Can pharmaceuticals ease the challenges presented to those of us who live a gluten-free life? Our blogger examines the possibilities.
Is drug therapy a good thing for celiacs? A while back, I listened to a webinar by the National Foundation for Celiac Awareness (NFCA), and it got me thinking: If drugs to control celiac disease were available, would I want to take a medication for the rest of my life?
The webinar, titled “The Future of Drug Therapy for Celiac Disease: Get the Honest Facts,” wrapped up the FDA Public Workshop on Gastroenterology Regulatory Endpoints and the Advancement of Therapeutics (known as the GREAT3), an event held in March 2015.
NFCA and Celiac Disease Foundation advocates attended the conference, and for 48 hours, the community was buzzing about the future of celiac and the possibility of drug therapy for us.
Dr. Joseph Murray best summed up the reason drug therapy is a hot topic when he posed this question in an NFCA tweet: “Why should a person with celiac disease be denied the opportunity to live a normal life?”
A TRENDING NEED?
While your own version of a “normal” life—and the very idea of taking medication—is a personal decision, I really wanted to understand our community’s needs for pharmaceutical help. An NFCA community poll revealed that more than 50 percent of their readers are definitively interested and 38 percent are potentially interested in drug therapy for celiac disease. So even if you’re not personally interested, our community is open to the concept.
Why the interest in drug therapy? Dr. Murray assessed the pharmacological needs for celiac patients as symptom relief, accelerating healing, and reducing the risk of long-term consequences of the disease. But what does t hat mean for our real day-to-day lives?
NFCA readers cited support for the gluten-free diet, with their primary needs including help with avoiding cross-contact and assistance with symptoms after being “glutened.” Another main reason: to alleviate the psycho-social impacts of the disease.
I polled the folks at my Facebook fan page about the biggest burdens they face in living a gluten-free life. After reading through the responses, I found that the majority of the issues revolved around:
• other people, from friends and family to servers at restaurants, not taking them seriously (which can lead to glutenings);
• a lack of spontaneity/flexibility (like the ability to go out to a new restaurant without intense research or a lot travel).
These are major issues facing our day-to-day lives, as my Facebook poll reflected. One of the hardest replies to read: “People don’t invite you out anymore because you’re ‘the burden’…. That make it miserable.”
It’s not the first time I’ve heard something like this. We become outsiders—the invitations quit coming because we eat different food, and it’s just too hard to make sure we’re safe, so they don’t bother.
But what if… instead of the disease being the burden, the burden is… you?
In the webinar I viewed, there was talk about how college-age celiacs are going to schools based on whether the institutions can feed them—not necessarily because they offer the type of education they want. This is how it celiac disease can affect our lives.
I know we often downplay how difficult it is to have celiac disease, to live a gluten-free lifestyle, and to constantly think about food throughout our day, every day. And when we meet people and tell them we’re gluten-free, we’re increasingly met with responses like, “How hard is it really? Oh yeah, I totally bake gluten-free sometimes. I found these great mixes that are great for gluten-free. Oh, I have a friend who’s gluten-free—I make her stuff all the time. It’s so easy now.”
I do believe that in 2015 we’re living our best lives as celiacs, with gluten-free everything available in stores and online, just a “buy it now” click away.
However, I still think that living with an autoimmune disease isn’t necessarily easy. When we refute the response above and tell those people we’ve just met, “Yeah, but… it’s not that simple,” or when you say you can’t go out because you’re down-for-the-count stuck in the bathroom thanks to a slip-up from a server, they don’t quite understand that part of it.
I believe that much of this is about education. “Gluten-free” is still a new term, one that gets thrown around and intermixed with fad diets and weight-loss trends. But those of us who need the diet for medical issues are facing an uphill battle teaching those around us what our needs are for a safe and healthy life.
In my early 30s, I wonder about my long-term health and the future for those of us living with celiac disease. Will our world ever get it? Will I stay healthy long-term on the gluten-free diet alone? What will my health be like when I’m 50, 60, or 70, managing a gluten-free diet for the rest of my life? What about my readers who aren’t as careful dining out? What about those who cannot afford the additional cost of gluten-free food? What about those who can’t manage their own gluten-free diet—like elderly patients or those with disabilities? What’s their future?
Our future as celiacs—and the future of using drug therapy to help our disease burden—is still being tested and trialed every day. While drug therapy may not be for you, it’s a huge step forward and can be life-changing for many faced with the burden of a disease without a cure and—up until now—no pharmaceutical intervention.
* My disclaimer: I am an official blogger for National Foundation for Celiac Awareness and the Celiac Disease Foundation. However, the above opinions are my own and are not affiliated with those of the NFCA, CDF, or of this publication. —E.D.
Originally posted April 2015