What can you do to help further awareness of Celiac disease? A whole range of things, from big to small – there’s something for everyone!

Get Informed – Learn More About Celiac

Did you know that although Celiac disease has been studied for centuries, it wasn’t recognized as an autoimmune disorder until the 1990s? And did you know that diagnostic standards for Celiac weren’t formally recognized until 1969?! From Aretaeus of Cappadocia to the “banana diet” to Dr. Margot Shiner, the history of Celiac is both centuries old and decades short. Learn more about the history of Celiac disease here.

Celiac isn’t a fad diet – it’s a serious autoimmune disease that has lifelong implications. Learning how to live with it can be overwhelming, especially for those newly diagnosed. The Celiac Disease Foundation is a great starting point – they have a great summary of the basics of Celiac and the gluten free diet here.

It can be tricky keeping up on current research and the future of Celiac, but there are resources out there to help! Sign up for research updates from Beyond Celiac here or follow research news from the Celiac Disease Foundation here.

Get Online – Boost Awareness on Social Media

Celiac disease is often dismissed as not serious or not a real disease – I’ll admit to thinking it was nothing beyond a fad diet until my own diagnosis. Sharing information about the realities of the disease, from statistics to your own experience, can further awareness and help shift public perception.

Beyond Celiac created shareable graphics to make this quick and easy – click here to check them out. You can choose from Facebook profile frames, Instagram posts, Zoom backgrounds, and infographics with the basics of the disease. On the same page, you’ll also find YouTube clips where those with Celiac are sharing their stories.

Also, engaging with Celiac channels on social media helps boost the visibility of Celiac creators and it’s as easy as liking posts, following accounts, and sharing/reposting their content (with credit, of course!). You can find any Celiac topic imaginable on social media – travel, dieticians, recipes, or general Celiac tips – Instagram and TikTok have you covered.

Get Political – Contact Your Representatives

Did you know that there is a Congressional Celiac Disease Caucus? It’s pretty brand new – Congresswoman Betty McCollum launched the caucus in August of 2021. Contact your representatives to see if they’re on the caucus, and if not, encourage them to join. You can find a sample letter for contacting your representatives here.

There are a variety of ways in which your representatives can further the cause – from healthcare legislation in general to bills like the Gluten in Medications Disclosure Act (a personal favorite, I’m SO tired of contacting drug manufacturers each time I’m given a prescription). Put the pressure on your reps to help!

Get Your Wallet – Donate

Have a few extra bucks? Donations of any size help in a variety of ways – from patient care to research to education and awareness. Here are a few organizations where you can make tax-deductible donations:

• – National Celiac Association
• – Beyond Celiac
• – Celiac Disease Foundation
• – Hospitals and Universities with Celiac programs or trials – University of Chicago Celiac Disease Center and The Celiac Disease Center at Columbia University are two examples

Get Out There – Participate in Clinical Trials

Check to see if clinical trials are happening in your area, and if you feel you’re a good fit (note: this is definitely not for everyone), see if you qualify as a participant! In addition to contributing toward treatment, vaccines, or a cure, you may also be compensated. There are plenty of ways to learn about clinical trials, here are just a few:

• – ClinicalTrials.gov – visit their site and enter “Celiac” in the Condition or disease field
• – Beyond Celiac Clinical Trial Resources
• – Your Healthcare Team – ask your GI specialist or Primary Care Physician if they’re familiar with Celiac trials in your area

This is just a quick list – there are SO many ways to get involved and further awareness and research for Celiac disease. Of course, you don’t have to wait until May to do it, but it’s an excellent time of year to think about how we are currently getting out there and how we can do more.

From us to you, Happy Celiac Awareness Month!