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,
Shauna