Monday, September 8, 2014

gluten free: two years and counting

Last weekend, I got glutened pretty bad.

If you don't know this expression, lucky you. It refers to somebody on a gluten-free diet unintentionally ingesting gluten, and getting sick in some way as a result.

I'm not even sure I can pinpoint what caused it. My mom, Ambrose and I decided to go up north to visit my grandparents for the weekend somewhat last minute. I made Ambrose and I granola bars (which I believe I reacted to - likely the peanuts; Amira nuts are the worst), I brought and faithfully took my Allegra (which I take almost daily in this season - after this fiasco I checked the box and indeed, the inert ingredients include an ambiguous listing of "starch"), and my grandmother made a curry for dinner that probably had gluten.

She means well. But once you're gluten-free you start to realize that wheat is so thoroughly naturalized in our culture that it is perceived as neutral, invisible (this will sound familiar to anybody who studies race or gender - hegemony naturalizes and makes the dominant group "normal", neutral, baseline) to the point that when you tell somebody you can't eat saltines, they insist, "No no, it's just regular baking flour!". The very concept of "flour" is so stripped of association with the earth, with an actual grain, that wheat flour is perceived in this odd, stripped-of-all-qualification way. The fact that most people don't refer to their bread, crackers or pasta as "wheat bread", "wheat crackers", and "wheat pasta" illustrates the hegemony of the wheat. So those of us who opt out of eating wheat have an uphill battle - not only do people typically stock few alternatives to wheat, barley, rye etc., but the products they have with gluten aren't perceived as containing anything threatening; the gluten is invisible to them and therefore impossible to detect and avoid without outside help (eg without the allergic person peering over their shoulder).

I watched her cook a little, but my courage failed. I was so stressed already from the trip (that's another story) that I didn't want more eye-rolling or passive aggressiveness in my direction. I failed to advocate for myself. I figured the worst threat was the broth, so I read the ingredients discretely, and left it at that.

Overall, my body's response was typical. I was exhausted, itchy, flushed, constipated, depressed and anxious for days.

But there was a light in the dark: on a lark, I'd brought up my new copy of Gluten-Free Girl's original memoir to read. I was inspired, exhorted, and filled with hope and courage. Really, it was the perfect thing to be reading at that time. She is so sensual and joyous and honest, both funny and helpful, careful and creative, that the writing made me realize that though I was in a really intense gluten-bomb right then, I had indeed been being lazy lately, and I'd been paying for it, and it needs to stop.

For weeks I've been tired, so tired I just want to come home and lay on the bed for half an hour (or more) before making dinner while Ambrose runs wild in the house. I've told myself it's because I was pmsing, or because I was working a lot, or because I stayed up, and that may have contributed, but I was failing to address the obvious - I've been letting things slip. Don't get me wrong; I have never intentionally "cheated" since I realized and accepted my allergy, but sometimes I just don't ask questions where I should. On our vacation week, we ate out a lot; I chose things that seemed should be naturally gluten-free, and never mentioned my allergy to the servers. I bought mixed nuts at work (again, the nuts! Seriously, right after the oats issue, the nuts issue is what kills you when you're new to GF - and while people warn you about oats, nobody tells you about nuts!) that I've kept in my locker and have been eating regularly. Shauna, in contrast, talks about being an incredibly strong, positive advocate for herself, eschewing fries unless she was certain there was a designated fryer (because of the batter on onion rings, chicken etc. in most restaurants that have fries), ditto with corn chips, and so on - things I'd never bothered with.

It's time.

I've been on this journey now for two years and counting. I came in fighting, resisting; I've mellowed, and embraced the YES necessary, but never taking my own health seriously enough to be thorough. What is the point to that, even? Why deny myself the pleasure of fresh wheat bread with butter if I'm going to blithely have wheat starch and flour traces come in through the back door just because I've got my head in the sand?

Friends, I'm taking it to the next level.

Shauna says she does not eat anything she is unsure about, period. What a relief that would be, to just insist on wellness: It's time for the next level.

