Some of you may have read the recent article by Jane Brody in the New York Times, Who Really Needs to Be Gluten-Free? It’s an accurate overview of the gluten-free landscape, but what’s being overlooked —at least for those of us suffering from celiac disease – is that the gluten-free diet is far from a complete treatment and nowhere close to a cure. And for those who are not diagnosed or who are going untreated, people with celiac disease are at-risk for related serious health consequences, including other autoimmune diseases, osteoporosis, thyroid disease, and even certain cancers. We’ve known since 1952 that gluten is the culprit, and yet in the last 65 years, no additional therapies have been developed. We need to push the conversation beyond the gluten-free diet and advocate for treatment options, and yes, eventually a cure for this serious genetic autoimmune disease.
“You have celiac disease. Go gluten-free and you’ll be fine.” That’s the message that so many in our community – the minority that have received an actual diagnosis – hear when they get the news. For most of us, that’s it. We’re left to fend for ourselves even though research is showing that up to one-third of people with celiac disease continue to experience intestinal damage caused by the body’s immune response to gluten despite trying to adhere to a gluten-free diet. We feel so abandoned by the medical system that one-quarter of us haven’t bothered to go back to our doctor in the past five years. Those of us with celiac disease know that there’s a real need for alternative treatments to replace or supplement the gluten-free diet. And frankly, until there’s a treatment beyond the gluten-free diet, celiac disease will continue to be an under- or misdiagnosed, poorly managed public health problem.
Beyond Celiac recently changed its mission statement in response to input from the celiac disease community, medical and scientific advisors and its 13 years of advocacy experience. As an evidence-based organization, Beyond Celiac relies on credible science to drive the education of its community as well as advocate for changes that will improve the quality of life for everyone with celiac disease.
There is more than 10 times more NIH funding for inflammatory bowel disease (IBD) than for celiac disease research. In the pharmaceutical industry, research and development resources for celiac disease up until 10 years ago, were essentially zero.
The good news is that there are currently six types of treatment in varying phases of research seeking to find additional options for patients. Combined with, and perhaps one day in place of, the gluten-free diet, these could improve the health and quality of life for celiac disease patients.
But we are still some distance away from getting a celiac disease drug approved. If you’re a person affected by celiac disease, you can help by staying abreast of the latest news and volunteering for research studies. Beyond Celiac presents clear and relevant updates – You can sign up for the latest in research news to see what’s happening in the field and check out the easy-to-use clinical trials finder and an interactive drug development pipeline to illustrate the progress in the field. We are also building an on-line community, Go Beyond Celiac, to make sure that people with celiac disease are active participants in research efforts.
So the question shouldn’t be: Who really needs to be gluten-free? It should be: Why don’t we have something better than just gluten-free yet? It is possible. We have the will. Now we need to have our community step up, fight for and demand it from scientists and researchers. Our lives are depending on it.