When you have celiac disease, it often becomes necessary to educate others on it and your needs. So how do you educate others on celiac disease? And how do you do it if they are doubtful, resistant, unsupportive, or reserved?
In this post we’ll be covering how to confidently educate friends and family on your gluten-free needs. Including gathering reputable information, building a pitch/script, and more.
I’m sharing some of the top tips I’ve learned as a dietitian who’s had celiac for over 10 years, so grab a pen and paper and let’s get into how to effectively teach people about celiac.
Before we get into strategies to educate others on celiac, I want to acknowledge how hard it can be. And while it can be hard to share your celiac needs with others, it can be one of the most powerful things you do to keep yourself safe and improve your quality of life.
So I know it can feel overwhelming, burdensome, uncomfortable, scary, vulnerable, and maybe even not worth it…
But in reality, speaking up for yourself and celiac can strengthen your relationships, relieve overwhelm, support your mental health, help keep you safer and ultimately, get easier with time.
If you’re struggling with sharing about your celiac needs, you might ask yourself “what would I do if I were educating others for a friend or child in this same situation? And how can I do the same for myself?” This question can help you re-calibrate your approach to be more supportive and kinder.
When sharing information about celiac disease and your needs, it’s important that you are confident in what you share. Easier said then done, I know. However, here are my tips on getting more confident in your celiac knowledge…
First, confidence comes with time and reliable information. Meaning as you practice what you need to do to stay safe, the more confident you’ll feel in sharing that same information.
Additionally, the more reputable the sources you’re using for celiac safety, the more confident you’ll feel in applying and sharing the information. I say this because many people find that convincing family members to keep you safe is way easier when you can say your dietitian told you to, versus it’s something you read on the internet.
In my Celiac Crash Course, not only do I break all things celiac down into simple terms but I also give you lots of information, handouts, and videos to share with loved ones to help you educate them. Members have reported that this has made it easy to educate friends and family because they are getting this information from a healthcare provider. If you want this help, Check out the course here.
And if you just don’t have the confidence right now, it’s okay to share that. Let your friends and family know that you’re still learning and you appreciate them being flexible with you as you learn about what living with celiac now means for you.
One important step of educating people on celiac is making sure you’re well researched. Take some time to read reliable and up to date info about celiac disease.
Reliable sources of information include research articles (often free ones are available on pubmed), celiac specialized dietitians, and celiac focused associations. Please keep in mind that even the most reliable sources can be out of date due to the growing research we have on celiac, so if you’re unsure about anything, be sure to discuss it with your celiac specialized provider.
I also am sure to keep my Celiac Crash Course as up to date as possible, providing updates monthly, so that you’re getting as accurate information as possible. If you want to learn more about this self-paced course designed to help you make avoiding gluten cross-contact routine, click here.
While you’re reading, write down facts and information that resonate with you. Keep the information you gather in a safe place and use it as a starting place when building your celiac disease “pitch”.
Not only will doing your research help you develop your talking points for educating others, but it will help you stay confident and persuasive.
The next step to educating friends and family on celiac disease is be having a pitch or script ready to go. By pitch, I mean a quick speech if you will, that will educate others on celiac disease.
Developing a pitch will help you feel prepared and confident when educating others on celiac disease. I usually recommend people have a quick 10-second run-down on what celiac disease is and a 5-minute pitch.
Usually I use my 10-second pitch for people I don’t know well, and I share my 5-minute pitch with people who seem interested in learning more or who I know better.
My 5-minute pitch isn’t really 5 minutes long but it has information ready for a more in-depth conversation with people who really want to support me vs. strangers who are curious why I’m not eating.
Your pitch should include the most important things you personally want people to know about celiac. And you don’t have to follow your pitch exactly everytime you use it, but having it as a guide can make sure you’re not missing anything important.
When developing a pitch to educate people on celiac disease, you might want to come up with a list of things you wish people knew about celiac.
