Chicago family finds the best celiac disease care for their daughter
February 4, 2020
The Bourkes read Niamh's favorite book.
Early on, Renee Bourke, northwest side mom of two, noticed that her youngest daughter, Niamh, was having a tough time with foods. She would vomit after drinking her organic formula, which got better when Bourke switched to a gluten-free brand. However, it later became apparent that Niamh’s stomach troubles were representative of a larger issue, especially when she started eating solids.
“I turned to Dr. Google, saw celiac disease and knew that was it,” Bourke said.
Celiac disease is an inherited autoimmune disease that affects the digestive process. According to the National Institute of Diabetes and Digestive and Kidney Diseases about 1 in every 140 people in the United States has this disease. When someone with celiac disease consumes gluten — a protein found in wheat, rye, and barley — their immune system attacks the small intestines, stopping the absorption of important nutrients into the body. Celiac disease can be associated with other autoimmune disorders, and if undiagnosed and untreated, can lead to osteoporosis, infertility, neurological conditions and more.
Early signs of celiac disease
Bourke called to confirm with her local pediatrician and was waved off. Nevertheless, the family stayed vigilant, and as Niamh grew older, she began to show other signs of celiac disease, like slow growth progression.
“She didn’t get her first tooth until she was 14 months old, and she was still bald at three years old,” Bourke said.
By the time Niamh turned 4, things took a turn for the worst.
It was continuous replies saying, ‘it’s worth the drive, go to Comer Children’s at the University of Chicago.’
“She started being sent home from school, screaming with stomach pain,” Bourke said.
The family again took Niamh to the hospital on their side of town and still didn’t get what they needed. They felt like the doctor was dismissive, didn’t truly hear their concerns, nor did she offer any viable treatment options. After Niamh saw another doctor at the same hospital, they finally got an official celiac disease diagnosis.
“Symptoms of celiac disease can vary. You can have gastrointestinal symptoms and non-gastrointestinal symptoms,” said Ritu Verma, MD, medical director of the University of Chicago Medicine Celiac Disease Center. “That is why it’s truly so difficult to make the celiac diagnosis.”
Niamh’s stomach pain was a gastrointestinal symptom of celiac disease. Other common gastrointestinal symptoms are diarrhea and weight loss. Celiac disease can also present non-gastrointestinal symptoms like headaches, short stature, rashes and dental enamel defects.
Finding support in the Chicago celiac disease community
After Niamh’s official diagnosis, receiving medical care at their local hospital didn’t get any easier. The final straw was when they couldn’t get a follow-up appointment, so Bourke posted in a Facebook parents’ group for suggestions of where to take her daughter for celiac disease care.
“It was continuous replies saying, ‘it’s worth the drive, go to Comer Children’s at the University of Chicago,’” Bourke said.
Bourke made the appointment and took the 20 mile drive across the city to the University of Chicago Medicine Comer Children’s Hospital.
As a pediatric gastroenterology patient with celiac disease, the Bourkes were assigned a care team comprised of a physician, nurse and dietitian that works with the family to provide medical care and guidance.
“After we come to an official diagnosis, the entire team is in the same room, listening to the family, providing education and support,” Verma said.
Verma and team are poised to provide education and wraparound medical services for patients and their families that can take them from testing to treatment and from childhood through adulthood.
Managing celiac disease treatment as a family
It is those wraparound services that Bourke found comforting when learning how to manage Niamh’s diagnosis and how to tackle one menu for Niamh’s gluten-free diet and another for the rest of her family.
Now, Niamh is six years old, healthy and no longer suffering symptoms. The family has adjusted to making exceptions for Niamh’s diet and mom has grown accustomed to preparing gluten-free dishes. When the family added a new member to the family, a pet dog, they called the Celiac Disease Center about his diet with worry that he’ll get close to Niamh.
“We didn’t even think about it until we had to buy dog food, but we called the office and they helped us figure it out,” Bourke said.
Ritu Verma, MD
Dr. Verma is a highly respected pediatric gastroenterologist and a leading expert in celiac disease. She works closely with her patients and their families to manage this condition.See Dr. Verma's profile
Celiac Disease Treatment
The mission of The University of Chicago Celiac Disease Center is to cure celiac disease. Through our groundbreaking research, we’re striving to identify new treatments for celiac disease and find a cure. We also strive to raise awareness and diagnosis rates through education and advocacy.Learn more about celiac disease