First, the good news: 64 percent of people with a family member who has celiac disease agreed to get tested for the condition – if that family member asked them to, according to a study conducted in 2012.
Now, the not-so-good news: that means 36 percent wouldn’t get tested.
“It’s not easy talking to your extended family about personal health issues but when their own health may be at stake, you don’t have a choice,” says Alice Bast, the president of the National Foundation for Celiac Awareness, which worked with two research centers on the study. “Sometimes, the hardest part is starting the conversation. We want to give our community the tools to help them start.”
Those tools are part of a campaign NFCA has dubbed “Family Talk,” a dedicated section on CeliacCentral.org that includes pamphlets and a series of videos that feature people telling their own stories of diagnosis and revelation. The series stresses that you, the newly diagnosed, can make a difference to your relatives’ health by being upfront about your condition, and explaining how it runs in families. You can explain that the first step towards a diagnosis is a simple blood test, which if positive then requires an intestinal biopsy for confirmation.
Part of the family communication problem, says Bast, is that symptoms of celiac disease can vary widely. While you might have stomach bloat and diarrhea when consuming a gluten-containing food, someone else may get a skin rash and yet another with the disease may have no apparent symptoms at all. That’s the thing with celiac disease: there is no one group of symptoms doctors can point to and say, ‘Aha!’
That means it’s easy for family members to be dismissive and say: “Not me, I feel fine” – until they don’t any longer. By then, serious damage can already be done, such as osteoporosis settling in, or the onset of lymphoma. Or, as Bast herself discovered, fertility problems that are difficult to overcome.
Among the participants in the Family Talk videos is Dr. Ritu Verma, a pediatric gastroenterologist at The Children’s Hospital of Philadelphia who says that for years she made excuses for her son’s growth and weight issues and abdominal pains. She thought it might relate to her son being a picky eater, who didn’t eat a wide variety of foods. She was wrong.
When Verma finally did order some blood tests, the results showed that Pranav Chugh, her now 15-year-old son, was chock full of antibodies linked to celiac disease. A biopsy confirmed the diagnosis.
“My biggest fear had been that he had Crohn’s disease, which runs in our family,” Verma says. “My mom used to tell my husband, who is an emergency physician, and me: ‘There’s something wrong with your son’. But we rationalized every symptom. We missed that our child had an illness.”
The discovery of it jolted Verma into action. Quickly, she arranged for everyone else in the family to get tested; her eldest, Priyanka, proved positive despite being completely asymptomatic. Her daughter Nika has not developed the disease but is routinely retested, as the condition can suddenly emerge.
“The experience has reinforced for us the importance of regular screening,” says Verma, who sits on NFCA’s science and medical advisory board.
“If you are genetically susceptible, a trigger, whether it’s pregnancy, stress or whatever, can jumpstart it at any time. Remember, people get diagnosed at all ages.”
See also: How Celiac Disease Runs in the Family