The start of my journey: Celiac Disease

Thank you for all of your encouragement yesterday! This is Part Two of my story. If you are just starting to read, go back and start with Part One.

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I remember so clearly the day my doctor called me with the diagnosis.

“I’m kind of glad I only have to tell you that you have celiac disease,” he said. “All you have to do is stop eating gluten, and you will be fine.”

I agreed with him.

What a relief.

No cancer. No medication. Nothing terrible.

Just stop eating gluten.

**

This was June 2016. For a month before that, I had suffered severe digestive issues. I was anemic, and I had been plagued with constant diarrhea.

Although I now recognize that my symptoms had been building for several years, I crashed in late May. I had gotten to a point of being so exhausted that outside of going to work or taking care of what absolutely had to be done, I would lay on the couch and do nothing. It was the beginning of summer, my favorite time of year. I’m normally very energetic and active during the warm weather months, but I struggled to get to my son’s baseball games or do much more than sit outside in a lawn chair.

I love riding my bike, but only took it out of the garage a few times the entire summer. I regularly go for three-mile walks, but during this stage, I barely had enough energy to walk around the block.

The worst part was the lethargy. I’m normally a morning person. During that month, I would wake up and barely have the will to get up. I didn’t care about anything. I have a husband, four kids, a job, a house to clean and lots of other interests. But on my worst days, I would have to work hard to give myself the inner pep talk necessary to convince myself I needed to get up so I could go to work or take care of my family or clean up the kitchen.

I didn’t care about the things that used to bring me joy. I stopped noticing beautiful sunsets. It was too much work to find my camera. I felt like I was walking around in a fog.

People often told me I didn’t look sick or seem sick. I would focus all of my energy on whatever I needed to accomplish that day. I would plaster on a smile to do the things I needed to do. What people didn’t see is what happened when I got home. I would crash on the couch or go to bed at 7 p.m. I would sleep for 10 hours and still wake up feeling tired.

I felt a sense of exhaustion that is hard to describe. It was like trying to walk around with a 50-pound weight on my back. It felt too heavy. It was too hard.

**

Most people think of celiac disease as primarily a condition that affects your digestive system. It’s an autoimmune condition, meaning that when gluten is present, your immune system begins attacking your body. Over time, it destroys the small intestine. As it gets worse, your body isn’t able to absorb nutrients, so you are basically malnourished.

It also affects many other areas of your body. When my body is exposed to gluten, I have many symptoms that are neurological, like brain fog, poor concentration and vertigo. My physical symptoms include joint pain and swelling. And then there’s the lethargy, exhaustion and lack of energy.

So… just stop eating gluten and everything will be fine.

**

As soon as all of my tests were done to confirm I had celiac disease, I immediately stopped eating gluten and didn’t turn back for one second. I didn’t cheat. I read every label. I downloaded an app on my phone that allowed me to scan labels in the grocery store, alerting me if items contained gluten.

I immediately started feeling better, and I thought everything would be great! But after only a few weeks, I had my first “flare.” It seemed that as my body became free of gluten, the more highly sensitive I became. A bread crumb or trace of flour would set me off.

I realized I needed to get a separate toaster for our home. We became more cautious of thoroughly cleaning anything that came into contact with food containing gluten. I learned hard lessons doing things that used to be a joy. For example, I remember making a birthday cake for my daughter and I got some batter on my hand. I instinctively licked my finger, contaminating myself with gluten.

At the slightest trace of gluten in my body, all of my symptoms would return. The digestive issues. The brain fog and lethargy. The exhaustion. It would all come back with a vengeance, sometimes lasting several weeks.

Eating food from restaurants was (and is) the worst. I have learned to ask how food is prepared and to insist workers change their gloves before preparing my food. Just because an item says it’s “gluten free” doesn’t mean it is free of gluten. It could have been prepared in the same kitchen right next to another food containing gluten. It doesn’t mean the restaurant worker washed his or her hands after touching a loaf of bread.

**

“I’m kind of glad I only have to tell you that you have celiac disease,” my doctor said. “All you have to do is stop eating gluten, and you will be fine.”

Easier said than done.

 

**

Read the whole series:

Part One: A new view of food

Part Two: The start of my journey

Part Three: Malnourished in America

Part Four: Solving the gluten free puzzle

Thanks so much for reading. Please feel free to leave me a comment below or enter your e-mail address in the box to the right to get my latest post in your e-mail inbox.

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