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Gluten-Free Girl and the Chef

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30 May 2005


And what a grateful time to be feeling healthy. I'm so happy to feel my body restore itself. I can't even tell you what a remarkable difference there is in me since I stopped eating gluten. I'm starting to feel better than I ever have in my life. Energy is surging through me, for the first time in years. And frankly, that's worth more than anything else in the world. To feel alive, and feel as though I finally have energy to give to other people, because that's true life for me.

This morning, I was on Vashon Island, visiting my brother and sister-in-law. But mostly, I was there to see my dear, dear nephew, whose high, clear voice moves me and makes me laugh every time he talks. My nephew and I were dancing to Stevie Wonder's Innervisions, which I hadn't heard in years, and running around the rooms in circles. I was flapping my arms, making him laugh, twirling my feet in and out, making him laugh. "Shauna is silly!" he shouted, in his sweet, two-year-old voice, giggling. I love making him giggle, watching his shoulders shake. But a few moments later, I stopped trying to make him laugh and just bounced around the room, my center of gravity deep within me, my feet solid on the ground, and my energy inexhaustible. I felt dissolved into the moment, open and free of any former self. I felt as though I could dance forever, with my little buddy by my side. For months, I had to sit on the couch, wan and wincing, while he danced around the living room. Today, I could outlast him. I felt alive.

Everything feels alive now.

the first gluten-free bread

26 May:

Food for Life's gluten-free raisin pecan bread ain’t bad. Especially with organic peanut butter and a hot cup of coffee, early in the morning.

an evening of small sweetness

from 18 May 2005:

Life is full of small sweetnesses these days. Or, to put it more accurately, life is full of moments where I’m able to recognize the sweetnesses these days. Leave the brain fog and stupor behind, and everything looks so beautiful.

This evening, I went to Francoise’s house for dinner. I hadn’t been over in months, and I had missed that joyful family. Francoise is one of my favorite people in the world, absolument. Always, she smiles. Everything enchants her, makes her laugh, or helps her discover something tremendous about life. She acts on that knowledge, that there are so many things that are tremendous about life. When I’m walking down the street from school, on my way to the lunchroom, and see her coming toward me, I smile in anticipation, because I know that she will wave, vigorously, then shout, “Shauna!” in her gorgeous French accent. Being with her makes me feel at peace with the world.

And so I went to Francoise’s for dinner, for “...our first gluten-free meal!” as she put it. Adrian, her wonderful, loving husband, barbecued us salmon and bacon-wrapped scallops on the porch, even though it was pounding grey rain unexpectedly. “Seattle barbequing season,” as he said. Their spirited, rambunctious, word-play-loving daughters talked over each other in their eagerness to tell me stories. Camille gave me a little purple pillow she had made me when I was sick. We bounced up and down in the kitchen, spontaneously. The saffron rice bubbled on the back burner. The green beans steamed in the pressure cooker. And I rememberd, in a flash, those weeks of laying on the couch, pale as death and feeling alone.
So there was salad with dill, shallots, and French sea salt. There were eruptions of giggles throughout the meal. There was a platter of perfectly cut pineapple, the first of the season. Everything tasted good, and not just the food.

And when it was time to leave, and I had hugged everyone goodbye, the sun had emerged from behind the clouds, that liquid golden light of almost-summer. And I swear, as I walked to the car, a rainbow bent down to the street to meet me.

Life is sweet.

feeling well after giving up gluten

17 May 2005

These past few days, I’ve had sudden spasms of energy so enormous that I feel as though I’m going to burst out of my skin. I stand in the living room and think, “What am I going to do? I feel like I could fly to the mountains on the power of my own body right now.” And so I dance around the living room instead, or cook another pot of soup, or walk around the neighborhood so fast that I actually, finally break a sweat. It feels good.

There’s no end to my joy in discovering that I have celiac disease. I know most people would be frightened or frustrated, berating their fate. One of my best friends actually annoyed me the other day, because a) he clearly didn’t quite believe me, because eating gluten free just feels weird to him, and b) he wanted me to be more angry. For some reason, it really bothered him that I wasn’t filled with rage. I guess he would react that way, and he doesn’t understand why I’m not him. But I’m not him. I’m not filled with rage. I understand that I’ll never have a Top Pot doughnut or a spontaneous treat from Macrina Bakery or an H + H bagel when I’m in New York, not ever again. I’m always going to have to be one of those picky ordering women in restaurants, and I don’t like to make a fuss. Summer afternoons will always have to be bereft of beer for me. It stinks. But really, not that much.

