Kate Carey is a mother of three, a loving wife, and she just so happens to have celiac disease. But, unlike those first two titles she wears proudly, she doesn’t let her diagnosis define her, or rule her life.
That doesn’t mean it’s been an easy road for Carey, a stay-at-home mom from West Chester, Pennsylvania.
Carey started to feel sick after the birth of her second child. A few days after she stopped nursing her son (then 6 weeks old), she felt dizzy and was experiencing bouts of diarrhea.
A trip to the ER concluded that she had vertigo and dehydration. As the days went on, the dehydration went away, but the stomach issues and dizziness stayed. “We had no idea what it was,” Carey recalls.
After more ER visits and an eventual trip to a gastrointestinal doctor, Carey had a scope done. It was finally clear what was happening: she had celiac disease.
Coping with Celiac Disease
Celiac disease is a serious immune reaction to eating gluten, a protein found in wheat, barley and rye. For those with celiac disease, the consumption of gluten causes a response in the small intestine and, over time, damages the lining of the small intestine and leads to malabsorption of nutrients (1).
Symptoms of celiac disease, like the ones Carey experienced, may include diarrhea, fatigue, dizziness, bloating, weight loss, heartburn, nausea, vomiting, and anemia.
The news came as a shock to Carey, who admits, “I had no idea what gluten was, honestly.” It also came at a difficult time, as she was raising her newborn while feeling very sick. “I had trouble getting out of bed even, because I was constantly so dizzy,” she says. “I had also become pretty malnourished. I had no appetite because my stomach was so inflamed.”
Eventually, Carey met with a nutritionist to help her figure out what she could and couldn’t eat to properly manage her condition. During this time, Carey also discovered that she was allergic to dairy, in addition to having celiac disease.
That part came as a major letdown to Carey who, like so many of us, loves dairy and gluten-filled goodies. “I may or may not have cried in friends’ bathrooms, hiding out while they indulged in cookies and all sorts of gluten,” she admits.
Living a Gluten-Free Lifestyle
From that point on, she had to learn how to embrace a gluten-free and dairy-free lifestyle so that she could free her system of the foods that made her sick and get nutrients back into her body.
“I honestly had no idea of all the dairy and gluten that was in foods that I put into my mouth daily,” Carey says. In her research, she found that it wasn’t only foods that contained the very things making her sick: “Even my shampoo, conditioner and pills had wheat in them!”
She also discovered that beauty products she used all the time, such as foundations and lipsticks, contained wheat (e.g., hydrolyzed soy protein, hydrolyzed wheat protein), too.
Changing all of these aspects of her life immediately, from diet to beauty products, was definitely a challenge at first for Carey. But, in the eight years since her initial diagnosis, she says that she has adapted to living with celiac disease.
While Carey admits she misses certain foods (especially a slice of “real” pizza), her family has healthier eating habits as a whole now. “Lots of roasted veggies, shakes, and protein,” she says.
She has to be careful though, as any exposure to gluten, be it in food or products or through cross-contamination, will lead to bloating, stomach cramps, and diarrhea for roughly three days.
Even though Carey has had to alter parts of her life to keep the symptoms of celiac disease at bay, she advises anyone else who is just starting their own journey to do their research and check all labels thoroughly.
“You are the best advocate for you,” Carey says. “You can tell your doctor exactly what you are feeling and what is going on in your body.”
Carey also urges anyone going through an initial celiac disease diagnosis not to be discouraged, as difficult as it can be at times. “It’s a process, but you will feel better as soon as your gut heals, I promise.”