This food allergy guide is a resource for all food allergy parents and was primarily written with the parents of a newly diagnosed child in mind. I know this type of food allergy content is needed because as my friends are having their own children, their learning about how food allergies are on the rise, and asking me questions. Often they will discuss with me their anxieties around introducing allergens to their children, how to support an inclusive Halloween and share with me stories about how someone in their child’s class at school has a food allergy.
I’ve carefully curated and gathered together food allergy resources and my own advice for parents here to provide information for an audience that might be relatively unfamiliar with food allergies up until recently. With that said, the info I share here can also apply to a number of situations and isn’t only applicable to the parents of children with allergies.
In case you aren’t familiar with my own food allergy story and food allergy background, I’m speaking from my experience of having grown up with a life-threatening peanut allergy, and now as an adult living with a life-threatening peanut allergy. So while I’m not able to understand the perspective of a parent with a food allergic child fully, I am coming from it offering a different perspective having been the allergic child myself.
What To Expect In This Food Allergy Guide
This is a long blog post, about a 25-minute read. It’s a lot of information to cover. Due to this, I wanted to provide a TOC in case you wanted to skip around to any particular section. However, it’s a resource meant to be read in full.
Table Of Contents
- To The Parents & Caregivers of Children With Food Allergies, You’re Doing Great!
- Food Allergy Progress Happened Due To Food Allergy Parents
- Always Follow The Advice Of A Doctor
- Websites, Social Media Groups, Food Allergy Apps, & More
- My Top Resources For Anyone Caring For Children With Food Allergies:
- 10 Questions To Ask Your Board-Certified Allergist
- Epinephrine vs. Benadryl
- What Are Signs & Symptoms Of Anaphylaxis
- Media Portrayal Of Food Allergies
- The Reaction After The Reaction
- Fear Around Using Epi-Injectors
- Have Transparent Discussions With Food-Allergic Children
- When Allergic Children Flee The Nest
- Food Allergy Internalized Shame & How To Mitigate It
- Accommodations Being Seen As An Inconvenience
- Food Allergy Discrimination By Other Adults
- Fact: There Are Kind People Who Want To Accommodate
- I Don’t Hate My Food Allergy
- Food Allergies in Daycare & School Settings
- 504 Plans
- It’s A Food Allergy Spectrum
- U.S. Food Labeling Laws Are Not Good
- Cross-Contact (Food Contamination) Basics
- Public Spaces & Contamination
- Should You Keep Food Allergens At Home?
- There Is No Food Allergy Cure Or Known Cause Of Food Allergies
- Oral Immunotherapy (OIT) & Tolerance Induction Program (TIP)
- OIT & Internalized Shame
- OIT & Adults Working Full-Time
- Would I Consider OIT & TIP For My Child?
- Allergy-Safe Snacks On-The-Go & Eating Elsewhere
- Road Trips & Lengthier Travel With Food Allergies
- Eating At Another Person’s Home
- Food Allergic Children & Holidays
- Holiday Traditions Can And Should Evolve
- Homeopathic Allergy Remedies
- Are Food Allergies Considered Immunocompromised or An Immune Disease?
- A Heightened Reactivity
- The Many Forms of Epinephrine
- Big Pharma Profiting Off Of & Exploiting Those Who Need Medicine Most
- Epinephrine Degrades In Heat
- Welcome To The Food Allergy Community!
To The Parents & Caregivers of Children With Food Allergies, You’re Doing Great!
So, let’s get started! I want to acknowledge the fact that I have learned immense amounts about living with a food allergy from my mom, who was a parent of a food allergy child (me) and doesn’t have a food allergy herself. Before I was born, she had no experience with food allergies. Even today, well into my thirties, I’m able to lean on her for food allergy advice and to ask questions about my allergy when I was a kid. I often find myself asking my mom what she thinks I should do in various food allergy situations and with varying food allergy reaction symptoms. While I know my own body and do trust my own intuition, it’s nice having her as a resource because she knows my medical history, especially in my earliest years when I really don’t.
