Maya's Happy Place

A multiple food allergy kid grows up.


Independent Living With Roommates As An Adult With Food Allergies and Possible Celiac

allergy friendly soy free products for Maya's Christmas Giveaway worth over $50Congratulations to K.B! You are my Christmas giveaway winner! Look out for an email in your inbox this week! To all who participated, thank you and all those who signed up for my mailing list are automatically entered into every holiday giveaway I do from now on!Now to the topic at hand, a recent study at the University of Maryland actually made me a bit ill when I read it. It was a study about children with food allergies learning helplessness. They say that when something causes an emotional response, its because its a part of you and something you hate about yourself. So if you get angry catching someone on the highway picking their nose, you’re a nose-picker. And just because that nose-picker now provoked a serious need to pass them, you step on the gas, except now…uh oh. That light just turned red and you’re forced to slam on the brakes and sit at the light next to them. Of course, you’re livid that they made you floor it to begin with and against your better judgement, you turn to look one just one…more…time. A spasm twists your face into Picasso contortions of disgust as you watch them dig for gold, then with lightning speed look back at the light realizing they cannot catch you judging them.

Well. I don’t believe in judging others’ appearances or gross habits in public. Some of them can’t help it. Like people accidentally letting one rip. Many of us, especially among the gluten-free crowd can empathize. Of course, this is completely different from someone who infringes on your safety or health.
Enter, the most disgusting sound on the planet.
nail clipper

My biggest peeve in public is beyond the shadow of a doubt, people who clip their nails.

I don’t care if its hands or toes. But the second I hear that nail clipper clip, you will see me transition. Literally.

I remember as a child growing up into my teens, my nails forever looked dirty. Unless I had just taken a bath, my nails almost always had the signature dark olive dirt under the nails, which for me, wasn’t dirt at all, but skin. I scratched so much every hour of every day and night that my nails constantly had a build-up of skin cells, which accumulated to look like dirt. Of course, for a long time, I really thought it was dirt. I realized after years of insecurity about it, that even after a thorough scrubbing under each nail that same ‘dirty nails’ look would happen within a five minute span of time because I was always itching.
I picture that dirty-looking clipped nail with its skin cells and God knows what else underneath flying at the speed of 70-140 mph (depending on it’s thickness) through the air and landing on my lip. Or near my face and I’m forced to breathe in the gross residue of what disgusted me about myself.
See how this personalization perception goes?
Nowadays, of course, I’m absolutely anal about cleaning my fingernails, especially when I’m in public and itchy, which doesn’t happen often since I never really eat at restaurants anymore (except Chipotle, which now uses rice bran oil and sunflower oil but the cross-contamination risk is very high for tofu/sofritas).
 They say the person or thing that provokes the most negative responses within is your greatest teacher.
And of course, this pisses me off.

toddler making angry face
My thoughts exactly.
Many times growing up I felt helpless due to my allergies and yes, some coddling, however my mischievous, rebellious nature made me want to do the opposite of what family wanted. I was always trying to find a way out, to no avail. It also seemed due to my food allergies, eczema, severe gluten intolerance and environmental allergies, I would have to make about quadruple or quintuple the monthly income of what most people would have to make in order to survive. Why?

The stress many people with food allergies deal with. And my thoughts exactly.
  • Medical bills, vitamins and supplements – Includes co-pays, deductibles, over-the-counter drugs, like Zyrtec liquid capsules which I take daily. I also count supplements because I notice a monumental difference in my overall immune system and my body’s ability to heal if I don’t take them. These supplements include daily doses of: Bluebonnet soy-free Vitamin C(1000mgs daily after meals), Bluebonnet B Complex-100
    (alleviates carpel tunnel pain and is a natural antihistamine), Bluebonnet Vitamin D3 5000IU (docs found I’m always low on this) and probiotics (Ultimate Flora ). Then I also must have my Natural Calm Raspberry Lemon
    (magnesium supplement to calm body’s stress levels and eliminate gut stress or blockage), gluten-free, Braggs Apple Cider vinegar (to eliminate acid reflux or indigestion) and Fiber Smart Clear Fiber for those days I’m too emotionally stressed or nervous to poop (works especially well while traveling).

