National Foundation for Celiac Awareness Launches Important New Campaign to Educate Families of Celiacs
April 23, 2015
Have you heard about the new Celiac awareness campaign titled "Seriously, Celiac Disease," put together by NFCA (National Foundation for Celiac Awareness)? This much needed public service announcement does what NFCA does best...encourage dialog to spread awareness and get more of the 3 million people in this country suffering from Celiac properly diagnosed. That's because, of the 3 million people with Celiac here in the U.S., only about 17% are diagnosed. The remaining 83% continue to do damage to their health, because they are either asymptomatic (but still doing harm to their digestive systems and overall health) or haven't had a doctor who was able to pinpoint the cause of their symptoms and suffering, which can vary from person to person.
The difference in this campaign is that it doesn't specifically target doctors, as other awareness campaigns by NFCA and other organizations have done so well in the past. This particular campaign encourages those with diagnosed Celiac to have frank discussions with family members about getting tested for the disease. After all, Celiac is a genetic autoimmune condition in which all relatives -- not just immediate family members -- have a higher chance of Celiac themselves.
I remember when our own son, now almost 12, was diagnosed exactly 10 years ago this month. While he was sick for less than a month (a stomach virus that "triggered" Celiac and resulted in weight loss, emaciated limbs, distended stomach, irritability, and lethargy), it seemed like years. We were among the lucky ones...he was diagnosed fairly quickly if you consider that adults go an average of 11 years without a proper diagnosis. With children, you don't have that kind of time. Weight loss of 10% of body weight, as our son experienced, is serious and gets quick attention from pediatricians. Fortunately, my mom, a former nurse had come across a brief mention of "Celiac Sprue" in an old medical book. We had never heard of this disease before. But then, when we went to our pediatrician for yet another visit to address the ongoing issue, he, too, had done his research. He suggested we test for Celiac. I was relieved. There was no arguing our case or having to explain the disease. Many people aren't so lucky...their doctors dismiss symptoms, sometimes even when the suffering patient explains they have a direct relative with Celiac.
Our son was the first patient our pediatrician had ever diagnosed with Celiac. He sent us to a pediatric gastroenterologist for follow-up, and we were told we needed to have ALL relatives (us parents, siblings, grandparents, aunts, uncles, and cousins) tested for the disease. Fortunately, we didn't get much push-back. As far as we know, everyone got tested. The ironic thing was that one relative who thought she might have the disease, due to sporadic digestive distress, tested negative. However, another family member who had never had the textbook Celiac digestive issues tested positive. This is not uncommon, and upon reflection, she realized that her mom's own declining health and eventual passing many years before was probably a direct result of the symptoms of Celiac (physical and neurological "wasting").
And that, my friends, is why what NFCA is doing with this campaign is so important. It's crucial to have a frank discussion with family members, explaining the consequences of undiagnosed Celiac (malnutrition, osteoporosis, infertility, increased risk of intestinal cancers, higher incidence of other autoimmune diseases, and neurological issues, to name just some). It's also imperative that you explain to family members that there needn't be any glaring symptoms -- digestive or otherwise. Many Celiacs are actually show no outward symptoms, but they can still be doing serious damage to their bodies if they remain undiagnosed and continue to eat gluten.
Sometimes it's hard to have these discussions. Many times family members will listen to anyone but another family member...especially if it concerns something they don't want to hear! That's why the National Foundation for Celiac Awareness put together its "Talk. Tell. Test." approach to encourage serious, in-person, one-on-one conversations with family members. They will guide you about how to approach the situation, with tips on "do's" and "don'ts." Your frank discussion could save a life -- and certainly add to a relative's long-term quality of life. A simple blood test is the first step in finding out if a relative is positive for the genetic condition.
In addition to the powerful PSA announcement, NFCA provides discussion guides, personal stories, and brochures with pointers on how to best approach the topic. The campaign was developed after NFCA's research indicated receptivity for getting screened for Celiac Disease increased when at-risk relatives were properly educated about the condition and armed with the right tools. Speaking from experience, when two of our own adult relatives were found to have Celiac after our son's diagnosis, they were grateful to have a new lease on life. And the one relative that had been symptomatic was relieved to find the cause of her mysterious ongoing health maladies. Following a gluten free diet is usually embraced by recently diagnosed Celiacs (after a brief period of perhaps feeling a bit overwhelmed or depressed), because they are just so happy to have an answer to what has been causing their debilitating symptoms. And a dietary treatment -- even though it must be strictly followed for life -- is certainly better than surgery, prescriptions drugs, or other medical intervention. Celiacs following a strict gluten free diet can typically expect complete recovery from symptoms as their small intestine heals. And speaking from experience watching how the market for gluten free foods has evolved over the past 10 years, things are tremendously easier now than they were just a decade ago. The selection of wonderful gluten free food in stores -- and the gluten free choices on many restaurant menus -- is incredible...one of the fastest growing segments of the food world!
Visit http://www.SeriouslyCeliac.org to access the following free NFCA resources to help get the conversation started. People in the celiac disease community can follow the hashtag #TalkTellTest to join in the conversation with NFCA and others having similar experiences in helping their family members get tested.