building your celiac support village
Living with Celiac Disease: How to Build a Support System
When I was first diagnosed with celiac disease, there was a moment of relief—I finally had an explanation for years of mystery symptoms. But it wasn’t long before the reality of living gluten-free hit me hard. From rethinking how I ate, to navigating social situations, I was overwhelmed by the changes ahead. And as I soon realized, the physical side of the disease wasn’t the only challenge; it was the emotional toll that also required attention.
I often felt alone, especially because celiac disease can be so isolating. It’s hard to explain to people why cross-contamination is such a big deal, or why you can’t eat something that "seems" safe. But over time, I came to understand how important it is to build a support system. A network of people who truly understand your challenges, provide encouragement, and can share tips and experiences makes a huge difference in your journey.
If you’re feeling overwhelmed or isolated by your diagnosis, here’s how you can build a strong support system—one that lifts you up and helps you manage the emotional and practical side of living with celiac disease.
1. Start with Your Family and Close Friends
The foundation of your support system is often right in front of you—your family and close friends. While they may not understand exactly what you're going through at first, they can become your biggest advocates once they are educated about your condition.
What helped me: I sat down with my family and friends after my diagnosis and took the time to explain celiac disease—how it affects my body, why it’s important to avoid even tiny amounts of gluten, and the potential health risks of exposure. Many of them didn’t realize how serious the condition was at first, but after seeing how it impacted my daily life, they became incredibly supportive. When we went to social events, they made sure there were safe foods for me or asked ahead to ensure places understood cross-contamination.
Tips for building family and friend support:
Educate them on the details of celiac disease and how they can help.
Share easy-to-understand resources (articles, videos, etc.) to help them learn.
Encourage them to ask questions, so they can feel more involved in supporting you.
Don’t hesitate to ask them for help in navigating new social situations—having their support can make things feel less isolating.
2. Join Online Communities and Support Groups
When I felt like I couldn’t talk to anyone around me about the struggles of living with celiac disease, I turned to the internet. There are a wealth of online communities for people with celiac disease and gluten sensitivities. These spaces allow you to ask questions, get advice, and share experiences with people who truly understand your situation.
What helped me: I joined a few Facebook groups and followed Instagram accounts dedicated to celiac disease. It was a huge relief to read about others who were going through the same thing. These communities became invaluable sources of advice—everything from which brands were trustworthy, to tips on managing symptoms, and how to stay safe while traveling or dining out.
Tips for joining online communities:
Look for groups that are specific to celiac disease or gluten-free living, as these will be most helpful.
Don’t be afraid to ask questions—there’s a wealth of knowledge and support waiting for you.
Be cautious and critical of the advice you receive—what works for one person might not work for you.
Follow celiac bloggers and influencers who share personal stories, recipes, and tips for living gluten-free.
3. Attend Gluten-Free Expos and Events
One of the best things I did shortly after my diagnosis was attend the Wicked Gluten-Free Expo, an event that brought together a community of people who understood exactly what I was going through. There, I met other celiac patients, chatted with food vendors, and learned about the latest gluten-free products on the market. It was an eye-opening experience that helped me feel connected to the community and less alone in my journey.
What helped me: Going to the expo with family and friends made me feel so loved and supported. Ethan came with me, which made it even more special—having that presence from people I trusted made me feel safe and understood. And, of course, getting to try new, gluten-free foods was a bonus! The expo wasn’t just about food—it was about seeing the community come together, sharing stories, and connecting in ways that made me feel hopeful about my new life with celiac disease.
Tips for finding gluten-free expos and events:
Look for gluten-free expos in your area—many cities host annual or semi-annual events.
Check local event listings, health food stores, or gluten-free organizations for upcoming expos.
Bring a friend or family member along for emotional support and to make the experience more fun.
Use these events as a chance to network with others and discover new products that will make living gluten-free easier.
4. Look for Local Support Groups
If you're craving more in-person support, local celiac disease support groups are an excellent resource. Many cities host monthly or quarterly meetings where people share tips, support one another, and discuss the challenges of living gluten-free. These groups are often a great way to meet others in your area who are facing similar challenges.
What helped me: I found a local celiac disease support group and started attending their monthly meetings. Not only did I learn a lot about how others manage their gluten-free lives, but I also made new friends who shared my struggles. It was incredibly comforting to hear other people’s stories and to feel like I wasn’t alone in my experience.
Tips for finding local support groups:
Check with local health organizations or hospitals to find support groups.
Ask your doctor or dietitian for recommendations.
If there’s no support group in your area, consider starting one! Even a small group of like-minded individuals can make a huge difference.
5. Lean on Your Healthcare Team
Your healthcare team—especially your gastroenterologist, dietitian, or celiac disease specialist—plays a crucial role in your support system. Not only can they help you manage the physical aspects of celiac disease, but they can also provide guidance on how to handle the emotional challenges.
What helped me: My celiac specialist has been instrumental not just in managing the medical side of my diagnosis, but also in providing emotional support. During my appointments, I felt comfortable discussing the mental and emotional aspects of living gluten-free. They provided reassurance and reminded me that recovery takes time.
Tips for working with your healthcare team:
Keep them updated on any emotional struggles or concerns you may have.
Ask for a referral to a dietitian or counselor who specializes in chronic illness if you feel you need extra emotional support.
Regular check-ups are essential for tracking your health, but these appointments can also be an opportunity to discuss your emotional well-being.
6. Connect with People in Everyday Life
Sometimes the best support system can be found in your everyday life—people you meet at work, in your neighborhood, or even at the grocery store. You may not even realize how many people in your circle are also living gluten-free.
What helped me: Once I started sharing my diagnosis openly, I found that a few of my coworkers and acquaintances also had celiac disease or gluten sensitivities. We began exchanging gluten-free recipes, eating out together, and even organizing small potlucks. It was reassuring to know that others were living similar lifestyles, and these everyday connections made me feel less isolated.
Tips for finding everyday support:
Share your experience with coworkers, neighbors, or acquaintances—they may be going through the same thing.
Ask for recommendations for gluten-free-friendly places or resources.
Don’t be afraid to speak up about your dietary needs—more people understand than you think!
Final Thoughts: You Don’t Have to Do This Alone
Building a support system when you’re living with celiac disease takes time, but it’s one of the most rewarding things you can do for your mental and emotional well-being. Whether it's through family and friends, online communities, local support groups, or attending gluten-free expos like the Wicked Gluten-Free Expo, finding a network that understands and supports you is key.
Remember, you’re not alone in this journey. The celiac community is vast, and there are so many resources out there to help you feel supported. It’s important to give yourself grace and patience as you adjust to your new lifestyle. Healing and adapting take time, but with the right support system in place, you’ll find the strength to navigate it all.