I’m tired of gluten.
But apparently, I’m not tired of writing about it.
So many people say to me, when they find out how much I know about celiac disease, the effect of gluten, and the unexpected places that gluten can hide: “Wow, you sure know a lot.” When they find out that I have only been eating gluten-free since late April (April 30th, to be exact), they look at me as though I am something otherworldly. An excellent nutritionist at Swedish Hospital said to me last month, “You have really embraced this. I wish that everyone could take this in such easy stride.”
Yes, well, it’s not always so easy.
I am cheerful about it. I am determined to eat well and be healthy. I’m filled with gratitude that I’m finally feeling well after years of having little energy and a series of medical crises. 98% of the time, I count this all as an unexpected blessing.
And then there are the times I’m just pissed off.
What the hell? I can’t eat gluten ever again? Four months ago, I had never even heard of celiac. And now, it turns out that not only has it been affecting me my entire life, but also I must stringently follow this gluten-free life for the rest of my life. What?
You mean, I’m forever going to have to explain what gluten is to people who look at me with their heads cocked to the side and their eyes scrunched up in disbelief? I, who was rarely picky about anything, accepting life as it arrived, now have to be demanding in restaurants and make a nuisance of myself? And even then, I’ll still probably get some gluten and not feel well for a couple of days?
(It’s moments like these that I feel like Charlie Brown after Lucy has pulled away the football at the last moment, again.)
Bollocks to you, gluten.
There, now I feel better.
There are moments that feel like one of those blisteringly complicated and furious passages in a thrashing song, where the guitars and drums cascade higher and higher, entangling themselves together and driving all the sound in the room to one point, loud and feral…and then everything drops to a quiet place. Still.
I’m human. I grow mad. Annoyed. Tired of talking about gluten. Sad that when it comes to food, I’m always going to be special. Exhausted of reading labels, trying my best, and then still growing sick sometimes.
The other night, Daniel and Jeff made me a wonderful dinner. Fresh pesto on rice pasta. Roasted vegetables. The leftovers of my black bean salad. And lots of nibbles, which Daniel and I both checked for possible suspicious ingredients. He has been a vegan for 26 years, so he knows what it’s like to check labels assiduously. Everything either said gluten free, or I figured it had to be gluten-free from reading the ingredients list.
I’m learning this the hard way: don’t put anything in my mouth unless it says gluten free or the company has verified it for me. It’s a hard way to live, but it’s the only way to ensure I’m going to be well.
There were cashews from Trader Joe’s, a relatively new product dusted with lime and Thai spices. The last time I was at Daniel’s, I passed on them. I didn’t know, for sure. Something about the look of them triggered it for me. But this time, I don’t know why, I tried some. I found out when I returned home that they are not on TJ’s carefully prepared gluten-free list. It’s possible the roasted vegetables had soy sauce in them. Or maybe it was the Terra chips, some of which have wheat in them, I found out later that evening. By that point, I couldn’t remember what kind I had eaten.
Halfway through dinner, I started feeling quavery. Bit of a headache. A flush rising on my face. And the sinking feeling in my stomach. Daniel was taking digital photographs of us all, and half an hour later, he put them on the computer and showed them to us. (We’re in an instant gratification generation.) I saw the photograph of the two of us and nearly cried. “Uh-oh,” I stumbled. “I knew it. I’m having a gluten reaction.”
My neck and face were red, as though someone had tipped tomato juice on me. My entire life, I have run toward a flushed face. Blotchy. Pink. I thought it was just part of being me. But now, I know, it’s a gluten reaction.
I gathered my things, walked to the car disappointed, and drove home. By the time I had reached my front door, my head throbbed with the old, familiar headache. I had nearly fallen asleep at the wheel.
Bollocks to you, gluten.
Okay, that’s probably fairly churlish. But, call me churlish. I hate that something in micromillimeters has this profound an effect upon me. Yes, I’m happy I discovered it. And I’m finding joy in it, most of the time. But sometimes, I just want to say, bollocks to you, gluten.
I’ve learned now. At times like these, go on a picnic.
Last night, my friend Nicole took me to the Patty Griffin concert at the Woodland Park Zoo for my birthday present. And to truly celebrate, she had prepared a gluten-free picnic. (You can see part of it here.) Her kindness silenced my annoyed and pitying thoughts. Even though my innards were still in a twist, and I definitely wasn’t at my best, I couldn’t stop smiling. Yes, the music was fantastic, with the sun shining on the heads of an archetypal Seattle crowd—everyone healthy looking and not stressed, dressed in REI clothes, tie-dyed shirts, tasteful shorts, and colors made brighter by the enormous blue sky—and nothing to do but sit back in our lounge chairs and participate in the day. Patty Griffin is one of my absolute favorites, and her voice in person is even greater.
But the company was even better. Because, if I’m sometimes irritated that I have to avoid gluten, I’m doubly heartened when someone goes out of her way to make me food that won’t make me sick. Nicole made crepes with brown rice flour, almond meal, and a touch of soy flour. And she filled them with goat cheese, mashed figs, toasted pumpkin seeds, and nectarines. We ate grapes and cut canteloupe, pesto pasta, and fruit salad I made us in my kitchen. And to top it off, Reed’s Ginger Chews, which are mollifying for an unsettled stomach. And I know they are gluten free. I’ve checked.
The sun shone brightly. We laughed and talked about life beyond gluten. We sat in silence, smiling at the music. And I felt very much loved.
So here’s my suggestion for when you are throwing a tantrum because you can’t eat gluten anymore. One, let yourself throw it for a bit. We have to feel what we feel. Two, stop after awhile. Feeling wretched about the fact that you’re going to feel wretched sometimes is not going to make you feel better. Three, drink peppermint tea, eat some ginger, drink lots of water, and listen to your body well enough to spend the day on the couch (preferably reading a thick, absorbing book), close to the bathroom. Four, when you’re feeling better, find someone you love to help you pack a basket full of the bounties of life. Swing it in your hands as you talk together. Sit down on the grass. And enjoy your picnic.
p.s. Blogger alert: I’ve just entered this month’s competition of Does My Blog Look Good in This, hosted by Spittoon.biz, and run by the lovely Andrew from the UK. You can’t really vote in it, but you can see my cupcake photo again at his site.