An Introduction To Invisibly Allergic

I’m beginning the food allergy blog Invisibly Allergic hoping that those in the peanut allergy community and more broad food allergy community can come here and find commonality and a sense of relief and support from my transparent food allergy content.

My goal here is to create a food allergy website and representation I was never able to find when I needed it, especially when I was in my late teens and early twenties. It brings me joy to think that others can come here and connect with my experience of living with life-threatening, cross-contact, and airborne food allergies and feel less alone.

Let me get one thing straight right off the bat– there is nothing wrong or bad about having a life-threatening food allergy, and I don’t hate having a food allergy! This is a common misconception that I’ll cover on Invisibly Allergic, and I think it’s because others without food allergies but impacted by them closely, such as scared and worried parents, often want to find a cure and view food allergies as bad, and put all their energy into this. The reality is, as it stands, there is no food allergy cure or even known cause for food allergies, so this mindset creates a feeling of something being flawed within the allergic person. My peanut allergy is me and I can’t be separated from it.

I want to spread the message about accommodations and kindness in society being key, because I’ve lived a very fulfilling life with my life-threatening peanut allergy and others can, too! Society is not designed for life-threatening food allergies, though, and with food allergies being relatively new, accommodations take educating and advocating for yourself and/or the food-allergic person.

One other important part of my food allergy story is that I do consider my food allergy a disability, and that is a controversial topic sometimes since I am not actively on disability in the U.S. and do not receive disability benefits. With that said, I very regularly utilize disability accommodations, and I see a future where food allergies are widely recognized as being a disability if it is one for the person, and there’s nothing wrong with that. There’s nothing wrong with having a disability at all, in fact, it can be a beautiful thing, it just falls outside of the “norm” we’re used to and are taught by society.

I am passionate that both disability laws and food allergy laws need changing in the United States, because right now, they’re serving corporations and businesses instead of the people, and in fact, pharmaceutical companies and the U.S. healthcare system are profiting off those who are sick and/or disabled. It makes me disgusted to think that those who need healthcare and accommodations most are often the ones being exploited. I hope you enjoy my food allergy content and are inspired to create impactful changes to help better the lives of those in the food allergy and disability space if you’re not already.

My Food Allergy Timeline: My Life With A Food Allergy

This timeline 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

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 because now based on scientific research we should be exposing children to allergens early on to decrease the chance of food allergies (always consult with a licensed & certified doctor for the latest instructions, I am not one). Check out my trusted book recommendations, as there are amazing books out there for parents of food allergic children, and those with food allergies and/or disabilities.

I’ve heard many theories on what causes 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 life-threatening food allergies like mine, and I’m not sure if it’s relevant or not, but I do know while my mom was pregnant with me she craved split pea soup (a legume similar to peanuts). I seemed to be allergic to butter as a kid, too, and I’m still considered to have a food sensitivity to cow’s milk today. Although my reaction to butter was never as severe as my reaction to peanuts, at all, I would develop a red rash around my face, so we always simply avoided it until I was older. It wasn’t until I was aged 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 by an allergist to actively avoid all peanut products since I appeared to be allergic. Avoidance is still the “cure” today.

Backing up a bit to 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, have many environmental & chemical allergies, food sensitivities, and recently found out I have an autoimmune disease (psoriatic arthritis). I’m very allergic (almost off the chart) to dust mites, cockroaches, birch and oak trees, and have allergies to chemicals such as lanolin (the oil from wool), propolis (beeswax), formaldehydes, and linalool.

An older cousin of mine on my dad’s side of the family was allergic to peanuts as a kid, but outgrew it before he was a pre-teen. My immediate 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 an entire 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 contaminated. When I was little, I don’t believe the Epi-Pen Jr. was even invented yet, and I don’t remember the exact time in Elementary School in the mid-1990s when I finally did get the Epi-Pen Jr.

