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Down With the Sickness

We’ve all heard the saying, “That’s about as fun as a colonoscopy.”

Actually, I don’t think I’ve ever heard anyone say it, but I’m going to start using it.

Truly, the actual procedure isn’t that bad, it’s the “preparation” and starvation before that makes a good person go bad.

Yesterday after my GI appointment and through some tears I managed to say, “Man, the shit is endless.” I wish I meant that all figuratively, but I’ll be speaking quite literally here as well. (*If diarrhea scares you, now is the time to stop reading. You’ve been warned.*)

In trial work, there’s a practice called “drawing the sting.” Basically, when your client has past warts (the norm for humanity and my practice) you bring it up before the other side can wage an attack. It’s a powerful strategy.

As I’m sitting here 24-hours into “prepping” for a camera down my throat and up my bottom, I feel the sudden urge to tell you about diarrhea. Why wait for the book, let’s get it out now!

I was diagnosed with lymphocytic colitis in June, 2017. The year in which my life was completely derailing and after almost one year of GI issues. I remember the day it hit quite well, because my life changed a lot after. I ignored it for a long time, because it was too easy to blame stress (just like that whole AE episode I blamed on burnout).

Colitis is the worst word in the English language. Honestly, I’d use vulgar words over it any day. Even if you don’t know what it means, it sounds gross. When you know what it means …

I didn’t have very good doctoring for it in 2017. An NP shrugged at me a lot and told me there wasn’t much to do for my condition outside of Pepto. I considered buying stock in Procter and Gamble because of my spending on the pink tablets I ingested daily.

Unfortunately for me, my Celiac disease was missed when I was diagnosed with colitis.

When I was doing my marathon doctoring at Mayo in 2018-19, I decided I needed better treatment. I was referred to GI and Dr. Quinn hardly got past my name when he asked if I had ever been tested for Celiac disease. At the time, I had barely even heard the name and didn’t know anyone who had it. (I knew some people who considered themselves gluten intolerant, but I never understood what they could and couldn’t eat.)

And sure enough, I had it. I don’t know how long I’ve harbored Celiac disease. My guess is as early as high school or birth. Or who knows, maybe my autoimmune nightmare all came on around 2017. I’ll never know. But after my diagnosis, we found out two people in my immediate family lines also have Celiac, including my oldest daughter. I had just found out I was pregnant with my AE-baby, and I found out my seven-year-old had Celiac disease. I think I cried for months. It was all a lot.

According to the Celiac Disease Foundation, 1 in 100 people worldwide have it and 2.5 million Americans are undiagnosed. And it is very dangerous not to know you have it. Like me. A GI tract on the fritz is bad. What is colitis? Diarrhea. There. I said it. If it’s under control, you can deal with it. If it’s not, your life can feel exhausting, sickly, and you may need steroids.

What is Celiac disease? An autoimmune disorder where when a person ingests gluten, her immune system responds by attacking her small intestine. What is gluten? Wheat, barley, and rye. Where is gluten found? In absolutely everything. You’d be shocked! How do you treat it? The only known way is a STRICT gluten free diet.

Untreated Celiac disease wrecks your small intestine and it’s immunocompromising.

My first upper endoscopy showed my small intestine looking like someone mowed over the villi, the place responsible for absorbing nutrients. I was Zinc deficient, Iron deficient, and superbly Calcium deficient. Basically, for a long time, what I ate wasn’t absorbed. Awesome. People now come to me when they want to eat gluten free for health benefits or when someone in their life has been diagnosed with Celiac disease. I took a nutrition crash course at Mayo and it was worth every penny, because it’s not the easiest diet to manage when you begin. And because I’m super obsessive, I’ve learned a lot.

Take out your noodles, bread, cookies, cereal, crackers. OK, easy enough. Now take out soups, soy sauce, seasonings, anything breaded, drinks, and obsessing over labels when something that’s off limits may be hidden in “natural flavoring.”

And good luck trying to eat out, especially if you live in North Dakota as I do where there aren’t GF restaurants, because the risk of cross-contamination is great (i.e. I could order something that says GF, but if it’s not handled properly, touches something else, is fried in oil that also fried items containing gluten, I will get sick). What does it mean for me to get sick? A nearly immediate response of pain and diarrhea. Since my diagnosis in March, 2019, a strict gluten free diet is my religion, including when I attend Catholic Mass. I do not take communion. I do not cheat, ever. But I’ve been accidentally exposed a few times, and it’s miserable. If you ask me on any given day, which part of my health depresses me the most, I’ll easily answer: Celiac disease. It changed my life enormously and in ways I deal with every time I eat, go somewhere, select food, travel, anything. And if it was just me, I’d suck it up, but for my daughter, it’s still heartbreaking to me.

I sobbed the entire plane ride home from Rochester, because even though I was in the thick of the AE-fight, the Celiac diagnosis felt like straw crumbling the camel’s back.

Yet the diagnosis was more of a game changer for my health than about anything. It almost immediately settled down my GI system. Outside of the daily obsession of: Do I dare eat this after I’ve studied the label and called the manufacturer? if I eat a perfect diet, my insides feel great. If anything tips that, my hormones, something that’s gluten free that still doesn’t agree with me, or God forbid an accidental ingestion, I feel awful, and it drains me in all senses.

Why do I share this today?

I’m delirious from not eating and staying close to the bathroom for over 24-hours. Check.

I consider it a PSA. Chances are one person reading this has problems with gas, bloating, diarrhea, weight loss, night sweats, and could ask their doctor for a simple blood test to see whether they have it and possibly change their life for the better. Check. Because I’m so proud of my daughter who at only seven-years-old learned how to mange her Celiac disease. She is an absolute champ, label reader, and rule follower. She owns this in a way that makes Sean and me beam. Check.

Because I’m trying to talk about diarrhea before the book comes out, because it’s embarrassing. Check.

My friend Chris was one of only two beta-readers of my book. I told him after, “I’d prefer to talk about seizures over diarrhea.” He replied, “Jackie, if you don’t talk about it, no one does.” He’s right. I know I’m not alone, it’s just not something that a person Tweets about. Check.

Because my GI doctor’s appointment yesterday really upset me. And the only way I can process my new life is to write about it and hope it impacts someone else for the better. (Hopeful) Check. Here’s to health and happiness, my friends. I hope your experience on the Oregon Trail of life isn’t one of lost oxen and dysentery. But if it is, know you’ve got a friend in me.

And thanks for loving me, even though you now know this about me.


“There is no turning back now You've woken up the demon in me

“Get up, come on get down with the sickness Get up, come on get down with the sickness Get up, come on get down with the sickness” ~ Down With the Sickness by Disturbed

*Just as I planned to publish this piece, we found out our 2-yo baby has Celiac disease. I was too devastated to talk about it for a while, but I rallied quicker than with the diagnosis of my oldest. Thus, my family is 3 for 5 with Celiac disease. I frequently pray for a cure for autoimmune illnesses.


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