Living with Celiac Disease: What it’s like

I spent most of my morning waiting.

It was our first day back into a routine after 17 days of Christmas break, and I had a long mental list of things I needed to do. But I couldn’t move.

I couldn’t get out of bed to tell my older kids good-bye as they rushed off to school. Thankfully, the youngest had a sore throat so I could call the school and them know she was sick without getting up myself.

I knew all I could do was wait.

My lower back was in extreme pain. My head was throbbing. My brain was foggy. And I was overcome by such a weight of exhaustion that I couldn’t think about standing up.

I laid there wrestling my range of emotions. Anger. Frustration. Worry. Anger again.

This is what my life looks like the morning after I’ve been exposed to gluten. I’m not talking about eating a piece of bread or enjoying pizza or cheating with a cookie. I’m talking about accidentally ingesting a tiny, imperceptible, invisible trace of gluten.
I decided to write about it because: 1.) I think most of the time my life looks like all I do is dance from one creative endeavor to the next without a care in the world, 2.) I’m not going to post this on Facebook, which means about three people will ever read it, 3.) I just need to let it out.

The gluten hit my system surprisingly fast. I’ve only had a few incidents like this one during the past year. But it’s scary to me how much harder it hits me each time.

I was talking to a friend at a party when my head started feeling like it was going to explode. My stomach was starting to feel uneasy. And I suddenly felt very hot. My friend told me that my face was red.

It took me a minute to process what was going on. Even as careful as I am about asking questions and making sure food will be safe for me, could I still have gotten some gluten?

The illness was coming over me like a wave now, and I knew I had to get home before it hit my stomach and intestines. I knew what was coming. I knew I needed to be in my own home to handle this. And I knew once it hit, there was no way I would be able to drive home.

The first few hours are definitely the worst as my body goes into overdrive to try to eliminate everything in my system as quickly as possible. If you’ve ever had food poisoning, that’s the best comparison.

The thing that makes it worse is the feeling I’m going to explode. My digestive tract is burning hot from the acid reflux in my throat to the burning in my stomach to the flame in my intestines.

A few hours later, the intense pain in my lower back set in. That pain took me back to the first month when I discovered I had Celiac Disease. I lived with that pain on a constant basis. I couldn’t believe it was back. It feels like I should at least have had the joy of eating a piece of pizza first if I was going to be in THAT much pain!

Once all of the physical symptoms subsided, that’s when I started dealing with all of the mental and emotional junk.

• How will I live like this for the rest of my life?
• How can I live in a society that is covered in gluten?
• What will happen when I’m older and I have an attack like this one?
• How long will it take for me to return to normal?
• Should I tell anyone about this? I’m pretty sure everyone is tired of hearing about it so I should just endure it in isolation.
• What kind of mother am I that I can’t even get out of bed on my kids’ first day back at school?
• How much damage did this do to my system?

I have worked so hard to stick to my super strict diet the past year. I know that my intestines have been healing because I can eat more foods. I’ve even been exercising the past few weeks, which is a huge improvement. I’ve struggled so much with anemia the past few months that it had been hard to even go for a walk. Lately, I’ve been running on my treadmill. What will happen now?

I know that when my body encounters gluten, my immune system goes into overdrive, attacking my small intestine. I wonder how much damage it will do before the gluten is removed. How long will it take for those antibodies to settle down again?
Sometimes I wish I could have a “normal” disease. One that people could understand. One that I could take a pill for or get some kind of treatment. Maybe even one that is curable. I realize that’s just weird to want to trade in this disease for another one. Most of my thoughts are irrational at this point.

Finally, my system has been cleared out after a very painful 16 hours or so. I’m ready to carefully try to find something to eat to start to restore my energy.

I vow not to let this happen again. I try to convince myself it’s not my fault. Then, I tell myself how stupid I am that I took such a risk. Eating food at a party. Geez! How could you do such a thing?

I’m ready to re-enter the world as if this never happened.

I’m ready to start filling in this week’s to-do list.

I’m ready to do something other than wait.