Food Allergy Progress Happened Due To Food Allergy Parents
As food allergies became more common over the past decade, it was incredible being able to witness the number of food allergy resources online. I remember the joy I felt when I started to find food allergy content online that resonated with me. Previously, this was not available, and having a food allergy was a very isolating experience. This level of food allergy awareness is largely due to food allergy parents raising awareness on behalf of their children. No one else quite has the stamina of a parent afraid for the life of their child, and progress has happened due to this passion and perseverance.
Always Follow The Advice Of A Doctor
I’m not a medical professional or pretending to be one. Invisibly Allergic Blog is all about sharing my own food allergy experience and what I currently do to stay safe, what I have done in the past, and the future I want to see for those with food allergies. I am not trying to diagnose or give advice here to take the place of a discussion with your doctor. I hope you get valuable information from this post, the website, and my food allergy resources. I promise you’re not in this alone. Let’s get started!
Websites, Social Media Groups, Food Allergy Apps, & More
My Top Resources For Anyone Caring For Children With Food Allergies:
- Allergen “Hidden” Names 101
- Spokin App
- The Itch Podcast
- An excellent podcast on food allergies by Payel Gupta MD & Kortney Kwong Hing of the food allergy, eczema, and asthma blog ‘Zestfull’. Starting at the beginning with Episodes 1 & 2 would be my suggestion to anyone managing a food allergy. In Episode 2 they discuss how usually eczema in babies is often a sign of food and other allergies later in life, but also explain that there is no “one recipe” that makes a food allergic person. In Episode 40 they discuss media portrayal of food allergies, and both the harm and help it can do for adults and children seeing these often inaccurate representations. I want to specifically link to these two helpful clips for children, which show positive representation that they linked in The Itch Podcast episode notes:
- Food Allergy Book Recommendations For Adults & Children!
- My top food allergy and disability book suggestions for adults wanting to learn the science behind food allergies, as well as the best children’s books I’ve found for raising food allergy awareness and disability awareness.
- Inclusive Storytime Bookshop
- While they don’t have a huge selection representing food allergies, they do have some & are an amazing resource for inclusive books for children!
- Food Equality Initiative (FEI)
- Nut-Free Bakeries & Restaurants List
- Food Allergy Research & Education (FARE)
- PN/TN Safe Food Finds Facebook Group
- Food Allergy Moms Facebook Group
- Trader Joe’s Product Line (TJ Product Phone # 626-599-3817, M-F 6am-6pm PST)
- FDA Food Labeling Laws
- Canadian Food Labeling Laws
- If you’re located in the US like I am, Canada isn’t too far and has more comprehensive labeling laws than the United States does, labeling for 11 allergens. I’ve had a lot of luck buying Canadian products in the US in stores and shipped to me online!
- Instagram has many food allergy accounts and disability accounts you can follow that are specific to a food allergy or more general. I’ve linked my own Invisibly Allergic IG, so if you’re an IG user, a few to get you started are: @foodequality, @spokininc, @foodallergy, @nutfreementality, @teallivingblog & @freefromexpo, you can also follow hashtags to see relevant content to topics like #peanutfree #foodallergysafe #foodallergies #allergyfreecandy, etc.
- AllerMate’s Children’s Food Allergy Products
- This is one site I particularly like and have shopped from, but there are many that exist selling similar medical alert bracelets, epinephrine cooling cases, lunch boxes, stickers, apparel, and more.
10 Questions To Ask Your Board-Certified Allergist
I have a blog post dedicated to my experience going into anaphylaxis at the allergist, caused by intradermal allergy testing. Due to this traumatic experience, I am a big believer in avoiding any type of skin testing or allergy testing that involves putting the skin in contact with allergens if you can help it. Often by the time you’ve come to my blog, you may have already done skin testing, and that’s completely fine. I’ve read about bloodwork being more accurate, and I like that there isn’t a risk of a reaction, so this is my advice for allergy testing of any kind, at least as a first step! It’s something to talk to your allergist about. Unfortunately, patch testing for chemical allergies can’t be done with bloodwork, as far as I know and have been told when I’ve asked.
