Learning how to speak up with celiac disease takes time.
Receiving the diagnosis of celiac disease can be overwhelming for anyone. For me, the loss of my favorite food, like the New York pizza I grew up eating, was especially hard. A million emotions ran through my head and my heart as I coped with this new diet, lifestyle, and increased health issues.
Once you understand the harsh reality of a 100% gluten-free diet, the constant diligence required for managing it can be exhausting. Trust me, I've been there. It's okay to feel stressed, nervous, or emotional. The demands of this disease can take not only a physical toll but a mental one as well.
Self-advocating or the act of speaking up for your needs with celiac disease doesn’t have to weigh you down, but it can sure feel that it does. Let's look at how self-advocacy can empower you to educate yourself and others to live a healthy and happy gluten-free life. Because when you advocate for yourself, you become a more confident person, and you in turn are advocating for thousands of others just like you.
Here are five ways for how to speak up with celiac disease.
How to Speak Up With Celiac Disease
Disclaimer: I am not a doctor or medical professional. Please note the information here should not be taken as medical advice. I am a celiac patient with no medical degree. I am sharing the strategies that have helped me stay safe with celiac disease when eating at home and around the world. Links in this article include research centers, doctors, information, and foundations related to celiac disease.
Speaking Up With Celiac: Acceptance to Advocacy
Acceptance is the first step toward empowerment and using your voice toward the good of others with celiac disease.
I accept my body, my health, and this disease as part of my life. It has taken a long time for me to get here, and it hasn't been easy. But I refuse to let gluten dictate my lifestyle, my travels, or my adventures. I choose to use my voice and my story to help others.
This blog exists because after years of advocating for myself with celiac disease, I wanted to help others do the same. I knew there were other celiacs in the world who deserve to eat delicious food, have bucket list travel adventures, and live their lives to the fullest - even with a dietary restriction.
By choosing to accept my celiac disease diagnosis, I can better speak up for my food and safety in my daily life. And by accepting your celiac disease diagnosis, you can better advocate for your own health too.
Know Your Celiac Disease Diagnosis.
Before your celiac disease diagnosis, this condition may have been foreign. Now that you are a celiac patient, your understanding begins to shift. You can relate to the symptoms, causes, triggers, and side effects. By digging deeper into this disease, you can maintain your health and wellness with the most scientific and relevant information available.
Learn about the science behind the disease. Be cognizant of what happens to the small intestines when gluten is ingested. Be aware of what conditions can be associated with celiac disease. Stay up to date on current research studies and doctors studying celiac patients and the gluten-free diet. Take everything you see online at face value - and always do your own research to get the facts.
Being as educated as possible on the topic of celiac disease is one of the best ways to advocate for yourself. When someone asks, "Oh, are you gluten-free?" it's the perfect time to elaborate. Rather than say "Yes", clarify with "I have celiac disease, which requires me to eat a 100% gluten-free diet. It's not a choice". Use it as an opportunity (if you are comfortable doing that) to share the facts about the disease so that one more person knows the truth. And if that person shares what they learned from you with someone else, and that person shares with one more person, we can create a chain reaction with accurate information that can benefit all of us!
Speak Up By Asking Questions.
An essential strategy to keep yourself safe in any food-related situation is to always ask questions. Contrary to how it may appear to you or anyone else around you, you are not annoying, rude, or an inconvenience. It is your right to gather as much data and information that you need in order to eat safely. We are not fad dieters.
Another aspect of speaking up with celiac is to make sure you are asking the right kind of questions. Contact cafes, restaurants, and eating establishments before you arrive. Rather than ask “Do you have gluten-free food?” ask, “Do you have dedicated kitchen space for preparing gluten-free food?”
With family or friends in social situations, ask about more than just the ingredients in a particular dish. Follow up, politely, with “Did you make this yourself? How is it prepared?” to understand not only the recipe but the preparation of the food item as well. Ask questions before the event so you can be as prepared as possible, and ready to bring your own food if necessary.
Speak Up & Go With Your Gut.
If something doesn’t seem right, it usually isn’t.
Our minds and bodies are connected, and gut feelings should not be ignored. If you feel uncomfortable, get a bad feeling at a restaurant, or you begin to spot little red flags in a social situation - trust those feelings and act on them.
Going with our gut is usually the right thing to do. It can save us lots of aches and pains along the way. Speak up and let your voice be heard to ensure your needs are being met. If your dish doesn't look safe, it's okay to ask questions or send it back. It might be uncomfortable at first, but your body will thank you later when you aren't in the bathroom for the rest of the night.
