Food Challenges Rounds 25 & 26: Cindy vs. Peanut Butter (2tsp) and Rum

This week, I completed one year of food challenges! When I started this process a year ago, I thought for sure it’d be quick, that I’d do a few food challenges, and get a nice amount of food back into my life pretty quickly. When my doctor told me he thought it’d be a good year before that happened, I was totally sidelined and confused. Now that it’s been a year, I am grateful for all the foods that are back in my life, but also still running through the list. Fine, so I didn’t do a challenge every. single. week of the year — had to take breaks for holidays, anaphylaxis, and important work events — but 26/52 is a lot. I imagine I have another year left to go. And honestly, it’s not so bad. Keeps my weeks interesting, it’s good to check in with the doctor and get my questions answered regularly, and when I succeed, it’s great. There are some foods I’ve incorporated less than others (I really should eat more barley…but I imagine I will come the winter, something about barley in the summer seems weird even though the weather doesn’t change here), and some that have become staples again (wheat, sunflower oil, lentils). I’ve learned a lot about my body in the last year, about food in general, and about courage. I still get scared every week, but I keep going back. And when it’s fine, it’s really fine. And when it’s anaphylaxis, I just shake a lot and get really cold and feel out of it for a week. That’s what blankets are for, right?

Anyway, so my last two food challenges went really well. So well that the blogging need wasn’t that immediate. I can now have two teaspoons of peanut butter, which is awesome. It’s still not enough for me to actually eat – I can’t seem to figure out the proper occasion for two teaspoons of peanut butter, and am scared I’ll start eating it and want more and get sad, plus I can’t eat crackers that I don’t make myself and that’s not worth two teaspoons – but I will try more soon. I have to take a break to make sure I don’t overdose, so those challenges will come down the road.

After the two teaspoons of peanut butter, I was going to try wine vinegar. But I couldn’t really settle on a recipe with wine vinegar that a) would be normal at 7:30am and b) I’d actually make often. People often get annoyed when I can’t eat wine vinegar, but I never liked the taste and never cook with it myself. Still, I was going to try it to succumb to the peer pressure.  But I couldn’t get to the kosher grocery store in time, and Ralph’s didn’t have any kosher brands. PS, I hadn’t been in Ralph’s in forever, and can I just say, that place is SUPER BRIGHT. Like, I don’t know how people can even see properly after shopping there. I have become a Whole Foods/Farmer’s Market Snob. Penn and Teller would hate me. That makes me question a lot of things. I don’t want Penn and Teller to hate me. I don’t want the version of myself who used to traipse around the Whole Foods in Union Square angrily and bitterly to hate me, either. But that girl could eat more, so what does she know?

Anyway…

I couldn’t find the wine vinegar in the brightly lit supermarket. I decided to wander around trying to find something else to try. This is maybe the most depressing thing a person with my allergy list (aka me, I’m unique that way) can do. If you can’t have processed food and you can’t have lots of unprocessed food, a supermarket is just miserable. I looked at all the aisles, all filled with things I couldn’t have, and got overwhelmed by how much there was to try. Did I try another cereal? No, aren’t Honeycomb, Kix, Chex, and Captain Crunch enough? What kind of person needs Frosted Flakes (omg, me). Did I try Entenmann’s donuts? Almost, but I could just picture my doctor’s face when I brought those in, my mother’s reaction to that phone call, and just the general public’s “what’s wrong with you, who needs donuts?” collective sigh. And also I was scared to read the ingredients and see cottonseed oil and know I could never try them again. (Just googled the ingredients for glazed pop ’ems which would be the kind I’d try, and they have xanthan gum in them. So fuck Entenmann’s. They are not on team Xanthan Gum is evil).

I thought about trying other sauces. Maybe a mustard with “spices?” Maybe a different kind of pickle? But all of those foods seemed useless to me in my life. And it was close to 11pm and I was getting tired. So I decided to try white wine. I headed over to the alcohol section, but I couldn’t decide which wine to try. Pinot Grigio? Chardonnay? It’s been so long since I had white wine, and the last one I had was Moscato (which I couldn’t find) that I just got overwhelmed. Plus, if I can have red wine, then is it that important that I have white wine? And then I realized — RUM!

