Brother and sister thrive despite digestive disorder
Ten-year-old Matthew has always had a healthy appetite. A typical kid, he loves pizza, macaroni and cheese and – especially – donuts. That’s why his parents, Marla and Brian, were mystified by his slow growth. In one year he dropped from the 50th percentile in height for his age to the 25th, and after age 6 he had virtually stopped growing. Although Matthew appeared healthy and was rarely sick, when his parents expressed concern about his lack of growth, his pediatrician reassured them that Matthew would eventually “catch up.”
“He looked like all the other kids in kindergarten, but by second grade he was noticeably smaller,” says Marla. “Matthew didn’t seem to care, but I knew something was wrong. A kid doesn’t just stop growing.”
In December 2008, the family was referred to Children’s Memorial Hospital endocrinologist Mary Kreiter, MD. Kreiter spent two hours with Matthew and his parents discussing his medical history and, on a hunch, suggested Matthew be tested for celiac disease.
Often undiagnosed, celiac disease is a common genetic condition affecting 1 in 150 people. When individuals with celiac disease eat foods containing gluten – a protein found in wheat, rye, barley and other grains – it causes an immune reaction that damages the surface of the small intestine. The result is an inability to absorb certain nutrients, causing vitamin deficiencies. If left untreated, celiac disease can lead to such complications as malnutrition, loss of bone density, cancer, anemia and stunted growth.
Matthew then saw Miguel Saps, MD, an attending physician in Children’s Memorial’s Division of Gastroenterology, Hepatology and Nutrition. Physicians in the division treat nearly 70 children with celiac disease each year. Saps ordered blood tests and biopsies for both Matthew and his younger sister Rebekah, because celiac disease tends to run in families. The family was shocked when they received the results: both Matthew and Rebekah tested positive for the disease. The damage to Matthew’s small intestine was considerably more advanced than that of 8-year-old Rebekah.
Celiac disease is a common genetic condition affecting 1 in 150 people.
“Neither of the kids had any of the typical symptoms of the disease,” says Marla. “I cried for days afterwards thinking, ‘How could I have not known my kids were sick?’ But Dr. Saps was so reassuring. His attitude was, ‘It’s not the end of the world, and we’ll help you get through this.’”
Rebekah has what is called the “silent” form of the disease, whose typical symptoms include diarrhea, decreased appetite, stomachache and bloating, poor growth, and weight loss. “We increasingly see patients who do not have any obvious symptoms,” says Saps. “There is a whole spectrum of children with celiac disease, and we have to be vigilant in diagnosing it.”
Although there is no cure for celiac disease, it can be effectively managed through a gluten-free diet, which can reverse the damage to the small intestine.
Nurse Dolores Cupuro, who Marla says has been a major source of information and support, arranged an appointment for the family with a hospital dietician, who provided them with information about following a gluten-free lifestyle and explained that many grocery stores provide lists of gluten-free foods they carry. Today the entire family eats gluten-free food, and has even found restaurants in their area with gluten-free menus.
Matthew is currently in the 5th percentile in height for his age, but his mom says the outgoing boy isn’t self-conscious about his size and has lots of friends. While Saps says it’s too soon to make any predictions about Matthew’s ability to catch up to his peers, he says that children with celiac disease have a greater chance to reach their full height potential when diagnosed early.
“I look back on the experience now and think, ‘What was I so depressed about? That was nothing!’” says Marla. “Both children are healthy, we all eat the same food and, if anything, the experience has brought us even closer together.”
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