From the time Kyla Greenstein was born, something wasn’t quite right with her digestion system. Kyla suffered from chronic diarrhea and bloating, and although she seemed to be an otherwise healthy child, it was concerning for her parents. It wasn’t until a well child check at the age of 5 when the family learned about an unexpected theory for their daughter’s tummy woes.
“On a day-to-day basis she was a happy child,” said Cindy Greenstein, Kyla’s mother. “But occasionally she would bloat and her stomach would be painful to the touch. We knew something was going on, just not what exactly.”
Her doctor recommended she be checked for celiac disease, and so the family was referred to Seattle Children’s where the diagnosis was confirmed.
Celiac disease is an autoimmune disorder. When someone with celiac disease eats gluten, a protein found in wheat and rye, it causes an immune system reaction and stimulates the body to attack the small intestine.
“Celiac is really common, occurring in about 1 in 100 people,” said Dr. Dale Lee, a gastroenterologist at Seattle Children’s and director of Seattle Children’s Celiac Disease Program. “It’s tricky because the presentation of celiac can be different for everyone. The symptoms of celiac can be quite variable, and so many people go undiagnosed.”
According to Lee, symptoms can include diarrhea, stomach pain, delayed growth, poor energy, constipation or weight loss.
“If you think your child may have celiac, it’s worth talking to your primary care provider,” said Lee. “Some individuals can even have no symptoms at all.”
Cutting out gluten
Celiac disease can not be treated with medicine or surgery, and so the only treatment option is to abstain from gluten completely. Even the smallest amounts of gluten, such as crumbs from a cutting board or toaster, can cause damage in the small intestine.
According to Lee, it is valuable for individuals who have been diagnosed with celiac disease to be treated at a multidisciplinary center, which is why he spearheaded the development of the first formal Celiac Disease Program in the Pacific Northwest. The program, officially opening the first week of March, consists of a team of gastroenterologists, dietitians, nurses, social workers and a psychologist who will help families navigate how to follow a gluten-free diet and monitor disease status. The Seattle Children’s team will also host family support groups for families with a child with celiac disease.
“It’s critical that families partner with a dietitian and a medical team to help with the transition,” said Lee. “It may seem simple, but you have to be strict. You can’t expose a person who has celiac disease to gluten. You have to learn how to set up your kitchen so you don’t cross contaminate foods, find out where gluten may hide in the foods you eat and speak with a child’s school or daycare about meals and snacks. There is also a lot of education that happens at the child’s level because it’s critical for them to get involved and understand their disease.”
For the Greenstein family, the change wasn’t easy at first.
“It was a slow transition,” said Greenstein. “We tried to keep conversations up beat. We didn’t want to focus on what Kyla couldn’t eat, but rather on what she could eat.”
The Greenstein family said they were surprised to learn about all the different foods and products that contained gluten.
“We got really good at reading labels,” said Greenstein. “I never would have thought you’d find gluten in things like hair products.”
No wheat, no worries
Since the Greenstein’s transitioned to a completely gluten-free household, they’ve seen tremendous improvement in Kyla. Even Cindy says she feels better.
“After about a year, we decided to have a completely gluten-free kitchen,” said Greenstein. “My biggest advice to others who have been newly diagnosed is to not be too hard on yourself. It’s a slow process, but it’s doable.”
Today, Kyla is an active and healthy 13-year-old. She plays soccer, participates in dance, is on the ski team, plays piano, enjoys hiking, excels in school and she’s been gluten-free for nearly eight years.
“Kyla is very aware of what she can and can’t eat and has no desire to have gluten, including wheat, rye, barley, malt and sometimes oats, because of the havoc it wreaks on her system. She is very good at advocating for herself,” said Greenstein.
To learn more, visit Seattle Children’s website. If you think your child may have celiac disease, speak with your child’s primary care provider. For appointments, or if you need a second opinion, call 206-987-2521.