Celiac Disease can be miserable, painful, lonely, isolating, hard, but it doesn't have to be

Living with celiac disease is not just about food. It affects relationships, mental health, social life, and how safe you feel in the world. This post is for anyone who feels overwhelmed or isolated after a celiac diagnosis. Feeling lonely or overwhelmed after a celiac diagnosis is common and valid. You are not alone. I have been there too.

The Emotional Reality of Living With Celiac Disease

I saw a video today of someone who was recently diagnosed and had accidental

ly eaten gluten. She was so sick, but what made it worse was that her family was mocking her and saying that she loved pain, and that it wasn’t that bad. I hear these comments often from friends. Not only is celiac disease so hard physically, it is mentally and socially challenging.

People you know have a hard time understanding how you suddenly can’t eat what you used to eat. They stop inviting you places because it is hard on them. Little do they know how hard it is on you. This diagnosis changes how you live. It takes away spontenateity, and adds fear and worry that you will get sick every time you eat out.

Why Friends and Family Often Do Not Understand

When I was first diagnosed, navigating the conversations with friends and family were some of the hardest. Here are a few things that helped me.

Learning to Advocate for Yourself After Diagnosis

Finding my voice and realizing that advocating for myself was so important to my physical and mental health.  I realized that I wasn’t being difficult, I was just asking for what I needed. If you were taking care of a small child who needed a special diet, you wouldn’t hesitate to ask for the child.  When you are first digagnosed, you are that child, no matter your age. You deserve to advocate for yourself.

Why Community Matters More Than You Expect

Connecting with people who understand - connecting with other people with celiac disease has been so life giving. I connected with people through social media and in person through meetups and my local National Celiac Association group.  If you are not part of a local group, find a group through National Celiac Association or Celiac Canada. There are even virtual groups if you can’t find one in your area.

Meet people at dedicated gluten-free restaurants - I have met so many people just talking to them at gluten-free restaurants. You never know if you will meet a friend.

How Education Builds Confidence and Safety

How did I learn to advocate for my needs? I educated myself so I could educate others.

• Learn from experts:  National Celiac Association, Celiac Disease Foundation, Gluten Intolerance Group, Beyond Celiac, and Celiac Canada all host webinars and share valuable information on their social media. University of Chicago Celiac Center, Boston Children’s Celiac Center, and many other also share updates and free resources. I have learned so much about my disease and especially about the encouraging new research that may make it a thing of the past one day.

• Selective social media: I am careful about who I get information from online. I stick with people who back up their information with research and facts. That means that most Facebook groups need to be taken with a grain of salt.  I find their recommendations are suspect at best. My favorite podcast for learning more about living with Celiac Disease is The Celiac Project Podcast, it is always well-researched and they have great guests that educate and inform.

• Learn how to read labels and how to choose safe restaurants. After advocating for yourself, these are the most important skills you can learn.  Read my blog on reading labels or my blog on choosing safe restaurants.

Eating some gluten-free pizza on a dinner out with gluten-free friends who have become family

If you are newly diagnosed or struggling with the gluten-free life, you don't have to figure it out alone. The resources linked on this page are a huge help, and if you need additional guidance or support, you can scheudle time to connect with me. I can help answer your questions, and give you resources that will help you navigate life with celiac disease from someone who has been there. It will get easier, and life can be good again. Trust me, I know.