You can ask your allergist any and all questions, of course, but I have 10 prompt ideas to help you out. These are topics I’ve discussed with my allergists in the past:
- Can we develop a food allergy action plan together so I can reference it and know the symptoms of anaphylaxis to look for?
- When should I use an epi-injector vs. antihistamines like children’s Benadryl
- How much Benadryl to use for the weight/age of the child
- Are metal allergies linked with food allergies/peanut allergies?
- Is eczema common with food allergies? (The allergist can speak to IgE-mediated food allergies in children)
- Can you tell me about Pollen Food Allergy Syndrome (PFAS), also known as Oral Allergy Syndrome (OAS)? Does it apply to our situation?
- What are your thoughts on airborne food allergies and reactions due to cross-contact and trace amounts?
- Do you know that the current FDA food labeling laws don’t require a label if an allergen is on shared equipment as another food? If so, any advice on avoiding contamination, is this something you think will be changed in the future?
- Do you have coupons available for AVI-Q or Epi-Pen?
- With a [specific food allergy] in mind, are there any common medications or non-food products you know of that I should avoid that contain the allergen?
Epinephrine vs. Benadryl
I’ll speak a little bit here on when I would use an epi-injector and elaborate on my relationship with using Benadryl. Like I said at the beginning of this post, always consult your doctor/allergist on this and develop a food allergy action plan together to follow in the event of a reaction. I’ll share my experience with when I would use epinephrine or Benadryl.
I wouldn’t use my epinephrine unless I am showing clear signs of anaphylaxis (where 2 or more body systems are involved) or if I am having ANY trouble breathing. I always keep my epinephrine on my person, in case I need to use it. It’s important to keep the amount of epinephrine you need on you as well, for example, I require keeping 4 on me at all times. It’s also important to have multiple in the event that one malfunctions.
Food allergy reactions and symptoms can be very confusing, for both the person having the allergic reaction and the observer. In my experience, when anaphylaxis is actually happening, you can often tell it from extreme signs, like: blueing lips, skin, or fingernails, struggling to breathe or speak, or facial and/or neck swelling. I won’t go into full detail here about signs of reactions since your doctor and allergist can discuss this, and there are many great resources around this from people with a medical background (many listed here in my food allergy and disability book recommendations). However, I want to be clear that antihistamines alone can not treat anaphylaxis, so there’s a definite time and place for epinephrine and when in doubt, if you aren’t sure if you should use it but think maybe you should: use the epinephrine. It could save a life. There’s a saying in the food allergy community, “epi-first, epi-fast” and that’s because epinephrine acts immediately and rapidly, whereas other medications, like antihistamines (Benadryl), do not.
The below paragraph is taken from the Allergy & Asthma Network’s page on anaphylaxis. In this article, they provide examples of different body systems and what those can look like during a reaction:
I always begin with antihistamines if the reaction seems mild and hasn’t come on quickly and/or worsened quickly, and then I will monitor to see if it’s still worsening or if it seems to be improving. It’s difficult to explain as an allergic individual how intuitive it feels to me when I’m experiencing anaphylaxis in my body. Putting myself into a parental or caretaker perspective, I can see how scary it is to only be able to watch for a reaction in their child.
Anytime I feel a food allergy reaction coming on, or any reaction involving my immune system, my first action is to make sure that my life-saving medication is close by and within reach. Ideally, I’ll have someone with me or can find someone to tell that I’m having a reaction, so they can monitor me as well, and I let them know where my medication is. I’ll text or call someone if I’m alone, and keep my phone nearby in case I need to dial 911.
Media Portrayal Of Food Allergies
There’s a chance you’ve seen food allergies being portrayed in the media inaccurately. One that always comes to mind is the well-known Hitch food allergy reaction scene played by Will Smith. In this scene, he experiences facial swelling but continues talking and walking through the reaction, and then he treated it with liquid Benadryl. As we know, Benadryl (an antihistamine) can not treat anaphylaxis. Misrepresentations of food allergies are a dangerous problem, as representing life-threatening reactions falsely is spreading deadly misinformation.
