The Road to Celiac

Thunder Road.

Road to Nowhere.

Roadhouse Blues.

Goodbye Yellow Brick Road.

All classic songs that bring back great memories when I hear them now.

The Road to Celiac? Yeah, not quite as special. But what a journey it’s been, both for me and for so many fellow celiacs I’ve heard from. Some of their stories, especially the ones about children, will make your heart sink and your jaw drop.

Did you know that the average time it takes to get a celiac diagnosis is 8-10 years? That’s 8-10 years walking around while your body is in full attack mode every time you eat gluten. That’s brutal.

Meanwhile, the longer you go undiagnosed, the greater the chance of a multitude of other health issues popping up. (Infertility, reduced bone density, neurological disorders, some cancers, and other autoimmune diseases to name a few.)

When it comes to symptoms, I thought I was one of the lucky ones.

My symptoms were not as bad as many in the celiac community. But looking back at all of the health issues I’ve had over the years (more on that later), it makes me wonder if they were indeed celiac related.

My main symptoms started in 2006 and consisted mostly of constant stomach pains. Every night I’d lie in bed complaining that my stomach hurt. And every night, Mrs. Dude would implore me to go to the doctor. And every night, I’d say, “Oh … I’m fine.” But after about a year of this, and losing 15 pounds on an already pretty slim frame, I decided to go to a recommended doctor in Princeton, New Jersey.

Being the organized soul that I am, I kept a food journal for a week before my appointment. What did it consist of? A bagel here and there, a few bowls of pasta, a few beers. I thought I was being pretty healthy. The doctor took one look at my journal and my symptoms and asked me if I had ever heard of celiac disease. I had not. He said that I needed to get tested ASAP.

When the blood work came back, he said they were the highest numbers he’d ever seen. He told me this as I was on the table about to get my endoscopy. So before I was put under, I pretty much knew. When I awoke, he said the villi in my small intestines were pretty much gone and I indeed had celiac disease quite badly.

I decided to look back at my health history. It seems I always had “something” going on. Let’s take a gander, shall we?

• In my youth (ages 8-14), I had warts. Some on my knee. Some on my hands. Not disfiguring, mind you – just annoying. Eventually, they went away but only after trying a zillion ointments. The final solution? Baking soda and castor oil. Seriously.
• At age 10, I woke up one day not feeling well. We had a doctor who lived down the street come by and he suggested I get to the hospital right away. (To this day, I wonder what he saw in me that made him suggest that. I felt like I just had a cold.) Anyway, I spent seven long days in the hospital. Blood work out the kazoo. Diagnosis: unknown. I found out years later that they were testing me for rheumatoid arthritis. (By the way, the highlight of the week was my dad visiting me every night after work. We’d watch Hogan’s Heroes together. It’s funny the things you remember.)
• In my teen years, I had the pleasure of dealing with acne. Worse than many, not as bad as some.
  (At this point, I know what you’re thinking. “Wow. Warts AND acne? You must have been quite the catch.” Yeah, good times indeed.)
• Throughout my life and into my adulthood, I have dealt with a number of nervous tics (noises, movements, etc.). It was just awful. It wasn’t until much later in life in speaking with a doctor that I was informed that I had Tourette syndrome. Unbeknownst to me, it comes in all shapes and sizes. I’ve learned to control the tics, for the most part.
• Fast forward to my late twenties. I developed lower back pain, which was severe at times. It’s something I still deal with and always will.
• In the spring of 2007, I began urinating blood. Yeah, that scared the ever living crap out of me. Diagnosis: bladder cancer. (And you males out there don’t want to know how they diagnose and treat it.) It was low-grade and after one recurrence a year later, I’ve been cancer-free (phew!).
• In the spring of 2008 came my celiac disease diagnosis.
• In the fall of 2008 when I was working one night, I starting feeling “not right.” I had pain in my neck and shoulder and it hurt to inhale. Mrs. Dude said we should go to the hospital. Do you think I learned my lesson? Of course not. Lying in bed that night, I had the strangest sensation almost like back pain, but in my entire torso. I instinctively jumped out of bed and the feeling subsided after a few minutes. Mrs. Dude spent the entire night poking me in the back to make sure I was alive. The next day, my doc said I should go to the emergency room just to get it checked out. After five hours of tests, the diagnosis came back: multiple blood clots in both of my lungs (medical term: pulmonary embolisms). That strange sensation I had in bed was the clots passing thru my heart into my lungs. This is the point in time where most people die from this. To this day, I consider myself blessed to still be alive.

By this point in time, I figured I had one foot in the grave. There were simply too many unexplained things going on in my body.

But here I am standing strong, gluten-free, and loving life.

That’s the road I traveled; my journey. What’s yours?

ABOUT THE AUTHOR:
Gluten Dude, a frustrated celiac and 2013’s Gluten-Free Blogger of the Year, is the man behind www.glutendude.com, a popular blog filled with humor, advice, and a passionate gluten-free community.