At the time in the ’90s and early 2000s, terminology such as, “cross-contact” wasn’t around, and we weren’t made aware of the severe lack-of food manufacturing laws and labeling laws in the United States. The maddening and frustrating part is, I never learned about cross-contact or our food labeling laws from a doctor or allergist. I only personally learned about these in the past 5-10 years by educating myself. Up until I learned what cross-contact was, I felt my allergy was frustrating and unpredictable, now I know it’s very predictable, and I’m much less frustrated. I am so thankful to understand the (crappy) food industry better now, this level of awareness has seriously changed my life for the better. 

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. This is essentially done in the EU already and could be emulated and put into law as a requirement right now in the U.S..

I would also like the see the U.S. require a uniform ‘may contain’ type statement because right now there is no restriction around the 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. 

One of my closest childhood friends 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. Now in the 2020s food allergies are seen as a spectrum, meaning no two are alike.

Childhood

My childhood is a bit of a blur. I mean, to be fair, it’s been a while since I was a kid. I remember my childhood as happy, scattered with memories involving chugging bottles of children’s liquid Benadryl or complaining about my itchy, chapped lips. I recall at daycare another kid eating a peanut butter sandwich at the end of our 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 I felt a huge responsibility to inform others of how toxic peanuts were.

My dad wasn’t very good about keeping our house peanut-free, either. Over the years, I got less offended by this, but I recall it being a huge point of contention growing up. Finally, now in my 30s, 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, and definitely not anytime before then. My dad loved peanut butter, and my mom would say she wondered if I developed 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 (gross!). 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!

On the other hand, 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 frightening 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.

To parents of food allergic children reading my blog, my advice is to teach your child the consequences of their reaction at an early age, and what to do if they feel the symptoms coming on. Others weren’t always looking out for me, but I was able to communicate that 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 friend’s house. It takes a lot of advocating and speaking up, but it is worth it because it can save a life.

High School

It wasn’t until I was in 8th grade and early 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 starkly 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 annoying often (probably for both them and myself) and communicate the severity to others 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. It may sound morbid, but I was aware that there was always a slight chance I may die because of my allergy, and my friends were, too. I knew I might have to use my epi-pens and be rushed to a hospital if a reaction was “bad” 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 for the most part it felt like family. I attended a smaller college for the same reason- the smaller the environment was, the easier it was to control and receive helpful accommodations that were actually put into place and taken seriously. I believe people see you as a person rather than just a number, which was my experience at larger universities. I talk about this more in-depth in my managing food allergies in college blog post & will also discuss food allergy bullying in a dedicated blog post.

Airborne Reactions

To this day, defining the constraints of my allergy is very difficult. Like I said, food allergies are a spectrum and no two are alike, but this means no two reactions are alike, either. 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?” I’ll use my best judgement but it’s all an educated guess.

Plus, I can have a reaction via cross-contact of a contaminated space, without ingesting food or eating even 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, like 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 life-threatening 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’ve landed on that it is best if I request for “no peanut products to be around at all” 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 know if I can go into anaphylaxis due to solely the smell and airborne aspect, and I don’t want to allow a reaction to escalate enough to find out! I know I can have lip swelling, hives, facial numbness, stomach trouble, miss work and events I was looking forward to, etc. from airborne exposure, and that’s enough for me to want to avoid it.

Stories About Food Allergies: The Future of Invisibly Allergic

In terms of the rest of this blog and my future food allergy blog posts and food allergy content, I will focus primarily on the more recent years of my adult life and put out content that I think will be useful to the audience coming to my site.

There’s a ton of food allergy content out there for parents of children with food allergies, so I’m not trying to act like the expert on that perspective, because I’m not the parent of a food allergic child. However, I am the grown-up version of the child. Check out my food allergy resources tab to learn about authoritative sources in the space that I trust, the free food allergy consulting I offer, and my recommended book list. The books I list are for children with food allergies, adults with food allergies, and parents of food allergic children, many written by doctors and research sources to dive into the scientific side of food allergies being on the rise and how reactions occur in the human body.

I already have a lifetime of food allergy material to work with inside of me, since it is part of my life and part of my food allergy journey, so if there is a topic you don’t see on here, please feel free to reach out to me directly on my contact page. Over the life of the blog, I will share personal stories about food allergies, zero in on specific food allergy and peanut allergy topics, and share fun and valuable travel guides based on my first-hand experience.

 XO Zoë

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