So, Are You Gluten-Free?

I am not gluten-free.

First of all, I can eat loads of gluten (loads being a hyperbole. I can have rye, wheat, and barley three times a week each and can’t have spelt yet). I may be cottonseed oil-free, leafy green-free, fish-free, nut-free, pomegranate-free, horseradish-free, plum-free, peach-free, grapefruit-free, cauliflower-free, mushroom-free, gum-free, chickpea-free, etc., but bring on the gluten!

Oh yeah, and second of all, I’m not a food. Or the lack there of.

A cookie can be gluten-free. A burger. A menu option. Even a shampoo. Foods or products that one could suspect contain gluten can, in fact, turn out to be free of gluten.

People, on the other hand, do not contain gluten. Therefore, I’m as gluten-free as the best of them, but I’m also door-free, spoon-free, DVD-free, paper towel-free (is it obvious I’m just naming things I see in my apartment?).

I’m often asked, though, the titular question of this post: “So, are you gluten-free?” I always say, “No, I’m all about gluten, I just can’t have that bread because of x (where x=cottonseed oil; traces of nuts; untrustworthy factory; too-processed; not challenged yet, etc.).

I know it’s not meant to be a hurtful question. And most of the time, I don’t let it become one. I like to pretend I’m impervious to pain. But I’m not. And sometimes, a gnawing thought will come to my mind and I’ll recall the last time someone asked me if I was gluten-free and I just scream to myself, “No, I’m CINDY!”

Cindy.

I am a writer, a leader, an advocate, a doer, a thinker, a consultant, a reader, a TV-fanatic, a dog lover, a student, a teacher, a cook, a dancer, a rapper, a comedian, an ENFJ who teeters on the lines of ENTP. A friend, a daughter, a sister, a granddaughter, an aunt, a niece, a cousin, a person. A Jew, a New Yorker, a Brooklynite, a Brandeisian, a sort-of Angelino, a Trojan.

I’m reminded of an art exhibit I read about recently that I can’t stop thinking about. A group of people were photographed with writing on their body indicating an identifying factor, and the photos were accompanied by a caption indicating what they were not. (http://www.tabletmag.com/scroll/161489/provocative-photo-project-goes-viral-among-orthodox-students#undefined). I often ponder the questions of identity (there’s a whole rabbit hole there, and this isn’t the blog for it. Please see my other blog at www.aliceinwonderland.com for those questions #notreallymyblog), and I think some of that is because my identity often gets taken away from me.

What I mean is, I often first meet people in the context of meals. Food is how we socialize these days — especially in the Jewish community — so the first thing most people learn about me outside of a professional environment is “Cindy is allergic to lots of things (but isn’t gluten-free).” That’s fine, and my life depends on it, but there’s so much more. See above. That’s a partial list. And while I’m “the girl with the many food allergies” I’m not just “the girl with the many food allergies.” And I don’t want to be.

So why keep this blog, you ask? You, meaning anyone who’s ever had the above conversation with me in real life. For a few reasons. One, to update my family and friends on my challenge status. I neglected to mention in my “identity paragraph” (ew) that I’m a social butterfly (BH, that one’s for you, and for everyone else, it’s tongue-in-cheek). I live far away from my family and many friends, and this blog allows me to keep them (you?) updated with my progress without having to make a bunch of phone calls. Two, to keep a log for myself. I could keep a private diary, but the motivation is stronger when I know I’m accountable to an audience. This log has proven helpful as I’ve decided what to challenge, as I’ve looked back on recipes, as I’ve struggled to remember how far I’ve come. Records are important, and this is mine. Three, when I was first experiencing increased symptoms, I turned to Google because I was too scared to talk to most of my friends (though, T, thank you again for being my constant G-chat support and Benedryl enforcer). I found blogs to be helpful resources, but also primarily geared toward mothers or people who had more common allergies. I wanted to be a voice in the space for someone with multiple allergies, in their 20s, who had the allergies forever but saw them get worse. And some of you have reached out to me letting me know I’ve helped you — which means everything. When I see someone’s search query “allergy to horseradish???” I know that I made them feel like they weren’t crazy, something that’s rarely been done for me. In turn, and this is number Four, by seeing people’s queries, by interacting with readers, I feel like I’m not crazy. Someone else is allergic to horseradish. Therefore, I’m not making it up in my own life.

All of the above wins in the cost/benefit analysis of my identity issue. But. That doesn’t mean I want to be Super Allergic Cindy. I just want to be Cindy, whose food allergies are impactful but not any more identifying than someone’s IBS, cancer, insomnia, ADHD, etc. Not that those are all equal, but you get the point. Everyone’s got something. I have this. But that doesn’t mean I am this. Tener and Ser are two different verbs (thank you, Duolingo!)

I don’t need anyone to validate my scope of identity. But I would like it to be invalidated less often. And I know I’m not alone in this. So, instead of asking “Are you gluten-free?” next time someone doesn’t reach for the bread, try one of these two options:

1. Don’t ask anything, and let them not eat bread. Who are you, Marie Antoinette?

2. Ask, “Would you like me to steer clear of you with the bread because of a dietary restriction?”

Or, I guess, 3. “Do you not eat gluten/do you only eat gluten free?

Same goes for all food-related things. If you must know, ask about the food, not the person. But maybe don’t ask, and wait for someone to say something. My friend wrote an excellent piece about this on his new blog about living with Type 1 Diabetes, how we don’t know why other people eat the way they do and shouldn’t make assumptions about their habits. He’s right. And I promise, if my life is in danger, I’ll let you know.