Another food allergy misrepresentation that haunts me to this day is the infamous scene in 1994’s Pulp Fiction, where a woman overdoses and is administered a “shot of adrenaline” (epinephrine) into her heart and is instantly revived. I’ve seen other movies playing up this myth that a shot of epinephrine in the heart is how you administer the drug, and that’s absolutely untrue. I’ve actually had multiple people ask me in real life if they need to administer my epinephrine if they should into my heart. No, no no, it’s typically where the person’s arm naturally falls on their outer thigh, but it’s important to check the directions for each epinephrine to read the exact details of how long to hold it for, and all those important details.
The Reaction After The Reaction
Allergic reactions are scary, disorienting, and time-consuming and can go on for hours requiring constant monitoring. Not to mention, the after-effects of a life-threatening allergic reaction don’t stop immediately. After I experience a reaction, itchiness on my lip or slight lip swelling can continue for days, and I can feel in my body that my histamine levels are still more elevated than usual and I’ll have skin rashes and additional high-histamine symptoms for weeks. Plus, I’ll usually suffer from gastrointestinal issues from all the various medications, feel fatigued, have insomnia, and overall feel like something is “off” in my body and unlike myself for many days to even weeks. It may mess up my menstrual cycle, and things like that.
If I’m required to take oral steroids after the allergic reaction, which is common practice, the side effects can be even more extreme. One time, after suffering from anaphylaxis and going on steroids for 21 days, I broke out into a full-body rash due to the steroid causing my immune system to drop too low, and then had to go on another medication for the full-body rash. I explain these details to give context as to why I go to such measures to try to avoid having a food allergy reaction in the first place. A life-threatening allergic reaction isn’t a mild inconvenience, it can be deadly and a traumatic experience to go through in numerous ways.
When I was a child in the early 1990s, if I was showing signs of a potential food reaction, such as hives, itching, or lip swelling paired with no noticeable throat swelling or struggling to breathe, etc. I would be given Children’s Liquid Benadryl and stay monitored by someone. Back then, my mom was told by physicians to give me as much Benadryl as it takes to begin to slow down the reaction, to closely monitor me for more severe signs, and take me to the ER/call 911 if those begin. We now know 30 years later that taking that amount of Benadryl isn’t the correct option for severe symptoms, and can cause issues on its own, from masking symptoms of anaphylaxis, to having its own side effects of taking too much Benadryl. It’s important to use epinephrine if an allergic reaction has escalated to include multiple body systems, and is worsening and coming on fast. In the past when I’ve gone into immediate care or the emergency room for a reaction, they will often give me a steroid shot instead of epinephrine and monitor me for a few hours to be sure I’m getting enough oxygen. Most of the time, I’ve been told to keep taking antihistamines for a few days afterward and will be prescribed an oral steroid for days to weeks depending on the severity of the reaction.
Fear Around Using Epi-Injectors
A big part of having a life-threatening food allergy is a waiting game- waiting, monitoring, having your epinephrine and antihistamines on hand, and using your best judgment on if you need to seek medical attention or call an ambulance. I require 4 epinephrine injectors and need to keep these on me at all times, but, I carried only 2 most of my life. That’s because I didn’t know I need to carry more until I went into my first experience with anaphylaxis. When I went into anaphylaxis at the allergist, they used 3 epi-pens on me, and told me that had I not been there to take oral steroids immediately, I would’ve needed to use more than the 2 I had with me. They advised me to keep 4 on me at all times from that point on.
I personally don’t like needles and never want to use my epi-injectors or get a shot, it honestly really scares me since epinephrine injectors are meant for all adults, and I’m very petite and short. I sometimes fear the needles may be way too oversized for my body. However, even with these fears, when anaphylaxis was actually taking place in my body, at that moment, I wasn’t worried at all about using it or the needle. I was fearless and I wanted it, because I knew it was life or death. I think needle phobia is common around epi-injectors, but truly it’s potentially life-saving and looks and sounds scarier than it actually is.
