Family Story: Kristin Voorhees, NFCA

Family Story: Kristin Voorhees, NFCA

Explaining the “Clinical Chameleon

You may think that because of the knowledge and experiences gained from working at the National Foundation for Celiac Awareness (NFCA), I should have no problem asking my parents and other relatives to get tested for celiac disease. Guess what? I, too, face this resistance.

With the exception of my dad (whose blood test came back negative), my mom and extended family have not been tested for celiac disease. On the occasions when I press the issue, I typically receive one of two responses.

Scenario 1:

I’m told that they don’t have any of the symptoms I experienced, which leads them to believe that they can’t possibly have the same autoimmune condition as me.

When I put myself in my family members’ shoes, I admit that it might be difficult to initially understand just how much of a “clinical chameleon” celiac disease can be. After all, if their relative (myself) experienced chronic gastrointestinal symptoms that later resolved with a change in diet, it seems relatively understandable that they might only associate celiac disease with gastrointestinal and nutrition-related issues. As savvy celiac disease advocates, you and I know better.

Today, these conversations now remind me of the information NFCA and our partners at The Celiac Center at Beth Israel Deaconess Medical Center (BIDMC) and Emerson College learned last spring when we conducted a study on the attitudes and beliefs of persons genetically at-risk for celiac disease – family members are not aware of the variety of ways that celiac disease can manifest itself. In fact, they often associate the disease with only those symptoms that their diagnosed relative experienced.

Scenario 2:

My request is followed by a chuckle (yes, an actual laugh) when “so and so” family member asks if this is my way of saying that he or she gave me celiac disease. I can’t help but name this “genetic guilt.” Interesting, right?

As our community drives awareness and education to increase the number of diagnosed patients, I believe it is important to keep in mind the different emotions that come with both being tested andbeing asked to get tested. It’s clear that we still have many emotional and psychological aspects of the celiac disease diagnosis process left to unlock.

In my latest attempts to encourage my grandparents and one uncle to be tested, I left them with the patient and provider educational materials NFCA developed as a result of our research with BIDMC and Emerson College. (To score these resources, head to NFCA’s Family Talk section.) The jury is still out on whether they initiated the conversation with their doctor. Stay tuned!

– Kristin Voorhees, MA
Healthcare Relations Manager, NFCA