Here’s my first post on the Food Equality Initiative blog for the series Food Allergies Give You Superpowers. Did you know food allergies come with X-ray vision?
Exciting news! I’m going to be blogging for Food Equality Initiative, an awesome non-profit dedicated to increasing access to safe foods for people who need them most. They launched the first-ever allergy friendly food pantry — most food pantries do not offer enough safe foods for food allergic families. The organization also advocates for amending the WIC food package to be more inclusive for people with food allergies — many of the permitted foods in the WIC shopping guide contain major allergens (dairy, wheat, soy, peanuts, eggs) and the substitutions many people with allergies rely on are not allowed. Those substitutions tend to be more expensive, meaning people who already rely need to rely on government support for access to food need additional funds to purchase safe foods. I am very lucky to not have to worry about affording my diet; especially given my uncommon allergies, I would have very little access to safe food if I needed government assistance. Families should NOT have to choose between anaphylaxis and starvation because of their economic status. Everyone deserves access to healthy food, whatever healthy means for them.
The first blog series I’ll be collaborating on is called Food Allergies Give You Superpowers. Check out the teaser post here. As difficult as living with food allergies can be, there are some benefits, and this series will explore those often overlooked superpowers.
If you or someone you know (that isn’t me) suffers from food allergies, you need to be aware of the latest guidelines from the FDA that allow food manufacturers to make substitutions in their product ingredients without changing their labels. The guidelines offer protections for the Top 8 allergens, but since 170 foods are known to cause allergic reactions, that’s not quite enough, nor does it cover people who are severely allergic to things like peanuts and soy even in refined peanut oil and soy lecithin.
One of the consequences I didn’t expect from COVID-19 was not having access to Xolair. My doctor’s office had to close because most if not all of the patients are immunocompromised (allergy and immunology go hand in hand). I’m not 100% sure when I’ll get my next dose or how my body will fare as the medicine depletes from my system, so I’m buckling down and heading back in time – to when this blog was more active – and making sure I’m extra careful and diligent so as not to wind up in an ER experiencing anaphylaxis. It’s especially fun given that it’s horseradish season – hooray for Passover! – so even with Xolair, it’s the most allergic time of year for me. Spring and horseradish. And now a pandemic. What can go wrong?
But I don’t want to focus on the fear or negativity. I’m trying to feel empowered. To that end, I wrote a piece for Medium about how the tricks I’ve learned over the years to avoid allergens are coming in handy in this socially distanced society.
When the world gives you horseradish, you can make maror (bitter herbs) or you can make…well, hope.
I was recently interviewed by Kitch’N Giggles, a brand new meal kits targeted at families with young kids about my experience living with allergies. Check it out here!
Helping out in the kitchen at a young age really helped me figure out how to prepare delicious meals quickly when I was diagnosed with such severe allergic shock that I couldn’t eat any processed foods. I learned so much from watching my mom and my aunt cook and invent recipes on the fly. Allergies are so much less scarier when you know how to cook and truly understand the ingredients you’re using.
That’s what’s so great about Kitch’N Giggles. The meal kit is designed for busy parents to make healthy meals with fresh ingredients with their kids. It’s fun and productive for the whole family and instills a joy of cooking in children at a young age. Yum!
I just came across this article by Curtis Sittenfeld in Slate, and I am THRILLED.
Finally, someone explaining to the masses how scary food is for food allergic people. Fine, this is about kids specifically, but it applies to adults, too. People don’t realize that the food they eat at their desks or before a meeting where they have to shake hands or on a train or in a movie theater can be harmful. No, I’m not saying to ban food, but just to increase the general consciousness surrounding what we touch and who we touch afterwards.
I have some friends who will soap their hands before they see me. Before they get in my car. Before they hug me. Before they come to my apartment. I thank them every time. I’m so grateful because I know they are thinking of my safety. They usually say, “No big deal, I want you to be healthy and it’s not hard to wash my hands.” I’m always stunned at how simple it is for them and how difficult it is for other people. Maybe someone can do a psych study on that. The point is, it’s doable to be conscious and still eat. I’d be more okay with people eating everywhere if they cleaned up after themselves. Dishes, wrappers, hand washing. Eat your movie theater popcorn. But maybe don’t spill it everywhere, and if you do, tell an attendant who can clean it before the next show or pick it up yourself. Wash your hands before you meet a new person. Don’t grab a handful of bar nuts and then shake my hand. One or the other. Wouldn’t it be better if fist bumped or just waved than if I ran to the bathroom to cover myself in steroid cream for hives and downed two benedryl?
