7 Unexpected Lessons I’ve Learned from Living with Celiac Disease

Posted on: Sep 23, 2019

Categories: Celiac Disease

Living with celiac disease has taught me more about life, gratitude and the power of food than anything else, and now, I’m passing those lessons on to you.

When I was sixteen years old, I had been hospitalized over 30 times in my life for the same mysterious reason. I was anemic, having seizures, and always sick, but no doctor knew why.

I was hospitalized for the last time when a doctor told me he wasn’t going to discharge me until he figured out what was going on

After running some tests, he told me this: I could either stop eating all bread, pasta, cake, pancakes—anything with any trace of gluten in it—or I could keep having seizures and winding up in the hospital every few months.

While everyone knows about it now, he diagnosed me with something I had never heard of at the time: celiac disease. While living with celiac disease means that I can never have beer or waffles, my condition has taught me so much. Here are a few things I’ve learned along the way.

1. Writing toxic things out of your life makes your life better.

To me, celiac disease represents a choice that I was given, to make one change—to stop eating wheat and gluten—that had a huge impact on my life. Do you know how long I was sad about not being able to eat gluten anymore? Maybe one day. 

To be free from pain, hospital visits and painful tests was so worth not getting to eat waffles anymore. 

Is there something negative in your life that’s having a huge effect on you? What if you gave it up, quit it, or stopped doing or saying it? How would that affect your life?

2. What you put into your body has a direct effect on what you have to give. 

People usually frame eating well as a means to the end of looking good. But let me tell you—looking good is nothing compared to feeling good. If you’re feeling anything less than fantastic, try changing your diet. You may find that foods that you eat all the time—like gluten, dairy or sugar—were causing you to feel sluggish or sick.

When you feel great, you have so much more to give to your work, your spouse or your kids. You’ll be a better friend and a better coworker if you fuel your body with foods that give you the energy to use all of your gifts.

3. Just because something is gluten-free does not mean that it’s glutton-free.

There’s an idea floating around that if something is gluten-free, it’s healthy. The truth is that wheat does affect some people negatively and that for people with celiac or gluten sensitivities, staying away is a healthy choice. But for the rest of you, it doesn’t necessarily make a difference. Gluten-free pizza for a non-gluten sensitive person isn’t any healthier than pizza with a wheat crust.

Trust me, I enjoy gluten-free bundt cakes as much as the next person, but I’m not under the illusion that just because they’re gluten-free that they’re good for me.

4. Conditions don’t control us—we control them.

Early on, I realized that I could let every meal I ate and every dinner-table conversation be defined by my disease, or I could take quiet control of celiac and never let it define me. In order to stay happy and healthy, I look at menus carefully and always tell the server immediately about my gluten intolerance. Then I sit back and enjoy my meal.

This is so much easier said than done: I know people in their forties who still struggle to take ownership of their allergies. But I also know 13-year-olds who have complete control and ownership over their allergy. Because these kids may have had three near-death experiences and carry an EpiPen with them at all times, they know how to have a serious conversation with an adult and walk out of a restaurant if they don’t feel safe—without any prompting. 

Whether your “pre-existing condition” is a severe food allergy, a struggle with addiction, or a painful past, you can take control. You can let that thing be in every line you write of your life script, or you can leave it backstage and let it propel your story forward. 

5. Healing begins with a diagnosis.

Every time I went back to the emergency room because of seizures and anemia, I had a new doctor. That means that each physician started my case from square one, and it took 16 years for me to be accurately diagnosed. Because I was so anemic, many doctors were concerned that I had a life-threatening illness. Even though I didn’t, getting the correct diagnosis was the best thing that ever happened to me. 

No matter how scary it feels to schedule a doctor’s appointment and get tested, never avoid getting the right diagnosis. It’s the first step of healing. If you find a lump in your breast, have someone look at it immediately. If you have an abnormality on your skin, go to a dermatologist. If what you have is normal or benign, going to a doctor will give you peace of mind. And if what you have is more serious, you’ll be so glad that you caught it early. 

6. Food allergies are no joke.

I’ve had the privilege of speaking for The Food Allergy and Anaphylaxis Connection Team (FAACT), and it’s introduced me to some heroic young people and the dangers they face every day.

Remember the 13-year-olds I mentioned who have had near-death experiences three times due to anaphylaxis? Many of these aren’t due to their directly eating a food that they’re allergic to—they’re due to cross-contact.

If there’s a fryer that’s frying gluten-free french fries that’s also frying chicken nuggets, those french fries will have wheat flour on them—and that will make someone with celiac disease sick. In more extreme cases, even inhaling air with peanut butter in it can send some people into anaphylactic shock. 

To learn more about this, check out my friend Keith Norman’s new book, Allergen Awareness: A Chef’s Perspective. He is a world-class chef who has dedicated his career to making food that is safe for people with all types of allergies to consume.

7. Every person on the planet, every day, gets a one-day free pass from the hospital.

In the midst of my childhood hospital stays, I remember praying and telling God if he stopped the headaches and spinal taps, I would never waste my life.  People often ask me where I get my positive attitude from—and really, it’s from the pain I experienced before my celiac disease was diagnosed. 

I feel incredibly blessed that my condition was so easily curable. In the hospital bed next to mine, there was a 13-year-old boy who had been diagnosed with terminal cancer. So far, I’ve gotten 40 more years of life than he did—and how are they different because of that experience?

My experience in the hospital taught me that if all of your body parts work and nothing is in excruciating pain, you’re experiencing a miracle. Every morning that I wake up in my own bed, I’m grateful. Why? Because I know that I’ve been given another one-day free pass from the hospital. If you’re reading this from your desk at work, from your couch at home or from a seat on the subway, you’re carrying your free pass, too. Are you making the most of it? The day will come that your pass is taken away, and you will be in the hospital dealing with a diagnosis. It could be in 30 minutes or in 30 years. Your condition could take 6 days to get over, or it could take the rest of your life. I don’t know what the future holds, and neither do you. 

Every day you get to be alive and healthy is a privilege. I don’t say that because I’m an inspirational speaker and author: I say it from experience. Celiac disease made me understand pain and suffering, but it also gave me the gift of being grateful every single day. Now, I give that gift to you: Are you living every day with thankfulness? Are you working toward your dreams?

It’s time to wake up to your life and get after grateful.

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