Celiac disease: 5 things parents need to know

celiac-disease
Dr. Dascha Weir, associate director, Boston Children’s Celiac Disease Program

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.

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Signs and symptoms of celiac disease

The symptoms of celiac disease can be very different from child to child. In some cases, Weir says, a child may have celiac disease and not exhibit any symptoms. “Celiac disease is common, and most people don’t know that they have it,” she says.

Signs and symptoms of CD in children include:

  • abdominal pain and/or cramps
  • abdominal distension  (bloating)
  • diarrhea (loose stools)
  • constipation (hard stools)
  • nausea
  • vomiting
  • decreased appetite
  • increased fatigue
  • weight loss or poor weight gain
  • short stature or poor growth
  • frequent mouth ulcers

According to Weir, other signs and symptoms of CD may include: delayed puberty, behavioral problems, iron deficiency, osteopenia/osteoporosis, hepatitis, arthritis, infertility, migraines, seizures and neuropathy.

Kids with concerning symptoms or those in high-risk groups (such as having a family member with celiac disease, having diabetes mellitus, autoimmune thyroid disease or Down syndrome) should be evaluated for celiac disease.

“It’s important to be aware that celiac disease can show up in varied ways, and children with persistent symptoms or in high-risk groups should be tested for celiac disease,” she says.

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Gluten sensitivity doesn’t mean celiac disease.

Gluten sensitivity is often an indication of celiac disease, but there are other reasons why a child may feel better on a gluten-free diet. Your child may have one of the following:

  • a food allergy or an allergic gastrointestinal disease such as eosinophilic esophagitis (condition also known as “EE” or “EoE.”) Eosinophilic esophagitis is an allergic reaction that causes inflammation and damage to the esophagus — the muscular tube that connects mouth to stomach.
  • irritable bowel syndrome (IBS)
  • non-celiac gluten sensitivity

“If you feel your child is sensitive to gluten, seek help to try to identify why,” Weir says.  “Identification of an underlying autoimmune disease, such as celiac disease or a food allergy is important.”

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Diagnosis first. Treatment second.

Celiac disease is a genetic disease and diagnosed via a blood test and endoscopy. During an endoscopy, a physician will biopsy the small intestines. This is an important test because it allows the doctor to examine the villi.

If you suspect your child is gluten sensitive, it is important to have her evaluated by her pediatrician — ideally in partnership with a pediatric gastroenterologist.

“The gluten-free diet is a highly effective treatment for celiac disease,” Weir says. “Removing gluten stops the inflammatory process allowing for normalization of elevated celiac markers in the blood and intestinal healing. However, if this happens before the evaluation for celiac disease is complete, the diagnosis can be missed.” 

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A gluten-free diet is the only treatment for celiac disease.

“Managing a strict, gluten-free diet is doable but can be tricky because even very small amounts of gluten can cause ongoing intestinal damage,” Weir says.

If your child has been diagnosed with celiac disease, Weir recommends consulting with a dietician who specializes in the disease to discuss dietary options, recipes, shopping and cooking tips.

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Stay connected.

Check in annually with your child’s celiac providers to stay up to date with new developments and recommendations. It’s also important for the medical team to monitor your child’s growth, nutrition and response to treatment.

“As with any autoimmune or chronic condition, keeping in contact with your medical team is an important way to ensure long-term treatment success,” Weir says.

You may also consider joining Boston Children’s Celiac Kids Connection — a community of support, education and advocacy for families with children diagnosed with celiac disease.

“Our celiac support group, Celiac Kids Connection, has been active for almost 25 years,” Weir adds. It provides invaluable information and support to families, teens and kids facing the challenges of celiac disease.”

Learn more about the Celiac Disease Program and how Boston Children’s treats the condition.