My Celiac Story

My celiac story actually starts before my diagnosis. I remember a time when I thought that having celiac disease would be the worst thing that could happen to me. Seriously… I had a friend diagnosed with celiac. I remember going to dinner with her and thinking, “Yea, I could never do that.”

At least I had the good sense not to say it out loud.

One year later I was in my doctor’s office requesting to be tested for celiac disease.

This is the story of how I got my diagnosis and how I took control of my life after falling apart.

Asking for What I Needed

I was in my first year as a teacher. Honestly, I thought everyone was sick all of the time.

It was sort of a frog in boiling water scenario. I got worse so slowly that I didn’t realize how bad it was until it was, quite honestly, destroying me.

After a year, I found a doctor. I had lost a lot of weight very quickly and was tested for diabetes. Signs didn’t point toward diabetes but this was the answer I was given anyway.

So, I dutifully tried to count my carbs. I would do anything to avoid going on insulin or feeling poorly for the rest of my life. I even quit a summer job I loved on a doctor’s recommendation.

I sobbed and hated my body for taking away things I loved.

This went on for a year. A full year y’all! I know many people who suffer so much longer.

I was lucky because of a very special friend.

Thank Goodness for Friends

My best friend from college was in medical school while I was really sick.

She came to my house for dinner and a medical school vacation one night. While she was over we made a beautiful pasta, bread, and salad dinner.

My entire abdomen broke out in hives. That was a first.

I panicked, cried ugly tears, and told her everything that had been going on:

• I’d lost weight and could pull my pants off when they were buttoned.
• My hair was falling out
• My teeth were turning yellow
• I couldn’t get out of bed some mornings (and I’m typically someone who pops out of bed early).
• I was getting sick easily
• My stomach was a mess
• I had migraines that I’d never had before
• Sometimes it just felt like my brain wasn’t working
• One time my vision went black in the middle of the classroom while I was teaching! Just faded to black while I was in front of 25 students. It was terrifying for all of us.
• I mostly just felt like my body was fighting against me living my life.

She reassured me that it wasn’t in my head and it wasn’t normal. I was starting to feel crazy so I remember really appreciating her for bringing me back to reality.

A few months later, she asked me to call her. I’ll never forget what she said when I picked up.

“I read a case study and I think it’s you. You aren’t going to like it but I need you to try not eating gluten.”

At that point, I was willing to try anything.

So, I did.

A few days later my husband said, ” Don’t take this the wrong way but you’re a lot nicer than you were a week ago.”

Wow. I had no idea.

Making it Official.

I went to my doctor and asked that they test me for celiac. I knew they wouldn’t offer it up. Luckily, even after being off of gluten for a few days I still showed signs of celiac. I hadn’t realized I would have to go back to eating it again if I didn’t.

Like most people, the only information I was given was “Don’t eat gluten.”

Nothing about cross-contamination or how isolating it can be.

Nothing about what to do when my family thought I was faking it.

There is so much more to it than “don’t eat gluten.”

After my Diagnosis

After I was officially diagnosed with celiac disease I went straight into denial. I convinced myself I was probably just intolerant. It only took one cross-contaminated chip for me to let that dream die. My husband shook his head slowly as I descended into brain fog.

After denial, I set out to learn everything I could learn. I got grocery guides, modified recipes, and found key things I knew I could eat. I needed it to be manageable.

I struggled to find things to eat and ate the same thing every day most days. I eventually found a rhythm through meal planning and Google searches.

There weren’t courses and social media wasn’t as connective as it is now. It was a lot of trial and error…and fear.

My Triggering Event

I was 21 when the triggering event(s) happened.

I graduated from college, got married, bought a house, and got a new job. It was a stressful time.

I was also getting married on my grandma’s 80th birthday. She lost her battle with cancer the day before my wedding and her birthday. It was devastating.

Then, after battling our resort and rescheduling our honeymoon, I got a kidney infection when we got home.

I’m not sure if it was one of the events or a combination. It was a wonderful month of transitions and starting my marriage and a tragic one all the same time. The physical and emotional stress was clearly too much for my body.

In Hindsight

I remember days when my stomach would be a mess. Typically this was in high school after I’d had pasta and garlic bread. I convinced myself it was the garlic.

I thought the sugar in my coffee was a problem and not the muffin that went with it.

I assumed everyone had days when their body wanted to destroy them.

Turns out, it was just me. I wish I’d known to ask about it sooner.

