Entering the ‘age of enlightenment’ with a new generation of celiac disease leaders
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I’ve been engaged in celiac disease for more than 30 years, and for a long time it was what I call an orphaned disease, with less than a handful of expatriate academics exhibiting any interest in it.
The irony is that in the ’60s there was great interest in celiac disease in academic gastroenterology, with GI giants publishing on celiac before it went out into the wilderness. A renaissance of interest was born in the ’90s and grew into what I call the “age of enlightenment,” where celiac disease is not only considered a major disease within GI but also an excellent example of an autoimmune disease. It is garnering a lot more attention as a model disease in which we can manipulate the immune system.
Source: Adobe Stock.
The other thing that’s changed tremendously is we have a new generation of leaders — like the many interviewed in this story — who are focusing on this disease.
This piece really illustrates that celiac disease should be the bread and butter of GI practice. Every gastroenterologist must have a working knowledge of who to test, how to test and the intricacies of properly initiating and coordinating therapy. GIs need to be able to incorporate diagnosis and management guidelines into practice. Ideally, they will also be involved in following up with patients, even if they do not live near one of these centers of excellence.
Also apparent, especially because of the engagement of patient advocacy organizations, is that all is not well in the world of quality of life. Patients carry a terrific burden maintaining a gluten-free diet. There is a need for additional treatments: Our patients want them and should have them, presuming they have been shown to be safe and effective.
As Alberto Rubio Tapia, MD, pointed out, we know a lot about the mechanisms of celiac disease. While there’s still a lot to discover, what we currently know has become the basis for developmental efforts for treatments beyond the gluten-free diet.
The “age of enlightenment” also has brought to light the need for multidisciplinary involvement. It’s not just the gastroenterologist alone — patients need an expert dietitian. No patient should be started on or given a diagnosis that requires lifetime management without access to an expert nutritionist to help them live gluten-free. That’s just a basic expectation. There are so many people with celiac that this expertise should not only be widely available but also covered by insurance.
Challenges within this disease still exist and are broad. Lisa M. Fahey, MD, was correct in her sentiment: There needs to be more support and funding for research, because this is a common disease, and it has a major impact on patients across the entire age spectrum.
A major gap in knowledge also persists in the screening, diagnosis and management of this disease — namely, the key question of who to test. Nuanced differences exist between pediatric experts who test patients at high-risk and adult experts who test once patients have a hint of symptoms. We need more data to know whether we should be testing adults who are at risk but asymptomatic. By default, we are not testing for the disease because of lack of sufficient evidence, rather than erring on the side of caution and testing.
Some people live with this disease for so long that they’ve accepted their life or their symptoms as normal. They don’t recognize that it’s not normal. Even after a celiac diagnosis, they continue to have symptoms and accept it, downplaying it partly as a method of self-preservation. By doing this, they’re making it harder to justify coming up with alternative treatments. I have seen this in all the clinical trials I performed. People have been suffering in silence for far too long.
I could also make the rather provocative comment that celiac disease is the most common inflammatory bowel disease — it just hasn’t been accepted into that community of IBD doctors, even though it is chronic inflammation of the bowel. I suspect, or rather predict, that once there are drugs available beyond the gluten-free diet, we may see a lot more interest from those who have focused solely on IBD.
Overall, with this new generation of researchers and clinicians, I see a lot of hope, energy and terrific enthusiasm for furthering our knowledge of celiac disease and giving our patients the best possible treatment.
- For more information:
- Joseph A. Murray, MD, is a professor of medicine in the department of gastroenterology and hepatology at Mayo Clinic.
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