I’ve Been Diagnosed with Celiac Disease. Now What?

Posted on: Sep 26, 2019

Categories: Celiac Disease

So: You just got diagnosed with celiac disease, and your head is spinning. What about pizza? What about sharing a birthday cake with your family? And what about beer?

I know that the foods you have to give up feel like major losses and like your new diet will change your lifestyle more than you want it to.

But at the end of the day, you have two choices: You can let celiac disease define you and every meal you eat for the rest of your life; or, you can take control of it. 

Here are the steps to taking control of your diagnosis.

1. Get excited.

I know this sounds crazy, but I firmly believe that this diagnosis will be the best thing that has ever happened to you.

If you’re anything like I was before my diagnosis at age 16, you’ve been battling anemia, crippling stomach pain, nausea and stunted growth for years. If your symptoms looked different than this, I know that you were still living every day of your life feeling less than 100%. 

Just weeks after I started a gluten-free diet following my diagnosis, I started feeling like a totally new person. Unlike many diseases, almost all of the symptoms of celiac disease can disappear as soon as you start your new diet—which is amazing. 

While a gluten-free diet can be overwhelming, for me, the trade-off between gluten and having a life outside of the hospital was a no brainer.

Be excited because you not only have an answer for why you’ve been feeling sick and weak all the time, you also have the control to change your diet and feel like a new person.

2. Be grateful. 

Now is the best time in history to eat gluten-free. When I was first diagnosed with celiac disease, I ordered hamburgers without the bun from McDonald’s. You could imagine my surprise when the manager had to come out to approve this request! Now, I can walk into any restaurant, ask for gluten-free options and be met with familiarity and understanding. I’m sure this will continue as awareness around celiac disease and other forms of gluten sensitivities grow.

3. Make friends with your server.

There’s also a downside to the volume of people who are choosing to eat gluten-free whether or not they have celiac disease: Some waiters and chefs won’t know the difference between the severity of your celiac disease and the person who is avoiding gluten for a suspected sensitivity.

That’s why you have to tell every server at every restaurant you go to about what you mean when you say “gluten-free.”

4. Be vigilant.

Make sure you continue to look at the ingredients of the foods that you are ordering, even if it says gluten-free.

With all the many choices that really are delicious these days, I wanted to give you my top three gluten-free go-to’s. 

  1. Gluten-free soy sauce – Enjoy that sushi even more! Make sure to get the California Roll without fake crab. I usually substitute shrimp instead.
  2. Costco’s gluten-free pizza – Makes my mouth water just thinking about it!
  3. PF Chang’s Chang’s Spicy Chicken – They have a whole gluten-free menu here!

5. Lean on your team.

Managing a food allergy or intolerance is a group effort. Make sure that your closest family and friends know what you can’t eat (and the levels of cross-contact that you need to avoid) so that they can speak up if you forget.

And yes: All of my kids could order for me. In fact, they could probably do a better job keeping track of gluten cross-contact than me!

6. Don’t settle for less.

If you don’t feel safe or respected for your celiac disease at a restaurant, you have permission to leave.

When our family went to Disney, at every restaurant as soon as they knew I had celiac disease, the chef came to our table to talk to me and ensure he understood exactly what I needed (and what I couldn’t eat.) If the restaurant was a buffet, the chef said “Come with me. I’ll show you what’s safe for you to eat.”

This is the gold standard, but I believe it shouldn’t just be Disney who does this: Every single restaurant should be this intentional if they want to keep their customers safe. 

When I speak at conferences to people with severe reactions, I empower them to say to their waiter “When you walked up to our table, you set a bottle of poison in front of me. If you listen to what I have to say and communicate it to your chef, you take the poison away. If you don’t, I could lose my life.”

7. Find community.

Find events like the National Celiac Association Conference or Food Allergies and Anaphylactic Connection Team where you can be encouraged and empowered by people who are going through the exact same thing as you. 

Having support and knowing that you are not alone will make a world of difference as you navigate your new diet.

8. Know that you are more than your disease. 

When I found out that I had celiac disease, I had to make a choice. I could make my disease the topic of conversation at every single meal for the rest of my life and constantly battle with my restricted diet, or I could live optimistically, viewing it as a chance to live healthily.

While you’ll absolutely have to have your food restrictions on your mind at every meal—and talk about them with your waiter—you are more than your diagnosis, and you don’t have to talk about it unless you want to.