Start with brainstorming what you wish people knew and try to incorporate that into your pitch. For example, if you wish people knew that living gluten-free for celiac was not a choice, you might say “some people may choose to live gluten-free because they think it’s healthier, but due to my medical diagnosis, I have to live gluten-free in order to prevent damage to my small intestine”.
Your pitch is a great place to share this information but it doesn’t have to stop at your pitch. You can share this information to social media to spread awareness too.
When teaching people about celiac disease, don’t just stop at what you wish people knew. Also use that time to address common myths and doubts.
Start by making a list of the common myths and doubts people have and educate yourself on how to debunk them.
Ex. people are often confused about the difference between celiac disease and gluten intolerance. Or people might think that living gluten-free is a weight-loss diet. Use this time to educate on the facts so that everyone is on the same page and can really support you.
Another thing to keep in mind with educating others on celiac disease is that scripts can be helpful for the really uncomfortable conversations. Having a pre-set response for your least favorite questions and comments can reduce the stress of dealing with them.
I share a few in this blog post on enjoying the holdiays with celiac disease. But one of my favorite things to say if it’s a particularly rude or insensitive comment is “why would you say that to me?” or “what an interesting thing to say” and then change the subject.
I also give tons of scripts for a variety of different scenarios (including dining out, dinner invites, and more) in the Celiac Crash Course. It’s a self-paced dietitian-led course where I teach you the basics of celiac safety to help avoiding gluten and cross-contact feel routine while also teaching you the tips and tricks I’ve learned during the 10 years I’ve had celiac. Learn more about the course here.
Being confident, doing your own research, and building a pitch and scripts are only some of the ways you can educate friends and family on celiac disease. Another way includes teaching people the “BROWS” acronym. You can include this in a pitch or you can use it as a tool to help people learn where gluten hides.
“BROW” stands for the top gluten-containing ingredients to avoid (barley, rye, oats (sometimes), and wheat). While these gluten-containing grains can show up in a lot of different ways, this is a good starting place to help teach people the sources of gluten.
You could also send your loved one my FREE label-reading class to teach them how to read labels for you. Better yet, you could take the free class together and learn together.
Share reputable resources and posts to your social media to help educate people on celiac disease. These sources include celiac associations and other celiac dietitians.
While your own experience should be enough to be believed, often people really respond well to information provided by health care experts. By sharing reputable information, it helps create a more convincing environment to encourage friends and family to get on board with your new needs.
I share A LOT of shareable posts to spread awareness on my social media if you want my help! This can help prepare people to have deeper conversations with you or encourage people to do more research on their own.
Remember that biological relatives are at risk for celiac disease and it’s important to talk to them about it. Don’t be pushy, but let them know you’re worried and encourage them to be screened.
Let them know that screening for celiac disease usually requires a simple blood test to assess for celiac associated antibodies and can be done easily along with other annual bloodwork.
If you need more help with this, I also have more resources for this in the Celiac Crash Course.
Lastly, when teaching people about celiac disease, remember that it can take a while for information to stick. Just like it is taking a while for you to adjust to living with your gluten-free needs every single day…
It will take time for your friends and family to get used to your new needs. Be patient with them and remember, you can be patient and still maintain strong boundaries around your safety.
And at the end of the day, you can do all the education you want and sometimes friends and family will not understand. This says nothing about you and more about them. I’m holding space for these tough situations and I hope you’re able to focus on the loved ones who are supportive.
Educating people on celiac disease can be taxing, and the reward can be massive. It’s okay if you need to take time to learn how to keep yourself safe before teaching others about celiac.
And when you’re ready, starting the conversation around your new gluten-free needs will be one of the most powerful things you can do (aside from avoiding gluten and cross-contact) in keeping yourself safe and maintaining quality of life.
Remember friend, you deserve a seat at the table too.
And if you want more help with educating friends and family on celiac disease… and if you want help with making avoiding gluten and cross-contact feel routine…
This is exactly what I teach you how to do in the Celiac Crash Course. A self-paced course taught by me, a dietitian who’s had celiac for over 10 years, to help you simplify living gluten-free. Learn more about the course here.
What are your tips on educating others on celiac disease?