JaimeThe Voices of Celiac Disease

“You don’t realize how much the world revolves around food until you can’t eat whatever you want.”

A portrait of Jaime and Aden

Helping people with celiac disease—friends of friends that reach out to me with questions, people online that see what I post and reach out privately asking for help—that gives me purpose. It’s something that makes me feel so happy and fulfilled.” 

Meet Jaime Lipson (Philadelphia, Pennsylvania) 

When Jaime Lipson first started experiencing symptoms of celiac disease two decades ago, she never imagined it could be something that would change her life forever. “I was having the classic gastro symptoms, along with headaches, but it wasn’t every time I ate a specific food, so I couldn’t really pinpoint the cause,” Jaime explains. “I was eating everything in sight and weighed under 100 pounds. Luckily for me, my gastroenterologist’s wife had celiac disease, so as soon as he saw me and heard my symptoms, he tested me, and, as we know, it came back positive.” 

“Twenty years ago, there was very little gluten-free food to be found anywhere. I’d never heard of celiac disease and didn’t know anybody with it. I just heard the word ‘disease’ and it scared me. I struggled with isolation and loneliness for a long period of time in the beginning, but it’s much, much easier now.” 

Time passed and Jaime began a family with her husband, knowing that her children would be at risk of developing celiac disease. After having her first son, Aden, their pediatrician suggested feeding him gluten. “He used to scream in pain anytime he had to go to the bathroom. It was horrible to see our child in so much pain, not knowing the cause of it. When Aden was almost three, we went to the celiac disease group at the Children’s Hospital of Philadelphia (CHOP). He went through bloodwork, an endoscopy, and an colonoscopy, all at a very young age—which was traumatic for all of us—and that’s how he was diagnosed with celiac disease.” 

While Jaime had learned to expertly manage the gluten-free diet in the years since her diagnosis, caring for a child with celiac disease was an entirely different experience. “We faced many challenges as parents of a child with celiac disease. We faced the challenge of daycare; teaching a 3-year-old that he can’t share snacks with friends; him feeling left out at class parties and sending him with his own food; and educating his teachers about cross-contact.” 

Between her own experiences and her son’s, Jaime quickly became adept at navigating nearly every situation where food may be present. “We dealt with traveling, birthday parties, day camp, overnight camp, weddings, outings with friend, family gatherings—the list goes on and on. We’ve really dealt with almost every possible scenario throughout both of our journeys.” 

Despite years of experience, maintaining the gluten-free diet still has it’s challenges. “Spontaneity is the biggest struggle,” Jaime says. “You don’t realize how much the world revolves around food until you can’t eat whatever you want. The simple task of getting together with friends for dinner comes with preparation and angst. We really have to plan every trip, even if we’re just going into the city for the day.” 

Beyond the hassles of planning and researching safe options, social interactions can prove frustrating as well. “It’s not a great feeling when you’re surrounded by people eating whatever they want, and you’re just sitting there with nothing. Food brings people together, and if you don’t have that commonality, it makes you feel like an outcast,” Jaime explains. “I’m part of the celiac disease community, but I tend to pass up on opportunities to be part of other communities because they are food-related, or their meetings are all held at restaurants. I don’t want to burden people with needing to make sure I have something to eat.’” 

But Jaime refused to let feelings of isolation bring her down. Instead, Jaime turned towards supporting other people with celiac disease, hoping to bring help, support, and awareness to those who face her same obstacles. “I have been volunteering with Beyond Celiac since it was the National Foundation of Celiac Awareness. I found them through CHOP and I volunteered right away. I reached out and said, ‘How can I help? I want to be a part of this organization.’ So I manned the celiac awareness table at one of their functions, helped them contact chefs in the area for a gluten-free cookbook, and have always offered help when I can. I try to stay up to date with what’s going on in the celiac disease community, so when I came across the application to become an ambassador, I immediately signed up!” 

As a Reach Beyond Celiac Ambassador, Jaime continues her long history of volunteering, now with a larger platform to help other families, make connections, and continue to spread awareness of celiac disease. She also aims to accelerate a cure for celiac diseasesomething that could change Jaime and Aden’s lives for the better. “I’m thankful for our health and the fact that we only have to maintain a gluten-free diet to curb the disease, but a cure—to not have to think about what you’re eating; to not have to worry about getting sick; to relieve the anxiety my son has when he goes to a friend’s event and doesn’t know what he can eat, if anything; to not have to think about it? I can’t even explain in words what that would mean for my family.” 

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