When Erin Smith, also known as the Gluten-Free Globetrotter on Instagram, was diagnosed with celiac disease at age 2, doctors and patients alike were far less familiar with the disease than they are today.
Grocery store shelves weren’t lined with gluten-free bread options, and restaurant menus didn’t commonly have gluten-free options as staple items, as they do now. At the time, stunted growth and a distended stomach helped tip doctors off to celiac; today, a blood test can help diagnose the autoimmune condition that prevents the body from successfully digesting gluten.
“My parents went through a lot to get me diagnosed,” says Smith, who is based in New York City and helps others plan fun and safe gluten-free travel through her personal website. Even when Smith was a youngster, her parents joined a local association to learn the ins and outs of managing celiac disease. Smith explains that if she consumes even a trace amount of gluten, she gets “violently ill” with symptoms similar to that of food poisoning, including vomiting, and can’t stomach more than water and ginger ale for a couple of days. “Basically, my body is rejecting it and wants it out as fast as possible,” Smith explains. In the last five years, she estimates she’s had fewer than five such episodes.
Being home gives Smith more control over her food, but the risk of gluten exposure while eating is higher when she’s dining out or traveling. For anyone with celiac disease who consumes gluten, the physical effects can be serious, similar to Smith’s symptoms. According to the Mayo Clinic, eating gluten sets off an autoimmune reaction in the small intestine. Frequent reactions can damage the lining of this part of the digestive system, contributing to poor nutrient absorption.
Because Smith loves to travel, she seeks out support groups of people with celiac disease wherever she goes and uses apps to identify gluten-free restaurants in the places she visits. When traveling to certain new places, such as Asia, she has brought a doctor’s note as a precaution, in case airport security or customs attempt to confiscate her food.
“That’s a big thing that a lot of people with celiac are worried about — being able to get food wherever they’re going. Access to that is important,” Smith says. “Even in the United States, there are places where you can’t find any gluten-free foods. You always need to be prepared.”