Seattle Children's New Program Helps Families Live a Gluten-Free Life

For some, avoiding gluten is not a choice.

This article appears in print in the April 2018 issue, as part of the Top Doctors cover story. Click here to subscribe.

These days, it seems as though gluten, a protein found in wheat and some other grains (and in foods such as bread, beer, soy sauce and many others), is the trendy ingredient to avoid. And for good reason. Those with a gluten sensitivity or intolerance often experience unpleasant symptoms that include bloating, constipation, fatigue, vomiting and diarrhea.

But for the 1 percent of the population diagnosed with celiac disease, avoiding gluten is not a choice. For those with this chronic, incurable autoimmune disorder—which often develops during childhood—even a miniscule exposure to gluten causes their immune system to attack their small intestine. 

Celiac disease—which has many of the same symptoms triggered by a gluten sensitivity or intolerance—can cause permanent intestinal damage as the condition aggravates the gastrointestinal track, causing inflammation, which is a risk factor for intestinal cancer, says Dr. Dale Lee, gastroenterologist and celiac specialist at Seattle Children’s Hospital. 

With gluten in so many foods, it’s not surprising that managing the disease is a challenge, especially for children. That’s why Lee became interested in starting a program for children and families with this disease. The multidisciplinary Celiac Disease Program at Seattle Children’s, modeled after a similar program at The Children’s Hospital of Philadelphia, was launched late last year. “Seeing a physician or nurse practitioner for celiac disease is very important, but it is even more important to see a dietitian at the same time,” says Lee of the multidisciplinary approach. 

The Seattle Children’s team includes dieticians, gastroenterologists, psychologists, nurses and social workers. Together, they work to help families determine what food to buy, how to read labels and what to eat (including advice for eating at school); monitor the status of the disease; help patients cope emotionally with the disease through the Seattle Children’s celiac disease support group (which has more than doubled in size after just four classes); and manage symptoms—all in one place.

Kids with celiac disease have to exercise caution with all of their food, but with help from Seattle Children’s new program, they’ll have the resources to navigate a healthy life.

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