Because I’m Cindy. And among other things, I’m the furthest thing from shy.

This is Cindy.

This is Cindy.

This is food.
This is food.

 

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Food Allergies and Communal Meals, Rant 1: Hosts

A hot topic lately has been the role of the guest vs. the host in a communal meal, when the guest has dietary needs. The New York Times covered this issue in some respects in this article and there’s a great blog post about the perils of potlucking that I discovered in September’s Living with Food Allergies Blog Carnival.

That, and the never ending Jewish holidays that have been cycling through, has got me thinking about this issue – does the host need to accomodate the food allergic guest?

I honestly don’t know. I’m not much in the way of etiquette, and I believe “to each his own” and I’m always grateful to dine with others. I mean, keeping kosher in Hollywood essentially means I’m left out of meals half the time, and I’m totally cool with that. I don’t expect my friends to bring in kosher food (though it’s extra nice when they do) and I’m comfortable bringing my own food to restaurants, parties, and homes.

Why then, am I less comfortable doing so when the issue isn’t kosher, but rather my food allergies? To rephrase: I am comfortable bringing my own food places — and I had to until very recently, doctors orders, etc. — and I’m grateful for any invitations to co-dine, and grateful when people make food I can eat even if the entire menu isn’t suited to my needs. But I’ve been noticing an interesting trend lately, and it’s got me thinking about how people tend to host.

See, almost every communal meal I’ve participated in as of late has involved a host who has been super nice about my food allergies. BUT, the host almost always asks if he or she can make a dish I am allergic to and serve it as well, or the host agrees to cook food for me, but to cook other food for the rest of the diners.

That’s fine. That’s nice. But…I don’t quite get it. The reasoning is twofold: 1, will there be enough food, and 2, what if they make a mistake?

I sort of buy the first reason. My diet isn’t what people want to eat, but they enjoy my company, so they invite me over. It’s nice and I’m grateful, though I do sort of wish people would be more creative in their kitchens — it’s fun! And then I don’t have to be uncomfortable or scared but too polite to say anything!

I don’t really buy the second reason. If you’re scared you’ll make a mistake, wouldn’t it be better to only cook food I can eat? Making two separate meals is extra work, more expensive, and doubles the likelihood of cross contamination. So many people have opted to do this when hosting me, though, that I feel like I’m missing something. As Carre Bradshaw would say: I wonder, is the fear that you will make a mistake, or is the fear that the food I can eat won’t taste good enough for the rest of the guests?

Look, I’m totally fine eating special food, not sharing, and delighting in delicious food other people are too scared of. Good company is more important anyway. But I feel like there’s a disconnect. People think they can’t make the right food for people with food allergies. I don’t believe that. A friend of mine’s mother once said, “Look, there are a lot of things I say I can’t do that I know I could do. I just don’t want to. Do I think I could learn how to work the thermostat? Sure, I’m smart. But would I rather just put on a sweater? Yes. So I say I can’t use the thermostat. It’s just easier.”

I think hosts feel that way about food allergies. Trust me, it’s not that hard to cook differently. It’s annoying, it’s daunting, but it’s not hard. Making green beans isn’t any more difficult than tossing a salad — in fact, it takes less effort! But if you always make salads, branching out to green beans seems hard and intense. We’re creatures of habit. We don’t like to break molds.

People with food allergies — and I’d venture to say, especially parents of kids with food allergies — are good at adapting because we have to. We learn to cook for ourselves and for others. I try to accomodate every dietary need of anyone who comes to my home for a meal, even if it’s a diet for fun/weight loss/choice/etc. I’ve almost always succeeded, and in the cases where I haven’t been able to, it’s been the rare instance of my allergies mixed with a squash sensitivity mixed with Paleo. Maybe I could have done it, but considering this was back when I was on the super duper strict diet and basically only eating squash, I didn’t have enough foods to avoid corn for the paleo eater. But with allergies, sensitivities, diabetes, and new babies, I find I’m able to make a menu work. Yet, I can imagine that someone who isn’t used to making substitutions would find the task too difficult.

I don’t know whose responsibility it is to prep for the food allergic person — I think it is the food allergic person’s, because you can’t ever trust that someone isn’t going to make a mistake, and you always need to be prepared to a)get sick and b)avoid foods. It’s best to eat a little bit in advance if you’re attending a meal elsewhere, just in case you discover your host totally forgot about your onion powder allergy, or can’t quite remember the ingredients to the sauce but thinks they used the bottle in their trash and nothing else, maybe, but the ingredients in said bottle are cryptic and involve words like “spices.” Plus, if you don’t look out for you, you can’t expect others to.

However, I think it would be cool if hosts took on food allergies as a challenge and tried to make a meal that works. It’s not like the food allergic person is moving in and eating every. single. meal. with you. It’s one meal where you have to adjust your menu. Maybe you’ll find something cool. Maybe now isn’t the time to show off your really cool cod in mushroom sauce with praline topping dish that’s become your signature. Maybe now is the time to explore your kitchen and show off your creativity.

A friend recently had me over for a meal that only involved foods I could eat, except for a non-organic veggie platter and one kind of chicken (though she just happened to be making two kinds of chicken anyway and no one was going to eat both kinds). She appreciated that she got to play in the kitchen and make side dishes she would never have thought of. And they were delicious — everyone thought so. It would be cool to see more hosts try their hand at that exploration.

Though, I’m still grateful to be included, and still willing to bring my own food. Because ultimately, a meal isn’t about the food that’s served. It’s about the company that’s kept, the conversations around the table, and the joy of being together. Breaking bread — gluten free or otherwise — is just a way to keep our hands busy.