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.

 

Food Challenge Round 1: Cindy vs. Wheat

I went to the allergist’s office this morning for the first of what will be many food challenges. Box of whole wheat matzah in hand, I was half-nervous, half-thrilled. I thought I knew what to expect — all the research I did indicated that the food challenge would consist of the following elements:

1. Rub the food on my arm

2. Rub the food on my mouth

3. Eat the food in small bites, over the course of a couple of hours

4. Wait to see if I stop breathing/swell/etc.

It was nothing like what I expected.

The doctor called me into his office – not the examination room, his actual office, and asked me what I intended to try. He wrote down the specifics of the matzah – company name, where it was made, ingredients. Asked me how much matzah I typically eat. I said 2 pieces, though I don’t really know since matzah is a once a year type food, usually. He said cool, eat up.

I asked if I needed to stagger it. Or do it slowly. He said not to do it quickly, but however I would normally eat matzah, I should.

So I chomped away, trying not to get irritated by the loudness of my own chewing, and ate some matzah. The first bit was awesome. After that, it tasted like old whole wheat matzah, which is really nothing to get excited about.

The doctor went to check on another patient (also a misconception on my part, I had heard that there would be no other patients), and returned to find me starting the second piece.

“How is it?”

“It’s fine, but it’s not April. It’s not Passover. Matzah is like fine.”

He pulled out a mezuzah because we were having a seriously Jewish moment.

I asked him, “What do people who aren’t aware of matzah do their food challenges on?”

He said, “Pasta.”

I nearly spit the matzah out of my mouth. “I COULD HAVE BROUGHT PASTA?!”

He said, “Don’t worry, we’ll do pasta next week.”

HOLD THE PHONE.

Seriously, hold the frickin phone.

Was he implying that my matzah wheat test wouldn’t permit me to eat pasta?

Yes, yes he was.

I stopped eating the matzah. I asked him what the matzah test would allow me to eat and he said, “Matzah.”

“Bread?”

“Nope, come back for bread.”

“Who wants matzah?! Why do I care if I can eat matzah? It’s not April. The nurse said I had to bring in something that was just flour and water, no yeast.”

“You can have yeast. Do you want bread?”

“Uh, yeah.”

“Go get bread.”

And he called the Rite Aid around the corner and asked if they sold bread. They did, so he sent me off to buy some.

First of all, I was leaving the doctor’s office in the middle of what I expected to be a life/death event. But clearly, it wasn’t. I mean, I knew matzah wouldn’t kill me and I wasn’t feeling even a hint of sick, so I was comfortable going. Except I was nervous, because a)a lot of packaged breads have traces of other things that I can’t have and b)in LA, it’s almost impossible to find bread that is kosher certified that doesn’t come from a bakery.

I called my mom, and we discussed that, because it was a medical test, it might be possible to use kosher (albeit non-certified) bread for it.  We were uncomfortable, but hey. It’s bread, not pork, and I can’t have most oils anyway. 

I go to the Rite Aid and they had seven kinds of bread.

The first six had any combination of barley, malt, sesame, and flax — all of which I have to challenge on their own.

The last one didn’t seem to me like it would work. It was Hawaiian sweet rolls from a company I’d never heard of or seen — King’s Hawaiian.

I read the ingredients. Out loud. All ok. I read them again. All ok. And I spot a certification symbol.

I will be eternally grateful for this bread.

There is a God, by the way. And He is awesome. I mean, He has to be. This was magic bread that I had never seen before. With a symbol I had never seen before. Without any of the ingredients all the other breads had.

I bought a package and went back to the office, and continued eating. I told the doctor my sad tale about not finding a good selection of breads, and he wasn’t surprised,but he was surprised the bread was kosher. (I could have a PhD in package-reading, I think).

And I ate it. And it was delicious and successful. I can eat Hawaiian Kings bread! After waiting about 45 more minutes, the doctor determined I had no swelling, hives, or breathing issues, and I was ready to go.

But not before I asked him a BILLION questions. Because I wanted to eat pasta, and I was not leaving questions for the nurse (who is lovely, but obviously my case is not standard).

Q. Can I pretty pretty please try pasta at home? It was the only food I ate as a child, practically. I’ve eaten it my whole life. When I could eat nothing else, I ate pasta. 