It’s not that I’m a saint. I’m not. It’s just that I feel so much better now. My head hasn’t been crushed by a headache in sixteen days, after a year and a half of knowing that pain would creep upon me by the late afternoon, every day. That alone makes me sing in the car when I’m driving. But I’m filled with an energy I haven’t experienced in years. Six months from now, when my intestines are completely recovered, I’ll be bouncing off the walls. All my life, I blamed the crunchy pain in my knees on old softball injuries, but now that it has disappeared, I know that it’s the gluten instead. My back doesn’t hurt. My neck feels fairly free. I’m gloriously, ravenously hungry. And I sleep like a small toddler who has run around the room all day, giggling, then falls into bed into gratitude. I feel good, and I’m still not even recovered.

No beer or bagel is worth this feeling.

And of course, I’m finding that there are unexpected gifts in this. My life is opening in ways I could never have predicted. For example, I’ve been devouring information on celiac, the intestines, the vitamins our body needs to function, the hidden ingredients in processed foods, and the effect of pesticides on our bodies. I’ve always loved all things medical (I dissected cadavers in high school, after all—in the context of a class, of course), and this has fed into this fascination. And deeper than that, I’ve always cherished the chance to learn something new. It feeds me, makes me feel radiant, leaves my petty mind behind. And now, I have nothing but learning before me.

I’ve already learned than most people have expected me to learn. I went to a nutritionist appointment today, prepared to receive more information than I could soak in. But it turns out that I already knew almost more than these two lovely women knew. It was good to have the knowledge I’ve gathered on the internet and through anecdotes confirmed by scientists, but it was also good to realize that I can trust my own research. And mostly, I can trust my own body. It knows more than I do.
One of my colleagues said to me today, “Can I tell you how good it is to see you perky again?” I just laughed. Normally, I wouldn’t like that word, but today, it felt right. One of my dear friends said to me on the phone just now, “I haven’t heard you sound this good in three years.” I feel that. And in one year, I’m going to feel better than I have in my entire life.

I’m going to have one hell of a 40th birthday party.

And on top of it all, people’s kindness has been calling in droves. One of my colleagues left a gluten-free chocolate chip cookie mix on my desk, along with an ad for rice crackers at Trader Joe’s. One of my students, a sweet, shy boy who rarely says a word, came up to me after lecture yesterday with a paper bag. Turns out that he had been having medical problems this winter as well, and the doctors thought he might have celiac. Luckily for him, he didn’t. But he still had all the information: restaurants in Seattle that are celiac friendly; forums online with intelligent people commenting on their experience; good brown rice pasta. And out of the bag he pulled a package of gluten-free flour and gluten-free soup. I could barely speak with the gratitude. And today, one of my seniors came up to me with gluten-free zucchini bread he had bought at the PCC for me. “It’s really good,” he said. “I thought it might make me happy.” It was, and it did.

One of my friends teased me a couple of months ago, when I still found reason to be cheerful, even though I couldn’t eat and I was spasming in pain. “You’re just one of those silver lining kind of people,” he said.

“Yes I am,” I said emphatically. “And you know what? I’m always proved right.”

And here it is.

on my way

from May 11:

I'm on my way there. I'm still feeling a little pain. I'm still easy to exhaust. My skin is a mess because the virus, and then the celiac, found its way into every part of my body. It's going to be six months before my intestines are completely recovered, and so I'm going to consider myself recovering for awhile.

But the difference between May 11th and April 20th feels miraculous. I'm dancing down the sidewalk. I'm singing when I drive. I'm going to a friend's dance performance in just a few moments. I'm eating with gusto, tasting my food, and doing more than nibbling. I feel alive.

diagnosed with celiac

From 10th of May 2005:

I've been gone a long time.

For the past few months, I’ve been in lousy pain. Again. The injuries from the car accident (last December 12th) carried on, and I continued to be crushingly tired at times. Most of the time. But along with that, every cold and flu that came along seemed to glom onto me and keep me on the couch. Most of the fall I was limping along, with a resurgence of back pain and a perpetually stuffed-up nose. Headaches invaded my head every day, every day. Not a day without one, and most of them were pounding by 4 pm. I returned to acupuncture and massage and the doctor’s, hoping for relief. In January, I was laid low with the horrible flu everyone else around me had too: bad sore throat, lethargy, achy joints. That lasted a month. And then in early March, I was suddenly struck with a fever, acute sore throat, and utter exhaustion. For two weeks, I thought the virus had returned. A doctor gave me antibiotics and a mono test. The first one made me feel worse, the second one came back negative.

And then came the abdominal pain, the nausea, the feeling of perpetual fullness, the growing revulsion toward food, the flattened energy, the sleeping 18 hours a day and still feeling tired. The lousy time. I couldn’t eat more than a half cup of food at a time. I didn’t eat a full meal in over six weeks. I was down to eating baby food for a week and a half.

There was a trip to the emergency room. Multiple visits to multiple doctor’s offices. Two ultrasounds. Two cat scans. Chest x-rays. A colonoscopy and endoscopy (on the same day). More blood drawn than I can count. The possibility of kidney stones, colon cancer, stomach ulcers, endometriosis, adhesions from my surgery two years ago, ovarian cancer. And every test, every possibility came back negative. We don’t know what the hell is wrong with you, the doctors seemed to say, over and over.