This year on Cindystock, we gonna sip Bacardi like it's my birthday.

This year on Cindystock, we gonna sip Bacardi like it’s my birthday.

The last few times I’ve been at bars, I’d had too much wheat for Heineken and the bars didn’t have corn or potato vodka. Not that I’m the biggest drinker, but I do get “drinks” for work, and it’s frustrating when I do go out to have to look through the menu and not drink. Especially when I make someone else be the designated driver, or pay for a cab. That’s just rude to someone else’s night. But rum…rum is on every menu. And I didn’t think I’d be allergic to it. So I grabbed a bottle of Bacardi for myself and one for the doctor and nurses as a thank you for a year of food challenges gift, and 8 and a half hours later, had a rum and coke in the doctor’s office.

I passed! Not surprised, but very happy.

Also, after the overwhelmed feeling the night before and the stress of a food challenge, it was sort of nice to have a shot and a half of rum first thing in the morning. Not to become an alcoholic or anything, but after the panic and fear before every food challenge, getting a little relaxer in is sort of nice.

I celebrated that night at karaoke, where I rapped like nobody’s business. I’m getting better at that, now that it’s my go-to check to see if I’m breathing. I’ll be Nicki Minaj yet!

On Monday, I’m going to re-challenge some foods I stubbornly believe I can have but just overdosed on at my last challenge of them. Olive oil is Monday (scared), onion powder the week after (scared), and pasta after that (petrified, mostly because I’ll be so mad if it doesn’t work).

FOOD CHALLENGE TALLY:

Cindy: 18

Allergens: 7

Undecided: 1

Up Next: Olive Oil, take two.

Vote for Breakaway Bakery, the best kosher dairy-free, peanut-free, gluten-free bakery in LA!

My friend’s aunt runs an amazing bakery in LA that’s kosher, gluten-free, casein-free, dairy-free, peanut-free, wheat-free, gum-free, whole grain, organic, transfat-free, preservative-free, and almost soy and tree nut free (some of their flours are processed in facilities that process treenuts and soy, though the equipment is cleaned before the run of the flours they use — allergens may still be present in the air around the flour, though. None of their products contain soy or treenuts).

The baked goods are delicious, and the owner is lovely. She’s well-informed and responsive to questions. And it was her informing her niece about the dangers of xanthan gum that helped her niece realize my corn bread reaction was likely to the xanthan gum in it. Niece tested, doctor approved.

Anyway, the bakery — Breakaway Bakery — is competing in Intuit Go Payment’s Get Business Growing contest. Please take a second to vote for them and grow this business. It’s great to have a local bakery that meets these needs, but by selling their goods in other areas, more people will have access to the baked goods they need.

And yes, I believe baked goods are a necessity. I’d much prefer buying muffins to baking my own.

Click here to vote. Click here to visit Breakaway Bakery’s website.

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Go Away, Stupid Allergies

The following is an essay I wrote i fourth grade, on November 29, 1995. I feel pretty similarly right now, in this moment that marks one week since xanthan gum in sunscreen took over my body and decided to be mean. Except the 25 year old version of me wants to use all sorts of words the 8 year old version didn’t know yet.

“Before I start let me explain that I am very allergic. It didn’t bother me much until one day when I came home from school…

‘Hi Ma! What’s for dinner?’ my sister Judith asked.

‘Hi Ma!’ I whined.

‘Hi girls. Judith, I don’t know. Cindy, is something wrong?’ my mom asked me kindly.

‘Yes,’ I cried.

Then I burst into tears.

‘What’s wrong Cindy?’ my mother inquired.

‘My stupid allergies. I am very anoyed [sic] about them,’ I told her.

‘Oh. Judith, please leave the room,’ my mom said. ‘Why are they annoying?’ she asked.

‘People make fun of them, they tease me about them, they wave the foods in front of me, and they treat them like a joke. How would they like it if they had allergies, and I did what they do to me?’ I dragged on.

