KnoxZine
KnoxZine

By: Suzanne Johnson

Let’s Talk About Poop
Like many stories, this one starts at the endmy rear end to be exact.

Back in the spring of 2006 I would have called it “irregularity or another polite euphemism. That’s just how I was raised. In a Southern household that didn’t talk about feelings or failures or family history, we repressed. Any enlightened discussion of bowel dysfunction was properly limited to the dog when I was growing up in Knoxville, Tennessee.

In fact I repressed so well I spent the first half of my life in utter constipation. For me, going to the bathroom was about as fun as confession—you’re supposed to feel better but the effort far outweighs the reward. So imagine my surprise years later, age 41 and living in New Jersey, I experienced a strange new sensation called diarrhea.

At first I reasoned. Happens to everyone, right? The shelves at CVS boasted an array of OTC medications in every imaginable form. Liquids! Powders! Pills! Suppositories! It was comforting that the entire pharma industry had my back and my bowel. Before long the OTC drugs had restored me to my blissfully constipated ways.

Later that same year, I caught two viruses in fairly short succession. With the first cold I missed five days of work and completely lost my voice, coughing away for several weeks. Around this time I scheduled my annual checkup with my internal medicine physician in New York. Let’s call her “MD #1 for those keeping track.

MD #1 performed blood work—one of the few times anything about me has been assessed as “normal”—and suggested it was likely that year’s seasonal virus.

A second bad cold laid me up in bed while I attended a communications conference in Santa Fe. I’d organized a dinner there with some close colleagues but was too sick to attend myself. Tom, a dear friend who knows only the imminent threat of death would keep me from an expense-paid dinner with wine, called me when the group returned to the hotel. “Are you okay?” he asked. “I’m concerned about you.”

“I feel sicker than a dead dog,” I rasped in a voice even Kathleen Turner wouldn’t recognize. After popping cold medicine I felt nominally better and flew home to recover.

At the time it was super easy to dismiss these bouts as minor deviations from health, or part of the broader human germ experience. It was the Chinese take-out…everyone gets bad colds…the bacteria on the subway alone could spark a global pandemic. It didn’t occur to me there might be a bigger story.

Early the next year when I turned 42, I began to experience vague complaints, what the medical world so-not-helpfully deems non-specific” symptoms: fatigue, a dry voice, dry eyes and a dry mouth. Every important part of my body seemed to be shriveling up from dryness, like an Egyptian mummy except I was alive and didn’t live anywhere near the desert. I increased my daily water intake but that didn’help. I didn’t smoke and wasn’t taking any provocative medications. There was another encounter with diarrhea.

My dentist—DMD #2—told me the saliva in my mouth was almost non-existent, putting me at increased risk for cavities. I also started to experience cracks on the corners of my mouth that became red and inflamed.

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And then, I started losing my hair. My hair. I’d always been blessed with thick hair that grew quickly. All of a sudden it was thinning and breaking and there was a mess of it on the floor every time I washed. I saw a trichologist (Hair Doctor #3) who examined my scalp and thought my iron/ferritin levels were too low for healthy hair growth. By now nothing felt normal to me.

Doctor Doctor, Give Me the News—Please!!
Encouraged by a friend, I saw an integrative physician in upper New York, about a 3-hour round-trip from my home in New Jersey. MD #4’s practice took a holistic approach to the body, rather than simply treating symptoms. He was the first physician who took tests outside of standard blood work—for example, lupus and Lyme disease. He also performed vitamin and mineral testing, which indicated I was low in magnesium and vitamin D. (Vitamin D, it turns out, is actually a hormone.)

MD #4 suggested I suffered something called “malabsorption” and candida overgrowth. “You basically have a fungal infection throughout your body,” he explained. The idea of a fungus in my body should have been enough to scare me, but I only stopped seeing MD #4 when he practically insisted that my eye doctor, an ophthalmologist (MD #5), didn’t accurately assess my dry eye issue as an STD (it wasn’t).

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At the referral of another friend, I saw a more traditional but highly regarded internal medicine physician in Manhattan, MD #6, who was incredulous when he learned MD #4 had prescribed 2,000 IUs daily of vitamin D, a fat-soluble vitamin that can sometimes be toxic at high doses (imagine how he’d feel if he knew I was now on an even higher dose under the monitoring of my current doctor). MD #6 attributed my hair fallout to early menopause or stress.

My mummification practically complete, I returned to MD #1 and pleaded. “You’ve got to do more tests.” To my surprise she did. Everything again came back normal, except for one test. “You tested high for sprue, she said. “You’ll need to see a gastroenterologist.”

