What to Say When Diagnosed With Celiac Disease

What to Say When Diagnosed With Celiac Disease

To my newly diagnosed friend,

I have been thinking lately about going back in time. If only we could, right? Specifically, I have been thinking about the things I would have done differently after being diagnosed with Celiac Disease. 

If I could go back in time and talk to my newly diagnosed self, here are some things I think I would say:


Cry all the tears; it sucks. Let it all out, then come to terms that this is your life now, and it’s up to YOU to make it the best you possibly can.


Take it all away, so you don’t waste energy on foods you can’t eat. Over time you will become stronger, and you will be okay watching others eat things you can’t, but for now, remove it.


Explain the ins and outs of your newly diagnosed disease and how food will affect your body for the rest of your life. (I wish I would have done this one)


If you spend a lot of time with your extended family, doing this will make family gatherings less uncomfortable for you and them. Explain that the comment “A little bit can’t hurt” or the comment try it and see how you feel” hurts you emotionally and physically because you do want to eat it and join in but can’t. Explain that celiac disease isn’t an allergy, trend, or a choice; it’s an autoimmune disease. And explain how it affects your body.


Do not just assume because it looks like it doesn’t contain gluten that it’s safe to eat. Not reading labels was one of my biggest mistakes for at least the first six months after being diagnosed, which leads me to my next one.


Especially at restaurants. Just because it should be “gluten-free” doesn’t mean it is it probably isn’t. Do you know that I ate French fries for the first year that were cross-contaminated, cooked in the same oil as the fried foods!


Since day one, my husband has been phenomenal, but he didn’t “really” start speaking up for me until I got sick at a restaurant from cross-contamination. It is always uncomfortable to ask the waiter/waitress all the questions you have to. Just make sure you ask the right questions to protect yourself. When your spouse or loved one does it for you, it is so liberating and makes going out less overwhelming.


This diagnosis isn’t your fault. I am still learning this one. The new reality is going out to eat with friends or to someone’s home is HARD. I still struggle with feelings of guilt when loved ones take the time to care about me and are okay with eating at a particular place so I can eat as well. I have learned that the ones that care about you won’t even hesitate to make sure you are comfortable. So, stop apologizing to all the other ones and stick with those that make your disease more comfortable to live with. 


Food is involved in every single thing we do. You will have special events and different occasions where you won’t be able to eat a single thing. It is always a good idea to keep a favorite bar in your purse. Be okay with leaving the event to grab yourself some food if you need to. Don’t do what I do and go hungry.

Give yourself credit for being strong every day and celebrate the little things. Adapting to your new lifestyle will get easier over time. Life is better when you are healthy. Lastly, you are amazing and I love you!


Janae Cox

Back to blog