a celiac story

Other than a virtual toilet to catch all the sh-t I fling out into the Internet, I often struggle with what this site is. Remember the last time you were on a really successful, populated, ad revenue-heavy site that had absolutely no focus or identity, huge lag between posts and amateur design? No you don’t. Because even though the Internet has very low to no standards, even that entity doesn’t exist.

Looking back at all my ramblings, ultimately I use this site to be happy, excited, mad or exasperated about the aspects of my life (and how lucky I am that I can, and that a few of you deem the time spent here worthy – thank you.) There is one part of me that doesn’t get a lot of words, but it is the realm of my life that I get the most worked up about. Like angry on the drive home, that anger that doesn’t seep away with a good loud blast of music or a smile from my beautiful kid, trip-trap trip-trapping down the hall, so happy to see me home. It’s the bullsh-ttery and tomf-ckery that surrounds the “lifestyle” of celiac disease. (If you looked up in a medical tome the lamest diseases on record, it would be near the top. It sounds so menacing but really, guys, “our tummies hurt if we eat bread, sniff” should be the new unofficial name for it.)

I was officially diagnosed with celiac disease in January 1994. While waiting for the test results to come in after the holiday break, I ate epic amounts of Siegel’s Bagels and gigantic plates of plain buttered noodles. (Like in The Big Blue. If you know what I mean then you know what I mean.) I knew that the diagnosis was gonna be positive. Because it was the worst f-cking option the MD had thought of, so of course it would happen to me. (I was so dramatic then; good thing I cured myself of that temptation to be so overwrought about everything. Oh. Wait.)

Freshly diagnosed, I didn’t turn my gut-enforced brand new way of feeding into anything positive. In a classic me move, Duchess of Missed Opportunities, I could have been the Gluten-Free OG of the Internet by now if I’d seen the diagnosis as an opportunity. Nooope. Instead I rebelled and rolled through McDonald’s drive-thrus, checking my rearview like I was a cheating spouse, to furtively order Big Macs that I would gulp down so fast I barely even tasted them. (Over time this risk-taking subsided. As the results of accidental intake turned more dire over the years, it just stopped being worth it.)

I meekly ordered plain chicken breasts and mashed potatoes from restaurants, embarrassed at having to mention my “allergies,” and never using the scarlet letter of a “What is Celiac Disease?” card that you were supposed to give to a restaurant kitchen. (I always suspected that the staff would look at it, spit on it, fart on it and then return it kindly to me.) I felt (and still feel) BAD turning food down.

I felt having this disease was boring and a bother to others, and never once thought of reaching out to find others stumbling through a foreign and grim food landscape. To this day I don’t personally know anybody with celiac disease. If I met somebody what would I say? I’m supposed to sidle up to them at some sanctioned gf event, chewing on a meh cookie and be all “Mmmm, nice night, huh? So, were you constipated or shitting yourself before you were diagnosed?”

I caved last month and actually Liked a gluten free site on Facebook. My reward was such: This one woman (with a cat for her profile pic – I will just leave that alone) responded to a light hearted post about snacks eaten during the Oscars with a snippy dismissive angst-loaded response along the lines of  “I don’t watch mindless television and I can only eat snacks made from organic shoes.” I HAD to respond to her because, well, that is just inexcusable. In a then ensuing back and forth she, amazingly enough, didn’t “understand” why I called her a buzz kill.

How have I morphed from apologetic indifference to now making you read an entire column about it? Times, man, they are a changing.

In my experience, a lot of people with health issues, especially pertaining to their stomachs or digestion, love to share. And by share I mean moan and groan and make the rest of the world want to poison them. They define themselves by their flax & fennel salad coated with spelt oil and demand attention and bend over backwards compassion, and are outraged when not everybody cries a thousand tears for their plight. Being part of this crowd because our intestines are lame is pretty much the worst.

Yes, over the years I have slid in grumpy sulks about missing certain treats that are only good if loaded with gluten, but I have never ever expected any special treatment, or been comfortable flying my gluten free flag for all to see. It defines what I can put in my mouth and that’s about it. I don’t look at gluten free websites or recipe books (Really obvious secret alert - did you know you could just substitute gf flour in all recipes with a dash of xantham gum? It’s kind of absurdly easy). I don’t have a gluten free kitchen. I am careful but my family can eat wheat, and with gluten free food costing about double what wheat-filled food does, I would have to be rich or crazy to have us all eat wheat-free. And my family likes good carbs, as they should. Don’t believe any celiac when they say gluten free bread or doughnuts taste “as good.” Our taste buds have morphed and resettled and we tell ourselves these lies so we don’t cry ourselves to sleep knowing we will never ever taste a Krispy Kreme doughnut.

Now, in 2012, gluten-free is everywhere. Which can be a double-edged sword. Yes, compared to 1994 where I had a half-empty warehouse in Richmond as my grocery store, it is a great thing. But first, the negative. I wish so hard it would stop being trendy to abstain from wheat, thus allowing the market to stop pricing all gf stuff so much more than it needs to be. I wish companies and some bakeries (ahemChoicesahem) would not use the term gf to mean "we can make anything without wheat in it and these pale-faced suckers will buy it.”

I have purchased $8 bags of 6 crackers that taste like sawdust and mdf had an illegitimate child, and I am supposed to eat them with a look of rapture on my face. Do gf companies work in a different realm without extensive product and taste testing by real people with taste buds that work? It’s infuriating. Also, a special shout out to the asshole company that markets their paper plates as gf. Because you know when you’ve finished your company picnic lunch and you’re like, “F-ck life etiquette, I’m gonna eat this goddamn plate to ensure I get every last morsel of Debbie’s secret recipe potato salad.” Well, sleep easy celiacs. You’ll never know what it’s like to have a great room temperature sandwich, but you can eat your PAPER PLATE. Dicks.

The good, nay GREAT, news is that restaurants and companies and society in general now know my steez food-wise. I can eat out without getting sweaty and anxious. Every time I see a new bakery or store carrying exclusive gf things it feels like they have named themselves WE LOVE YOU MISSTEENUSSR. It’s exhilarating. Because a large part of my head is still back in 1994 knowing what it’s like to go without and feeling like a martyr for delicious things.

On an even closer to home level, it still makes my heart swell when friends and family remember and make me something gf or suggest a gf potluck. (I don’t take that sh-t for granted. I think that’s why I am so universally beloved.)

How I’d like to finish this column, one that’s been pried deep from my craw like a popcorn kernel lodged in a back molar, is on a thankful note. I appreciate and want to call attention to the creative and wonderful people making celiac diets better through clever, imaginative and conscientious ways (that’s you Patsy Pie, Amy's, Glutino, Udi’s and Victoria's Origin Bakery). Life, a really good life you want to jump and yell about even if you can’t eat 99% of a major food group, should be full of flavour, any kind you can get, and these people and companies are reminding me to be grateful. Now if everybody else living without could find the same sentiment inside them, oh the possibilities.