Have Transparent Discussions With Food-Allergic Children
I’ve said this in other posts on Invisibly Allergic, but it’s worth reiterating– it’s important that children with food allergies know what they’re allergic to and understand the extent of their own food allergy. Food allergies truly are a spectrum, some are mild and others are life-threatening. An allergy can evolve and morph, and every allergic reaction is different, so it is still good to have this transparent discussion with children even if food allergies are mild so that in the event it escalates and becomes life-threatening, they’ll know concrete actions and steps to take.
The sad fact is, many children and adults with food allergies or anything that makes them feel different or self-conscious, and may try to keep it hidden. I did this myself. When I used to feel a food allergy reaction coming on in elementary or middle school, I would run to the bathroom alone without telling anyone what was happening, feeling shame and embarrassment. That was until I learned a deadly statistic about anaphylaxis happening to people alone in restrooms, embarrassed by gastro symptoms or visible hives, or facial swelling. Due to these symptoms, the allergic person would flee the scene and no one else would know a reaction was taking place, and no one was there to help if the person went unconscious and needed medical attention.
After learning this was a common situation, I felt less alone, and I had the desire to put my pride aside and tell someone to come to check on me and to even come with me because I didn’t want to be alone in a situation where I go unconscious and/or require my epinephrine and can’t self administer it. All of that to say, if your children are at school, daycare, at a friend’s house, or in any setting where food or contamination of their allergen could be involved, having them practice feeling comfortable asking questions and having food allergy conversations could be a lifesaver. Food allergy children, teens, and adults being aware of their allergen is crucial so they can remind people of their allergy and ask, “is there [allergen] in this” or communicate, “I’m allergic to [allergen]” or “I’m feeling a reaction in my body”.
Your Allergic Children Fleeing The Nest
As scary as it can be for parents of food-allergic children to go out into the real world and into various situations, I believe it is necessary for the children to live as freely as they can. Living with a life-threatening food allergy can be done safely with minimal risks, such as accommodations, washing hands regularly, having them not touch their hands to their face, having medicine on hand, wearing an N-95 mask, and many other ways.
Having conversations about food allergies, and discussing the symptoms of an allergic reaction can help kids and teens learn to advocate for themselves, and communicate about their food allergy/food allergies effectively, even at a young age. As a kid, I felt like my peanut allergy was my secret superpower because I knew I could smell peanut ingredients from far away and easily, and knew what to do when I smelled it. I used my nose to keep myself safe by smelling food before I ate it, and deciding for myself if I felt safe eating it. My mom also made it clear to spit anything out, even if it grosses someone out and isn’t polite to do because being polite isn’t worth feeling the need to keep eating and swallowing something potentially unsafe. I still do this to this day! I am not afraid to spit something out if I get a weird feeling in my body.
As a young child, I remember thinking it was so cool that I could tell if peanuts were in something or not. It wasn’t going to work for trace amounts, but at least if I smelled something and felt no reaction in my body, I felt confident there was no obvious peanut detected.
It wasn’t until I was older that I realized others could eat peanuts safely, so there was quite a long period where I thought everyone was allergic to peanuts, just like me. Even after finding out that was not the case, I never wanted anything to do with peanuts and preferred they be kept away far away from me. I believe this is common in children with food allergies, there’s no craving to eat their food allergen. When you don’t know what you’re missing out on, and this goes for many scenarios and disabilities, there isn’t the same level of desire or fear of missing out (FOMO).
Food Allergy Internalized Shame & How To Mitigate It
For most of my life, I pretended my peanut allergy wasn’t there a lot of the time, because I didn’t want to be different or a nuisance, and sadly I would put myself in risky, and quite frankly, deadly, scenario. All the while, I knew the risk and would be anxiously hoping to myself that no reaction would happen so that way I could continue to blend in and hope that maybe my food allergy wouldn’t be as bad as I knew it was.
I’m not meaning that I ate risky food with my allergen in it, no way, but I’d go to a restaurant with more risk than I truly felt comfortable with, or go to the movie theater and tell my friends they could get peanut candy and sit nearby me still. When in reality, I didn’t even feel comfortable being in such a contaminated space in the first place. Plus, I knew I’d probably have an airborne reaction to their peanut-containing candy being nearby or from cross-contact on surfaces.