 

  • Food. – My grocery bill total every month is 400-500 per month. If I’m in a relationship, it’s double that (usually with their help) because they can only eat what I can eat if or I will react from kisses. Because of my soy allergies, everything has to be USDA Organic to avoid soy waxes (on fruits and veggies), GMOs and any other sneaky areas where soy might hide and not be listed in ingredients. My meats all have to be grass-fed or USDA Organic to avoid soy-feed reactions. My fish, wild caught to avoid soy-feed reactions. My oils, all USDA Organic to avoid severe reactions to ‘faked’ oils, or worse, a peanut oil reaction which happened this year to Shop Rite canola oil which I found out from calling the manufacturer was processed on the same equipment for peanut oil (which I’m anaphylactic to). My juices have to be USDA Organic (once again, to avoid soy waxes) and the only soda I can seem to get away with without a reaction is Seagram’s or Schweppes Ginger Ale (because of ‘natural flavors’ aka GMO soy).

Here’s an infographic I created last month just for us soy-sensitive individuals. Feel free to share!

soy allergy infographic

 

    • Other necessities – These necessities will be different for everybody. Like years ago, when I didn’t realize soy was in so much makeup and my soy allergy and dimethicone allergy were getting worse, I had an obsession with  Fabric Band-Aids. I would wear five of them on each hand at a time and I looked like a leper (or at least the looks and questions I got from clients made me feel like I did). So yeah, Band-Aids and now my obsession transitioned to sticky Lint Rollers. I’m not talking about that gross infomercial one where you wash the crap off and keep reusing it. I’m talking about the stickers you simply peel off and throw away after they look fuzzy. I love those. Put that under my tree, please. I use it daily all the time, rolling it all over my blankets, my comforters (I have a firm belief that once I or anyone has walked outside for more than 15 minutes, I/they are a walking dust/skin/pollen/ragweed collector). I run it methodically over both sides of my pillow before I lay down to sleep each night. What does this do, besides make me look like a crazy person to most of you? Well, for one, I don’t itch at night anymore! My dust mite allergy issue has been a thing of the past thanks to this obsessive little new habit.

    Recently, I wrote a post about Halloween growing up and how I wasn’t allowed to keep a teal pumpkin on my family’s doorstep this past Halloween (to represent that I have non-food snacks for nut-free trick-or-treaters and to represent myself and the entire food allergy community).

    Well, guess who moved out. (Aaand maybe not. See update at end of this post.) Upon calling a close friend, the gates of heaven opened up and his roommate was moving out.  I jumped on it and two weeks later, I moved in. Of course, at the same time I was terrified. My family didn’t make it easy. Screaming fights ensued but I stood my ground while they brought up worst-case-scenarios to scare me about trusting others with my life. Then we made up.

    They were afraid for me and rightly so. However, keeping me safe was not the solution; I had to make my way on my own. Of course, all those fears are valid for someone with deadly food allergies. The easy access for others to a tiny peanut, peanut butter, tofu or other deadly allergen is like a loaded gun to us.
    Even someone cooking a Campbells soup in a pot before I used it could cause a major case of hives and itchy suffering only an Atarax and time could heal. Or maybe someone used a sponge not realizing the protein residue on that plate from the hummus will contaminate everything else. And so, to rectify my own doubts, fears and negative emotions that were beginning to creep up, I did some soul-searching. While indulging in chocolate, of course!

    As I took notes and ran through worst-case-scenarios (with the help of my lovely paranoid, OCD dad) I realized that many of the negative possibilities mirror the same stress and worries parents have when their kids go away to college. And although I was safe from the high percentage of college kid rebellion and immaturity, I still would have to take proactive steps to ensure my safety. I made a list of my immediate needs in the new place.
     

    • Security  
    • Communication
    • Preparation
    • Respect/Trust


    Tip #1 
    Invest in a Mini Fridge

    First, I checked out how much space I would have. I spoke to the two roommates I would share the kitchen and bathroom with. Since one was already practically a decade-long brother to me, he promptly removed all peanut trail mixes and peanut butter from the cabinets, saying they would be donated. The sweet older woman who lives in the other room said she never cooks with peanuts or tofu and doesn’t eat anything peanut-based. (Insert sigh of relief here).

    A lot of the possible scenarios I ran through in my head could be avoided by having my own fridge. So I got a mini Haier refrigerator similar to this one which I absolutely love. The freezer compartment is tiny, however, it just fits the buckwheat pancakes I make in advance as well as my gluten-free rolls from Whole Foods but that’s enough for me!
    .