My mother, though she buys rice pasta for her house, has bought gluten-free ice cream cones for Ambrose, and makes a regular effort to read labels, still doesn't believe there is anything objective to my allergy. I tried to talk to my family when this all started - I shared my pinterest board with them that's full of helpful links about what a gluten allergy is - and I don't think she and my brother have gone through it at all, even now. They still roll their eyes. They still ask me dryly whether I would get anaphylactic shock from eating non-certified GF corn chips, demonstrating that they didn't read what I sent them about IgA or IgG vs IgE allergies. Truly, I wish I had gotten a blood test or even an endoscopy before starting any kind of elimination diet, if only to satisfy the people who need a piece of medically-stamped paper to believe an autoimmune condition exists, even though I was a SAHM of a two-year-old with no family doctor at the time, even though it would have meant significant time and stress, but I didn't. And I'm not going to eat wheat now for six weeks to satisfy my mother. I am so done. I am done being apologetic. I'd love to have my family's full emotional support about my diet, but I don't, and wishing won't make it so. (Thank God for my in-laws.) Time for the next level.

Time to research products thoroughly, to ask questions, to print restaurant cards again, to buy my favourite book about gluten allergies to lend as needed, and to blaze the path for others who will come after me. Time to step up.

I've been thinking of this poem:

Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean-
the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down-
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel down in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?


(Mary Oliver, 1992; accessed from Poetry 180 06-09-2014).


Spending a few wild and precious moments in the garden...


...picking the best tomatoes I have ever tasted with Ambrose and Sam (photos by Sam)
 
I don't have wheat, but I still have so much. The richness of the garden, and a thousand other foods. My one wild and precious life.
 
research & inspiration
My brother-in-law started a gluten-free diet last week to see whether a host of symptoms he'd been suffering would alleviate, and they did. When I heard the news, I just felt sad, desperately sad for him. I know it runs in my husband's family, so I wasn't shocked, but I was just so sad for his loss. I wouldn't wish this lifestyle on anybody. It's hard. I went to visit him at work with a GFG essay in hand, and he was so positive. He was just happy to be feeling better. He said he wasn't really bummed about the limitations - he knows life isn't over, that good eating can and will still be the norm, because he's seen me and Tony at it for almost two years now. Wow, that really touched me. How amazing, that my fiddling around with plantain cake and cassava pizza and striving for good, whole, delicious foods has edified him that way. He isn't starting blind, groping around for alternatives; he's hitting the ground with a great deal of support thanks to the fact that we've been dealing with this and educating those close to us, including his parents, who cook for him. He can text me when he's not sure whether he can order a cider at a bar. I didn't have that when I started but it is so incredibly good to be able to be that support for somebody else. This blog is just our rough little fort in the corner of cyber-space, mostly just the three of us reading and supporting each other, but maybe, just maybe sharing our struggles here can touch somebody else out there too, even though we're not a sparkly career blog, even though we don't have ads, give-aways or much at all in the way of bells and whistles. How wonderful.

If you're in the mood for trivia, I first officially posted about playing with an elimination diet September 28th 2012, and the first formal gluten-free-accepting post I can kind dates December 11th of that same year. If you missed my whole saga, I now realize that my allergy was switched on when I was pregnant with Ambrose, starting at the end of 2009, manifesting first as eczema on my face, then hands, as well as abnormal fatigue and constipation. The eczema is what pushed me to try an elimination diet, after even hard lotion bars (which I'd blogged about February 2012) weren't cutting it anymore, guided by the book The Eczema Cure, which was worth its price by far. And yes, my eczema is 100% cured :)

If you're in the mood to be inspired, Shauna's New To Gluten-Free? essay is worth an annual reread.

If you're in the mood for more information, I highly recommend Healthier Without Wheat: A New Understanding of Wheat Allergies, Celiac Disease, and Non-Celiac Gluten Intolerance by Stephen Wangen.



"I remembered the end of Molly Bloom's soliloquy, the last line of James Joyce's Ulysses... Thinking of her husband, with whom she has been struggling, Molly Bloom remembers again when they met, and how Leopold asked her to go out with him. She responded, in her mind, with, '...and yes I said yes I will yes.'" Shauna, aka Gluten-Free Girl, p. 234 of her memoir, writing about food, love, hope & saying YES to life - this chalk board hangs in my dining room, to remind me of Molly, of Shauna, of Mary, of the power and freedom of saying YES.

Thanks for listening.

2 comments:

  1. Incredible, Amy. I wish I had the courage to speak this way about dairy.

    ReplyDelete