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Celiac Disease

Celiac’s Family Ties: On Getting Your Clan Screened

celiacfamily4Aimee Corso and her daughter Sofia visited Lake Tahoe for a wedding. Corso came primed to talk testing with relatives.

If you’ve got celiac disease, your relatives also need to be tested. But prodding them along to the doctor’s office is not so easy. Allergic Living explores getting family to take this health risk seriously. This article is from Allergic Living’s Fall 2015 magazine; to subscribe click here.

Aimee Corso was frustrated. As senior vice-president of the health-care group at a multinational communications firm, her job is turning what on paper may look like dry scientific data into something compelling. It is her passion and practically her mantra: make people want to learn more, no matter if it is biotech, a pharmaceutical advance or a new and better way to diagnose a disease.

So then why, oh why couldn’t she or her husband, Tony, get their own families to listen to them after their daughter was diagnosed in September 2014 with celiac disease? Ten years old at the time, Sofia had always been energetic — a super-achiever at anything she tried, be it school, sports or dance. Then, as if overnight, she got tired — and not just “tired but she’ll be all right after a few good nights of sleep,” says her mother. This tiredness was extreme — and extremely worrying.

At first, Corso chalked it up to changing schools, and the recent death of her own mother. Sofia had loved her grandmother more than anything. “It’s a double whammy,” Corso recalls saying to her husband, a high school math teacher. “Anyone would have this kind of reaction. It has to pass.”

It didn’t, and the concerned parents took Sofia to a pediatrician who prescribed a number of tests that included blood screening for celiac disease. After the screening proved positive, an intestinal biopsy confirmed the diagnosis. All of a sudden, the members of this family, who live in Lake Oswego, Oregon, underwent a crash course in an autoimmune condition that is triggered by the presence of gluten, a protein found in wheat, barley and rye products.

In those with the disease, gluten damages the villi of the small intestine – the tiny, finger like projections in the intestinal lining that are vital for absorbing nutrients. Symptoms of the disease are numerous and varied, from gastrointestinal problems such as diarrhea and bloating, to fatigue, osteoporosis, thyroid conditions and, in the case of children, a failure to thrive. Although several drug therapies are being researched, the only proven treatment for the condition right now is a diet free of gluten.

The disease is also highly genetic. A puzzle for the Corsos was which side of the family it had emerged from. While Sofia’s big brother, Paul, who’s 13, is allergic to tree nuts and legumes, as far as his parents knew, no one in their respective families had ever been diagnosed with celiac disease. Then again, they had learned that the condition was sneaky. So it could be doing its damage to relatives who were feeling fine, then all of a sudden show itself in dramatic fashion, as it did with their daughter. They knew it was crucial for everyone to be screened – grandparents, brothers, sisters and cousins, first, second or even three times removed, just in case.

celiacfamily3Aimee Corso, with Sofia, discussed risks with in-law Liz Corso Davis at Tahoe.

The same month that Sofia was diagnosed, they sent emails to Tony’s seven siblings and to Aimee’s older brother and sister. It was a simply written missive, the issues presented clearly in language everyone would understand. The couple warned relatives that their health might be compromised, even if they didn’t show signs of this. And, even if they did have physical concerns, a doctor might easily confuse this disease – and its myriad possible symptoms – with something else.

“Still, not a single one of them has been tested,” Corso told Allergic Living in June 2015, nearly 10 months after she had first sent messages to family members. “They were all relieved and happy that the source of Sofia’s fatigue has been identified and can be treated through diet. But they have displayed no interest, never mind urgency, in going to get themselves checked out. We can’t figure it out. Wouldn’t you want to know?”

Yet for many, not just the Corso clan, the answer to Aimee Corso’s question is: “Not really.” Experts suggest it may just be human nature to avoid bad news, and not to go looking for trouble. That’s perhaps especially so when trouble comes with a strict regimen of avoiding favorite foods from doughnuts to pizza to beer, and even trace gluten exposures.

“People don’t like to get tested partly out of fear, and partly from plain old inertia,” says Dr. Joseph Murray, a gastroenterologist at the Mayo Clinic in Rochester, Minnesota. “Family members may have seen the restrictions you have put yourself under and formed negative impressions of the diet.” Or they may be worried about health insurance and the cost of specialist appointments.

Further, Murray says, they may be in or wish to enter the military: although the U.S. forces will accommodate people with celiac disease if it is diagnosed after they have been accepted, the condition tends to disqualify those who have it when they apply because of the difficulty in accommodating the diet during overseas deployments.

In the face of fears or other reasons to want to ignore the messenger, the question becomes: How do you get relatives to listen to the reasons for the need for their own testing?

Alice Bast, NFCA President & CEO blueAlice Bast, President and CEO of Beyond Celiac

Beyond Celiac (formerly NFCA) decided the communication with undiagnosed family members was such a big concern, that the organization developed Seriously Celiac,a campaign dedicated to giving detailed advice on how to — and how not to — have the conversation. Alice Bast, Beyond Celiac’s president and CEO, was diagnosed with celiac disease more than 20 years ago after an odyssey that lasted eight years, and included a stillbirth and a mysterious 25-pound weight loss. She recognized the need for such a conversation template, not just from the thousands of people who write to her and post on the foundation’s website, but also from personal experience.

It was Thanksgiving soon after her diagnosis. Eighteen people were seated around the festive table at her brother’s home in Austin, Texas, about to tuck into a glorious dinner, when she jumped up with her announcement. “I have celiac disease,” she said to no one in particular. The dinner was gluten-free except for the stuffing, but the meal wasn’t her focus.

“You should all get tested because it runs in families,” she stressed. Everyone hemmed and hawed, there were some rolled eyes — and then everyone turned back to their plates. “It was so frustrating because I felt helpless,” Bast says from the Beyond Celiac headquarters near Philadelphia. “I wanted them to run to the nearest clinic, and here they were, calmly eating.”

She was further prompted to develop the campaign after hearing one Beyond Celiac’s donor’s upsetting tale, which revolved around one daughter getting tested and the other, not. The one who didn’t get tested was diagnosed with lymphoma, a cancer that has been linked to celiac disease. To prevent others from such consequences, the campaign recommends that you don’t tiptoe around issues.

Instead, be direct. Raise the prospect of cancer that can kill and osteoporosis that affects bone density and agility. Speak of what happens when you’re lacking key nutrients such as iron, folate and vitamins B12 and D – of anemia, fatigue and an inability to concentrate.

Ask if they want to be around and full of energy as long as possible for their children and grandchildren. Emphasize the health issues rather than debate the challenges of following a gluten-free diet. And, if you do speak of the diet, note the positive aspect of the choices that are now available in supermarkets and restaurants.

Next: Getting Relatives to Take Testing Seriously 

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