New campaign for celiac disease diagnosis

Sam Master was a regular 15-year-old boy when his sister was forced to return from abroad because she had become so sick.

What started out as a journey to find out was wrong with her ultimately resulted in both siblings being diagnosed with celiac disease. Master had no symptoms when his sister’s gastroenterologist suggested the whole family be tested for the genetic autoimmune disease.

Now 26 and about to graduate from medical school, he recalls that it took him a while to come to terms with the fact although appearing healthy, he would have to follow the same gluten-free diet as his much more obviously affected sister.

“It was difficult because the one thing you want to do as an adolescent is to fit in and suddenly your life is turned upside down,” he says. Still he is grateful to his sister and her doctor for putting him on a path to a healthy life, not to mention his career choice in medicine. “If this had not happened, who knows how sick I might be,” he explains, adding that he had been thinking about becoming a lawyer before being diagnosed.

That’s why he is working with the National Foundation for Celiac Awareness on its new campaign to get those who have celiac disease to encourage their relatives to be tested for the genetic condition.

Called “Seriously, Celiac Disease,” the national campaign launched today advises celiac disease patients to have a “Talk. Tell. Test.”conversation with biological relatives. The Philadelphia-based celiac disease advocacy group advises these steps:

TALK to your family
It’s important to talk to both immediate and extended family members soon after a celiac disease diagnosis to help them understand why getting tested is important for their own health. These private conversations should be initiated in person using a serious yet personal tone.

TELL them the facts
Since many people with celiac disease don’t have any symptoms at all, it can be hard to clearly explain what undiagnosed celiac disease can do to the body. That’s why it’s important to relay the facts of celiac disease to relatives. Once one person is diagnosed, all biological relatives need to know that celiac disease is genetic. Those diagnosed play a key role in helping family members understand the importance of a formal diagnosis and its long-term management with a team of knowledgeable healthcare providers.

Urge them to TEST
A simple blood test is the first step in learning if a person has celiac disease. Depending on the results, a biopsy of the small intestine to check for damage may be ordered by the physician following the blood test.

“Through our community’s experience, we know that most untested family members only want to have this serious conversation once, so it’s important to use the right information, in the right setting, using proven methods when talking to them,” says Alice Bast, president and CEO of NFCA. “By equipping individuals with the right tools to help their relatives understand the importance of formal diagnosis, NFCA hopes to have a major impact on the health and future of many families.”

Master says he understands the resistance of relatives who have no symptoms and compares it to the reluctance people have to undergo a colonoscopy. “People are afraid of the potential consequences,” he says, noting that it’s hard for people to accept the fact they would have to follow a gluten-free diet. “Since food is so central, it requires a lot of change.”

NFCA has produced a public service announcement video that shows how the conversation with family members can be started. The video demonstrates techniques of the Health Belief Model, which NFCA says are effective in getting this kind of message across.

“Celiac disease is genetically based, so it is more common in those with a family history of the condition, and having an autoimmune condition like celiac disease makes you more likely to develop other autoimmune diseases,” says Daniel A. Leffler, M.D., director of research for the Celiac Center at Beth Israel Deaconess Medical Center in Boston. “Testing at-risk populations for celiac disease has been consistently shown to improve detection rates among family members and accurate diagnosis is vital to ensure that the disease is managed appropriately.”

A website set up for the campaign, SeriouslyCeliac.org, also includes discussion guides that describe “dos and don’ts” for having the conversation with both family members and physicians.

After his diagnosis, Master worked in his gastroenterologist’s office where he was exposed to people who had complications from undiagnosed celiac disease and did not want to suffer them himself. Though he still occasionally dreams about enjoying a croissant again, he sticks to a strict gluten-free diet.

He says relatives who are diagnosed with celiac disease even though they have no symptoms should focus on living a healthy lifestyle. “People make lots [of choices] based on healthy options,” he says. “It another opportunity for some to say, ‘I can take control of my life.’”