When my younger sister, Abby, was 2 years old, she became extremely anemic, had a heart murmur and was frequently in pain. My parents took her to Boston Children’s Hospital, where they diagnosed her with celiac disease. Since it’s a genetic disease, we all got tested and I tested positive. That was 12 years ago, when I was five.
Today, I look like a normal teenage girl and if you saw me on the street, you would never know I had Celiac disease. I try to remember this when I see people or meet people for the first time — you never know who has an “invisible” illness like celiac disease. …
It may be difficult for parents to hear that their child has a chronic illness. When the diagnosis is celiac disease (CD), an autoimmune disorder caused by an intolerance to gluten, there is good news. CD is treatable by changes in diet.
How it works: When food enters the stomach, it’s broken down into tiny digestible particles, which then travel through the small intestine. The small intestine is lined with villi — tiny finger-like projections that absorb nutrients from the food passing through.
In celiac disease, gluten, which is a protein found in wheat, barley, rye and oats, damages the intestine and causes the villi to break down, leaving a flattened lining that can no longer absorb nutrients as effectively.
Dr. Dascha C. Weir, associate director of the Celiac Disease Program in the Boston Children’s Hospital’s Division of Gastroenterology, Hepatology and Nutrition, discusses the disease and offers tips to help families recognize and manage the condition. …
Twelve years ago – at ages 5 and 3 – we were diagnosed with celiac disease. This means for the rest of our lives, we can’t eat any gluten whatsoever because it damages our intestines and we become really sick.
Some people don’t eat gluten by choice, but for us, there is no cheating with our diet. It only takes a breadcrumb for us to get glutened, and then we vomit continuously for hours.
Trust us, it’s not pretty.
We were really too young to remember life before celiac, but our parents say we were tired, crying and constipated a lot. …
Diba Jalalzadeh, now 12, paces energetically around the waiting room. She has been coming to Boston Children’s Hospital since she was a baby. Today she is seeing her developmental medicine specialist, Dr. Carolyn Bridgemohan.
But she’s just one of the many specialists Diba sees at Children’s.“We touch on many departments,” says Monir, Diba’s mother.
Diba was diagnosed with Crouzon syndrome when she was 10 months old. She has had several surgeries to manage the effects of her craniofacial syndrome on her skull, eye muscles, tonsils and adenoids. She currently wears a brace on her chest to counter kyphosis (her shoulders’ tendency to cave in).
Though she’s never gotten really sick, Diba is a complex patient. Unrelated to her syndrome, she also meets criteria for autism spectrum disorder, so procedures most kids will put up with can potentially make her very anxious.
Blood pressure measurement? “She doesn’t enjoy that at all, but she tries to get through it.”
Sleep study? “She had a very hard time sleeping through the night but she managed to sleep a little,” says Monir. “If you ask her to do it again, she says, ‘No I can’t even try it!'”
Eye patching for an exam? “I won’t do it.” (She finally agreed to it at the end of the visit.)
Even measuring Diba’s head circumference can be a challenge.