These two paragraphs really struck me from the article:
If I seem here like a particular kind of parent—a fussy, hovering, self-righteous priss—let me say this: I kind of am. But the fact that we live in the Age of the Irritating Parent shouldn’t be conflated with the rise of allergies. According to the advocacy organization Food Allergy Research and Education, 1 in 13 American children under age 18 now has a food allergy, as does 1 in 10 preschoolers. The food-allergy rate in the U.S. rose 18 percent between 1997 and 2007. It’s true that I happen to be a neurotic mom. It’s also true, as demonstrated by skin tests, blood tests, food challenges in the doctor’s office, and accidental exposures, that my daughter has a serious medical condition.
So the fact that I wish parents wouldn’t let their newly walking toddler stagger around the sandbox with that sloshing sippy cup of milk or their 7-year-old practice his throw with Ritz Bits—I promise it’s not that I’m trying to tell them how to raise their kids. They probably just want to keep them fed to prevent a meltdown, which I sympathize with. (For the same reason, we bring fruit squeezers for the ride home.) And I wouldn’t presume to instruct parents what to do at their own house. You do not need to bake and serve a vegan cake at a birthday party. (Claire brings her own cupcake.) I realize all bets are off at a restaurant, which is why our family doesn’t go to them. But in the communal space of a playground, food isn’t the main attraction.
YES, CURTIS! YES! I read so many articles and hear so many jokes on TV about helicopter parents who have food allergic kids. SO NOT THE SAME. Parents not wanting their kids to die from invisible food proteins have medical reasoning backing them. Parents who don’t want their kids to play with Timmy because he has a dinosaur toy and dinosaurs and scary and scary things lead to anxiety which can get you off the list for the top preschool are not the same thing.
Also, most food allergic people who I know are more than happy to bring their own food places if that’s what their host prefers. And they are fine avoiding restaurants. But there are lots of places where food isn’t the main attraction, and it has begun to bother me that it’s always on the sidelines anyway. Do all events need free snacks or can they stand on their own merit? I’ve done a lot of event planning, and we always throw out food, no matter the host organization. What if we didn’t serve it? Just had water, maybe a bar (drinks are less all over the place and have fewer allergens for the most part)? Would the events be bad? If you need food, designated food areas are totally doable and safer.
Just some food for thought…that kind of food, no one is allergic to.
It’s been a busy month so I haven’t had much time to both challenge foods and write about them, but here’s the basic gist:
Challenge # 10: Onion powder — wasn’t sure how this would go, considering I just barely passed boiled yellow/spanish onions. Turns out, I barely passed this one by even less of a margin. Got some minor tightness and headache-y, so it was, as my doctor put it, my call. I could eat onion powder if it happened, from time to time, but not regularly by any means, and certainly not without feeling good. So cross contamination is fine, if it’s less than 2% of the ingredients, it’s fine on occassion, and if someone cooking for me erroneously includes onion powder in something, there’s no reason to panic. Just take Claritin and move on. Oh, and ps: I know I said I’d try cottonseed oil but it is IMPOSSIBLE to find. It’s like transfat central so no one sells just a plain bottle, and it’s so hard to find a product that lists cottonseed oil as the only possible oil – most say cottonseed/sunflower/soybean/canola. Guess I’ll have to wait until its on the shelves for Passover cooking. But the good news — I called the bagel store that I surmised used cottonseed oil because they were once vague on the phone, and it turns out they use soybean oil. So I can eat their bagels, challah, and pound cake! So many foods and so few challenges!
Challenge #11: Lentils — this was a surprise allergy from my blood test. I’d been eating lentils A TON after the skin test took away practically every other food, so when it showed up positive on my blood test I was bewildered — I’d eaten them for dinner just the night before! As expected, I was fine. And the test counted for all types of lentils! A few people questioned my decision to challenge lentils — I mean, how important are they, really? To them I say: I challenged them around the time of the Torah portion about Esau selling Jacob his birthright for a bowl of red lentil soup. Red lentils were such a coveted food that they were worth lifetimes of blessings. When I ate my challenge lentils, all I could think was, “Man, this food is hearty and delicious. I would TOTALLY give up my birthright for this.” I mean not really because I can live without plenty of foods and blessings are cool and stuff, but they are a significant food. How many other foods are called out with such great import in the Torah? Most of them are foods I’m allergic to – bitter herbs, olive oil. To be able to eat a food that is a worthy enough food of God, well, that’s important.
Challenge #12: Pickles — I tried pickles mostly because they take very little prep and I’ve been craving salt. Man, that was a lot of salt. I picked Israeli pickles as the type to try after a short conference with some of my oldest friends, and while I’m thrilled I got the chance to eat them (the pickles, not my friends), it didn’t go too well. After 4 small pickles, my face got flushed, ears burning and itchy, and throat tightness. Not enough for a Benadryl, but enough to have clearly failed the challenge. I popped my Claritin and left the office finally understanding why I could never eat more than two Israeli pickles without getting cranky. Silly me, I thought it was the cabbage cross-contamination often found in restaurants serving Israeli pickles. Answers!
