Life as a Celiac Kid

• By DEBRA LEMOINE
• Advocate staff writer
• Published: Dec 30, 2008 - Page: 1E - UPDATED: 12:05 a.m.

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When Shalane Crick’s 9-year-old son, Michael, was first diagnosed with celiac disease, his first worry was how it would affect his upcoming party.

“He was very, very concerned about his birthday cake,” she said.

What to do about birthday parties, sleepovers, class parties, school lunches and summer camps are among the issues parents face when their children have celiac disease. Celiac disease is an intolerance to the wheat protein gluten, Crick said.

Crick is starting a monthly support group, Celiac Kids of Baton Rouge, for the parents of children with this disease to help them share information on how to live with it.

Celiac disease causes inflammation of the small intestines because the affected person’s body can’t digest gluten, said Dr. Brannon Alberty, a pediatric gastroenterologist with Lake Pediatric Gastroenterology. If not controlled, the disease can lead to malnourishment.

The classic image of the disease is a toddler with a bloated belly and skinny arms and legs, Alberty said. Doctors are finding less severe presentations of gastrointestinal problems like diarrhea and abdominal bloating and pain. In some cases, it shows up as Type 1 (or juvenile) diabetes or autoimmune illnesses such as arthritis or skin rashes, he said.

Celiac disease is diagnosed with a blood test and followed up with biopsies of the intestines, in part, to note the severity of damage, he said.

Some researchers think the disease is under diagnosed with the prevalence being at least 1 in every 300 people, Alberty said.

The treatment of the disease is a lifelong avoidance of gluten, he said.

“It’s simple but difficult,” Alberty said.

Crick plans to help parents navigate this new lifestyle through the support group.

Crick, who has Type 1 diabetes, got off gluten a year before her two children — a 13-year-old daughter and her 9-year-old son — were diagnosed with the disease. She said she felt less irritable and had more energy because of her new diet.

When her children were diagnosed, cooking became more challenging.