     

    Step #2 
    Invest In Your Own Pantry. In Your Bedroom

    This way, you know for sure nobody is eating any of your severe food allergens then drinking from juice or other beverage cartons. Not only that, but we know gluten-free and allergy-friendly foods (especially if you have soy allergy) are expensive. Soy allergy people have to be neurotic because soy masquerades as about a hundred other derivative ingredients. Everything has to be grass-fed, wild-caught and USDA Organic to avoid dreaded soy allergy reactions from even soy-fed creatures and soy wax on regular fruits and veggies.

    Step #3 
    Bring your own cooking utensils, sponges, dishwashing soap and gloves.

    I get my nitrile gloves from Costco and bring my own soap and utensils which I wash and keep in my room. Ultimately I also want to have a couple of my own dishes, pots and pans, however since I’m about as limited with space as you can get, I figure if I do a second rewash of clean dishes I plan to use, I’ll be okay. So far in the four weeks I’ve been here, I’ve had one mysterious food reaction, even though I cooked it myself from scratch. So I’m either more allergic to tomato sauce than I thought, or there may have been microscopic proteins on the dish I used or in the pot I used to cook the sauce. So since then, I rewash every dish before use and have been fine. 
    Step #4 
    Be prepared (with epis, meds, lint rollers and a good air purifier, filters and yes, a soy-free bed mattress…)Of course, I keep extra Epi-Pens in different areas of my room that no one else knows about except for me. I also have two bottles of hydroxyzine in the room at all times. My purifier I keep in my room at all times is the Whirlpool Whispure HEPA Air Purifier. I honestly don’t know how I went without it before family bought this for me two years ago. When you go into another room, then in my room that’s been purified on the ‘Turbo’ setting for for at least three hours, there is a world of difference and the air just feels lighter and more breathable. My roommate noticed the difference the first day I had it on and took several deep breaths as if he was at the top of a mountaintop. I smiled and of course, he now wants one.

    Lint rollers. After my rant earlier, need I say more?

    lint roller for allergies

    And yes, if you have environmental allergies that you get shots for (even if you have the mack daddy of air purifiers) you still need lint rollers.

    Step #5 
    Invest in security (especially in college or living with roommates)Whether that security means putting a lock on your door so that you can lock it while you’re gone (with you being the only one with the key) and putting an alarm system on your window if you’re renting in a house or making sure you’re in a secure environment where your food and things in your room cannot be accessed, please please please invest in security and take extra precautions. Not everyone in life is going to like you and if you are trusting people within your space, you’re also trusting them with your life. The last thing your parents need is to hear you died from anaphylactic shock and the ones who find you think you just ate something you’re not supposed to. I’m willing to bet that a small percentage of food allergy deaths around the world are not accidents at all. But who would know? Not even the cops or the coroner, unless there were an investigation. Why do you think this scenario has been featured on numerous crime shows and tv plots including CSI and third season of American Horror Story? Because the concept probably happens more often than we realize.
     

    (Update: Unfortunately it didn’t work out and my safety was compromised. Although I cannot get into details, as of 12/23 I’m back with family…let this, too, be a lesson that the moment you feel you are not safe, you go to a place you know for sure you are. I’ve come to the conclusion that if I want to be on my own, I will have to have my own place, no shared space and no roommates. Well, hey. Now I have my own mini-fridge. =) Go with your gut, always.) 

     



    6 responses to “Independent Living With Roommates As An Adult With Food Allergies and Possible Celiac”

    1. I just found your site while searching online again for makeup that I could use or ways to make it myself as my once “sensitive skin” is now just rejecting everything it seems. I have eczema/contact dermatitis flare-ups or breakouts its hard to tell what it is anymore but it is reacting to everything I put on it. I am also allergic to soy so I can empathize with the frustration of trying to find products. Unfortunately I am also sensitive to gluten and cant eat nuts, I am allergic to sesame and sunflower which seem to be in everything and have a severe allergy to scents which can make being out in the world a challenge. It sucks that the moving out thing didn't work- I am 16 and live at home so that is something that I can totally understand. I wont even bother at this point until I can live by myself, its hard enough living with my family who are somewhat appreciative of the health challenges I have. Anyways thanks for the info on your site, its nice to know I'm not the only one out there.