‘Well honey, I’m sorry about that. I don’t think they’d like it,’ she replied helpfully.

And for about an hour, I cried and cried and talked. The only other thing I remember is this:

‘Why is it me? It’s not fair. Why me?’ I complained.

‘Because that is how God made it.’

And that is the longest time I cried nonstop. And sometimes, when I’m alone, I still cry.

The End”

Now, it’s less that people make fun of me and more that I can’t eat without something going awry. And it’s incredibly frustrating to have to choose between eating and getting sick. The new diet – where I only eat foods I cook myself, absolutely nothing processed, only organic fruits and vegetables that are peeled, and only the same food three times a week – was working, and I was getting into the rhythm and feeling healthier, albeit busier. But then I used sunscreen with xanthan gum, and anything I touched after that had the xanthan gum on it and I kept reinfecting myself in this xanthan gum cycle. It’s been a week of benedryl every few hours and I’m getting annoyed. And tonight, anything I eat gives me a reaction. Not a severe one – hives on my arm, mild throat swelling, ear itchiness, headache – but nonetheless, a reaction and I’m on this new “take care of myself” swing so I’m taking the benedryl.

So “Go Away, Stupid Allergies.” Or, “F*** you, xanthan gum. And you too, histamines.”

Thanks a lot, Xanthan Gum.

Last night, I was exactly one week into my new 48-food free diet.  And it’s been interesting, lots of corn, lots of quinoa, lots of chicken.  And only a couple of allergic reactions, and they were pretty minor.  (Now on the list to self-test: goat cheese, basil, and thyme).

They were pretty minor, that is, until last night. When I decided to try a gluten free corn bread mix.  And one that made me really excited, because it’s free of every popular allergen and dedicated to raising funds for allergy research, and that sounded like the perfect mix of sensitivity and cross-contamination-free product and love that I really needed.  The mix, in case you’re interested, is by Micah’s Favourite, a gluten free baking mixes company.  And for all I know, it’s the most delicious stuff ever, so I’m not slamming Micah’s.  But did it the mix send me into a tizzy?  In a word – yes.

I had made myself a light dinner – baked sweet potato with salt, pepper, paprika, and grapeseed oil; polenta  lightly fried in grapeseed oil and flavored with salt and pepper – and was baking the corn bread for a little additional starch.  Because until last week, I ate pasta at least three times a week for dinner and/or lunch, plus a bagel a couple of morning a week, and a week without wheat was like the worst Passover experience possible.  A girl needs her starches.

So I’m fine with my sweet potato.  Fine with my polenta.  Corn bread finishes, I cut a square, and take off that gorgeous little extra cripsy piece on the corner that got just a little browner than the rest of the bread, and put it in my mouth as I settle in to catch up on some Grey’s Anatomy.

BOOM.

It’s like the craziest migraine ever.  I think my sinuses are going to explode.  I reread the corn bread box.  Same ingredients as the polenta, save for some sugar I’d added, some oil I’d added (oh but I’d just eaten that same oil), water, and xanthan gum.  But I don’t know what xanthan gum is.  So I do what I always do.  I believe it’s psychosomatic and that I’ve gone crazy.

Note: I may be crazy, but not when it comes to food allergies.  The doctor took the picture to prove it.  Because I didn’t believe him.  Because so many people have failed to believe me throughout my life.  Thanks, guys.  Super appreciate it.

I decide to take a shower to calm myself down, plus the steam tends to help with breathing.  And the super hot water cleans the allergens out, sometimes.  It’s my go-to when I’m not in the mood to take benedryl yet again, and for minor reactions, it’s worked.  On the way to my bathroom, I feel this thump in my chest.  Like someone has hit  me with a baseball bat.  This has happened once before, in August, the one time I went to the hospital for this whole thing, and the moment I realized I’d developed some new allergy.  I ignore it.  And run to the bathroom to shower, and suddenty my stomach is displeased.  And here I notice I’ve gotten bloated from LA to NY, and have developed a hive on my stomach and two blotchy rashes on my neck/chest/clavicle area.

You’re probably hoping I decided it wasn’t psychosomatic and took benedryl or used my epipen.

