Does Anyone have a GI Tract for Sale? This Celiac Disease stuff is getting old…

To my esteemed readers: This is a “Gross Post”. Don’t read it if you’re squeamish about bodily functions.

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Celiac is a progressive disease. Over time, the more gluten you eat, the more damage you do to your small intestine.

In grade school, I  had little to no symptoms that I can remember. In high school, my general resilience and lack of self-awareness explained away any bowel problems I had. In college and early adulthood, I always had a “loose gut.” I attributed this to the copious amounts of alcohol and tobacco I used.

And then, two years ago I had a really rare form of eye cancer. And after I lived through that, my gut was utterly destroyed. I attributed it to chemo fallout. But it didn’t get better. So last year I got tested for Celiac Disease (As well as 5,439 other things) and realized that I’d been slowly killing my gut for the last 20 odd years.

So here I am now, a year and change in. And I’m frustrated as all hell with my body.

I am scared because of stomach cramps bowling me over in so much pain I have to just lay on the couch and hope they go away.

I am tired because of the marathon of miles I’ve sprinted to the nearest bathroom, in fear that I won’t be able to hold it, and will have a diarrhea explosion in the middle of <insert nearest store with a bathroom here>.

I am terrified when I have a bowel movement and the toilet bowl is streaked with bright red blood from the sores that develop after constant, toxic, diarrhea.

I am financially stressed because of the numbers of times I’ve had to leave work because my gut and I are in too big of a fight to be appropriate when sitting at a desk – or catering a wedding.

I am hesitant to dine out and do… normal person... things that involve eating food because of the very real possibility that my food could be cross-contaminated.

I am anxious and a nervous wreck whenever I eat food I haven’t prepared myself.

I’m self conscious because I’ve been gaining weight ever since I stopped eating gluten, because my body is getting better at actually digesting food.

I. Am. So. Exhausted.

I fake being calm and confident. I fake wellness and I hide myself behind a veil of happy smiles. I do it because, well, its gross. People don’t want to chat about the fact that I ate three damn potato chips covered in barley malt on accident and I was couch-ridden and plagued with vomit and diarrhea for 3 days; during which time I lost 8 hours of work, had to have my mother watch the Monster, and had to cancel a classical music date with Ashley Face.

Heck. Most days, even I don’t want to talk about it. Or think about it. Its depressing because, well, its chronic and sometimes there doesn’t seem to be any sense of reason to it, unlike when I had cancer. There was a very real possibility that I could have died from that. There was a very real chance that my eye would have to be removed. The surgery sucked. The chemo sucked. But I knew my odds – I knew the outcomes – and I knew that I would either recover – or not.

But this Celiac stuff. It’s really got me on a roller coaster. Due to lack of knowledge and symptoms, I spent 27 years destroying my gut with wheat products of all types; not to mention all my bad habits in my youth as well as the aforementioned chemo’s effects. And I can’t just “get better”.  It’s a silent disease and it feels like it is crippling me.

It impacts my work, my marriage, my parenting, my social life, my health, my athletic life, even my sleeping habits. It turns something as fun and exciting as travelling on vacation into a royally worrisome source of anxiety and fear.

And, its only manageable with knowledge. Knowledge of hidden gluten, of food labeling practices. I’m now caught in the grip of analytics – determining the real science from pseudo, figuring out what foods contain hidden gluten, even joining online support groups and seeking community.  I seek community because I want to talk to people that can empathize with me.

But ultimately, I often just crave rest and health. I crave an enriched life where this disease doesn’t control me. A life where my condition is manageable and not so damn scary. So, if I seem distant or grouchy when you see me next, trust me. It’s certainly not you, and it’s not me. Or, well, its not the upper half of me.

Keep Smiling.
Thanks for reading,

-DaddyLevi

 

 

 

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