New Beyond Celiac board member emphasizes patients role in celiac disease research
(Second in a two-part series)
By Amy Ratner, Medical and Science News Analyst
New Beyond Celiac Board member Ciaran Kelly, M.D., has been working on celiac disease for more than three decades. He’s seen the landscape change from a time when there was so little research being done that patients were never asked to participate in clinical trials to today, when their involvement is critical for better understanding, diagnosis and treatment.
We talked with him about the role patients play and why without their collaboration, he says, “we can’t go anywhere.”
There is increasing value being placed on the patient’s voice when it comes to researching disorders, funding for disorders and drug development. Certainly, the Food and Drug Administration (FDA) is rightfully becoming more concerned about hearing from patients about what it is that patients want, what it is the patients need and what patients like and dislike. Having a group of patient advocates who have the opportunity to become educated in those arenas is very, very important.
The gluten-free diet has been a double-edged sword. Clearly, it has saved lots of lives. For most people, it works really well, but there is a fallacy that it is all that’s needed. It’s not true because not everybody responds to the gluten-free diet, and even those who do find it’s a burdensome treatment. And that fallacy meant that research was not being done in celiac disease. All the time that IBD was being researched intensively almost no research was being done for celiac disease because the concept was, “Oh that’s been solved. That’s taken care of.” Thankfully that’s beginning to turn around.
What patients need to know about research in celiac disease is that it can’t be done without their participation. We can’t do any clinical research, we can’t develop any novel agents, we can’t find out more about the disease unless you participate. Ten years ago, when my colleagues and I first initiated clinical research in celiac disease, it created a flurry of excitement about participation because patients had never been asked to get involved before. They never even heard about any research being done.
Unfortunately, I think that honeymoon period has passed. Now it’s becoming more difficult to persuade people to participate, though not any more difficult than it is in other diseases. Patients and their families need to know that if we don’t collaborate then we all go nowhere.
I totally understand that attitude, number one. Number two, if an individual with celiac disease is perfectly happy with the treatment that’s provided in the form of the gluten-free diet, well absolutely, they can rely only on it. But it’s important to realize that not everybody has that experience, and there is a substantial number of patients who, despite following a gluten-free diet, still have ongoing symptoms and sometimes persisting intestinal damage.
Sometimes that’s caused by inadvertent gluten exposure and sometimes by another disorder, but the sensitivity to gluten varies enormously between patients. We need to think about it on an individual level and not consider that no one needs a medication because some people don’t need a medication. In surveys on the topic, many people report that they would prefer to take a pill. About 60 percent said they have some level of interest in medication to help treat their celiac disease.
One autoimmune disorder carries over into other disorders because it’s the same immune system and it follows a shared, stereotypic response patterns. I believe celiac disease patients participating in research can make a unique contribution to research in all autoimmune disorders. The reason is quite straightforward. With most autoimmune disorders – including rheumatoid arthritis, multiple sclerosis, type I diabetes – the contributing environmental factors are unknown.
But celiac disease is an autoimmune disorder where we know what triggers it, so that means that we’re much further forward in terms of being able to establish a cure. I think once treatment for celiac disease becomes available, and particularly if it proves possible to re-establish tolerance to gluten, that could lead to a huge surge in trying to do the same for other autoimmune diseases. People who participate in celiac disease research can really be pioneers in curing auto-immunity.
Absolutely. We did a study some years back and asked patients to ingest gluten, a so-called gluten challenge, and to have three endoscopies with biopsies to monitor their response to the gluten. Many people, including myself, were amazed that patients volunteered to do these things. I called them the celiac disease Marines because they were willing to go in where nobody else would to advance the field. I might add that the findings of that particular study led to improved national and international guidelines for how a diagnostic gluten challenge should be performed.
Take the first step toward becoming a celiac disease Marine by being informed and signing up for our Research Opt-in here.
Read the first part of our interview with Dr. Kelly here.