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  Children’s Gastroenterology and Nutrition Team
January 14, 2009

Helping kids like Kate treat and manage GI disorders
Kate is enjoying being an active teen, thanks to support from her family and Children’s National.
Kate is enjoying being an active teen, thanks to support from her family and Children’s National.

Kate Raber is a "good-humored" 17-year-old who is a softball pitcher, soccer player, basketball player, surfer, and member of her school’s National Honor Society. No one could ever guess by looking at her she has celiac disease and it went undiagnosed for so long.

Kate began suffering from digestive problems at a very young age. At 3 years old, her mother, Blair, noticed she developed a large, bloated stomach. She took Kate to their local pediatrician who dismissed it and said it would go away with time.

Years later, when Kate was 15 years old, she developed mononucleosis accompanied with painful gastrointestinal symptoms. Blair fed her mild, bland foods to ease the symptoms. When her condition worsened and symptoms became more painful with this diet, Blair knew something was wrong. Blair remembered that she was a carrier for celiac disease, a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. She took Kate to get tested for this genetic disease and Kate tested positive. Blair took her to Children’s National Medical Center for care.

"There was no question where we wanted to go," said Blair. "When Kate was a baby, she received treatment for a heart condition with Dr. Gerard Martin and the cardiac team at Children’s. We had a wonderful experience with the family-centered staff, so we trusted Children’s already. They catered as much to our emotional needs as they did to Kate’s physical needs."

At Children’s National, Kate and her family received the care they needed with the GI team. Children’s National has the largest and most experienced pediatric GI team in the region that has dedicated nurses, nurse practitioners, physician assistants, dieticians, and other support services with many years of experience committed to helping families effectively manage their child’s condition. Additionally, Children’s National now has a dedicated celiac disease program within the Division of Gastroenterology, Hepatology, and Nutrition.

"The program really works to support families through this life changing event," said Blair. "They understood that we needed help, not only physically, but emotionally to cope with the disease."

Kate’s physician, Parvathi Mohan, MD, assisted in educating Kate and her family about celiac disease and what they needed to do to keep it in line.

The Raber family learned that 1 in 100 people have celiac disease and many even don’t know it, making it one of most common diseases in children. People who have celiac disease are permanently intolerant to gluten, a protein found in wheat, rye, and barley. Gluten is found mainly in foods, but may be found in products we use every day, such as medications, vitamins, and the adhesive used in stamps and envelopes.

The only treatment for celiac disease is to remove gluten from the diet. For some patients with celiac disease, starting a gluten-free diet can result in improvement in as little as two weeks.

Their entire family went gluten-free and soon after, Kate improved quickly.

Now that Kate has her celiac disease under control, she’s able to perfect surfing, one of her favorite hobbies.
Now that Kate has her celiac disease under control, she’s able to perfect surfing, one of her favorite hobbies.

Looking back, all the signs were pointing to celiac disease, said Blair. Kate was diagnosed as lactose intolerant when she was 12 years old. Generally, lactose intolerance is a red flag for celiac disease because the gluten destroys the lactose receptors in the small intestine. Today, with a gluten-free diet, Kate is no longer lactose intolerant because her small intestine has had time to repair the receptors.

Learn more about celiac disease. If you suspect that your child might have celiac disease, call the Division of Gastroenterology, Hepatology and Nutrition at 202-476-3032.
 


   
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