Sprue? I didn’t know what it was but clocking in at one tiny syllable, how bad could it be? Que the quick Internet search. Spruecode for celiac disease, an autoimmune digestive disorder that damages the small intestine to the point where one stops absorbing nutrients from food. And the cure seemed worse than the disease: cutting out any food/drinks with gluten (a protein for Pete’s sake!), including wheat, rye and barley. I quickly catalogued some of my loves: Bread. Sandwiches. Pasta. Pizza. Beer. Shrimp shumai. Wendy’s chicken sandwiches. Krispy Kreme. BUH BYE!

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There would be no trips to CVS for this one, the one disease on the planet you can’t pop a pill for.

Still, the gastroenterologist, MD #7, had final say in the matter. When he heard my list of symptoms, he said it didn’t sound like celiac disease. “But I can tell you aren’t going to leave without getting your test.”

Smart guy.

I felt pretty lonely the day of my endoscopy (an exam and biopsy of the small intestine). Deep down I knew what the result would be. Sure enough, three days later MD #7 called. “Yeah, it appears you have celiac disease.” He sent the results to a specialty lab for reconfirmation, and then suggested I see a nutritionist to help me start a gluten-free diet.

My Wake-Up Call: Put Crap In…Get Crap Out
Getting the celiac diagnosis was like getting the uber-key to the kingdom. From my chronic childhood asthma and constipation to my more recent sicknesses and diarrhea and difficult recoveries, it all started to make sense.

Who knew that about 80% of your immune system is in your gut? My 5th grade science class at Farragut Middle School had it right all along: You are what you eat (though I wish they’d added, “No, really Suzy, we mean it.”) It wasn’t until my 40s that all the bad fuel I’d been putting into my body made me take notice.

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Despite suffering a slight mourning period for foods that were dead to me, I felt ecstatic to know what could be causing my issues. It didn’t take long for my non-specific symptoms to subside once I started eating more real food. As someone who grew up in the heyday of processed food—and in a culture that prizes fast food and won’t pass GMO labeling laws—I struggle with this new mindset seven years later.

I only wish I’d known sooner.

You Got Lucky, Babe
The truth is I’m lucky because the average length of diagnosis for celiac disease can be 6-10 years.* I was also fortunate to establish a good relationship with a holistic internal physician in New York, and along the way discovered I suffer from hypothyroidism (low thyroid), which can occur along with celiac disease. Huge discoveries for me.

Early on I resisted the temptation simply to replace the bulk of my diet with gluten-free processed foods. I had to learn to cook more and cook better. Farmers markets were no longer idyllic roadside scenes but essential grocery stops. The best food is simple—a philosophy that extended into other areas of my life as I started simplifying my possessions by donating books, CDs, clothes, and everything else that seemed to be promoting blockage. Amazingly, as all this was happening I met Scott, the love of my life, a fellow foodie who tries to support both our diets by eating healthier food (which happens to be gluten-free).

But we aren’t perfect eaters. I’m practically a regular at my local Red Velvet Cupcakery, which sells gluten-free cupcakes. The difference is now we’re more aware of what we eat and the potential impact on our health, our mood, our quality of living. It’s a process.

There’s been a lot about gluten-free in the news lately, as the backlash grows against another so-called trendy diet. This controversy strikes me as a red herring, a distraction from the growing number of celiac diagnoses, emerging studies about non-celiac gluten sensitivity, and more generally, a distraction from t

he idea that unhealthy eating habits and processed food lead to disease.

Thankfully, I no longer need a test to tell me that.

LESSONS LEARNED:

  • You know your body better than anyone. Standard lab tests don’t always tell the full story.
  • Don’t be afraid of doctors. They aren’t always right.
  • Ask for and keep copies of your lab test results. Learn what the tests and the results mean.
  • Find a doctor you trust, who listens to you, and takes time with you.
  • Despite heightened gluten-free awareness in the media, the rate of celiac diagnosis is still low (estimates are 83% of Americans who have celiac disease are undiagnosed or misdiagnosed, according to the National Foundation for Celiac Awareness.)

For more information about Celiac Disease, it’s symptoms, etc., visit Celiac Central, the online hub of the National Foundation for Celiac Awareness (NFCA). 

* Source: Daniel Leffler, MD, MS, The Celiac Center at Beth Israel Deaconess Medical Center

© Suzanne Johnson, 2014.

Cover Photo by: JupiterImages (photograph); Jen Christiansen (photoillustration)

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