AS a mouse magically turned into a coachman, Edyth Moldow was supposed to look small in her dance school’s production of the ballet Cinderella. But her mom’s breath caught when she realized just how tiny and pale her daughter looked compared to the other children leaping and twirling across the stage.
“Omigosh, she looks sick,” Elyn Shindler Moldow recalls thinking. “There is something wrong with my child!”
Over an 18-month period, Shindler Moldow and her husband, Greg Moldow knew that their daughter, then 9 years old, had fallen behind her peers in height and weight. But the couple from Denver simply figured their daughter was destined to be petite. Sure, Edyth fretted that she was smaller than all her friends, but she had no health problems save for the rare headache or sore tummy. Those didn’t seem out of the ordinary. Even the family’s pediatrician, who saw the girl once a year for an annual checkup, said she was fine, if a little thin.
Now, sitting in the darkened theater, Shindler Moldow knew in her gut that they had all been wrong.
The next day, she phoned the pediatrician. She recalls being blunt: “I’m calling because my mother’s intuition is screaming that Edyth is not growing up. She is not thriving.”
Once the pediatrician began looking for abnormalities, she was struck, too. Edyth, who had been in the 50th percentile in height for her age, had fallen to the 20th percentile, while on the weight charts, she’d slipped to the 10th percentile, plummeting down from the 55th percentile. The girl was inundated with tests — at least 15 of them — as the adults around her tried to solve the mystery of her failure to thrive.
She was tested for anemia, growth hormones and thyroid problems; Shindler Moldow herself has Hashimoto’s disease, an autoimmune condition in which the thyroid gland, a crucial part of the endocrine system, does not produce enough of the hormone that regulates the metabolism.
Every one of Edyth’s tests came back with results within normal parameters except two: a bone scan showed she was two years behind where she should be, and an anti-tissue transglutaminase (tTG) blood test, which identifies the markers for celiac disease, proved positive.
The parents were told their daughter needed to have an intestinal biopsy to confirm the diagnosis of celiac disease, an autoimmune condition in which the body virulently rejects gluten, a protein in wheat, barley and rye products. This rejection takes the form of damage to the villi, small, finger-like projections in the lining of the small intestine that play a pivotal role in a person’s ability to absorb nutrients. In children, that can have a big impact on weight and height.
While Edyth’s parents were alarmed, there was also a sense of relief. Finally, they had a probable diagnosis, and it was one they were ready to learn how to handle. It was confirmed the day of the biopsy: Edyth had celiac disease, for which there is no cure. But her symptoms could be reversed as long as the girl cut gluten from her diet, now and for the rest of her life. It wouldn’t be easy, but the family was up for the challenge.
How to Spot in Kids and Teens
In adults, the symptoms of celiac disease are myriad and varied, including apparent gastrointestinal signs such as bloating and diarrhea or constipation, but also osteoporosis, anemia, thyroid conditions, an unsightly skin rash (dermatitis herpetiformis), infertility and in rare instances, even lupus.
Children: In children, the disease can look different. With toddlers, experts counsel that parents should watch for classic gastrointestinal signs such as bloating and diarrhea, but also poor growth, failure to thrive, irritability and, on the GI side, frequent vomiting.
Teen years: The symptoms that show up in the tweens and teens can be much harder to spot, unless you’re looking for them. At these ages, “non-GI symptoms are frequently seen,” says Dr. Dascha Weir, a pediatric gastroenterologist and associate director of the celiac disease program at Boston Children’s Hospital.
“What we see a lot is poor growth or delayed puberty – a failure to thrive that often shows itself in sub optimal weight gain,” she explains. Other atypical symptoms in school-age kids and teens may include anemia, headaches, mood and focus problems and joint issues.
Some children can seem to have no symptoms whatsoever, and “you have to be a savvy general practitioner to realize when someone needs to be tested,” Weir adds. She is reluctant to describe these young people as “asymptomatic”, even though they have no health complaints but test positive for the condition.
Sometimes, the gastroenterologist says, kids won’t understand that they have symptoms; it’s only after they go on a gluten-free diet that they realize how good they could have been feeling before.
Typically, Weir says that children at risk of celiac disease are identified when a family member is diagnosed, or when another autoimmune condition connected to celiac disease, such as Type 1 diabetes or thyroid disease, is involved.
But research out of Finland highlights just how important it is for general practitioners and pediatricians to screen young patients regularly for height and weight, no matter what their family history, as a means to diagnose the condition far earlier than has often been the case.
The 2015 study, led by Dr. Antti Saari of the University of Eastern Finland and published in the journal JAMA Pediatrics, tracked the growth and weight of 177 children with celiac disease from birth until the condition was discovered. Using five distinct age and sex-specific measurements to follow the children, the researchers found that, on average, girls with celiac disease were shorter than their peers in the general population two years before diagnosis, while boys were shorter for one year beforehand.
“(An) acceptable screening accuracy can be achieved for celiac disease via the use of several growth-monitoring parameters in combination, preferably using computerized screening algorithms that are integrated into an electronic health record system,” the researchers wrote. “These children could have been detected several years earlier by a well established growth-monitoring program.”
