Branching Out: Taking a More Holistic View of Celiac Disease

 

While celiac disease is commonly thought of as an intestinal disorder, the reality is that it can affect every major system of the body. Think of celiac disease like a big tree: A single root problem that branches out into hundreds of possible symptoms. While intestinal symptoms like diarrhea or bloating may be the most prominent or well-known branches, a single twig like chronic fatigue or headaches could be the first indicator that leads back to that root. The problem is, many healthcare providers don’t associate those extraintestinal symptoms with celiac disease, so no steps are taken that would reveal the underlying condition. Instead, they treat the symptoms – an attempt to “nip it in the bud.”

Unfortunately, when the root cause isn’t addressed, those symptoms will likely return – sometimes worse; sometimes in a different form. That’s why educating healthcare providers about celiac disease symptoms is such a priority, and thanks to our efforts thus far, it’s why diagnosis is increasing. More healthcare providers are recognizing less common symptoms, due in part by educational support like the free Primary Care CME we launched in July 2010. And more patients – armed with free tools like our Symptoms Checklist – are asking if celiac disease could be the cause of their ‘mysterious’ ailments.

Let’s clarify something: Celiac disease is considered a digestive disorder; the root of the problem is in the gut. But that image oversimplifies the intricate connections in our body that can cause this autoimmune disease to wreak havoc elsewhere. And it’s why understanding those connections is so paramount.  We need healthcare providers who not only recognize that various symptoms – sometimes intestinal, sometimes not – can point to celiac disease (branch-to-root), but also know that celiac disease can manifest in different ways (root-to-branch).

This is most apparent in the case of treating families. Celiac disease is a genetically based condition, so first and second-degree relatives of individuals with celiac disease face a greater risk of developing the disease than the average person. Therefore, when a person is diagnosed with celiac disease, it’s strongly advised that relatives get tested.

Here’s where the tree comes in: Some relatives are resistant to getting tested for celiac disease, often because they don’t have the same symptoms as their diagnosed family member. What they (or their healthcare providers) fail to recognize is that they may have an entirely different set of celiac disease symptoms; some may have no symptoms at all. In other words, the answer is hanging from another branch.

At the National Foundation for Celiac Awareness (NFCA), we wanted to better understand the attitudes and behaviors of at-risk family members who remain untested for celiac disease. In 2012, we surveyed more than 340 family members of people with diagnosed celiac disease and found that 35% of those at-risk family members said they had no reason to suspect that the symptoms they were experiencing could be due to undiagnosed celiac disease.

This is why understanding the whole tree – not just the most obvious parts – is critical. If healthcare providers (and patients) know the genetic risk factors and that celiac disease can affect just about any bodily system, then they will be in a stronger position to start at that root (such as a family history of celiac disease) and explore all the possible signs that could be pointing to celiac disease in other family members.

Despite incredible progress in the last 10 years that has reduced the undiagnosed rate from 97% to 83%, there are still millions of people who are living with celiac disease and have no clue about it. Some celiac disease experts have said that family members could be the low-hanging fruit for increasing diagnosis – an easy and effective place to target education that gets results.

At NFCA, we’ve already begun that educational process. Our 2012 survey didn’t just identify a problem; it also unveiled a possible solution: Of the family members we surveyed, 64% said they would get tested for celiac disease if a family member simply asked them. In response to that finding, we created a suite of “Family Talk” resources, including a brochure, postcard and webpages – all designed to help diagnosed patients begin that conversation with their family members, and then make it as easy as possible for family members to talk to their healthcare providers about getting tested. These resources have reached more than 51,000 patients and healthcare providers in 2013 alone. Fittingly, our central symbol for these resources is a family tree.

As research continues to reveal more about celiac disease (as well as non-celiac gluten sensitivity and other gluten-related disorders, for that matter), it’s important for healthcare providers to be educated and patients to feel empowered so we no longer settle just for the root or the branches, but take a more holistic approach that explores every vein.

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