How Celiac Disease Runs in The Family

in Celiac, Features
Published: May 12, 2014

The Teitelbaum family (left to right): mother Rory, Jack, 14, Oliver, 8, father Bruce, Sophie, 5, and Emma, 15. Only Jack tests negative to celiac disease.

When Rory Teitelbaum reveals the number of people in her immediate family who have celiac disease, many can’t believe what they’re hearing. “Five out of six?” they ask. “You’ve got to be kidding.”

But Teitelbaum, 42, a New York City mother of four and fierce full-time homemaker, couldn’t be more serious. She and three of her four children all have the autoimmune condition, in which the body cannot process gluten. And in an unusual twist of fate, her husband, Bruce, is the fifth family member with the condition.

“We have to be so on top of things,” Rory says of daily life. “But we’ve made it into a positive thing. While drumming into the kids why we can’t have gluten and that we are responsible for what we put in our bodies, we’ve worked to make them feel special. And they’ve become good at asking questions and dealing with things like peer pressure.”

Life has progressed to the point the family can sagely debate the merits of one gluten-free bread or ice cream brand over another, or dissect the deliciousness of the gluten-free French toast at the hotel near their east-side Manhattan home. It’s not uncommon for 5-year-old foodie Sophie to archly warn that a cookie doesn’t “look” gluten-free or for Emma, 15, to call her parents to say she is with friends at a crepe place and, “they have ones that I can eat!”

Rory, Bruce and their children are well aware of the havoc that gluten, a protein in wheat, barley and rye products, can cause in the body. When the immune system of a person with celiac disease detects the presence if gluten, it leaps into defensive action, inflaming the lining of the small intestine and damaging tiny, finger-like projections called villi that are vital to the absorption of nutrients into the bloodstream.

The common symptoms of the condition are diverse: from abdominal cramps and bloating to chronic diarrhea, irritability in children, brain fog and even infertility.

How to Convince Family Members to Test for Celiac

The Teitelbaums are a perfect example of why specialists such as Dr. Daniel Leffler, a gastroenterologist at Beth Israel Deaconess Medical Center in Boston, make a point of asking all patients who have just been diagnosed with celiac disease about who else is in their family.

“It’s my first question, just after: ‘How are you feeling?’” Leffler says in an interview. “Because celiac disease is genetic and U.S. doctors, especially, don’t have a great record of diagnosing it. If it’s left undiagnosed, the consequences can be catastrophic, from growth and health problems to bone density issues.”

Since each parent comes from their own gene pool, it is quite uncommon for both parents to have the condition. But in his practice, Leffler does frequently see multiple members of the same family with celiac disease – one parent, say, and two or three kids, a grandparent and/or a sibling, or any combination thereof.

If you or any member of your family does have celiac disease, Leffler stresses that screening of other relatives should be done regularly because the odds of them having or developing the condition have now shot up: one in 22 for immediate family members and one in 39 for people such as aunts, cousins and grandparents.

For children, this may mean a gene test involving a simple cheek swab that pinpoints who is and is not at risk; then, for those who are predisposed to develop the condition, a blood test once every two years or so from 2 years of age onwards.

Adult relatives should be told of the diagnosis and encouraged to get tested, especially if they have one or more of the symptoms associated with celiac disease, Leffler says. If they continue to feel sick despite a negative test result, they should keep getting tested because celiac blood panels, although good, aren’t 100 percent infallible, he continues.

“The numbers of people with celiac disease are growing. Statistics show that an estimated one in 133 people in general have celiac disease right now and the vast majority of them are undiagnosed,” he says. “That’s why it’s imperative we get this message out.”

Celiac Disease Family

Before Emma, their oldest child, got sick, Rory and Bruce knew next to nothing about celiac disease. What they knew was that their daughter, not quite 2 years old at the time, was very ill and they were desperate for a solution. Emma had been vomiting every day for six months, she had continuous diarrhea, her stomach was distended from malnutrition, and her little muscles had begun to atrophy. The child was put on a feeding tube; her parents were frantic.

Then a blood test showed that Emma had the antibodies associated with celiac disease and an intestinal biopsy confirmed it. But knowing what they were dealing with didn’t make it any easier at first.

“I was devastated,” Rory admits. “I was younger and a little naive and I thought: ‘Why us?’” She had already grieved a stillbirth before Emma was born, and now her daughter had this disease. “None of us should get sick like this, not having been through what we had,” Rory recalls thinking. “It wasn’t fair.”

Cooking, baking and becoming fluent in the language of product labels were also challenges. Until Emma’s diagnosis, Rory’s talents in the kitchen were limited at best. She threw herself into it by reading specialty cookbooks and attending lectures and taste-testing products. Not one to do things by halves, for birthdays, she would bake not one but two cakes from scratch: one regular and one gluten-free. The payoff was that Emma was thriving.

Along the way, Rory learned that everyone in Emma’s immediate family – and preferably her extended one – should get tested.

“Could I have it?” Rory wondered then. “Could that be why I had a stillbirth? And the reason for my protein deficiency, my bloating, migraines and clotting disorder? Could it be why I’m not getting my period? Could I have passed this on to my daughter?”

But Rory’s celiac blood panel proved negative. Instead, Bruce, a Manhattan building and advertising executive, was diagnosed first. “I thought we found the culprit,” Rory says. “I told Bruce, ‘it’s your side of the family.’ But my symptoms continued, so I kept getting tested. Finally, in 2004, I tested positive, too.”

With their combined genetic profiles, they understood there was an extraordinarily high probability their children would have celiac disease, too. So far, Jack, who was a year old when his big sister was diagnosed, has been clear every time, although his doctor recently placed the 14-year-old on a growth hormone.

Oliver, 8, and little Sophie have both had positive blood tests and cheek swabs, and their parents have opted to eliminate gluten from their diets without putting them through the intestinal biopsy.

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.”

After Adin Esberg's celiac disease diagnosis, sister Maya was also found to have the condition.

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.’”

See also:
How to Convince Family Members to Test for Celiac
NFCA: Talk to your Family about Celiac Diesase Testing