Accommodations Being Seen As An Inconvenience
I’ve learned that people with disabilities are the accommodating ones, and accommodations for us, in turn, are typically the bare minimum. Not all the time, but most of the time, it seems like the idea of accommodation in society has been flipped. Most of the time, I’m accommodating others and navigating varying levels of unsafe scenarios, and people see my few and far between accommodations as an inconvenience to them and are boldly vocal about it. This is most often in public situations with people I do not know or am only acquaintances with.
After accommodating others for most of my life to make them comfortable with my food allergy, and make it palatable, I finally knew I had to begin prioritizing myself because the sacrifices I was making for others were no longer worth the risk and toll they took on me. I was fed up faking, hoping my allergy would magically change and began to set my own food allergy boundaries and limits that served me. Personally, I felt a lot of shame around my peanut allergy, and to be honest, still do some days, because of the way society reacts to my peanut allergy being such a terrible thing. From a young age, people would say they were sorry for me, that they wouldn’t be able to live without peanuts, and that I was brave and an inspiration. From this, I gathered that there was something wrong with me, that my life was undesirable, that I stressed my family out, and I internalized all of it. These thoughts set in and made themselves at home inside my mind, and it’s taken me many years to not hate the food-allergic part of myself that’s still there.
Food Allergy Discrimination By Other Adults
I want to specifically call out and address food allergy discriminating and bullying by both adults and children. Unfortunately, it seems to be a trend that when other people are unhappy about accommodations being made for someone with a food allergy, they get really vocal and passionate about it and their child not being able to do something like eating a peanut-containing snack at daycare, school, on the bus, or at a birthday party. This seems to be a common situation across all environments like work and within individual families, but especially I’ve experienced it first-hand dozens of times when parents of non-allergic children are angry when their kid(s) can’t eat an allergen someplace, or even an adult wants to eat their snack containing my deadly allergen right next to me.
It’s not only children bullying other children with food allergies, bullying can look many ways. It can look like teachers bullying food-allergic children, which I’ve experienced first-hand, as well as adults and family members bullying food allergy children, teens, and adults.
Fact: There Are Kind People Who Want To Accommodate
Whether I show it outwardly or not in a situation, I do get offended and feel hurt when someone complains to me about my food allergy being either a nuisance to them or in a round-about or direct way says it is exaggerated and fake and treats me like I’m not important.
I’ve had to learn to accept that some people don’t understand, don’t want to understand, and will never try to understand. Some people can be just plain rude and spiteful. I remind myself those aren’t the kind of people I want actively in my life, and the important thing is that the daycare/school/employer knows about the food allergy, takes it seriously, and understands the severity and the medications required if an allergy is to happen (keeping those life-saving medications close-by.)
Ultimately, not everyone’s going to agree about food allergies and not everyone will want to accommodate them. The good news is, you often don’t have to associate with those people for very long, as much as you can, let them be a blip in your day and disappear. If they are offensive and not willing to accommodate or take an allergy seriously, it is a quick way to know you DON’T want to be around a person, group, or business. There are truly so many people out there who want to accommodate your needs, and you get to surround yourself with those people and places.
I Don’t Hate My Food Allergy
As I sit here typing away in my 30s, I can confidently say I do not hate my food allergy. Not at all! Everyone is different and unique, and I love myself and want to celebrate myself. I deserve to experience joy just as much as everyone else surely does, and I do. I want to spread respect for those with disabilities, because that’s what we need more of in this world, to celebrate our differences and our individuality.
Being cautious around this “needing to fix” societally-driven narrative with children is important to get ahead of, so they don’t internalize there being something wrong with them that needs fixing. My advice is for parents to put themselves in their children’s shoes as much as possible, to understand how words may be impacting them around their food allergy experience and the food allergy part of themselves. We all deserve love, respect, and joy just as we are.
Food Allergies in Daycare & School Settings
My family and I did my own version of managing my peanut allergy when I was in a K-12 public school system, and even into college. Nowadays, it’s wonderful that food allergies are becoming a commonly discussed topic, and that 504 plans in schools exist.