A: Yes, if I promised to eat it during his office hours so that he could conveniently take care of me, and just this once. But if I called him after hours about the trial going wrong, I’d be on the bad list.

Q. Can I eat other breads, or only King’s Hawaiian?

A: Only King’s Hawaiian, unless I bake the bread myself, or speak directly to the baker. Packaged breads are a no-g0. Bakeries and restaurants must be called.

Q: Can I eat cookies, cake, cereal?

A: They all have to be challenged separately, but I am free to make anything myself so I can monitor the ingredients.

Q: This will take basically a year, then, if I have to test every product in his office?

A: Yes, and he’s insulted that I don’t want to spend the quality time with him.

Q: Is it the same thing for all foods, or just wheat? Meaning, when I try olives, does that mean I also have to try olive oil separately and vice versa?

A: Yes.

Q: How does one try malt, which is in everything?

A: I bring in a product that has malt that I can have every other ingredient, no question. And then keep bringing in malt products.

Q: When does it end? How can I try every product in the world under his supervision without being crazy?

A: That’s a good question, and we will be realistic, but let’s start with different categories and see.

Q: How often can I challenge food?

A: Once a week, at least 24 hours between.

Q: Can I eat things processed with wheat or containing traces of wheat?

A: Yes

Q: Can I immediately incorporate the foods I tested negatively to that I had previously avoided?

A: Yes, but in small portions because I can’t overdo it. And yes, I can try them all at once. For instance, I can eat rice and potatoes in one meal as long as I don’t eat too much rice or too many potatoes.

Q: Do I have to stick to the 3 times a week rule?

A: Yes, and organic, and peeled.

Q: What about no processed foods or things I don’t make myself?

A: If they don’t contain a challengeable item, eat them.

Q: Herbs and spices?

A: Fine, if I tolerated them in the past.

Q: What foods do I not challenge?

A: Anything that I tested too high for (hazelnuts and fish), anything I have reacted to knowingly (walnuts, blueberries), anything that is not important to me.

Q: Can I eat at restaurants?

A: If I speak to chef or know the chef/owner. Same with bakeries, etc.

Q: Can I eat at my cousin’s upcoming catered bat-mitzvah on a weekend in NY?

A: Absolutely not. I cannot try any of these things in NY.

Q: Can I eat processed meats like hot dogs or deli?

A: Not without challenging them, and I have to challenge each company’s meats.

I think my challenges are different than the ones I’ve read about because I am an adult with a history of success with these foods, and a history of mysterious reactions. Most of the available information is for children, and children outgrow allergies quicker and have less of a case of, “But I’ve eaten it before.” Twenty fours years of pasta is good enough to try it at home, but given the mysterious reactions that were happening daily a year ago, I have to assume there are some products that just don’t work for me. Some mixtures, or manufacturing plants, or ratios, or what have you.

My new boss, like my old one, is being really nice about the fact that I will have to spend 2-3 hours a week at a doctor for the foreseeable future (though I am trying to get 7:30am appointments). So that’s good — I think I’ve determined that I should only ever work for people named Jason, because I really shouldn’t be this lucky twice in a row. Also good — since every processed cookie or whatever will have to warrant time off and I’m a workhorse, I’m pretty sure I won’t be getting aboard the junk food wagon any time soon. That’s a step toward a healthy lifestyle.

It’s a little irritating that I can only eat this King’s Hawaiian bread, but it’s delicious bread — seriously, I almost cried when I ate it and I have been craving more all day, and not just because it’s the first bread, but because it’s damn good. I called two of the bakeries I like here — Bagel Factory and Got Kosher — to figure out if I have to bake challah, and Got Kosher’s is ok. Bagel Factory’s enriched flour included malt and barley.

And yes, I called up two stores and said, “What do you enrich your flour with?” and yes, it came off suggestive, and no, I’m not ashamed.

Many thanks to my mom, who spent my childhood calling up restaurants and companies to see if I could eat their food.  Having made two of those calls, I’m already worn out, and I know there are more to come. But hey. I’m educating the public and learning about food myself.

But for now…I basically got the greenlight on Captain Crunch, which was my go-to at the start of this madness. So if you’ll excuse me, the Cap’n and I have to go make it happen.