What It’s Like to Be Diagnosed with Celiac Disease

What It’s Like to Be Diagnosed with Celiac Disease

Justin Hall had been working at Mikey’s for about a year when he started experiencing symptoms of celiac disease. Weeks later he tested positive. We asked him what it was like to make the switch to a 100 percent gluten-free diet while working for a gluten-free food company, and what advice he has for others dealing with celiac disease or a potential diagnosis.

How long ago were you diagnosed with celiac disease? How long did it take before you noticed a change in your symptoms after going gluten-free?

I was diagnosed seven months ago. It took two to three weeks after that until I started feeling better, and three months until I started feeling less tired and groggy all day.

What was it like to hear your diagnosis?

For me, celiac disease was a lot better than the alternative diagnoses the doctors threw out there. In some ways, there was a huge sense of relief to finally know what was wrong with me and to know that I can start to heal my body and ultimately recover.

I was also really surprised to find out how many people (myself included) try to self-diagnose or go undiagnosed because they are too scared of finding out what’s wrong.

Did your gluten-free diet impact the way your family eats? Do you make gluten-free meals for just yourself, or did the rest of your family go gluten-free when you did, at least at home?

At first I isolated myself and let my family continue to eat whatever they wanted and keep the cabinets, fridge and freezer mixed with gluten and non-gluten items. Then, slowly, we started to buy only gluten-free items for my daughters and me. Since I have celiac, my daughters are at greater risk of developing it too. Also, they don’t really need gluten. That doesn’t mean that we don’t keep some gluten snacks and sweets that the girls and my wife love around the house, but for the most part we try to keep everything gluten-free.

You were working at Mikey’s, a gluten-free brand, when you found out you had celiac. Did your diagnosis give you a different perspective on your work?

I am a firm believer that if you are able to put yourselves in the shoes of your consumer that you can provide them with better products, services and experiences. Now that I live every day with celiac and am a member of the gluten-free community, I believe the Mikey’s brand can only benefit.

Which Mikey’s products are in your regular meal rotation?

The Mikey’s Burrito-Size Tortillas are regularly stocked in my freezer for taco night. If I want an easy meal, I also keep a couple Buffalo Chicken and Pepperoni Pizza Pockets at the ready! My girls are fans of the Cheese Pizza Pockets, so we keep those in the freezer too.

What are your favorite online resources for people with celiac disease?

I tend to spend a lot of time on Facebook groups learning more about products and reading about what other people with celiac go through. Outside of that, I typically rely on Google to help me research any additional topics I want to learn about.

Do you have any advice for other people with celiac or who think they might have celiac? Or is there an especially useful tip you’ve learned for dealing with celiac disease?

You have to be your number one advocate. Having celiac disease and eating gluten-free is not a choice; it is a necessity for your health and wellbeing. If a restaurant server doesn’t know if something is gluten-free or not, make them check. If you can’t eat at a certain place because they don’t offer gluten-free options, then push for your friends and family to go somewhere else.

Mikey’s is proud to partner with the Celiac Disease Foundation to spread awareness about celiac disease, an autoimmune condition that affects 3 million people in the U.S.