10 Years Later

I was 24 when I was diagnosed with celiac and 27 when I figured out some other food allergies.

If you’d told 24-year-old me that I’d be managing my life, diet, and dreams at 34 she never would’ve believed it. It felt hopeless and hard for so long.

Travel has been my dream since high school. Now, I’ve been all over the world:

• I’ve camped in the bush in Botswana
• Walked on the Great Wall of China
• Climbed on the granite in Yosemite
• I’ve visited Machu Picchu and so much more.
• I’ve learned that Paris and Rome are two of my favorite cities.

5 Things That Helped Me

I feel so empowered after taking control of my life but I remember what it felt like to be out of control.

If you’re feeling out of control or like you’re life is being held hostage by your diagnosis. It doesn’t have to be that way.

These 5 things helped me.

1- Find a Good Doctor

Luckily, that same celiac friend from earlier in the story pointed me to her GI doctor. Having a good doctor made everything easier! I got cocky after a couple of years and stopped going. That was dumb. I started feeling sick again and went back to see her.

I’m so blessed that she listened and didn’t let me think it was all in my head. She didn’t accuse me of eating gluten or not being safe. She tested and questioned and worked with me until we figured it out. Turns out I have 3 other food allergies that didn’t exist before celiac.

Bless her for the grace she showed when I cried in her office because I was so frustrated with my body.

Now, I faithfully go see her every year. She keeps me informed and makes sure I understand my blood work. She advises me on travel and reassures me that I’m doing well.

For years it felt like I’d find a new normal and my body would find a new way to knock me down. Luckily, I have a great doctor.

2- Learn as much as you can.

Finding a great doctor is only the first step. Learning as much as you can so you can take care of yourself is important. And there is so much to learn!

• Start by understanding the foods you can and can’t eat. Learn about cross-contamination. Know the ingredients you should check for and how to read a label. Look for a course if you need to.

• Learn how to ask for what you need. This was the hardest part for me. I hated making other people feel uncomfortable. To this day I hate sending food back and I hate when I have to explain what I can and can’t eat. Remember that you deserve to take care of yourself. But, it’s okay if it’s hard. Find a therapist to help you work through it if it’s a struggle for you.

• Learn to listen to your body. It will tell you when you’ve done too much or when you’re eating the wrong things. One of the biggest things for me was when I started to listen to my body instead of fighting it.

Being your own expert on your diagnosis and your body will make life feel in control. It’s frustrating that you always have to think about celiac and watch what you eat but it’s better than being sick!

3- Start small

I have never been known for patience. When I want to start something I’m already thinking about the end. Celiac wasn’t any different for me. I wanted all of the changes all at once. I just wanted it to be easy.

That wasn’t possible. It’s a slow process.

Set small goals and make progress as you change your life to accommodate your diagnosis.

The same is true for travel with celiac. I hated thinking I’d have to let my travel dreams go. I was determined to learn how to travel. Start with trips to celiac-friendly cities in the US and then celiac-friendly countries.

4- Give yourself grace

You’ll mess up and things won’t always go as planned. Give yourself grace when you do mess up.

I recently forgot snacks one day on a trip. I got myself into a situation where I was hungry with no backups. I was anxious and angry at myself.

It happens. We aren’t perfect. Do what you can to take care of yourself and move on. You’ll never be perfect and that’s okay.

5- Find a tribe

People will be unkind and most people won’t understand. It can be frustrating and hurtful. It’s especially bad if your family doesn’t understand.

A friend asked me to meet her for lunch a few months ago. She checked with me to see if I was interested in the restaurant and then called the restaurant to ask a million questions about if they could really take care of me. Find friends who not only accept your diagnosis but make sure you’re taken care of.

Find yourself a tribe of friends who stick up for you when you don’t want to stick up for yourself. My friends will ask more questions at a restaurant than me. They threaten yelp reviews when calling to see if a restaurant can take care of me. They call out restaurant staff if they’re unkind to me. They save food labels and give me play-by-play recaps of what they did to make sure I can eat what they’ve made. They don’t take it personally if I can’t.

If I reflect on it too much I get tears in my eyes. I’m so lucky to have friends and family who want me to feel included and valued and I never feel like a burden to them. I hope you find the same.

My celiac story isn’t over

I’m still learning and growing in my life as a celiac. I think I always will be. There are always new challenges as you grow.

If you need help navigating celiac life or planning a trip please reach out. I’d love to help you! If you just want to send an email to someone who gets it, I’m here for you!