What families need to know about managing a child's celiac disease

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As a pediatric gastroenterologist and the medical director of the University of Chicago Celiac Disease Center, I help families adapt to a gluten-free lifestyle after their child is diagnosed with celiac disease. 

As a parent with two children who have celiac disease, I know this change can be a challenge, and I am deeply committed to working with patients and families to minimize the impact celiac disease has on a child’s quality of life.

How are celiac disease, a gluten allergy and gluten sensitivity different?

Celiac disease is an inherited autoimmune disease in which gluten damages the small intestine and other organ systems. It can cause abdominal pain, diarrhea, constipation and poor growth; non-GI symptoms include headaches, joint pain and fatigue, to mention a few.

A person with a gluten allergy, on the other hand, has an allergic reaction to wheat, rye or barley and can experience hives, abdominal pain and trouble breathing (the latter can be relieved with an EpiPen).

Gluten sensitivity, also known as non-celiac gluten sensitivity (NCGS), involves some of the same symptoms as celiac disease, but the person tests negative for celiac disease and for gluten allergies.

What challenges do pediatric celiac patients and their families face?

There are many, from a child not growing well to having to deal with dietary restrictions and social isolation. The emotional toll on children with this disease can be enormous. Parents can also struggle, spending hours on the phone talking to food manufacturers, prohibiting any gluten in the home or not allowing their children to go out. This hyper-vigilant state isn’t good for the child or the parents.

It's important to have a medical team you can rely on to say, "Talk me off the ledge." Follow-up appointments aren’t just about looking at blood tests, but also looking at the patient as a whole, the family as a whole, and discussing matters like how to handle holidays like Thanksgiving.

Why is it important for celiac disease patients to have regular, follow-up care?

Regular follow-up is needed to assess a patient’s symptoms, whether they improve on a gluten-free diet, and to assess a child’s growth. Follow-up blood work is also needed to gauge diet adherence, possible disease complications and vitamin levels.

Many people diagnosed with celiac disease go online to learn about avoiding gluten; they may start a gluten-free diet and feel they don't need to worry about anything else. But it’s hard to fully understand your disease and treatment by simply going online. For instance, once you’ve been diagnosed, your entire family should get tested for celiac disease.

A trusted medical team can help with age-appropriate education about the illness, from nutrition to implementing a 504 plan that ensures a child with celiac disease gets the accommodations they need at school.

Why is it important to have a dietitian?

A gluten-free diet is the treatment for celiac disease, and the person who knows this best is a skilled dietitian. Many commercially prepared gluten-free foods are not as enriched with vitamins and fiber and contain more sugar and fat. A dietitian can teach you how to have a nutritionally complete diet and use naturally occurring gluten-free foods. They can also educate you on reading labels correctly to avoid cross-contact.

Why do some people feel better on gluten-free diets even when they don’t have celiac disease?

Gluten sensitivity is real. When people who test negative for celiac disease say they feel better on a gluten-free diet, it may not be the absence of actual gluten leading to improvements in their symptoms.

When you take away wheat, rye and barley, diets become low in FODMAPs. FODMAPs stands for fermentable oligosaccharides, disaccharides, monosaccharides and polyols. These are carbohydrates and sugars that are poorly digested and absorbed, and they’re often found in foods that contain gluten.

People with sensitive GI tracts may feel better when on diets low in FODMAPs; these diets are most often used as part of treatment for irritable bowel syndrome.

How is UChicago Medicine contributing to our understanding of celiac disease?

Researchers at our