You just got diagnosed with celiac disease… now what?
Step 1: Scream, cry, do everything you need to do to get all the intense emotions out
Let yourself feel them and GRIEVE. Celiac is a HUGE life change and I promise you, diagnosis day is the worst part. There is a community out there waiting to support you and help you thrive living with celiac. Not to mention all of the AMAZING gluten-free food all over the world. However, that doesn’t mean you can’t grieve for as long as you need to. This is something I posted about on my instagram page awhile back and it resonated with so many of you. It’s something that is rarely talked about, but needs to be normalized.
Step 2: Do NOT Google anything about celiac disease
This will take you down a rabbit hole of both factual information but mostly to a plethora of misinformation about celiac and following a gluten-free diet. Do not feel like you need to read and learn everything about celiac disease right now you have time to learn. Heck, even I still learn things and I’ve had celiac for almost 15 years and am a dietitian. Science and nutrition is always evolving and there will always be new things to learn. I have compiled a list of resources listed here throughout this post to help you find the factual information you need over time. Additional resources outside of my Substack I like to recommend are The Celiac Disease Foundation, Beyond Celiac and the National Celiac Association.
Step 3: Figure out what you are going to eat for the rest of the day and the next few days
This means starting a 100% celiac safe gluten-free diet. A celiac safe diet means you are following a 100% gluten-free diet in addition to avoiding any food that has touched gluten or has been prepared on the same surfaces as gluten. This is called cross-contact. You can read more about cross-contact here. Here are some posts to help you get started with a celiac-safe, gluten-free diet.
Now that you’ve made it through your first day or week with celiac, there are a few other things you need to do. You might also be wondering how this might affect your daily life. Well, that’s a tricky one to answer because it will affect it in many ways and this will look different for everyone.
Step 4: Build your celiac dream team
This part is so so important. This should include your primary care physician, gastroenterologist, registered dietitian who specializes in celiac and a mental health professional. If you don’t have established care with any of these providers get started now. Having established care with each of these providers is essential for managing celiac, a lifelong autoimmune disease. I would recommend setting up initial appointments with a celiac dietitian and therapist if you don’t already have one. Additionally, schedule your 3-6 month follow up with your doctor.
Step 5: Find a community to support you!
Share your journey with friends and family and let them know how they can support you. Celiac disease is a lifelong disease and everyone deserves support.
You can find me on instagram @celiacdiseasedietitian
Contact me for a 1:1 nutrition appointment here
