Eating Well with Celiac Disease

Managing a healthy gluten-free diet can be done at home by checking food labels and including lots of fresh, unprocessed foods. But what happens when you aren’t in control of what your family is eating at restaurants or in social settings? These situations may present a different set of challenges that can be overcome with careful planning.

Celiac disease and non-celiac gluten sensitivity

It is important to recognize the difference between a gluten-free diet for celiac disease, the popularized version of a gluten-free diet, and non-celiac gluten sensitivity. Being on a celiac gluten-free diet means that you must avoid ingestion of gluten in all ways, shapes, and forms by avoiding not just the foods that more commonly have gluten, but also foods that have come into contact with gluten or may have touched it.

“The popular gluten-free diet versus celiac gluten-free diet are not the same. Someone who has celiac disease has to think about cross contact,” Venus Kalami, a clinical pediatric dietitian with Lucile Packard Children’s Hospital and Stanford Medicine Children’s Health explained. “Whereas someone who is trying to cut out gluten from their diet, even if they have very valid health reasons to do so, their version of the gluten-free diet is not nearly as meticulous as the way it might be for someone with celiac.”

This distinction is of particular importance when dining out because cross-contamination can make someone with celiac disease sick.

Eating out with celiac disease

It is much easier to avoid exposure to gluten in foods when you cook for yourself. When you eat at a restaurant or a party, you do not always know exactly what is in the food being served. While concern for accidental gluten exposure is completely valid, celiac disease should not prevent you and your family from living your lives and enjoying social occasions.

Most restaurants have some gluten-free items, like pizza crust or pasta, to accommodate people who have celiac disease. Be proactive and ask about foods that may contain gluten, such as those that are fried, grilled, or served with sauces and gravies. Sharing a cutting board or fryer can also contaminate gluten-free foods. Often, sauces are made with soy sauce (wheat-containing) or flours and thickeners that contain gluten.

“Some people may not realize that to make a nice, silky cheese sauce, you really need a roux that’s made from flour. This is something a restaurant server may not realize. So, they might have gluten-free noodles available for you but then may not realize that the sauce is not friendly for someone who has celiac disease,” according to Kalami.

Parties, meals at another person’s home, or even meals at school can also be sources of accidental gluten exposure. Of course, you can always bring your own food. When that is not an option, it is important to speak with the hosts in advance and let them know about your child’s dietary needs.

“What it comes down to are conversations between parents and just making sure that the awareness is truly there,” Kalami explained. “Most people are very kind and understanding and are willing to accommodate someone who has celiac disease and have gluten-free cupcakes or other gluten-free treats available.”

Surprising ways gluten can sneak into your diet

Even when you’re being careful, you can be exposed to foods or products that contain hidden gluten. One of the most common is soy sauce. It almost always has wheat added to it, but you can choose an alternative called tamari, which is made of pure soy, or use gluten-free soy sauce. Other popular foods that may have gluten are licorice and gummy candies. These may contain wheat as a binder. Reading labels carefully can help you choose versions without gluten.

Other foods to look out for include ice cream toppings and mix-ins. Flavors like cookies and cream or cheesecake contain gluten. According to Kalami, “Anything that uses a thickener, anything that is originally a liquid and then becomes thick—whether it’s ice cream, pudding, or sauce—is a high-gluten-risk food.”

Non-food items can also be problematic. Play dough or slime is often made from wheat flour. It may be fun for tactile play, but sometimes kids eat some accidentally. Or they may not wash their hands well after playing with the dough and then bite their nails. Even that small amount, if eaten, can cause a reaction for some people.

While celiac disease does pose some lifestyle changes, Kalami advises kids and families to focus on what they love and get the support they need to keep doing it. She stresses the importance of advocating for oneself and staying engaged in social and personally fulfilling activities.

“I think the biggest things are navigating eating out, being over at friends’ houses, your extracurricular activities… and reframing them so that your first thought isn’t, ‘What am I going to eat?’ and instead think about how to set up structure to be able to enjoy yourself,” she said. “It’s really important to bring focus on still having these social activities. Still engaging in them—not self-isolating out of fear. And more than anything, getting comfortable with self-advocacy.”