While there is still much work to be done, the better news is that celiac disease is being caught more frequently today, since specialists are starting to recognize the wide range of its symptoms in kids. At Boston Children’s, for example, hospital records show that 185 children were diagnosed in 2013, compared to 89 back in 2006. “A lot of this is due to increased awareness,” Weir says.
The earlier a child is diagnosed, the better. Dr. Edward Hoffenberg, a pediatric gastroenterologist with the celiac center at Children’s Hospital Colorado in Denver, notes that growth failure, especially over a protracted period, can have big consequences, such as never reaching full height.
That’s because our bones – the body’s storage bank for calcium, a mineral that is the key to the building of skeletal tissue – don’t grow throughout our lives. The peak growth period is from childhood through adolescence and early adulthood; from then on, we are only able to withdraw calcium from the banks and unfortunately, in bone health, there is no such thing as overdraft protection.
“If over time you withdraw more calcium than has been deposited, your bones may become thinner and weaker,” Hoffenberg says. “When I diagnose kids with celiac disease, they are already behind. Once they know to go on a gluten free diet, at the very least, they aren’t at risk of falling behind any farther. It may take them a year or more to make up the lost ground, but kids tend to heal and bounce back much faster than adults do.”
The High Costs of Missed Diagnosis
Billy Buhring knows all about bone and joint problems. Now an 18-year-old senior in high school in the Philadelphia area, he was once a promising swimmer with a powerful butterfly stroke and had hoped to qualify for district competitions. But three years ago, when he was about to enter school as a freshman, he began to have shoulder pain that was so bad, he couldn’t do physiotherapy exercises with light hand weights, never mind move his arms like windmills through the water. One orthopedic surgeon dismissed what he was feeling as growing pains that would soon go away. Another ordered MRIs of each shoulder that came back normal.
In all, Billy saw eight specialists. By the time a rheumatoid arthritis specialist threw up his hands, the teen couldn’t even throw a football with his dad. At no time did anyone ask if there was a history of celiac disease in his family. While his mom, Mary Buhring, has the disease, she didn’t think to mention it to the doctors because she didn’t know that it was hereditary and that her children should have been screened.
In fact, the possibility wasn’t raised until the following year, when Billy was seeing a chiropractor. “In one of the sessions, I mentioned that my mom has celiac disease,” he recalls. “The chiropractor asked if I had it. I said, ‘I have no idea.’ He said it would be a good idea to be tested.”
After an 18-month ordeal of Billy living with pain, diminishing confidence and the family getting no closer to an answer, celiac testing finally solved the mystery. “At one point, it got so bad, we were worried he had cancer,” his mom says.
Now the office manager for Beyond Celiac, she feels guilty for not having known the disease is genetic: “If I’d have worked at the foundation back then, I would have gotten Billy in for testing right away. I wish I’d known. I should have known.”
Billy improved rapidly on the gluten-free diet. His chronic shoulder pain vanished after two months, and his outlook brightened with both the physical improvement and knowing his diagnosis.
Fatigue or anemia can also be celiac clues, even in young kids. For Stephanie Wells of Calgary, Alberta, it was her daughter’s constant tiredness that made her suspect something was not right. Claire Lucas was 3 at the time, a tiny, pale girl who didn’t want to go outside and asked to be carried home from school.
“Once, it snowed for the first time that year, which was magical for Claire’s older brother and his friends. They went out to play and make snowmen,” Wells says. “I asked Claire, ‘Don’t you want to go out, too?’ She said she would rather just sit at the window and watch. I thought maybe she was low in iron.”
So it went, until finally, Wells took Claire in for tests. The results came back in the summer and when the pediatrician called to have the little girl brought back to the office, Wells, an insurance adjuster, asked her husband, Tony Lucas, a teacher on vacation, to take her. “OK, it’s not the worst thing,” he said when he called his wife. The doctor had found markers for celiac disease in the blood test, and the child would need a confirming biopsy.
The diagnosis at the age of 4 would forever change Claire’s life. After only six months on a gluten-free diet, she shot up in height, her energy gradually increased to normal levels and her mood brightened. Now 9, she makes her own gluten-free smoothies, loves horses and plays outside at every opportunity.
As for Edyth Moldow, she is now 14 years old and glowing – a student in the writing program at the Denver School of the Arts and a self-appointed vegetarian who understands what celiac disease did to her and that she should never eat foods that contain gluten.
“When the biopsy was done, the doctor said that even though there were signs of damage in her small intestine, it was not yet severe,” says Elyn Shindler Moldow.
“That’s why my greatest message to parents is this: If your child isn’t growing, don’t wait to see what happens. Because we caught Edyth’s celiac disease, she will be able to make up most or all of her growth.”
Edyth is still passionate about dance and she has been accepted into an elite students’ program in the summer of 2015 at the Oregon Ballet Theatre in Portland. Oh, and last Christmas? She played, not a little mouse, but Clara, the brave lead in the ballet “The Nutcracker,” who distracts the villainous Mouse King with her slipper and gets to travel to the beautiful Land of Sweets, where the Sugar Plum Fairy rules.
“How awesome is that?” asks her mother. “Clara!”
First published in Allergic Living magazine; learn about the new e-magazine here.