting us know when they discovered cool gluten free finds.
The New Normal
And over time, being gluten free became the new normal. We would never wish celiac disease or gluten intolerance upon anyone, but we also know that it’s possible to live happily without gluten. Now graduated from college, we eat tons of delicious food, both at home and at restaurants, and travel to new places with relative ease. There are so many great products, restaurants, and vacation locales for gluten free individuals, and we want everyone to know about them. That’s why we started Celiac Wanderlust, and we hope that our gluten free journey helps reassure anyone beginning or struggling with theirs!