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04 August 2005

when you're feeling glutenized, try a picnic


picnic, originally uploaded by shaunaforce.

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?

Arrgh.

(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.

12 Comments:

At 10:54 PM, Anonymous naiah said...

*tee hee hee* I have a coolpix, too (5700)

Sounds like a great evening, and gluten or not your picnic soulnd like it was to die for! Yum!

Next time we're together, you'll have to explain what gluten *is*, why it makes you sick, and how you found out that was it...It's ok, I'm all about the geeking out. Geekery of all sorts is welcome.

 
At 1:28 AM, Blogger chubbiegirl said...

arg. i feel for you, gfg. i really, really do. been there, done that, many, many times. if it makes you feel any better, i found that my reactions to gluten were much more intense at first. they aren't quite so bad now (after almost 2 1/2 years). my advice to you, until you've healed up a bit and can gauge how bad your reactions truly are, is to make absolutely 100% sure that the item you are about to consume is gluten free. when in doubt, don't even consider it. i used to have a real problem with being afraid that i was going to insult people by turning down their carefully prepared "gluten free" foods. not anymore. unless i can see everything that they put in their dishes (and maybe even am there with them while they prepare it) i don't even try to eat it. i learned the hard way.

anyway, i hope you get better soon.
cg

 
At 7:42 AM, Blogger Alle said...

Hey there, love the blog. Your entry captures exactly what I'm feeling right now. Well, except that I'm on a "gluten challenge" at the moment, so that I feel even worse these days - I was only "99%" diagnosed so I have to go after that last 1% that apparently only a positive endoscopy can give. Bah. Anyway, cool blog. I'm going to check back often, especially after I (hopefully) get completely diagnosed next month and get back to my gluten-free vegan diet. :-)

 
At 8:21 AM, Blogger Shauna said...

Naiah--

Thanks. You've just given me the idea for today's blog entry. Gluten: what is it anyway?

CG: Thanks for the advice. I agree with you, and I think everyone reading should follow your wise words. Now, I don't eat anything unless I'm 100% sure. It has only been four months for me, so I still have some learning here. Thanks for being part of it.

Ainé Luisa--Oh god, a gluten challenge? Is that 1% really worth it? I can't imagine eating gluten voluntarily now. Why do they need the endoscope results? From what I've been learning, that's antiquated thinking. If you get positive blood tests, and you feel better without the gluten....

Oh goodness, take care of yourself.

 
At 11:33 AM, Blogger Drive By Fruiting said...

Your blog rocks!

 
At 6:12 PM, Anonymous Anonymous said...

I was diagnosed with Celiac Sprue two years ago (47 now). Monday I found out that my unbelievably painful, itchy, blisters and rash over my body was Dermatitis Herpetiformis or DH for short, and is a reaction to gluten. I thought I was being careful, apparently not careful enough. It's been 8 weeks since I had a good nights sleep but I seem to have it under control now. I get the double wamy with both the intestinal Celiac and now the DH to go with it. I wish I was this lucky with the lottery. Thanks for your blog. Any reading this that wants tyo know what DH is can search on it. Your "red cheeks" sound like a minor dose of same.
Jack from Philly.

 
At 7:40 PM, Blogger healthpsych said...

Just found your blog. It's great. I was diagnosed a month or two earlier than you but I am still in denial I think. The odd gluten excursion, the kick in the gastroinstestinal butt the next day ... I know the equation but I still do it...If only I could embrace it as fully as you..hopefully this phase will pass soon!

 
At 5:24 PM, Blogger ByTheBay said...

What a lovely picnic - When I first saw the picture I thought "injera!" but ooh, crepes. Very exciting. I would love to have the recipe.

PS I'm also a Patty Griffin fan.

 
At 12:54 PM, Blogger Jx said...

Stumbled across your blog while having a Bollocks to Gluten moment. Just glutenized myself while making a huge chocolate birthday cake. Forgot I was using wheat flour and scraped the bowl. I am a complete child when it comes to cake mix, and I got carried away I'm afraid. I'm sure I had it smeared all over my cheeks. Managed to hold out during the party but the cramps are kicking in now... bollocks, bollocks, bollocks, I had such a lot planned for tomorrow but you can guarantee I will be limp as old lettuce all day. Grrrr.

I've been GF since 2000. Most of the time it's fine - all cravings disappeared once I'd discovered how much better I felt without it. I can now tolerate a little here and there, so restaurants are OK again. We eat a lot of Indian food as my husband is vegan, and there is plenty for both of us in most Indian restaurants. Keep your chin up, chick - it gets better, I promise. At first you feel like it's taken over your life, but now I'm so casual about it that even my best friends forget I have weird dietary needs. Dammit, even I forget! Bollocks again!

 
At 11:03 AM, Blogger Anastasia Burke Miller said...

Hey Gluten Girl,

Great blog. I need your help. I am not gluten free (after reading your blog, I feel so blessed to be able to eat what I like--what a gift--and kudos to you for sticking it out).

My son is on a college rowing team and I am helping to prepare food for an upcoming regatta. This is sort of picnic situation, but the food has to be very high energy because these kids are rowing, an exhausting and demanding sport.

Can you offer me some suggestions on picnic food for the gluten free kids that will give tham a lot of energy, but also make them feel healthy (as well as loved and appreciated, rather than an annoyance and an inconvenience).

I will check out TJ's list, as well.

Any help you can give me will be very appreciated, by both me and the rowing team of Willamette University.

Thanks!

Anastasia
burke-miller@mindspring.com

 
At 11:49 PM, Anonymous Brandy Sanchez said...

I can relate to that, life has become much more inconvienant these days I'm always upsetting people in restaraunts and it takes me forever to grovery shop because I have to read every label.Booo! But I recently celebrated my 24th birthday at my best friends house and she went out of her way to prepare me a gluten free meal an it tasted wonderful! I felt so loved that she did that for me and I didnt get sick on my birthday which is awesome! I'm happy I found this website, I can totally relate.

 
At 11:08 AM, Anonymous Sarah (GF vegan) said...

Hi Shauna, I've just stumbled upon this old post of yours and it's so comforting to me right now. In the last two weeks I have been glutened twice- once by an indian restaurant and once my mother-in-law. And, I may have glutened myself tonight because a product I usually buy has just added wheat to its ingredients (I noticed after I heartily had a spoonful). The frustration is that I've been gluten-free for years and all of a sudden gluten's snuck back into my life. I'm just waiting with baited-breath and hoping that gluten has not found it's way into my system for the third time this month! Anyway, thank you for your honesty and your blog. It means so much, particularly when I feel like I'm on my own and few understand how awful it is to have a gluten reaction. Lots of love x

 

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