Saturday, May 15, 2010

Dude. My sinuses are up HERE.

As many of you know, I went to the Bastyr Clinic about a month ago to see about getting off the nasty sinus infection rollercoaster I'd been on since early December. On the first visit, I got some helpful tips of the variety I'd expected: a few foods to avoid because of their known effect on the sinuses, an herbal supplement, a referral for acupuncture. Great. Good. I'm on it.

Except these things didn't solve the problem. So on the second visit, they started asking other questions. About stomach aches, and digestion, and ... Um, excuse me? I know I wanted someone who would treat the whole person and all, but I kind of make it a point not to notice certain aspects of my digestive system, let alone discuss them with strangers. Yet discuss them we did.

Two uncomfortable visits and one blood panel later, I got hit with a diagnosis I never saw coming: celiac disease.

Suddenly the doctor's advice went from "try to avoid" things like dairy and wheat, to "You can never have gluten again. For the rest of your life. Because IT CAN KILL YOU." (The doctor may or may not actually have spoken in all capital letters.)

That's right, gluten can kill you. (OK, maybe not you. But me.) I'll spare you the details, but apparently for the 1 in 133 (give or take) Americans who have celiac disease, the smallest amount of gluten triggers an autoimmune response that slowly but surely trashes your small intestine. Left untreated, this can lead to all kinds of ugly consequences, including other autoimmune diseases, cancer, and the inability to absorb nutrients. Any of them. Period.

Since it can take as long as 11 years to get an accurate diagnosis for this--and for many, these are years that can only be described as holy hell--I should feel lucky, right? My symptoms aren't that bad. And any damage done up to this point is likely reversible.

As long as I don't eat any more gluten. Ever. Which is fine, except that gluten is in a lot of things I usually eat. Like, ohIdon'tknow, EVERYTHING. I can't even make out with someone who's recently had a doughnut (or--ahem--a beer) unless he's brushed his teeth. And that better be gluten-free toothpaste you're using, mister. (I swear I am not exaggerating.)

So right about now, my rational self is celebrating. I'm going to feel better! she says. Possibly better than I've felt in a decade! I'm already eating healthier, feeling more energetic, having fewer mysterious headaches and stomach aches. Things I thought I'd lost forever--like a sense of humor, a longer fuse, and patience--are slowly returning. The panic attacks have stopped. Plus? It's a totally manageable disease, and now that I know what to do, I'm far less likely to end up with complications like osteoporosis and seizures! All good news!

My other self--the one who likes instant gratification, comfort foods, and grabbing takeout when she's too tired to cook--would like to punch the ridiculously chipper glass-half-full self in the eye. That one is grieving her former, less complicated life. At least some aspects of it. She keeps saying things like: But what about biscuits?! Burger King Whoppers! And--oh, god--Naaaaaaaaaaaaan!

I'm sure the rational self will win out eventually, but for now it's about 50-50. So if you see me around town (I can usually be found in the specialty foods section of grocery stores, squinting at labels), feel free to offer me some sympathy and a listening ear. Just don't offer me a doughnut.


  1. I have TWO, count 'em, TWO listening ears. :)
    Plus? No worries, I ate the doughnut already.
    Because gluten won't kill me. :)

    But SWEET BABY JESUS! I am so so so overwhelmed with what you are going thru that I can't even begin to IMAGINE how overwhelmed you are.

    On a happy note, I am STOKED the panic attacks have stopped, that you'll be getting those much needed sense of humor, patience and longer fuse back from Glutenland where they ran off to.

    I hope my friend feels better and has more patience with the glass-half-full self, because really, she is the one that will probably come out on top. Those chipper bitches always seem to. :)


  2. I've known another person who's dealt with a celiac disease diagnosis. I've asked him if he has any advice for you.

    My faith in doctors' diagnoses has been shaken over the years. I very much hope you find something that helps you with as little disruption and uncertainty as possible.

  3. Holy moly, Dear! What a shocker. I agree with both parts of your brain. You are doubly-right!
    Love, Carolyn

  4. Wow, I can definitely see both sides -- relief and clarity on one hand and then utter shock and dismay (and probably some grief) on the other.

    My story is very similar to yours (as I think you know), though I was never tested for celiac. Though I've gotten lots of improvement through avoiding gluten (but not like the plague) and other trigger foods, you are making think that I should get tested. :)

    Also, what a trip to hear you talking about Bastyr and Dr. Donovan (we took my son to him to rule out celiac a few years ago).

    I am wishing you the best on this journey -- I know there will be ups and downs. Also, if you want any gluten-free tips, etc., please feel free to email me. I've been avoiding gluten for a few years now.

  5. Short confession - at first, I thought your story was about a doctor ogling you in an inappropriate manner, judging by your title. Haha. Relieved to discover otherwise.

    Can't relate to the gluten discussion, except to be elated for you that you have found something that works. Just learn how to work it - and enjoy life. YOU are still the final judge of your body's quirks and problems.

    Your grandmother Greene, as you know, was on dialysis for, oh, at least 8 years, during which time she went on a dialysis cruise, among other things. I still chuckle to recall her timing her departures from the diet (she loved lobster) on Sunday night (before Monday a.m. dialysis).

    There's always a way.

    God bless,

    Uncle Doug

  6. So sorry to hear of your diagnosis, but can I recommend two books that will help you feed yourself with style? The first is called "Nourishing Traditions" by Sally Fallon - part cook-book, part treatise on healthy eating. It is my absolute bible. Particularly check out the section on grains. The second book as called "Red Velvet & Chocolate Heartache" and it is a cookbook that has radically changed the way I bake. I LOVE to bake, but now almost EVERYTHING I make is gluten free. (Not sure if this is available in the US, so e-mail me and I'll send you a sample recipe or two...or I can bring a copy when I visit Seattle in July.) You're going to feel like a million bucks once you get into it. Oh...third interesting book is available as an e-book and it's called P.A.C.E. by Dr. Al Sears. It's seemingly about exercise and weight loss, but there's great info about why we aren't really equipped to eat grans. Good luck!

  7. Thanks for the tips, Tricia! I just ordered the first book you mentioned; I think you're right that "Red Velvet & Chocolate Heartache" isn't available in the U.S. Too bad, because it looks really interesting. I'd love to sample a recipe or two if you don't mind sending them. I couldn't figure out how to email you from your profile, but if you happen to check back here, mine is