RachelThe Voices of Celiac Disease

I’ve found the only way I’ll be able to get what I need is to ask for it.

Portrait of Rachel with her dog, a golden retriever

“With celiac disease, which is one of the more serious dietary restrictions, I’ve been able to help other people at my school. When there was an event, or when there was a school lunch, whether they had celiac disease or something else, since I was in a leadership position at my high school they had someone to speak up for them. And I think about someone like the shy little 8th grader, she’s probably not going to say anything, so I’m happy that I had that opportunity and chance to stand up and help other people.” 

Meet Rachel Rutstein (Potomac, Maryland) 

Like many diagnosed with celiac disease, Rachel Rutstein had never heard of the condition prior to her diagnosis. “I was diagnosed when I was ten years old, and it was kind of a shock because we didn’t know what it was, and no one else in my family had it,” Rachel explains, “I was about eight or nine when I had chronic stomach aches all the time—basically every day—and a lot of times my stomach aches would come right after I ate breakfast, so the doctors assumed since I was eating cereal every day that I was lactose intolerant. They told me to stay off milk, we thought that was the problem.” 

When avoiding dairy didn’t help, Rachel’s family sought further testing. Nearly a year and a half after the onset of her symptoms, blood test results revealed skyrocketing levels of antibodies, prompting a referral to a gastroenterologist and then a confirming diagnosis of celiac disease through an endoscopy. As Rachel was a child at the time, the transition to a gluten-free diet fell on the shoulders of Rachel’s parents, who took her diagnosis in stride. 

“My parents were super supportive. They were learning as much as they could about celiac disease and how to keep up with the diet and the best ways to go about it for younger children with the resources that were available at that time, and they really just took it on headstrong,” Rachel says. “We made a lot of changes in the house. I have three younger siblings, and they don’t have celiac disease, but we got rid of a lot of the gluten snacks in the house, like pretzels, pasta, and cookies.” 

As Rachel has grown, so have the gluten-free options available to her, making including her much easier over time. “At school events or birthday parties, or when my friends would all go out to eat, they would have to accommodate me. I felt bad I could only eat out in certain places, but as I’ve gotten older, there’s definitely been a lot of changes in restaurants,” Rachel explains, “And there’s so many more gluten-free snack options now than when I was first diagnosed. One of my favorites is the Simple Mills Artisan Bread Mix. It’s really good, it’s super fluffy, and it actually tastes like bread! Quinn Pretzels too, they’re gluten-free pretzels stuffed with either chocolate or almond butter, and they’re so good.” 

Though gluten-free sections in grocery stores and on restaurant menus have expanded, the need to advocate for herself has remained a constant part of Rachel’s life. In high school—and now as a college student—Rachel has become adept at sticking up for herself and others with dietary restrictions, working to ensure their needs are met. “In college, it’s really just about speaking up. You just have to be on top of it. I’ve found the only way I’ll be able to get what I need and make sure that there’s enough options available for me, and even for other people with celiac disease or other dietary restrictions, is to ask for it, because usually people are more than happy to accommodate you.” 

Rachel’s passion for advocacy drew her to the Reach Beyond Celiac Ambassador Program where she hopes to continue making a difference for people with celiac disease in her community and beyond. “I enjoyed being an advocate for people, whether it be in high school or in other settings, so when I saw the program was all about advocating, awareness, educating people about celiac disease, and offering advice and help, I was so excited. I knew I wanted to be a part of a program where I can reach a bigger audience, not just the people who are around me.” 

When thinking of the people she aims to help, Rachel hopes there will come a time when her advocacy isn’t as necessary. With a cure on the horizon, the hope for a future free from accommodation is strong. “A cure would be amazing in all aspects, because hopefully we would be able to eat regularly, but I think even just not having that worry about cross-contact would be incredible. That’s the biggest thing—even in my house, I’m always trying to keep myself separate, and I always have to be careful. I think it would be amazing, especially for little kids who wouldn’t have to grow up with it like I did.” 

Until that day arrives, Rachel hopes to empower those in the celiac disease community, reminding them to remain positive and advocate for themselves. “Stay strong, you’ve got this!” says Rachel. “Stay with the diet, and you’ll be so thankful when you’re older. In the long run, it will really be beneficial. Speak up for yourself and remember that people are willing to help you. People want to help you.” 

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