    2. K,I apologize, I must've sent five replies to you in past week and wasn't sure why/if they were going through! Turns out my cookies were turned off for some reason so none went through! So Let's trythis again and sorry you're seeing this a week later.I am so sorry you have to go through that….all of those ARE in a lot of things as I well know…and now that I know you and many others are allergic to sesame, I will keep that in mind when posting recipes and offer alternatives to sesame from now on!Yes, it's definitely not easy and you are right, we are better off with family or people who truly understand what we go through. You have some time yet before you move out, but when you do, I'm glad you'll be armed with the knowledge of what you will need and things to consider. I'm also very allergic to most scents (many scents contain PEGs, some of which are soy-derived and tons of other neurotoxic chemicals which I wouldn't be surprised if we're more sensitive to than most)A week ago when I read this, you literally made my day and my week with your comment. Reading it again to rereply had the same effect. You are the very reason this blog exists and to hear from others like me in this world knowing we are not alone is so powerful. K, thank you so much for taking the time to comment and know (from what I see on the Soy Allergy and Scent and Fragrance Allergy Board on Facebook) you are most def not alone. If and when you're allowed on FB, join those two pages…or tell an older family member or parent if you can't. Staying up-to-date with the community is so important with soy allergy since so many derivatives pop up in the least expected of places.Sending you healing hugs from NY…and thank you again, K :*

    3. Oh PS – if you're making your own products, Makingcosmetics.com and starwestbotanicals.com are two awesome sites for getting anything you need 😉

    4. Hi,This is an old post but I just found this site.I am a college student and during the fall I will live with 4 other people off-campus in a house. Two I know but the others will be random. I'm allergic to most tree nuts, soy,milk,grass,apples, dust mites, spinach,etc. I get oral mouth itching from fruits with a skin which I assume to be the soy coating.I have a mini-fridge, 1 out of the 5 pantry shelves with my personal items , and share a large fridge in the kitchen with 1 other. For my allergies I get large bumps/hives , “colds”, & have wheezed before. I have cut soy out of my diet but get flare ups. Recently,this summer I came back from a few days with my family and realized a housemate that knows about my allergies probably used my pots and utensils (at least). They washed them but I keep having hives and took allergy medicine (thought zyrtec was safe…), which combined with the name-brand citris dishwasher soap used aren't good.Sorry for the rant but I don't know if I should listen to my parents who think keeping my dishes in my room(and pots) is drastic. The person not only put my pots in the main pot cabinet (though my stuff was all cleaned and out of the way in a drying rack on the counter) but when they borrowed my utensils they were put with the supplied house utensils which are older but the same brand.I can't tell which are mine now.Are there brands of meat that are neither soy or grass fed? Are there any soy-free allergy medicines? (I haven't seen Up & Up stuff but i'll look again at Target or Sprouts). What are soy-free non-food things I should replace? Are there cheap brands for a soy-free mattress? I know I should talk to my allergist but for a while he kept refusing to believe I had an allergy to milk despite my wheezing with huge bumps after lactaid. Stuff in my fridge like soy-free eggs (from Sprouts) seem fine but I heard from a previous renter that things in the pantry are assumed to be okay to use unless stated. I'm nervous that people won't listen based the housemate (one who borrowed dishes) who despite my talks often acts like we're the same person ( clingy but somewhat nice ,very sensitive, and who I suspect has gone in my room without permission). I know i'm overreacting a bit but the fact that her stuff was available,clean, and on the same kitchen counter … but she used mine makes me uncomfortable.-ES 🙂

    5. I'm sorry I only saw this now since I took a hiatus from the blog.I hope you stuck to what makes you feel safe. When it comes to your health, you're the only one who has to go through it so you are always your best advocate. I also highly suggest some type of therapy to deal with the possible anxiety, depression and/or PTSD that often goes along with severe food allergies. I will be talking about my experience with this in future posts.I should also let you know, I found out recently, soy is a cross-allergen to birch pollen. Some who go through birch pollen immunization shots will find that cross-allergens, such as to apples, celery or soy lessen or even disappear after a full round (4-6 years) of immunization therapy. It happened to me many years ago in my teens and I was able to eat soy sauce. Now, that's a definite no no, so I'm restarting immunization shots. Obviously everyone is different, but its something to consider, especially since immunization shots can also boost your immune system in general to raise quality of life.

    6. Adding to the part about meats, your grass sensitivity will disappear once again with immunization shots. Talk to your allergist about what options are possible. Allergy shots are a commitment, but they are so worth it and extend far beyond just environmental allergens. Wishing you lots of healing on your journey and thank you for visiting!

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