Challenge #13 — Oreos — why try Oreos, you may ask. You better be asking. Oreos are a preposterous food to challenge when you can’t have things like, say, basil. Well, funny story. I bought organic fresh basil. I brought it to the office. The doctor offered me oreos, which he’d bought randomly as an office treat. I said, “I can’t eat that!” and he said “I’m offering you to look at them.” I sort of laughed, and ate the basil. Well, put the basil in my mouth and promptly spit it out because it tasted like soapy manure. I’m assuming it was spoiled. I looked at my doctor, asking him what to do now. He handed me the bowl of Oreos and said, “I guess try these! See, I bring treats for a reason!” We fished the package out of the trash to read it, and I ate four Oreos. They were sugary, delicious, and frighteningly processed, but I was fine! And they made a much better breakfast than basil.
FOOD CHALLENGE TALLY
Cindy – 9
Allergens – 4
Up Next – *non-spoiled* basil
I got the results of my Johns Hopkins blood test today (or, as I’ve been quipping, I returned from my astral/blood vacation in D.C.). And they are overwhelmingly negative. Negative meaning I’m not as allergic as we thought. Positive because, well, yay.
Anything that came out negative means I am not allergic to it. I may still have a chemical reaction but it is not an allergy and I am not as risk for anaphylaxis. Anything positive means my blood tests as allergic, but I may not experience symptoms. I can do food challenges (the doctor feeds me a food and I hang around for 2 hours to see if I react) for any foods I tested on the low scale for. And I can eat the foods I tested negative for — after July 18, because I tested positive to some things that I’d previously been fine with, and I’ve eaten them, so to ensure I don’t have a false reaction due to mild allergens in my system, I have to wait 30 days. But in 30 days…I can eat!
To keep track, I made a handy dandy chart. This compares my blood test results (accurate) to my skin test results (less accurate). It also accounts for foods that don’t have blood tests. Anything above .1 is positive. Anything with something in the ones column isn’t worth challenging.
|36||egg (yolk and white)||n/a|
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.
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.”
I’d tell you my whole bio and how it got to be that on a Wednesday night I decided to sit down and write a blog after 25 years of living with severe food allergies (and environmental, what what!). But the thing is, I’m a TV writer (aspiring, fine.), and one of the first rules of writing for television is that you get in to the scene quickly, say what’s relevant to move the story along, and get out as quickly as you got in. Leave exposition and backstory to subtext, and if you create the story correctly, it’ll be obvious on it’s own. And while I recognize that this isn’t a script, I do believe the same rules apply. You’ll come to know me pretty well as you continue to read this blog, so I figure I’d just say hey, give you some handy dandy bullet points of what the point of this whole endeavor is, and mosey along to the good stuff.
1. I’ve always had allergies. To a lot of different foods at different times. I finally found a good allergist in my city who can help me. Yeah, I’m 25 and first started going to an allergist now – my allergies had always been so obvious there seemed to be no point. But they got less obvious. So I got tested, and tested positive (and severely so, on a scale of 1-4, I was mostly 3s, and on A-D, I was pretty evenly B/C with some Ds) to 48 out of the 75 testable foods. And in a different test, 37 out of the 40 testable environmental allergens (bring it on, mold and dogs).
2. I am allergic to (in order of severity according to test results, this is all subject to change as I embark on food challenges in the coming months):
- Lettuce (though in real life, this is a pretty severe one, goes to show you test results aren’t perfect)
- Cacao Bean aka Chocolate
- Green Peppers
- Cow’s Milk
- Baker’s Yeast
- Cabbage (this one, tests aside, is usually airborne for me. Makes grocery shopping hella fun).
- Egg Yolk
- Codfish (welcome to the 4D fatal territory).
- Things I’m allergic to that they don’t have tests for, but after a while of reactions, you kinda know…Artichokes, Hearts of palm, cauliflower, Brussel sprouts, papaya, dates, figs, bouillon cubes, spinach, xanthan gum, guar gum, horseradish/wasabi (can’t even be in the same floor of my house when this is being freshly grated)
3. I keep strictly kosher, so if/when I post recipes, feel free to modify them with non kosher ingredients. And yes, it does add to the complexity of living with allergies, and also allergies add to the ease of keeping kosher, because staying away from food is not really a big deal at all and never has been.
4. I’m terrified of using my epipen, and I’m not sure why. So I haven’t used it. Ever. And there have been times I maybe should have. But we’ll get to those.