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NIH MedlinePlus the Magazine, Trusted Health Information from the National Institutes of Health

Feature:
Celiac Disease

Four Inches and Seven Pounds…

Maghann and her daughter Stella

Maghann and Stella—managing celiac disease.
Photo courtesy of Maghann Ruiz

Much to her family's relief, Stella Ruiz, who will be five years old in October, grew four inches and gained seven pounds between last September and February—despite her celiac disease.

Her favorite foods are fresh fruit and pancakes—as long as they are gluten-free.

"Stella has celiac disease," explains her mother, Maghann. "She's a normal little girl, who goes to school, has friends, and does gymnastics."

"She's a normal little girl, who goes to school, has friends, and does gymnastics."

But it took months of stomach aches, chronic diarrhea, minimal growth, many visits to her pediatrician, and much testing before a gastrointestinal specialist finally diagnosed Stella. She's been on a strict gluten-free diet ever since, like so many thousands and thousands of other people young and old with celiac.

The biggest hurdle the family faces in managing the disease is guarding Stella's food from contamination. "Even a crumb of wheat is critical to her health," says Maghann. "So we bought a new toaster, for example. But it's very difficult at school or restaurants, and when we travel, which we do a lot."

Maghann's solution is to make most of the family's food, being especially vigilant about sourcing ingredients from "gluten-free certified" producers. "You really have to read the labels closely to see if the product is from a gluten-free facility," she says.

"Because we have had other serious medical issues, we are used to celiac."

Maghann's advice for those newly coming to the condition are to:

  • Learn about celiac disease on medlineplus.gov and keep up with the latest developments
  • Share what you know about celiac with your children, family, friends, caregivers, teachers—everyone
  • Tell your kids never to share their friends' foods
  • Create gluten-free, safe menus
  • Join celiac family forums, great for mutual understanding and support, not to mention favorite gluten-free recipes.

"It is so important to learn and share with other families," Maghann emphasizes, "because we're all in this together."

Hope through Research

The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) conducts and supports research on celiac disease. Researchers are studying new options for diagnosing celiac disease, including capsule endoscopy, which involves patients swallowing a capsule containing a tiny video camera that records images of the small intestine.

Several drug treatments for celiac disease are being studied. Researchers are also studying a combination of enzymes—proteins that aid chemical reactions in the body—that might change gluten in ways that prevent it from causing an immune reaction before it enters the small intestine.

Scientists are also developing educational materials for standardized medical training to raise awareness among healthcare providers. The hope is that increased understanding and awareness will lead to earlier diagnosis and treatment of celiac disease.

Participants in clinical trials can play a more active role in their own health care, gain access to new research treatments before they are widely available, and help others by contributing to medical research.

For information about current studies, visit www.clinicaltrials.gov

Spring 2015 Issue: Volume 10 Number 1 Page 5