invisibly allergic blog - peanut allergy

Eczema, Food Allergies & Me [My Food Allergy Story]

I’m beginning the blog Invisibly Allergic hoping that those in the food allergy community can come here and find commonality and a sense of relief and support from my content. My goal is to create the food allergy website and representation I was never able to find when I needed it. It brings me joy thinking that others can come here and connect with my experience of living with severe life-threatening and airborne food allergy and feel less alone.

Let me get one thing straight right off the bat– there is nothing wrong or bad about having a food allergy, and I don’t hate having a food allergy. I’ve lived a very fulfilling life with my food allergy and you can, too! Society is not designed for it, though, and with food allergies being relatively new, accommodations take educating and advocating for yourself. I do consider my food allergy a disability, and that is a controversial topic sometimes, since I am not on disability in the U.S. and do not receive disability benefits (at least not right now). However, I often utilize disability accommodations, and I see a future where food allergies are widely recognized as being a disability, and there’s nothing wrong with having a disability, either! I am passionate that disability laws and food allergy laws need changing in the United States, right now they’re serving corporations and businesses instead of the people with disabilities, and I hope you enjoy my blog content and get inspired to create impactful changes to help better the lives of those in the food allergy and disability space if you’re not already.

This first entry will give a bit of background on myself, with a focus on how my severe peanut allergy has morphed over the years, taking you up to present-day life as an adult in my 30s!

1990

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Born in early 1990 in Northern California, there was instruction by the medical community to wait to introduce major food allergens to children until they were above the age of 2. I’ve personally witnessed this rule of introducing allergens change over the decades, and have heard in the past decade that you should now be exposing children to allergens very early on, around 8 months or so, to decrease the chance of severe food allergies (always consult with your doctor, I am not one).

I’ve heard many theories on what causes severe food allergies, everything from it stemming from being environmental, what your mother eats while pregnant, receiving vaccines, pesticide use, and genetics. No one else in my immediate family has any severe food allergies, and I’m not sure if it’s relevant or not but I do know while my mom was pregnant with me she craved a lot of split pea soup (a legume similar to peanuts). I seemed to be allergic to butter as a kid, too, although never as severe as my reaction to peanuts, but I would develop a red rash around my face when I ate butter, so we always simply avoided it until I was older. It wasn’t until I was 2 1/2 that we know I ingested a peanut butter cookie while at the park with my dad, and began to “act funny and not like myself”. After that point, we were told to actively avoid peanut products as well since I appeared to be allergic.

Backing up a bit, when I was born, my mother immediately noticed eczema on my hands and was very concerned what it was, the doctor let her know it can be a sign of a food allergy in babies. I still get eczema as an adult to this day, especially in the cooler months, and it’s been something that I’ve consistently had all my life. Not only am I deathly allergic to peanuts, but I’m prone to respiratory issues, and have many environmental allergies. For example, I’m very allergic (almost off the chart) to dust mites, cockroaches, and Birch and Oak trees.

My cousin Nathan on my dad’s side of the family was allergic to peanuts as a kid, but outgrew it before he was a pre-teen, as I’ve heard many children do. My family knew there was a stark difference between his allergy and mine based on our reactions. My reactions included hives and lots of Benadryl to control, sometimes a half of a bottle of the children’s liquid type, or even a full bottle if I ingested something that potentially contained peanuts or was largely cross-contaminated. At the time in the ’90s and 2000s, we didn’t know the terminology such as, “cross-contamination” and also weren’t aware of the severe lack-of food manufacturing laws and labeling laws in the United States. I only personally learned about these in the past 5-10 years! Up until I learned what cross-contamination was, I felt my allergy was unpredictable, now I know it’s very predictable, and am so thankful to understand the food industry better now and how cross-contact works.

Side note: This is one issue I am very passionate about changing and raising awareness of.  For the food allergic consumer, there should be more ingredient information given so each person can be fully informed of what they’re ingesting. I believe all companies should be REQUIRED to label accurately and disclose all allergens and ingredients in the facility and on shared facility lines. I would also like the see the U.S. require a uniform ‘may contain’ type statement, right now there’s no restrictions on verbiage on food labels. For example, a company can put “nut-free” on a product when the product is made on shared equipment as nuts and may contain trace amounts.

My closest childhood friend Katy was also allergic to peanuts, but her allergy also looked different from mine, her main symptom of eating peanuts was hyperactivity. From all this, I learned at a very young age that allergies and reactions are different, and that I was uniquely sensitive to peanuts.

