Looking back, three-year-old Jacob Nalli’s celiac disease symptoms seem so obvious to his mother Melissa. He was underweight, grumpy and completely uninterested in food, despite having a potbelly that suggested otherwise. In November 2012, though, his symptoms were nothing short of mysterious and worrisome. They continued to escalate until the following April when Melissa and her husband Joseph, a soldier in the U.S. Army, sought the help of pediatric gastroenterologist (GI) Dr. Donna Volk. Dr. Volk performed an endoscopy and diagnosed Jacob with celiac disease, prescribing a lifelong gluten-free diet and putting him on a path to wellness. Jacob’s early diagnosis has led to a total transformation.
“I feel so blessed to have found Dr. Volk,” said Melissa. “She knew exactly what to look for and what tests to run.” Not only did Dr. Volk give Jacob his life-saving diagnosis, she gave Melissa a nugget of information that would go on to change the lives of the rest of her family as well: celiac disease is a genetic autoimmune disease.
“As much as I didn’t want to admit it, that’s when I knew deep down that I had celiac disease too,” Melissa recalled. She was pregnant with her second child, Emma, when Jacob was diagnosed. When she mentioned her history of reflux and Jacob’s diagnosis to her OB-GYN, she was told not to worry. She was instructed to get tested if her reflux didn’t subside after the baby was born. Even with a history of thyroid disease and anemia, two common signs of celiac disease, her doctor doubted her test would come back positive.
But it did.
“After Jacob’s diagnosis, I told my parents they needed to get tested too,” Melissa explained. The resulting diagnosis of her mother, Sandra Sloan, was anything but easy.
“My doctor told me there was no way I had celiac disease,” Sandra said. “I didn’t fit his stereotypical idea of the thin, short and malnourished person. He practically refused to send me for the blood test. It didn’t matter to him that my daughter and grandson were both diagnosed.”
Luckily for Sandra, Melissa was adamant about the genetic component of celiac disease. She had done her homework and knew that her mother was at risk. Meanwhile, Sandra threatened to leave her doctor’s practice and seek treatment elsewhere. He finally relented and told her to schedule an appointment for a colonoscopy, instantly raising even more red flags for Sandra. “I knew a colonoscopy wouldn’t diagnose celiac disease,” she said.
Sandra's doctor told her she did not have celiac disease, but instead tried to prescribe a medication to treat gastroesophageal reflux disease (GERD). At Melissa's urging, Sandra requested the results of her test and took them to another physician for a second opinion. Sure enough, Sandra's test results indicated she did, in fact, have celiac disease.
Melissa Nalli (left), Jacob Nalli and Sandra Sloan following their celiac disease diagnoses.
Once her mother received her diagnosis, Melissa knew she couldn’t stop there.
“I told my grandparents about their risk of having celiac disease. They haven’t really been receptive to the idea of testing,” she admitted. “I know that adopting the gluten-free diet can be scary, but it’s really just a lifestyle change,” she explained. “It’s not the end of the world to give up gluten.” In fact, it’s just the beginning.
“I even went ahead and called their doctor’s office to ask that they be tested during their next routine check-up.” Melissa will be heading to Pennsylvania from their home in Kentucky to visit her grandparents in the coming weeks. Melissa says she plans to talk to her grandparents again about testing, this time with the help of family testing resources from the National Foundation for Celiac Awareness (NFCA).
Melissa says she’s working on convincing her brother to get tested as well, especially since he has children of his own. She hopes that all of her family members who have not yet been tested will do so.
“Jacob and I would not be diagnosed with celiac disease if it weren’t for Melissa and her persistence in pursuing testing for us,” Sandra said. “She’s truly my hero and I am honored to have nominated her for this recognition.”
Melissa is grateful and hopes she can inspire others to pursue testing. “If I could tell people just one thing about celiac disease after my experience, it would be to trust your instincts,” Melissa explained. “You know your body best. Keep pushing until you get an answer.”
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NFCA President & CEO Alice Bast and Dr. Ritu Verma of The Children's Hospital of Philadelphia explain who is most at risk for developing celiac disease.
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