Why Patients' Role in Research is Crucial for Finding a Cure for Celiac Disease

When it comes to celiac disease, there is a lot that is known and a whole lot more that still remains a mystery.  At a recent symposium called Beyond Celiac Research, experts came together to discuss what can be done to improve and increase research around celiac disease and possible treatment options.

There was one resounding theme that emerged in the symposium, which was the important role that patients and their families have in learning more about celiac disease and exploring treatment options. In other words, scientists, doctors, and drug companies can do all they can to develop different and more effective treatment options, but without the participation and first-hand information from those who live with the disease, all that research will go nowhere.

There are many misconceptions around celiac disease, including how to treat it. While going gluten-free does in fact help reduce the symptoms for those with celiac disease, it's not a cure. The reality is that it's virtually impossible to go completely gluten-free and to maintain the diet 100% of the time.  

Maintaining a gluten-free diet is difficult and requires education, discipline, and dedication by those who suffer from celiac disease and their family and friends.  As many as 40 percent of those who are told to switch to a gluten-free diet as treatment are not able to maintain it beyond a short period of time. Inevitably, they consume gluten - either by choice or by accident.

Another thing to remember is that going gluten-free is not a treatment option for all celiac disease sufferers.  As many as 30 % of celiac disease patients do not respond to gluten-free diets and still end up with symptoms and intestinal damage.  

Who gets celiac disease?

This is one of the most common questions asked about the disorder.  At times, it may seem that there is no rhyme or reason as to why a baby is born unable to consume gluten or why an adult develops it later in life. That's where the research comes in.

More than 8000 years doctors, scientists, and researchers have been studying celiac disease, its effects and what can be done comfortably live with it. This is what is known:

• Celiac disease is considered to be a genetic condition
• Only 1 in 40 people who are genetically pre-dispositioned to have celiac disease develop any symptoms - some remain asymptomatic for life
• The proteins found in gluten causes inflammation and will result in damaged intestines
• In some cases, celiac disease will cause malabsorption of vitamins and can lead to anemia, nutritional deficiencies, osteoporosis, cancer, and malnutrition.
• Many people with CD often remain undiagnosed until irreversible damage has been done.
• The only known treatment at the moment for celiac disease is to go gluten-free
• Gluten is the only environmental trigger for the disease.

There is still so much more to learn about celiac disease and the only way that can be done is through research.

What is the patient's role in celiac disease research?

Quite simply, to be active participants. Taking surveys to share firsthand knowledge of the disease, making personal medical information accessible to researchers or joining studies, are just a few ways that patients and their families can help with celiac disease research.

This is especially true for pediatric patients. Parents who participate with their children in various studies can help researchers reach goals such as the implementation of family screening for all children and answer questions like, why some people never develop symptoms.

Who pays for all this research?

This is the age old question, but who will pay for it?  Unfortunately for those who have celiac disease, it's often overlooked by various organizations for funding and grants.  Let's face it, since there have been so many falsehoods floating around, like the idea that of a gluten-free diet is a cure, celiac disease is often shoved way down on the priority list.

During the Bold Beyond Research Symposium, one of the points that was made with regards to research was needed to get more funding and how to go about it.  The panel asked for those with celiac disease become vocal advocates and educate others about the lack of funding and the need for more money for more complex research studies.  In other words, the more noise that is made around the lack of funding to celiac disease research, the easier it will be to secure said funding.

For future research, these are the goals that researchers want to accomplish:

• Obviously, one of the main goals is to come-up with a cure - a way to let everyone, whether they have celiac disease or not, enjoy all those lovely comfort foods like plates of pasta, breads and even milkshakes without repercussions.
• Easy and simple interactions to help patients and their families live with celiac disease in unobtrusive ways.
• To implement screening programs so that the number of undiagnosed cases shrinks.
• Finally, to secure funding to allow for more research towards treatments for CD and to help find a way for early intervention for pediatric patients.  

But, what happens when there isn't any funding for research? This is something that no one wants to really think about.  Less or no research means that more people with celiac disease will continue to live, with great difficulties, a gluten-free lifestyle. Fewer people will also remain undiagnosed for years to come and more people will attempt to self-treat their condition.

Undiagnosed and ultimately untreated celiac disease can lead to:

• A higher risk of developing cancer
• A higher risk for osteoporosis
• A higher risk of developing other autoimmune diseases
• For women, unexplained fertility

So, how can you get involved?

There are many ways for those with celiac disease and their families to get involved in research and to become advocates. Try to research local groups and organizations and, when possible, join them. Share stories and be vocal about living with celiac disease and the gluten-free lifestyle.

Be active participants in medical studies, speak with medical professionals to learn more about and upcoming studies and their need for patients. Participate in symposiums, seminars and fundraising activities to increase funding and to educate others.

Celiac disease is a life-changing and, at the moment, incurable disease.  For some, it is considered to be debilitating.  With continued research, there is hope that effective treatment options will be available by the 2020's, so potentially in less than 10 years.  But the only way that finding the right treatment options is by ensuring that patients of all ages, and who suffer from different spectrums of celiac disease, are active participants.  

To learn more about research around celiac disease and events like the Bold Beyond Research Symposium, you can watch the webcast from the symposium itself here.  

This event and much more like it are setting a clear path towards the discovery of an effective treatment that can change the lives of hundreds of thousands of celiac disease sufferers.