ErinThe Voices of Celiac Disease

“Sometimes people don’t understand the emotional toll of having a child with an autoimmune disorder and all that goes into keeping her safe.”

A portrait of Erin's family

“We always have a choice: we can focus on what she can’t have with a celiac disease diagnosis, or we can shift to what is available and focus on what we can have. The diagnosis may not be a choice, but our perspective is.” 

Meet Erin Ford (Casper, Wyoming)  

When Erin’s 3-year-old daughter, Regan, became extremely sick in October 2019, she never imagined the culprit could be gluten. After doctor’s visits, blood tests, and an endoscopy, they confirmed the illness as celiac disease—an answer that shed light on more than just Regan’s sudden bout of sickness. “When we were looking back at Regan’s temperament throughout her life, it all started to make sense. Once we had that diagnosis in place, we were able to see that once Regan was old enough to start having solids and having gluten, she really was a highly anxious child,” says Erin. “My husband and I thought it was because we were helicopter parents or something, and we had created this scared little kid. But once we got the diagnosis, we could go back and really connect the dots and see that she just felt awful due to the way gluten was impacting her system, which would make anyone act anxious.” 

With the diagnosis confirmed, Erin and her family set out to become diligent followers of the gluten-free diet, determined to keep their child safe. “We took gluten out of our house totally because I have no idea how we would keep those things separate with a little toddler running around. And we’re just trying to take a careful approach to figuring out how we can still be out and about while keeping her safe and protected.” 

For challenges like evaluating labels; searching for doctors willing to help beyond merely saying “just go gluten-free;” finding certified gluten-free products; and encouraging Regan to become aware of her body and talk about how her “tummy” is feeling, Erin leans on her family for strength and support. “Our family support has been phenomenal, which has made this process much more manageable. My in-laws care for her several days a week, and they’ve just been amazing in making their house a safe environment for her. My mother-in-law and I have taken on learning to bake gluten free, and we have been able to host others with a totally gluten-free menu. It has been amazing to have family show commitment to Regan’s health, even when it requires so much extra work. That ability to feel support around a need that is so big for us, and for a mom to be able to go outside of my house and just let my brain rest without being worried about Regan’s safety—that’s the biggest gift.” 

Having personally received such strong support from her loved ones, Erin hopes to give the same compassion and support to the celiac disease community. “Being able to be an advocate for awareness around the diagnosis or finding a cure was really something I felt like I could do, because this is something we just eat, sleep, and breathe all the time. Gluten-free is our life, especially with a toddler.” 

Erin brings not only her personal experience with celiac disease to her role as a Reach Beyond Celiac Ambassador, but also her professional experience too: as a licensed counselor, Erin hopes to shed light on the psychological impacts of celiac disease, especially as a caregiver. “I like to take hard situations in my life and turn them into ways that I can support people, especially being a counselor,” Erin explains. “Sometimes people don’t understand the emotional toll of having a child with an autoimmune disorder and all that goes into keeping her safe. I have to stay hypervigilant and always be aware of potential ‘threats.’ While I do want to remain positive as much as possible, I also want to acknowledge all of the emotions that go with caring for someone with celiac disease: worry, fear, disappointment, sadness, and isolation. We want to maintain positivity, and we can do that, but sometimes it’s just freaking hard, and sometimes it doesn’t feel fair, and sometimes it’s not always authentic to stay positive and optimistic. Sometimes we really just have to sit back, be sad, and let it be hard. That way, we can go at it from a positive perspective again once we have acknowledged the emotions that are there.” 

Erin extends that same strategy when thinking about Regan’s future and the treatments for celiac disease to come. As Erin talks about a cure—one that could come as soon as 2030—she becomes emotional, thinking of the ways in which research could bring about a freer life for her daughter. “With a cure, she would have the opportunity to lessen this burden. A cure would open up opportunities for her socially, emotionally and in feeling good in her body. These are the cards that were dealt, so we’re going to equip her with as many skills as we can, like a positive attitude, and support her as she walks out this journey. She’s going to go on to be strong and have a great life, but to have a cure for this would allow her to live a life that is a little more free of that burden.” 

Until a cure is found, Erin devotes herself to being a celiac disease champion, constantly ensuring that her daughter has safe, healthy and delicious food to eat, along with making sure she feels included in social situations that revolve around food. “With Regan going to school parties, I’ve asked to be the only mom bringing baked goods. So now I’ve committed to baking three parents’ worth of gluten-free treats,” Erin laughs. “But that’s exactly my goal. I want everybody to be jealous of Regan’s snacks and realize that a gluten-free life can be awesome and delicious too.”  

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