My Story: how I fell from grains

I was gluten free before gluten free was cool.

I know that makes me sound like an annoying hipster asshole but it's true. I was diagnosed with celiac disease and put on a gluten free diet in 1990, back when most people would look at the words, cock their heads in confusion and say, "glutton free?" 

Back before Hasselbeck.  Before the internet even.  Before gluten free labels on grocery store shelves or on anything AT ALL.  Back when NO ONE had heard of it.  Back when being gluten free was the loneliest freaking thing in the world.  I didn't know anyone who couldn't have pizza or beer or fried ...anything.  I was a college student and suddenly all the staples of my diet were off-limits. No more ramen noodles, pop tarts, mac'n'cheese, or pizza?  What did that leave?  I had no idea how to feed myself.  I would weep in the aisles of the Piggly Wiggly, just wanting to grab a quick and easy dinner before my evening class and not being able to find ANYTHING except a piece of fruit.  And while I was, by that point, all too happy to keep the doctors away, there's only so many days in a row you can eat an apple and call it a meal. Being gluten free in the early 90's was hardcore.

But I had no choice.  I almost died.  By the time they diagnosed celiac, my body had starved itself nearly to death.

It started suddenly with what appeared to be a stomach bug that hit out of the blue. There was something going around. My doctor ran a bunch of tests just to be sure it wasn't something terrible, because I was getting ready to leave for a summer semester in Greece and no one wanted me to be horribly ill and god forbid end up in the hospital in a foreign country.

Heh. Well, good intentions and all.  The tests all came back negative and I trundled off to Greece with instructions to take it easy, stay hydrated, and eat a bland diet for a few days until I bounced back from the bug.

I followed directions and for my first week in Greece I ate nothing but chicken and orzo soup, tea and toast, buttered noodles.  I did not bounce back.  I only felt worse.  I'll spare you the gory details but the good people who ran the study abroad program became alarmed when I kept missing classes because I couldn't leave the bathroom for 3-4 hours after eating.  Oh, and I was fast becoming freakishly thin.  And really, really weak. 

Much drama ensued, involving not one but THREE different Greek hospitals; a doctor with a duct-taped stethoscope who walked into my room with a lit cigarette clutched between his dirty fingernails and ran every test he could think of before declaring "is could be serious, or is could be not serious" and walking away with a shrug; a former Woolworth checkout clerk from Astoria, Queens who rode her moped 6 hours across Greece to rescue me from the welfare hospital and the aforementioned smoking doctor, and yet another battery of tests at the teaching hospital where said former cashier was currently enrolled as a medical student.  Oh, and I lost my virginity.  It was quite a summer and I really should write a book, but I digress.

They didn't figure it out until I returned to NY, to a gastroenterologist who, fortunately for me, had just read about celiac disease in an academic journal and had a hunch to order an endoscopy to check for what he called "non-tropical sprue."   For the first time, a test came back positive, like, REALLY positive, and there was no doubt about it.  I had this disease and that meant I would be gluten free for life.

I was, by that point, literally wasting away.  For 12 weeks, my body had failed to absorb nutrients from anything I ate.  I was emaciated:  85 lbs stretched over a 5"8" skeleton of which you could see every bone.  My muscles were breaking down.  I couldn't walk up stairs.  I was starting to get really scared.  I'd never heard of gluten before but simply changing my diet seemed like an absurdly easy solution to what had turned into a life-threatening problem.

But 2 weeks of mashed potatoes and boiled rice and baked chicken and absolutely NO GLUTEN later, I was, amazingly, better.  I began putting on weight and no longer questioned my ability to summon up enough energy to keep my heart beating through the night.  I could take the stairs.

Eventually I returned to normal. 

And then the real challenge began:  keeping to the gluten free diet.  Cue tears in the cookie aisle.

That was over twenty years ago and oh, how things have changed. It's a whole new world now, and much of it is gluten free.

Charleston, SC has been my home for the past 15 years, and it's always been a great town for foodies. And now it's becoming more and more friendly to gluten free eating.  I didn't want to be the one to start a blog about it, but no-one else has stepped up so here I go....