Childhood

My childhood is a bit of a blur… it’s been a while since I was a kid! But I remember it as happy overall and scattered with memories involving chugging bottles of children’s liquid Benadryl or complaining about my itchy lips. I recall at daycare another kid eating a peanut butter sandwich at the end of my long rectangular lunch table, and I thought they would get in huge trouble for it! There was no rule that other children shouldn’t eat peanut products, but I would point and say something like, “Uh oh– I smell PEANUT BUTTER!” and act like they were in major hot water! It felt like a crime to me. I remember thinking I couldn’t believe they would eat such a terrible thing, and felt a responsibility to inform them of how toxic it was!

My dad wasn’t very good about keeping our house peanut-less, either. Over the years, I got less offended by this, but I recall it being a point of contention growing up. Finally he more-or-less understands the severity of my allergy, but in his defense, food allergies just weren’t as common when I was a child born in 1990. He loved peanut butter, and my mom said she even wondered if I had my peanut allergy because when her and my dad first got together, he would mix peanut butter with black beans and eat it for dinner. She thought it was disgusting, and joked that she hoped this snack tradition would not get passed down to their child. Well, it sure didn’t! My mom worked diligently to make sure I avoided peanuts to the best of her knowledge and abilities. She acted as my eyes and ears until I was alert enough to watch out and speak up for myself. Looking back, especially after I had a more severe response to trying a peanut on a flight in 1993 or 1994, it must’ve been terrifying for my mom to be navigating the food allergy world alone, with my life –literally– depending on it. For any parents of food allergic children reading my blog, my advice is to teach your child how severe their reaction is at an early age. Others weren’t always looking out for me, but I was able to communicate I could not eat peanuts and I would ask about what was in a product, always, reiterating that I had a peanut allergy, before eating someplace like school, daycare, or a friends house.

High School

It wasn’t until High School when I recall having to take much stronger precautions regarding my peanut allergy and surroundings. It was always a part of my life, but I never felt like I was that different from my friends until my High School years. I was able to experiment as a normal angsty teenager, but there were sometimes bigger repercussions for me than for everyone else. I had to really watch out for what I was eating, remind people of my allergy more and communicate the severity more regularly. Around this time I also had to start watching out for what was being eaten around me, because I could feel reactions coming on from shared surfaces and being in a room with a bunch of peanut products. I was aware that there was always a slight chance I may die because of my allergy, and I knew I may have to use my epi-pens and be rushed to a hospital if a reaction was severe enough. None of my friends were experienced in dealing with anaphylaxis, nor was I. I found it easiest to avoid sharing drinks, snacks, cigarettes, or anything with anybody. If need be, I would leave parties or the movie theater when there were peanuts around, and people knew to expect that I may leave suddenly without being offended. I avoided candy at Valentine’s Day or Halloween and sometimes would even just miss school or work on those types of days to avoid the potential reaction.

I was lucky in High School, because my class was absolutely tiny, it was a K-12 public school and my graduating class had less than 50 students, so people knew me and knew about my allergy, and knew I had my epi-pens in my purse, etc. It was a tight-knit community that I loved being apart of and felt like family. I attended a smaller college for the same reason — the smaller the environment the easier it is to control and receive accommodations, in my experience. I believe people see you as a person rather than just a # in a larger university or school.

Airborne Reactions

To this day, defining the constraints of my allergy is very difficult. People often ask me questions like, “how long after I eat peanuts can I be around you again?” or “how many feet away can peanut ingredients be without you reacting?” and I use my best judgement, but it’s all an educated guess. Plus, I can have a reaction without food being involved, which is hard for people to sometimes wrap their mind around. I can touch a peanut contaminated surface out in a public space without realizing it, a library book or the handle of a building, then  touch my face or lip, and it can start a reaction right then.  Or, maybe I’ll touch my phone and then hours later, I’ll touch my face or lip afterwards, and it will ignite a reaction. I genuinely appreciate when people ask me questions to be able to help prevent a reaction from occurring, and I know sometimes my unconfident and uncertain answers can confuse them! I like to ask for “no peanuts to be around” that way the request is clear, and I can still plan to wipe surfaces and try to not touch my face, and of course will always have my epi-pens and Benadryl on me. I don’t *think* I can go into anaphylaxis due to solely the smell and airborne aspect, but I also don’t know and don’t want to allow a reaction to escalate to find out! I know I can have lip swelling, hives, facial numbness, stomach trouble, etc. from airborne exposure, and that’s enough for me to want to avoid it.

The Future of Invisibly Allergic

In terms of the rest of this blog and my future blog posts, I will focus primarily on the more recent years of my adult life, and put out content that I think will be useful to those coming to my site. I have endless material to work with, since it is part of my life and part of me, so if there is a topic you don’t see on here, please feel free to reach out to me directly. Over the life of the blog I will zero in on specific topics such as: allergies at the workplace, events, safely having pets, dining out, dating, resources for new parents of a child with food allergies, travel guides, and all things food allergy!

Until next time!

XO,
Zoë

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