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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5 responses

  1. I could not agree more! You are not a food. Every time I ask about ingredients at a restaurant for my mushroom allergy, everyone asks if I am gluten free. It’s a trendy question.

  2. You made me laugh!!! I’ve read your blog for a while, because I too, am allergic to weird stuff. This week actually, I’ve become allergic to everything. True. I can’t even eat candy anymore. So, I showed up at the ER. “What brings you to the hospital today?” “I can’t eat anything without getting a partial or full anaphylactic reaction.” “Ok, so what are you allergic to?” “Everything.” “Can you list them for me?” You can imagine where it goes from there!

    I actually have started a blog- because I have seen how much it can do from reading your blog. I, too, have friends and family far and wide, and not all of them read Facebook, and even if they did, nobody wants all the details there- it’s just not the right forum. So, now you know another reason to write your blog- to kick a 40 (oh, wait, 41- it was my bday last week) year old woman from Vancouver in the pants and get her into the blogosphere! Thank-you Cindy.

    A funny thing on the theme of your entry today though. I’ve actually labelled my blog “A Walking Allergy”. This is how my friends introduce me. “Hey- this is my (fabulous/wonderful/awesome) friend Karen. She’s a walking allergy.” Even before things got completely insane 2 years ago, I was a walking allergy. It’s defined part of me for a LONG time. In one way, it’s a nasty label, but in another way, it makes light of the fact that my allergies are life threatening right now. It makes it easier to explain why I can’t go out, can’t have people over, etc. etc.

    I haven’t made my posts public yet, because they’re way out of context to people who don’t know me. If anyone has gotten deep enough into your blog to care, they can check it out at awalkingallergy.wordpress.com. The entries are password protected with KEWN. Once I’ve had a chance to white about myself and my history, I’ll open them up- so that others can benefit from my experiences, as I have from yours. Thanks again Cindy!

    • Thank you, Karen! I’m so honored that you’ve shared your story with me and my readers, and that you’ve found comfort in a blog of your own.

      The first time I went to the hospital after my allergies flared up, I brought the doctor’s test results with me. It was under a month after I’d gotten them and I hadn’t memorized the list yet so I kept it with me at all times. Lucky, too, because when the nurse asked what I was allergic to, and I said “too many things to name” I responded to his quizzical look with a piece of paper that literally acknowledged the severity of my allergies. He said, “this is…wow…” Like, of course the conversation I want to have when I’m trying to not die is how my medical case is not usual. So I totally relate, though I understand your allergies are even more extensive!

      I hope with all my heart that you have a speedy recovery and finally get answers! I’m sure there will be a day again…maybe not soon, but someday…where you can eat again. I’m pulling for you.

      Thank you for sharing your blog. I look forward to reading it and supporting you as go through all this.

      Oh, and happy birthday!

  3. Pingback: Gluten Sensitivity — Not A Real Thing? | allergyepisodes

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