If I were able to go back in time and send myself to daycare, factoring in knowing what I know now in the 2020s about cross-contact and airborne reactions, I would request no peanuts to be eaten in the building and have it be kept peanut-less. It’s impossible for me to advise accommodations on behalf of other children or food-allergic adults, since I don’t know where they fall on the food allergy spectrum, so that is why I’m using myself as an example here. My mom always sent me to daycare & school with peanut-safe food and snacks, and strictly advised them on what I could eat and not eat. But requesting nut-free spaces in the 1990s and 2000s was unheard of, even though it certainly would’ve been ideal. Check out my blog post on 16 ways children may describe an allergic reaction here.
It’s A Food Allergy Spectrum
My food allergy is a disability, and most of the time, it is an invisible one. I recognize that not all people with food allergies consider themselves to have a disability, and that’s because every food allergy is unique. Food allergies can’t be generalized. I’ve been in situations where other individuals with the same food allergy as mine have completely misunderstood my allergy experience, and I theirs, because our day-to-day experiences look nothing alike. I’ve learned that just because I react one way, doesn’t mean that’s the way it is for everyone.
Food allergies are a spectrum and it goes from more mild symptoms to life-threatening, the author of Food Without Fear has a great representation of the varying symptoms of adverse food reactions. Everyone is different and every reaction can be different. Regardless of your child’s severity level, ‘disability’ is not a bad word. The way I see it, it just means accommodations may be needed, and this should be normalized because likely all of us will have accommodations needed at some time or another. Not to mention, anyone can become disabled at any time. We all have different needs and that’s completely acceptable and valid. Let’s support people with disabilities and reliant on disability services and make sure they’re supporting the disabled individual properly and with dignity. From what I’ve learned the past years, the disability laws in the U.S. can be appalling and are not even close to being as inclusive and supportive as they should be. The ACLU is one organization I follow to better understand disability rights, in addition to following disabled influencers online and engaging with their important content.
U.S. Food Labeling Laws Are Not Good
One thing that would benefit everyone in the food allergy community, and beyond, would be transparent food labeling laws like what the EU legally requires. Right now, food allergy laws in the U.S. do not support consumers, they exist mainly to protect food companies. That’s unacceptable when lives are on the line and millions are impacted daily.
In the U.S., right now we need food allergy labeling to be required for more top allergens (at least the top 14), and food companies need to be required to state clearly if they contain and may contain food allergens. It would be life-changing to readily have this information available to consumers in a standardized way, with repercussions if companies do not follow it. This is a topic I will discuss on Invisibly Allergic over and over, and is a huge mission of mine to change in the United States. Want to help make this a reality with me? Contact me here!
Cross-Contact (Food Contamination) Basics
Cross-contact is when one food comes into contact with another food and their proteins mix. These amounts are so small that they usually can’t be seen, and even a tiny trace amount of food protein can cause reactions in people with food allergies. For a long time, I thought my food allergy was completely unpredictable and I couldn’t seem to get a handle on my reactions. This all changed when I learned about cross-contact at the food production level and learned about how relaxed our FDA food labeling laws are in the United States.
Now, I call and reach out on products before eating them to find out what allergens are in the facility (for me, I ask about peanuts only), and then I proceed to eat items only if peanuts aren’t present in the same facility. This isn’t even a guarantee that the individual ingredients weren’t contaminated earlier by peanuts in the supply chain, but it’s at least less risky and eliminates a certain level of cross-contact potential.
If I start getting more relaxed and eating products with peanuts in the facility or on shared lines, I start experiencing more and more reactions in my body. It’s that simple. It’s amazing when food products and companies are allergen-free certified because it takes a lot of the work out of eating for me if the product is guaranteeing my allergen isn’t in it, but is a rarity and very expensive, and often these allergen-free foods are mostly sweet snacks and not savory, and not pre-made meals.
