Diagnosed with Celiac Disease

When Dana Leander arrived in the United States from Russia four years ago, her new mom, Amy, noticed she was not well almost immediately. Dana had severe diarrhea that could not be relieved and her abdomen was bloated, a sign of malabsorption of food and nutrients. Amy took her to pediatric experts at Brenner Children’s Hospital, where Dana was diagnosed with celiac disease.

Celiac disease is a chronic digestive disorder that is caused by a sensitivity to gluten found in wheat, rye or barley products. If left untreated, celiac disease keeps the body from absorbing nutrients including vitamins and minerals, often leaving a patient malnourished. Most patients report gastrointestinal symptoms such as bloating, diarrhea, and abdominal cramps. However some patients have no gastrointestinal symptoms but experience other problems such as anemia, decreased energy or short stature.

The disease can also mimic other gastrointestinal diseases such as Crohn’s disease, irritable bowel syndrome and gastric ulcers. A blood test and biopsy are used to diagnose the disease. Treatment includes eliminating all foods containing gluten from the diet.

“Three days after I placed Dana on a gluten-free diet, she was symptom-free,” Amy Leander said. “It was amazing.”

Today, Dana’s symptoms are completely under control and she is enjoying life as an active five-year-old.

“Since Dana was diagnosed as a young child, she really doesn’t miss wheat products,” Leander said. “When Dana attends a birthday party, she celebrates with her own gluten-free cupcake. She really doesn’t know any different.”

Brenner Children’s Hospital, part of Wake Forest University Baptist Medical Center, is one of the few centers in the country conducting research on the disorder, which can sometimes be difficult to diagnose, said Ivor D. Hill, M.D. a pediatric gastroenterologist and expert on celiac disease. “Treatment involves following a gluten-free diet for life. Once they do this, many symptoms will cease and the patient can lead a healthy, normal life.”

It is easier said than done in some cases.

“Within a month of her diagnosis, I had read every book written on the subject of celiac disease,” Leander said. “Parents have to be more vigilant beyond the kitchen table. Arts and crafts products like glues and play dough can contain gluten as well as lotions, shampoos and bubble bath. Absorption through the skin it not an issue but Dana puts her fingers and these products in her mouth which creates the potential for a relapse.”

Dr. Hill agrees that people with the disease have to be aggressive about reading food labels and making good food choices.

“Patients have to diligently find ways to prepare foods without these products,” Hill said. “It’s a matter of knowing what is good for you and incorporating it into your diet.”

Celiac disease is found in about 1 in 133 people in the United States.

Because of a lack of awareness of the many ways it can manifest, celiac disease may go undiagnosed for many years and patients who suffer from it are often incorrectly treated for other conditions such as irritable bowel syndrome and lactose intolerance, Hill said.

The disorder can be asymptomatic for many years, then a stressor can trigger the disease, causing the patient to experience symptoms including bouts of diarrhea, vomiting and abdominal pain when exposed to foods containing gluten.

“Dr. Hill has been an excellent resource, doctor and friend,” Leander said. “We are so lucky to have someone with his expertise in our community. He’s a wonderful doctor.”