Yeah, we don’t know each other very well yet.

I shower.  Try hard as I can to remember the lyrics to Nicki Minaj songs, because in my spare time, I’m learning to rap like her.  I know the words to Nicki Minaj songs in general.  But not then.  I couldn’t even get the tune.  I had no clue what was going on, but I knew I liked the water.

Finally decided to get out of the shower because I had to sit down.  Standing wasn’t ok.  I thought I might need help, and since I live alone, I called a friend.  He didn’t pick up.  I called again, which is my family’s code for “someone is dying, pick up the phone.”  He didn’t pick up. Called another friend.  No dice.  Sat on my floor some more.  Mustered the strength for benedryl.

My first friend, M, called back almost immediately.  And so I told him what’s going on.  But here’s the thing.  I believe in subtext and I don’t know how to ask for help.  So instead of saying, “Hey.  I need you to come over and help me go to the hospital because I think I need extra help and I’m scared,” I said, “I’m feeling weird, I’m in pajamas, I’m tired, I ate something bad, maybe I have a super saturation quota of corn and ate so much of it this past week my body is all like ‘eff you corn’ and now it’s hard to breathe and I don’t want to use my epipen because I’m in pajamas and I’m so tired and I took benedryl and plus if I was going to die, I’d have died but what if I die but I guess I won’t so I’m not going to the hospital because of the pajamas.”  If you’re reading this to support a friend or loved one with allergies: we don’t always know how to communicate what we need.  It’s hard to admit, especially if enough people have told you you’re crazy.  Especially if there’s not enough oxygen going to your brain.  Having a severe allergic reaction is like being stoned, and stoned people can’t communicate well or make good decisions.  So don’t let them make decisions.  Not that M was at fault.  At all.  In fact, staying on the phone with him curbed the panic attack that was starting and I felt loved and that’s important.  But I learned I need to communicate better.  Saying, “I can’t talk and breathe at the same time” isn’t convincing to someone on the phone.  Saying, “Talking to you is extremely painful and I need medical attention, can you come over and help me seek it” is helpful.  But hey, hindsight and enough oxygen is 20/20.

So on the phone with M, I took some hits from my inhaler, which is a silly thing to have because I have great non-asthmatic breathing, but it was once prescribed to me and the hospital people gave me some inhaler stuff and it was nice so I figured I’d do it, too.  I drank water.  I started laughing uncontrollably and no, nothing was funny but I had so little oxygen I couldn’t think straight.  Took tylenol for the migraine.  Was jonesing for a heating pad, but mine is filled with rice and I’m not supposed to touch rice.  Rubbed on a ton of vaporub.  That’s a trick I taught myself.  When my breathing is compromised but not fully stopped, when I feel so congested I can’t get the air out (this is for congestion blocking your breathing, NOT airwaves closing from allergies, and I’m the farthest thing from an MD so take what I say with a grain of salt) I slather on vaporub on my neck, chest, and back, and it soothes the pain and tightness and gives me some relief.

I was terrified to go to sleep.  I spent about an hour feeling like I couldn’t breathe and like someone was sitting on my throat, just chilling, paying no heed to the fact that their chilling was impeding my breathing.  The other friend, E, had called back, and we video chatted.  I told her what was going on and she said, “Xanthan gum? My aunt thinks that stuff is basically poison.”

Her aunt runs this amazing bakery called Breakaway Bakery that specializes in gluten free and popular allergen free foods.  Notice I say popular allergen free.  Because NOTHING IS ALLERGEN FREE. There are no foods that absolutely no one is allergic to.  So let’s not be misleading, or make people feel bad, or tell the public there are 7 allergens and everything else is fake.  Because you know what happens when we do?  People like me get pretty sick but are too scared that they’re crazy to seek medical attention.  But the point is, Breakaway Bakery is awesome, my friend’s aunt is really caring and knowledgeable, and their baked goods are delicious.  If you can eat them.