Our gut is also something that needs to be cared for, especially after a celiac diagnosis. Be mindful to do everything you need to optimize your gut health. Prioritizing your gut can help your body heal from intestinal damage when just going "gluten-free" isn't enough.
Speak Up About Celiac Disease With Others
It’s up to you to educate those around you if they are unfamiliar, naive, or just plain ignorant about celiac disease. If someone says they are going "gluten-free", ask them why and offer your insight. Sharing your experience, talking openly about your diagnosis, and educating others will help bring awareness to this disease. One of the best ways we can be heard is to make sure everyone understands our needs as celiac patients - especially in health care, restaurants, and grocery stores.
Be a voice for the celiac community in your own neighborhood, workplace, or school. With the amount of misinformation out there about the gluten-free diet, and even politicians claiming celiac disease is a conspiracy, it’s imperative we have accurate voices who share the truth behind this diagnosis.
Celiac disease is not a fad.
It is not a lifestyle choice.
It is an autoimmune disease with no cure.
Our only treatment is a strict, 100% gluten-free diet, and we deserve to be taken seriously.
How to Speak Up With Celiac: Find Community.
You aren’t alone in this fight. Here in the United States, celiac disease affects 3 million people. Learning how to speak up with celiac can be hard, but you aren't the only one struggling!
It’s comforting to have someone that can relate to exactly what you are going through. Reach out to fellow gluten-free friends on social media. Attend seminars and therapy groups for those with dietary restrictions. Visit gluten-free expos to make new connections with celiac safe brands, fellow patients, and local businesses. Every time a celiac meets a fellow celiac, it's like two long lost friends meeting for the first time! And if you happen to meet in the gluten-free aisle of the grocery store, that's the beginning of a beautiful friendship.
Support doesn’t have to come from those with celiac disease. It can also come from a partner, family member, friend, or colleague. Dylan has been my gluten-free cheerleader since Day 1. Dylan has seen firsthand what happens if I ingest gluten, as he's the one holding my hair back over the toilet when I'm violently vomiting. Our loved ones that have seen gluten attack our bodies can be our strongest advocates and supporters we have besides ourselves. It can be a relief to have someone looking out for your safety, asking additional questions, and being here for you with a hug when gluten rears its ugly head.
It’s normal to feel isolated when your diet can limit social interactions, but that doesn’t mean it has to be. Invite your family to celebrations at your home, where you can control the food environment. Ask friends to meet you at a dedicated gluten-free facility or celiac-safe restaurant. With small shifts, you can continue to feel supported and surround yourself with loved ones while eating safely.
Having support by connecting with other celiac folks can make a big difference in your confidence. I run a Support Group that meets twice a month to help with this. Learn more here.
Speaking Up: Final Thoughts
Use your celiac disease as something to empower you. Being an advocate for this disease means doing your own factual research, asking questions, surrounding yourself with a community, trusting your gut, and using your diagnosis to educate others.
By learning how to speak up with celiac disease for yourself, you will in turn advocate for others with celiac disease, and continue to spread the word about what it truly means to be gluten-free.
What other strategies for speaking up would you add to this list?
How do YOU speak up with celiac disease?
Leave your suggestions in the comments below!
Rachel Glauser says
I've been following your post for the celiac awarenesss. I've had celiac for 15 years, am a nurse educator at a health plan in Utah full time and my little girl was diagnosed 2 years ago with celiac. I've been helping people initially go gluten free, but wanted to do more on a platform such as IG/FB like you and celiacdietitian. Since I work full time, have two kids and a hubby it comes last on spreading the word/building something. I however am really wanting to get involved and advocate for myself and my little, creates a little bit more stress when it's not just me. My husband eats Keto and we meal plan using emeals, but I want to be more confident in going places and taking my daughter places. I'd love to learn more.
Jennifer Fitzpatrick says
Hi Rachel, thanks for your comment! I'm a little unclear on what you are looking for - do you want to setup a free call to chat further? -Jen
Hi how are you,
I was diagnosed with celiac over a year ago.Everythjng changed .My eating habits,restaurants etc.I am from Canada and wAnt to go back to Florida with my hubby and visit friends and to dip in the saltwater fir my psoriasis which has gotten bad.I am already starting to look at some gluten free restaurants for over there or just simply cook my own food.
Jennifer Fitzpatrick says
Hi Josie, thanks for your comment, I'm sorry you've been struggling! I can definitely help you with this. Please send me an email [email protected] so we can chat further. Take care!