Five Years a Celiac

Today is the 5 year anniversary of my life as a diagnosed Celiac. It’s also my birthday. It’s also MLK day, and like him, I have a dream, but it’s more about taste equality, and lack of a fear of crumbs, than basic human rights, so I must concede that he earned the day far more than I did. But as I said, it’s my birthday, so perhaps you’ll indulge my slightly less altruistic reminiscence?

Five years ago today, I had a lot of lasts: my last taste of normal pasta, my last, soft nibble of my favorite herbed bread from a local, Alaskan restaurant, my last bite of gluten filled cake, my last night of not worrying whether going to a restaurant was too much like playing Russian roulette. Of course I did end up terribly ill that night. Knowing we were testing for Celiac, I loaded up. I went on one last gluten binge, and I paid dearly for it. I was so sick I didn’t even want the cake by the time it came out. I bloated so acutely that I couldn’t even button my stretchy pants to leave the restaurant with dignity. I was only saved from complete humiliation by a very long shirt. 

Fast forward nearly 5 years to last Friday night. As part of a sort of early celebration we stopped off for dinner at Chili’s while we were out. All of you seasoned Celiacs probably can hear the death knoll already can’t you? Go out on a Friday night? When it’s so busy and kitchens are messiest? Yeah. A smart move it was not. When there was a wait to get in I should have taken it as a sign and turned right around. But did I??? Nope. I was starving. And I had talked with one of the managers of this location before and they had served my well since, though admittedly never at such a busy hour. So in I went, ordered the same dish I always do after confirming it was still on the GF list, requested that kitchen managers be alerted, etc. And just like 5 years before, I found my self in utter agony, desperately unbuttoning previously comfy pants upon which I had assumed the buttons were merely decorative because I had never needed to use them before.

That night was the worst reaction I have ever had in my life. I ended up in the ER before the next morning, having nearly fainted a couple of times from severe dehydration. It felt like a perfect storm of glutening meets horrendous food poisoning, though my trooper of a hubby ate the last half of my meal to be sure and didn’t so much as get gassy, so maybe gluten meets virus? Either that or they supercharge their gluten at Chili's. At any rate, 2-3 days later, I’m not yet tolerating solid foods. They're too painful. There likely won't be cake this year thanks to that, even one of my good, GF ones. (And I had soooo been craving a rum cake! I’m seriously pouting over here.) Instead of cake this year, I just get to dream.

The cake I'm dreaming of today.

Maybe my dream is about human rights, after all. I think it’s a pretty basic human right to expect to be able to eat without fearing for your immediate health, or life, as with anaphylactic reactions. So I’m dreaming of a world where restaurants only publish GF menus when they really have the knowledge, training, space and equipment to actually provide GF foods, whether they're busy or not. I’d vastly prefer 1 or 2 safe options to 15, any one of which might be the next to poison me (related rant here). I’m dreaming of a world safer than 20 ppm for stuff that’s labeled GF. I’m dreaming of better research into cross-reactive foods. I’m dreaming of future birthdays, when I’ll actually get to eat and enjoy the cake.

So maybe it’s not as lofty as MLK’s dream, but it’s mine. 

I Blame Gwyneth Paltrow

I was flipping through pictures of our fall on the East coast when I practically tripped over this stupid card. When I first spotted it in the store, I nearly choked on the laugh/gasp/groan/chortle/sigh trying to escape my throat all at once. Not a pretty moment, but an honest one. I was so enthralled/aghast that I immediately had to send a picture to the Hubby. I titled it, "I blame Gwyneth Paltrow." He didn't get it. But I couldn't help reflecting that my own emotional relationship with the whole gluten free fad is... Well, a good mirror of the fad's direct influence on my life as a Celiac. It's a love/hate thing, with an emphasis on a deep running gratitude/resentment struggle, and most days the resentment wins.

The supposed benefits of the fad are conspicuous enough for any know-it-all to point out at a cocktail party, just for fun. It's, " raised awareness," "created a market," and by doing so, led to all the great gluten free choices on the market today. This is where that gratitude I grudge so much comes from. I am truly grateful that there is enough money headed in the right direction to support companies like Aleia's, Bob's Red Mill's GF selection, the amazing GF millet and buckwheat I get from Arrowhead Mills, and all the little substitutes like GF Tamari and yes, even Applegate Farm's GF chicken nuggets when I'm desperate for quick, kid food. But at what price, this luxury?

The fact is, Gwyny can take weekends off. I can't. All those GF-because-it's-oh,-so-hip dollars are buying lax standards and bad attitudes. I, the Celiac, for whom the GF diet was originally contrived for a real medical purpose, now have to call manufacturers, not to ask whether an item is gluten free, but whether it is gluten free enough. I have been poisoned enough times to know that the labeling means very little to a number of manufacturers riding the GF dollar wave. I do realize that legislation will come into effect later this year that will legally define the term "gluten free" but I could, and probably will, write a whole other post on why the new law just isn't strict enough to be useful. And have any of us not had to face the incredulous, "just a little won't hurt," or "god, you're so picky," from the odd relative bearing food or server caught picking croutons out of our salad? And they always follow up with the eye roll/tongue click of annoyance meant to signify that they are only humoring our obnoxious selves when we insist on not eating our own illness. Why? Why are they so convinced that we're just hypochondriacal, uptight, persnickety pains in their rears? Because most people they encounter on a GF diet don't have to be this careful. For the casual GF'er, they're right. A little won't hurt, and making a fuss would be out of line. The prevalence of flippant GF dieting belies the seriousness and depth of real, GF treatable conditions in the public eye and in the bottom lines of food companies. Ms Paltrow is undermining our credibility.

And so, we get public disdain bubbling up as supposedly chic humor. We get this stupid card.

And you know what? It's funny. It hurts. I hate it. And I sure wish those who could, would get back to it and leave us a GF industry that's actually safe for the necessarily gluten free.