So I googled xanthan gum.  And sure enough, a number of people have written about xanthan gum allergies.  And Wikipedia explains that it’s made from the same bacteria that causes black rotting on broccoli, cauliflower, and leafy greens.  If there’s every been anything I’m sure of it’s that Wikipedia is never wrong (once I believed an article that said quinoa is a spinach seed, even though I knew that was preposterous…and no, I don’t really believe Wikipedia is never wrong.).  The thing I’m sure of is that I’m pretty damn allergic to broccoli, cauliflower, and especially leafy greens.  And that maybe I was allergic to xanthan gum, too.  This article brought me a ton of comfort – other people had a similar reaction!

E debunked my super saturation of corn theory.  Which I appreciate, because without corn, potatoes, rice, and wheat, I’m a little bit screwed.  A girl cannot live on oats and rye alone. (And I mean alone.  Without yeast or any other agents of utility).

At 2am, I finally felt like I could go to sleep without fear of dying. My breath was controlled, my swelling minor, my migraine  only a seven on a scale of one to ten.  Hives were gone, and bloating is just a fact of life sometimes.  And I did wake up this morning.  Feeling like crap, but alive.

Halfway through the day, it came back.  I ate for the first time (Kix) and it was throat tightness, lightheadedness, bloating, itching.  So I called my mom, emailed my sister, and finally relented and called my doctor who said that this was all normal.

ALL NORMAL.  Let’s let that sink in.  The power of someone saying, “This happens.  You are not alone.  I have heard this before and can help you” is immense.  That’s why I’m letting this post get so long, by the way.  In case you’re googling xanthan gum and allergy and wondering if you are normal.  You are.  Seek medical attention because you deserve it and it’s ok.

My doctor told me to use my epipen.  I told him I was scared.  I was standing in the hallway of my gorgeous office space outside of a major production company’s office – in a hallway where days before, Bradley Cooper was roaming – I was standing whining and crying and clutching my throat saying I was too scared to use my epipen and “didn’t wanna.”  He told me to come to his office and he’d give me epi and steroids.  And it would be ok.  I asked what would happen if I ignored it.  He said I’d stay sick.  And that’s maybe a little bit silly but I’m entitled to make my own decision.  I told him I wanted to think about it (I am a genius sometimes), called my mom, who said I needed to go.

I want to take this opportunity to thank my boss who has let me leave work for allergic reactions more times than I bet he ever bargained for.

By the time I beat LA rush hour traffic (Thanks for teaching me how to drive, Brooklyn.  I totally New York Cityed Beverly Hills traffic today and I’m not apologizing. Oh, and Bruno Mars was driving next to me which is super baller), my throat tightness was subsiding.  The nurse injected steroids into my “just above the butt area” and it hurt but she talked me through it and we did breathing stuff. The doctor and I chatted, he examined my airways and determined I was totally swollen in my glands and sinuses and had an overproduction of mucus, but my airways were clear.

“So I’m good?!”

“No. You’re just breathing, but you’re all swollen.  You’re hypersensitive, and you will be for a few days.  But we learned something.  No xanthan gum.  At all.”

“Guar gum?”

“Same thing.  No.”

“Isn’t it hilarious that xanthan gum is that bacteria on the foods I can’t eat? I googled things, and it made sense.”

“It does make sense, and while xanthan gum isn’t a popular allergen so we don’t test for it, it is an allergen for some people, and you are fine with corn, and you learned something.”

And he told me to take benedryl every night for a few days in addition to my routine morning Zyrtec, and to call him if this happens again.  I asked if I needed my epipen last night.  He said probably just steroids, and that’s why I call.

So I skipped back to work (or fought traffic, whatever), and when the steroids kicked in…

MAN ALIVE!

It was like energy I never had before.  I totally get baseball players now.  I was energized after a day of eating a handful of kicks and a little bit of soda and having an allergic reaction.  Still haven’t stopped moving.  This is way better than the last steroid which made me an emotional mess that just yelled and cried and yelled and cried for two days.  No, I’m not advocating steroids.  They’re probably not good for you.  But I feel unswollen and so energized and I learned two really important lessons:

1. There’s nothing to fear from going to a doctor.

2. I’m allergic to xanthan gum.