LindaThe Voices of Celiac Disease

I thought I had cancer. I thought I was dying. I felt that sick and lost that much weight so quickly.

Portrait of Linda

“The idea of helping others along their way with their struggles and keeping up with all the latest things that are going on in the research world—that’s what drew me to the program. I want to have the opportunity to share what I’ve learned with other people and to be a mentor to folks. Even if it’s just to let them know that it’s okay to mourn the loss of bread for a while and to tell them they’ll find a gluten-free bread that’s going to taste great. And tell them that everything will be alright.”

Meet Linda Schoepf (Atlanta, Georgia)

15 years ago, a new medication turned Linda Schoepf’s life upside down. “One day, I took a brand-new medication, and within 30 minutes of taking it, I was violently sick. And I figured, obviously, I had an allergic reaction to the medicine. But after that, I just never felt better,” Linda recalls. “For literally the next 30 days, I was losing weight, not feeling good, and anything I ate was not sticking with me. And that started my round of doctors.”

As doctor after doctor failed to provide answers, Linda feared for the worst. Weeks passed without relief, and Linda struggled to understand what could possibly be causing her symptoms. “I kept thinking, ‘What is wrong with me? Was it an allergic reaction to the medicine? Was there something else going on?’ I was still feeling lousy and losing tons of weight, and tests didn’t really get me anywhere. I got referred to a gastroenterologist, and they did a colonoscopy that didn’t show anything. Then finally, the doctor said, ‘I think we better do an endoscopy.’ It came back clear: I had no villi. They diagnosed me with celiac disease immediately.”

Despite the life-changing diagnosis, all Linda could feel was relief. Though the gluten-free diet is not without its challenges, Linda couldn’t help but feel grateful there was a treatment at all—and that it wasn’t something far more deadly. “I thought I had cancer. I thought I was dying. I felt that sick and lost that much weight so quickly. So it was a huge relief that I wasn’t dying, that I didn’t have cancer, and that it’s manageable strictly by diet,” Linda explains. “So, although those changes weren’t fun at first, once I incorporated them in my life and I was feeling so much better, I was so grateful just to be feeling better and back to my daily life.”

Before the more recent widespread availability of gluten-free products, Linda relied on packing and planning to make sure she had safe meals wherever she went. While better tasting breads and snacks have brought small moments of joy, managing the gluten-free diet is still not without its challenges. “Basically, I threaten anybody that brings gluten into the house to keep it away from my area and my stuff,” Linda laughs. “But I try to meal plan a little bit here and there. I bring snacks when I’m going to an event or a lunch when I haven’t had a chance to be proactive and ask for a gluten-free meal ahead of time. I always have snacks—snacks in the purse, snacks in the car—just in case there isn’t something I can eat when I’m out and about. And a lot of my friends know, and so when they have me over, they’ll ask me what I can and cannot eat, which is fabulous. It takes a little bit of planning, of course, but I have 15 years of experience under my belt now, so it’s kind of second nature to me.”

Now comfortable in her gluten-free lifestyle, Linda hopes to help others feel welcome in the celiac disease community and in their diet. As a Reach Beyond Celiac Ambassador, Linda is excited to dive deeper into the science behind celiac disease and offer support and guidance to the newly diagnosed. “I want to learn the most up-to-date scientific findings. I really hadn’t been updated since my initial diagnosis, and I want to know and share what is cutting edge and what is on the horizon. And I especially want to help the newly diagnosed and say, ‘You can always learn more. There are tons of resources out there. Don’t be afraid to ask for help! Find a mentor, find a support group, find a chat group, find a Facebook group. Whatever works for you, find it, get engaged, and share tips.’ I just love sharing best practices, it’s awesome.”

Though Linda hopes to help those new to the gluten-free diet, she hopes for a day where it won’t be necessary. With the possibility of a cure for celiac disease on the way, Linda dreams of a future where she’s not defined by the food she eats. “A cure would mean my son would not get it and have to deal with some of the struggles that I’ve had. It would mean that I would have a healthier body and healthier lifestyle and longer life expectancy. And maybe the opportunity to eat a hot pretzel again with some salt, that would be fun,” Linda laughs. “It would be nice to not have to be the one in the room at a social event where everyone is like, ‘Oh, that’s the one with all the food allergies.’ It would be exciting beyond belief.”

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