Do You Know How Celiac Disease Works?

If someone asks you, “What is celiac disease?” you probably have a response ready and waiting. But have you ever thought about exactly what happens when your body reacts to gluten? What goes on that causes those symptoms? What makes it an “autoimmune” response?

As the president of a national patient advocacy organization, I’ve been fortunate to learn a great deal of information about celiac disease from the world’s leading researchers. Had I not founded the National Foundation for Celiac Awareness (NFCA), I wouldn’t know nearly as much about my own condition as I do today.

Our goal at NFCA (celebrating our 10th anniversary this June!) is to share the information we learn with you, but we also know that the average person is lucky to have 8 minutes per week, let alone 8 hours per day, to read the technical details about celiac disease. Most of the time, immediate needs – like researching which local restaurant is serving gluten-free or how to convert a family recipe – take priority.

For most of us, knowing what to eat, what to avoid and which questions to ask when dining out are enough to get by. Words like “t-cells” and “zonulin” aren’t part of our everyday conversation, and they certainly don’t help when trying to decode a nutrition label.

At the same time, it’s more critical now than ever to know and understand how celiac disease works. We are on the cusp of a pharmaceutical revolution in celiac disease treatment. A vaccine or pill is no longer a pipe dream; it’s a very real possibility.

Over the past year, you’ve probably seen announcements about clinical trials for potential new celiac disease treatments. You may have read news articles or press releases about advances in pharmaceutical development. These advances include gaining the attention and support of major pharmaceutical and biotechnology companies – support that could be a game changer for everything from physician education, to public awareness of celiac disease, to disease management.

And we as celiac disease patients have an incredible opportunity to participate in the development of treatments that could help millions of our peers.

Participating in clinical trials is a very personal decision, and it’s one that should be based on a great deal of information and education – not just about the trial itself, but about the underlying problem it’s trying to solve. As they say, “To know where you’re going, you have to know where you’re coming from.”

On Tuesday, June 11, NFCA hosted a free webinar titled “Celiac Disease: Immunology 101 and the Drug Development Process.” The webinar featured two experts in the fields of immunology and pharmacology. It’s your opportunity to learn about the things that aren’t covered in a typical appointment with your doctor or dietitian. For example, you’ll learn how to:
• Explain the immunological process of celiac disease
• Identify reasons why a non-dietary pharmaceutical therapy is needed for celiac disease
• Describe the stages of the FDA’s drug development and approval process
• Discuss the role patients play in clinical trials

It’s time that we move beyond talking about the gluten-free diet and understanding the root of our disease.
I encourage everyone to visit NFCA’s Webinar Archives to download the presentation recording and slides. NFCA will also provide free access to more information on pharmaceutical developments as details emerge. Visit our new web section, “Drug Development and Clinical Trials” to find all the details.

This blog post originally appeared on BlogHer: http://www.blogher.com/do-you-know-how-celiac-disease-works

One Comment On “Do You Know How Celiac Disease Works?”

  1. My family is very new to gleutn-free. My seven-year-old has been gleutn-free for only a week. I am starting a on OneCreativeMommy.com. Today was my first post. I would love it if you visited and linked up some of your great ideas. I’m looking for anything that has to do with going gleutn free. (Inspirational stories, recipes, and the highs and lows of Celiac. We can all teach each other. I hope to see you there.at

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