Rory is struck by how many more people have the disease today than was the case in 2000. “It has been a real eye-opener. Before, it was like we were alone,” she says. “Now, I know so many people who have been diagnosed. Emma went to camp this summer and there were 13 celiacs out of 300 kids!”
Shy in the beginning, Rory doesn’t think twice now of going into a restaurant’s kitchen to check how they prepare things, and when the family travels, she always carries a suitcase full of safe foods, from gluten-free pizza crusts to plastic lunchbags filled with pretzels. “I automatically assume that gluten-free goods won’t be available where we’re going,” she says.
Then again, times have changed. Back when Emma was first diagnosed, there were few gluten-free products widely available, and they were outrageously expensive. But on a recent vacation to the Turks and Caicos, of all places, Rory’s daughter and husband found a general store so packed with gluten-free goodies, the kids were in seventh heaven for the whole trip.
“Bruce and Emma were gone so long, I began to worry,” she recalls. “All of a sudden, they pulled up in a cab filled with at least 20 grocery bags. And the snacks were better even than the ones we can buy in New York.
“In retrospect, despite my terror when all this started happening, all my friends now say, ‘It’s good it was you,” she continued. “I’m a really proactive person – and life is never perfect. But our life is pretty darn good.”
Maya and Adin Esberg.
Boy’s Short Stature a Clue to Celiac Diagnosis
When he was 10, Adin Esberg visited his pediatrician for his annual physical. His mom, Tema Esberg, wasn’t worried. Her son, though small, was funny, forceful and socially skilled, with nary a gastric complaint.
So when the pediatrician said she wanted to run tests because Adin had fallen from the fifth to the second percentile for height in his age group, Esberg balked. She thought: “Anyone who has seen our family knows – we’re short!”
But the pediatrician insisted, saying that if anything was wrong with his health, perhaps it could be fixed. Esberg, who lives in Philadelphia, was on board with that. Sure enough, Adin turned out to have celiac disease, as did his older sister, Maya who, along with the rest of family, was tested right away.
For Adin, now 11, the diagnosis has brought exciting changes: after he gave up gluten in October 2012, he grew four inches over the next nine months, compared to a measly 1½ inches over the previous 18 months.
But managing the disease isn’t always easy. Esberg often finds that others are “confused by the fact that my children do not experience intestinal discomfort or problems.” She’s concerned that people don’t understand that celiac disease manifests in many ways, and that a strict gluten-free diet is still “critical to my children’s health.”
As for 13 year-old Maya, she says: “I’m fine with the gluten-free diet, but I’d much rather take a pill that lets me eat what I want.”
Now, the challenge is in trying to convince extended family members to get tested. Like when Esberg was at a gathering on her husband Douglas’s side. “His niece, in her early 30s, has had a lifetime of gastrointestinal discomfort and I asked if she’d been tested. She said, ‘Huh? I don’t think so.’”