I was starting to think I would never feel well.

Notice that sentence is in the past tense. Because now, I know. And now, I feel much, much better. Gloriously better. Finally.

I have a diagnosis: celiac disease.

What the hell? I'd never heard of it before two weeks ago, but it seems I've had it all my life. And apparently, so do a lot of people, since everyone I know seems to know someone with it. The only reason I heard about it is because two friends of mine separately heard a report about it on NPR a few weeks ago, this mysterious disease with my symptoms that’s terribly underdiagnosed in the US. Both friends heard it and thought of me. And then I asked a doctor about it, and she did a blood test for it. And now I know all about it.

What is it? It's a genetic intolerance for gluten, and it has apparently been damaging my small intestine for years. Silently. Or at least in language I didn’t know how to recognize. For various genetic reasons, my body reads gluten as a toxin, and attacks it. And then the gluten attacks my small intestine, which means that I don't absorb all the vitamins and nutrients I should. Leaving me with a perpetual exhaustion and dragged-out injuries from a car accident and daily headaches, as well as a dozen other small ailments that all make sense now. Everything makes sense now. They think now that the surgery I had two years ago woke it up. The car accident set it babbling in my body. And the virus I caught this year finally made it scream at me in the form of horrid pain/lack ofappetite/weakness/exhaustion/brain fog. But no longer. Never again.

As soon as I had my blood drawn, ten days ago, I cut gluten out of my diet. And that’s really fricking hard, it turns out. Gluten is the elastic protein in wheat, rye, barley, triticale, spelt, and possibly oats. So that means bread, cookies, pies, cereal, cinnamon rolls, pasta, and oatmeal. That’s hard enough. But it also turns out that gluten hides insidiously in almost every processed food, disguised as modified food starch, distilled vinegar (they pour the vinegar through wheat), hydrolized vegetable oil, caramel color, dextrin, and even natural flavors. I have to read every box, decipher every food, ponder every bite I eat.

[2007 addendum: everything shifts in this gluten-free world, and all for the better, as awareness increases. Distilled vinegar is fine. That's an old myth, it turns out. But when I was first diagnosed, all the standard literature said to avoid it. Caramel color made in the US is fine. But when it's made outside the US, beward. Again, we have to be careful.]

So many people have said to me, "Oh, my god, I'm sorry to hear you have this." But not me. I take this as a challenge, an adventure. And it forces me to do more fully what I already started this year: eat organic food, close to the ground, whole and nourishing. Oh darn. I’ll be even healthier because of this.

Here’s the amazing part. As soon as I cut gluten out of my diet, the same day, I started feeling better. The pain diminished. I started to eat a bit more food at one time. I started to feel more clear. Every day that passed convinced me more. On the third day without gluten, I looked up and realized I was clear. It was as though I had been wearing smudgy contacts for years, and someone had just cleaned them for me. I’ve been in a brain fog for years. Years. And now, I feel clear.

And now, ten days out, I feel infinitely better, not only from the past three months, but more mentally clear and energetic than I have in YEARS.

And now, I’m eating normal portions. The physical feeling of hunger returned five days after cutting gluten out, and it came roaring back. I was HUNGRY! Now, I’m hungry all the time, eating a little bit of food every three hours. Last night, I roasted an organic yam, which I mashed up with walnuts and golden raisins. It tasted so good just now. God, I love food. I'm happy to have it back.

And for a year and a half, after the car accident, I had a crushing headache every day. Every day for a year and a half, except three. But now? Now I haven't had a headache in ten days. Hallelujah.

By the time the blood tests came back positive, on Friday, I already knew what was wrong with me. The science confirmed what my body told me, clearly. And it’s such a relief to finally just know what has been going wrong. And not just these past few months, but for years.

It’s going to be a few more months before the damage to my intestines is repaired fully. I’m still in a bit of pain, but low, grumbly. Everything’s sensitive, and I’m still being careful. But even now, I have more energy, clarity, and enthusiasm for life than I have in years. The doctors say that within a year, my intestines will completely repair themselves, if I don’t eat any gluten at all. If I feel this good after ten days, what am I going to feel like in a year? It’s possible that I have never really met myself.

I feel reborn this spring.

So this means I won’t be able to eat a pain au chocolate in Paris. Sunday cinnamon rolls in Sitka. A crusty loaf of whole wheat cider bread from Macrina Bakery. A chocolate cake for my birthday. A Top Pot doughnut. Or a bowl of oatmeal. Ever again. I’ll have to be vigilant about my food, always. Eating out will be nigh well impossible in most places. Bummer. But if it means I'll never have this pain or lethargy or brain fog again? No problem.

Much love and a loaf of gluten-free bread,