Most kids with celiac disease -- a serious digestive disorder -- have never been diagnosed. Although the condition was once considered rare in this country, improved diagnostic tests have shown that it actually affects about one in 130 people -- including toddlers. Unfortunately, both doctors and parents often overlook celiac disease because they don't realize how common it is, and the symptoms are easily mistaken for other problems. Here, we've got common questions about this often confusing condition.
What is celiac disease?
A. It's a genetic disease of the digestive system that's triggered by gluten, a protein found in wheat, as well as rye and barley. "Parents sometimes use the words allergy or intolerance to help other people understand celiac disease, but it's actually an autoimmune disease and not an allergy," says Nanci Pittman, MD, a pediatric gastroenterologist at Mount Sinai School of Medicine, in New York City. When a child with celiac disease eats foods containing gluten, her immune system attacks the lining of her small intestine so that she's unable to absorb all the nutrients in food. As a result, she may stop growing, become malnourished, and develop a variety of serious consequences such as anemia, chronic diarrhea, and osteoporosis.
How young does celiac start?
A. Kids may develop symptoms a few weeks after they begin eating food that contains gluten but often don't show signs of the disease for years. No one knows why symptoms are often delayed. Some experts believe they may be triggered by a stressor, such as an infection.
Do all children have the same symptoms?
A. No -- and that's why doctors often miss the diagnosis, particularly in older kids. Toddlers and young children are more likely to show classic signs of celiac, such as chronic diarrhea, vomiting, failure to thrive, weight loss, gas, abdominal pain, and bloating. They're often clingy and irritable. "As children get older, the symptoms become more varied and difficult to diagnose," says Dr. Pittman. Those signs might include anemia, a skin rash, defects in tooth enamel, joint pain, delayed puberty, short stature, or less typical gastrointestinal problems, such as constipation rather than diarrhea.
How is celiac diagnosed?
A. If your child has symptoms or growth problems, your pediatrician or gastroenterologist can give him a blood test. Although false-negative results are common in babies and toddlers, a school-age child with a negative test probably doesn't have celiac. If the test is positive -- or your doctor thinks it may be a false negative -- your child will need a biopsy of his small intestine to see whether it's been damaged by gluten. A biopsy is an outpatient procedure performed in the hospital under general anesthesia; the doctor passes a small tube through a child's throat into his intestine.
Can parents pass celiac to their kids even if they don't have it?
A. Yes, you can still carry the genes for celiac. The odds of your child having it are roughly one in 10 if one of you has it; the odds increase if more than one relative has it. If any of your child's grandparents, siblings, aunts, uncles, or first cousins have celiac, she should have a blood test -- even if she has no symptoms.
What's the treatment for celiac?
A. There's no cure or medication for this lifelong condition, although researchers are studying drugs that may prevent gluten from entering the cells in the small intestine. For now, the treatment is to follow a strict gluten-free diet, which allows a child's small intestine to heal so it can work properly. Gastrointestinal symptoms often disappear within weeks, and kids who had trouble growing usually catch up. But your child can't go back to eating gluten. "It's important to cut out all traces of gluten because the immune system doesn't distinguish between a small amount and a lot of gluten," says Dr. Alessio Fasano, MD, medical director of the University of Maryland Center for Celiac Research. It's in obvious sources like bread and pasta, but gluten can be hidden in everything from medications to food additives. Even Play-Doh (usually made with wheat flour) is off-limits. Fortunately, there's been a boom in gluten-free products, from chicken nuggets to brownies. Some restaurants also offer gluten-free menus.
Where can I get more help?
A. You can find local support groups by contacting the Celiac Disease Foundation (celiac.org) or by searching groups.yahoo.com or healia.com. For info about gluten-free restaurants, grocery stores, and hotels when you travel, visit glutenfreetravelsite.com or glutenfreepassport.com.
True Story: "Celiac's been in our family forever"
Elizabeth Kramer and her oldest child, Ricky, were both diagnosed when he was 18 months old and had chronic diarrhea. When his pediatrician suggested testing for celiac disease, Kramer, who lives in Santa Monica, California, asked to be tested also. She'd been having diarrhea, too, and knew the disease ran in the family -- her grandmother, mother, and sister had all been recently diagnosed.
Ricky's initial test was negative, but hers was positive. Since false negatives are common in toddlers, they both switched to a gluten-free diet, which eliminated their symptoms and confirmed the diagnosis. "It made an amazing difference," says Kramer, whose husband, James, and middle child, Brianna, now 2, both tested positive for celiac genes but don't have any symptoms. Her 9-month-old, Chelsie, is too young for testing but may have benefited from her mom's new diet. At birth, she weighed a pound more than her siblings, and she's been less fussy.
Her top tips:
- Take gluten-free cupcakes to school and ask the teacher to keep them in the freezer for classmates' birthdays.
- Make homemade Play-Doh with rice flour.
True Story: "Our daughter ate dirt."
At Kensley Crabtree's 3-year checkup, her mom, Linda, told the pediatrician that she was worried about two things: Kensley (in chair, left) didn't seem to be growing, and she was fascinated with soil -- not just playing with it, but eating it. A blood test showed that Kensley was anemic, but she seemed otherwise healthy. After seeing an endocrinologist about Kensley's growth, the family was referred to a pediatric gastroenterologist, who finally diagnosed celiac disease. Doctors later explained that the illness had caused Kensley's anemia, which in turn may have led her to want to eat dirt: Pica -- the frequent urge to eat nonfood items -- is sometimes associated with nutritional deficiencies.
"At first it was overwhelming, but I realized that I just needed to take it one meal at a time," says Crabtree. As soon as Kensley stopped eating gluten, she also stopped eating dirt and started growing. Both parents and all three of the other kids in the family have now been tested, and Kensley, now 6, is the only one who has the disease. "I don't think Kensley feels like she's missing out. Whenever she says, 'I wish I could eat that,' we find a gluten-free recipe or product so that she can," says Crabtree.
Her top tips:
- For the sake of simplicity, try to make one gluten-free dinner for everyone as often as possible.
- Label all of your child's food in the refrigerator and pantry with her name. Don't forget to include peanut butter, jelly, and other types of staples that could easily get cross-contaminated (with wheat crumbs from a sibling's toast, for instance).
True Story: "Our son started losing weight."
As an internist in New Haven, Connecticut, Dana Ranani, MD, treats adults with celiac disease, but it took her a while to realize her toddler might have it. Jack's symptoms -- gas and occasional vomiting -- didn't seem unusual. But soon after he turned 2, she and her husband noticed that their once chunky son was losing weight. Their pediatrician ordered a blood test for celiac, which came back positive, and then Jack had a biopsy that confirmed the diagnosis. "We went straight from the biopsy to a store that sold gluten-free food," Dr. Ranani says.
Within three months, Jack gained 10 pounds. "Sure, his diet is restrictive, but he's going to be healthy," says Dr. Ranani. "He's now 5 and loves his gluten-free pizza -- to him, that's just what pizza tastes like."
Her top tips:
- Seek out support: Other families who have children with celiac disease will give you the scoop about the best-tasting products to try.
- Explain to your child that lots of people have things they can't eat -- Jack's father, Scott, is allergic to fish, for example -- so he doesn't feel so different.
Originally published in the December 2008 issue of Parents magazine.
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