I just reviewed the Celiac Disease Patient Advocacy Summit. There is a lot of good information regarding current trials and how to advocate within your community. But I want to focus on the need to participate in clinical trials.
Lots of study types
There are a variety of clinical trials out there for those with celiac disease. Some are observational – where you just report to the researchers what you ate or how you felt. Some are investigational – where they are testing a new drug or treatment for celiac disease. Some require gluten ingestion, some don’t. Some require a long term commitment and some don’t. Some celiac studies even look for family members of those with celiac disease or healthy volunteers in order to study something.
Find a study that is right for you, enroll, and help science understand celiac disease more clearly. Let’s talk about the more personal reasons to join a study.
Imagine going to a friend’s home for dinner and not having to call ahead and explain that you may not be able to eat what they are preparing.
Remember when you could go to any restaurant at all without doing research on the menu before arriving?
While the simplest of examples, these are the things we deal with engaging in the world. Social scenarios have been much simpler during COVID for those of us with food issues, but the world is opening back up again. Summer is coming. BBQ’s and potlucks are going to come around again and the social strain of having celiac disease will rear its ugly head again.
A drug to help process gluten or induce the immune system to stop recognizing gluten would help eliminate all of these awkward situations. But that’s just one reason.
Potentially improved health
It is common knowledge that a gluten free diet is imperfect. The damage to the small intestine can take years to heal. Sometimes it never heals leading to a diagnosis of refractory celiac disease and the potential for cancer.
A drug that helps the body process gluten allows complete healing from celiac damage. Healthy bodies are much happier bodies.
Mental Well Being
It is the mental energy that being on this diet takes. It is the constant vigilance and fear that weighs on me. It is the uncertainty of whether I got food poisoning or whether I got glutened from eating at that new restaurant.
I got a mental break from celiac disease on day while packing food for my son’s camping trip. I had to remind myself that I didn’t have to pack gluten free foods. He could eat the gluten filled trail mix and I could wrap burritos in flour tortillas. The constant mental anxiety surrounding food lifted immediately.
Simply not having to worry about getting gluten in my system 3 times a day would be amazing!
Clinical trials are scary. Taking a unproven drug or allowing someone to test all of your food for gluten is unnerving. Find a trial, ask lots of questions, understand the informed consent, and join. You will learn a lot about yourself and your disease.