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.
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?
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.
Bast stresses from personal experience and research findings that it’s best to meet with each family member individually rather than in a group because you need to tie your message to a person’s individual health, and it becomes a lot easier to say –‘Not me!’ –if that message is delivered to a group. Stress that celiac disease is an autoimmune condition, and one that can only be controlled through diet. It’s not a sacrifice so much as an essential life change that one makes to maintain good health and stave off a host of symptoms and related conditions.
“I’ve tried the methodology with my family and it works,” says Bast. “Now, I have a cousin and a sibling who are taking me seriously and are going to get blood tests. Sure, I’d like them to run in tomorrow –but at least they’re going.”
In 2014, when Julie Kennedy told her older sister, Jennifer Woods, that she’d been diagnosed with celiac disease and urged her to get tested, Woods’ heart sank. At 39, the part-time bookkeeper, marathon runner and mom to two kids, who lives in Chapel Hill, North Carolina, had just been diagnosed with Arrhythmogenic Right Ventricular Dysplasia, or ARVD, after blacking out on a tennis court. At the time, she couldn’t bear to think she might have celiac disease, too.
In ARVD, a leading cause of sudden death in young athletes, the muscle in the heart’s right ventricle is replaced by fat or fibrous tissue, which affects its ability to contract and efficiently pump blood. When her sister called, Woods had just had surgery to have a defibrillator implanted in her heart, and was coming to terms with her doctor’s orders to limit workouts to yoga and walking.
Sure, she was happy that Kennedy, then 37, had learned how to handle the gastrointestinal issues that had flared up after the birth of her third child, and that her niece, Abbey, 9, who had always been tiny, was starting to catch up to her peers after she, too, was found to have the condition. Woods even agreed that celiac disease had probably been passed down from their father’s side of the family because his late mother, their beloved “Nana” Kitty Strange, had suffered serious GI issues during the last 10 years of her life and had part of her intestine removed.
“But no one ever has suggested that what I have could be anything to do with celiac disease,” Woods says. “Nobody said I should follow up.”
Yet, when she went for her annual checkup, Woods asked her doctor to do a blood screening. She is ready to handle whatever the news is –and she recognizes the importance of testing because she has hypothyroidism, in which her thyroid gland produces too little of the hormone that regulates crucial things such as energy, ability to concentrate and tolerance of cold. (Hashimoto’s thyroiditis, an autoimmune condition that causes symptoms similar to hypothyroidism, has been linked to celiac disease.) “You know,” she says, “it’s time to know.”
For the Corsos back in Lake Oswego, the time after Sofia’s diagnosis has been a speedy learning curve in terms of diet. Since some gluten-free flours contain tree nuts, Corso had to become aware of seeking out gluten-free flours and products that both Sofia and nut-allergic Paul can tolerate, and the family eats a lot of fresh foods –from fish and meat to seasonal vegetables.
As for the rest of their extended family, Corso has spent her off-work time plotting and planning strategies. “It’s frustrating because I see the need to educate. Culturally, there’s almost a bias against looking for something that might or might not be there,” she says.
At a family wedding at Lake Tahoe in Nevada in July 2015, Aimee approached relatives again about the importance of getting screened. It was the perfect opportunity, simply because everyone was close and in a relaxed mood. “The conversations went very well,” she says. “I think our family understands more now. I have a commitment from my husband’s sister that she is going to get tested.” Despite the progress, Aimee knows there’s more work to be done. “I still need to make sure I stay on top of all family members. Again, the issue is if people don’t have health issues they don’t seem to think they would need to be tested.” Unfazed, Aimee’s ready to do what it takes. That is her job, after all: getting people to listen and understand.
For more information on Beyond Celiac’s Seriously Celiac campaign, visit Beyondceliac.org/seriouslyceliacdisease