From the Allergic Living magazine archives.
Janet Smith was sure she wasn’t overreacting. Her 18-month-old daughter Heather had terrible symptoms: she was throwing up eight times a day, her stomach was bloated, and her diapers needed to be changed constantly. The pediatrician had told Smith it was the stomach flu. “But how long does stomach flu last?” she recalls wondering. “Four months?”
Finally, at her wit’s end, Janet took Heather to a gastroenterologist. He took one look at the tiny girl with skinny arms and legs who, at a year-and-a-half had only gained six pounds since birth, and knew the problem: celiac disease.
How celiac disease works
This autoimmune disorder affects the small intestine. When someone with celiac disease eats gluten – a protein found in wheat, barley and rye – the immune system attacks the small intestine and progressively destroys the villi, tiny finger-like projections that absorb the nutrients in food.
Heather was sent to the Hospital for Sick Children in Toronto for a biopsy, which confirmed the diagnosis. She was immediately put on a gluten-free diet , and the symptoms reversed. She’s now a healthy 9-year-old who loves to swim and has a passion for dogs.
But her disease isn’t gone; when Heather accidentally eats gluten, she vomits within the hour, and has diarrhea for weeks. Still, her mother considers her one of the lucky ones, because she was diagnosed early. Many children suffer for years with unrecognized celiac disease symptoms.
The gastrointestinal symptoms that Heather endured – vomiting, diarrhea and a bloated stomach – are typical of celiac disease in kids, says Dr. Stefano Guandalini , founder and director of the University of Chicago Celiac Disease Program and a renowned researcher.
The intestine is inflamed, and the body isn’t absorbing the food that the child is eating, which results in malnourishment, weight loss, lack of growth, and personality changes such as sadness and crankiness. Other symptoms include anemia, fatigue, low bone density and short stature. The trouble is, these symptoms are either hard to spot, or could be indicative of other conditions.
Timothy Cooper didn’t have the typical “celiac baby” look and his mother, April Cooper says he was a very happy infant. But from the age of six months until he was 11 years old, he only gained 30 pounds. He suffered from diarrhea, stomach pain and vomiting to the point of needing an intravenous drip to stop dehydration.
“He had all these symptoms that nobody saw,” says Cooper, who lives in Whitby, Ont. Finally, after Timothy didn’t gain any weight  in six months, a pediatrician ordered blood tests for celiac disease, which came back positive, as did an intestinal biopsy.
Today, after being on a gluten-free diet for three years, Timothy’s weight has almost doubled, and he’s catching up in height to the shorter students in his class. “It really does make a difference when you absorb the food that you’re eating,” notes his mother.Next: Symptoms reversible if caught in childhood
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The good news is that if celiac disease is caught before the child becomes an adult, the effects should completely reverse. “If the patient goes on a gluten-free diet, everything goes back to normal,” Guandalini says. Over half of children with celiac disease, even those who show few-to-no symptoms, have low bone density. Within a year on the gluten-free diet, Guandalini says that density will be normal in almost all of them. Unfortunately, recently diagnosed adults will not see such a quick improvement.
While children with celiac can exhibit depression and even psychosis, Guandalini stresses that the often-cited link between disorders such as autism and attention deficit disorder and celiac disease is unproven. “Many parents expect the gluten-free diet to help [those]. It doesn’t.”
But fortunately, having celiac in childhood is not likely to have a long-term effect on brain function if the gluten-free diet is followed. Guandalini says that’s because the most crucial time for brain development is before birth, and in the first six to eight months of life.
Celiac doesn’t occur until a few months after being on a gluten-containing diet, and most infants won’t be fed such food until after six months of age. Still, it’s impossible to be certain that slowed development, such as delayed speech, isn’t because of the disease.
Once considered quite rare, celiac is now estimated to occur in one out of every 133 people in North America. As awareness increases, more children are being diagnosed, and that’s a welcome change. Janet Smith runs the Toronto chapter of a support group called R.O.C.K., or Raising our Celiac Kids.
The organization was founded in the United States 16 years ago, and today has more than 65 U.S. chapters. The group allows parents to voice concerns, share ideas and learn about living with celiac. Smith adopts a positive tone as a leader, and reminds parents that there are worse things in life.
“I think the main frustration for all the parents is that the doctors didn’t diagnose it,” she says. Although being a parent of a celiac child is challenging – the expense of gluten-free food as well as the continuous task of explaining to teachers, relatives and friends what your child cannot eat – it does not have to be daunting. After all, nothing can be worse than knowing your child was suffering needlessly, sometimes for years.
Diagnosing the Child
If you suspect your child has celiac disease, ask your doctor to perform an anti-tissue transglutaminase (TTG) blood test, the most sensitive test available. Almost all children (over the age of 2) with celiac will test positive. That means if the test is negative, celiac can be ruled out with almost 100 per cent certainty, Guandalini says.
If this test is positive, then a gastroenterologist must do an endoscopic biopsy of the small intestine to confirm the diagnosis. This can be done at any age.
It’s very important NOT to begin a gluten-free diet without a proper diagnosis, as it will interfere with the test results. Furthermore, a child who was put on a gluten-free diet without proof of the disease is unlikely to stick with it.
Did you know?
Researchers have discovered that children with celiac disease tend to have very long eyelashes.
- Allergic Living’s celiac-friendly recipe collection 
- The Gluten-free Girl on bringing up gluten-free baby 
- Dietitian Shelley Case on gluten-free Breakfast Solutions 
First published in Allergic Living magazine. To subscribe or order a single issue, click here .
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