Right now in the US, food labeling laws aren’t required to be consistent, so always thoroughly check to make sure you understand why they’re saying “allergen-free” or something along those lines and have a healthy skepticism. To help, I have a blog post with examples of misleading food labels. In my resources section of this post, and listed in the resources section of my site, I included Trader Joe’s product phone #. If you have a TJ’s grocery in your area, they have a very helpful product line you can call to learn about what allergens are in the facility of each individual product based on its bar code.
Public Spaces & Contamination
What do a playground, daycare, library, bus, and grocery store all have in common? Like all public spaces, they’re likely contaminated with a food allergen. People may call this process “cross-contamination” or “cross-contact”, and it can be referred to as a number of things, but officially this allergen contamination is called cross-contact. Essentially, it’s when particles of your child’s allergen get onto a surface and a reaction occurs when no food or act of eating is involved. Cross-contact is by far the trickiest part of having a food allergy for me because I can’t visibly see or know when something is contaminated at the particle level, so reactions are unexpected and uncertain.
Since I am so careful about vetting the food before I eat it, checking if my allergen is in the facility, I can be fairly certain that if I have a reaction, it’s likely due to a cross-contact and a contaminated surface where I picked up a trace amount of peanuts from who knows what, and touched my lip, my phone, or accidentally contaminated the safe food I was eating with my contaminated hands. Washing hands regularly and wiping surfaces (phone, steering wheel, wallet, etc.) can help a lot to mitigate this, but it’s something to be aware of if you have a child with food allergies. Playgrounds, daycare, stores, and frequently touched items like toys, an iPad, a pacifier, and public items like library books can all get contaminated by cross-contact, and you can see how the list is quite literally endless.
Check out my similar blog posts on cross-contact vs. cross-contamination, what is cross-contact, non-food products that contain common food allergens, and pet-related cross-contact.
Should You Keep Food Allergens At Home?
This is a common question, and an individual choice, because food allergies are a spectrum and can vary. I’ve heard of scenarios where parents have a child with 30+ food allergies and another child with none, and realistically they can’t keep all the foods their one child is allergic to out of the house. Growing up with one food allergy to peanuts, my preference was to not keep any peanut ingredients at home and to let my house be my peanut-free space. So, if possible, I suggest not keeping any known allergens in your house to limit exposure & contamination. This has always been key to limiting my allergic reactions and helping with avoidance, and it may look different for everyone! Trust your intuition and ask your child about their preferences if they’re old enough.
There Is No Food Allergy Cure Or Known Cause Of Food Allergies
Oral Immunotherapy (OIT) & Tolerance Induction Program (TIP)
Oral Immunotherapy (OIT) is a controversial topic in the food allergy community. I’ll break it down the best way I can, as it’s not something I have direct experience with. First, the cause of food allergies is unknown, there is no cure, and avoidance of the allergen(s) is the #1 way to “treat” a food allergy still in the 2020s.
From the American Academy of Allergy, Asthma & Immunology, the definition and explanation of OIT is as follows, “Oral immunotherapy (OIT) refers to the medically supervised therapy of feeding an allergic individual an increasing amount of a food allergen with the goal of increasing the threshold that triggers a reaction. The goal of therapy is to raise the threshold that may trigger a reaction and provide the allergic individual protection against accidental ingestion of the allergen. OIT is not a curative therapy and involves a long-term commitment over several months to years and possibly indefinitely.” OIT is not a guarantee and can come with many life-threatening risks depending on your food allergy experience. It comes with a high risk of reaction, and the potential to have to or choose to drop out of the study.
OIT & Internalized Shame
Due to the above, I personally have ruled OIT out for myself as an option, because I try to limit the number of reactions and exposures I have. In my experience, the more reactions I’ve had, the worse my food allergy has become. I have no judgment towards others who have done OIT or put their children through it. It’s important, in my opinion, that parents of children who plan to put them through OIT to openly talk about treating their food allergy in a way that doesn’t make the child believe something is wrong with them and requires fixing.
Like I touched on before when speaking to food-allergic children and in front of them, being aware that they know nothing is inherently wrong with the child and needs “to be eliminated” to have a joyful life is something to keep in mind because that’s where internalized shame in children can come in. Especially if OIT doesn’t work for them and has “failed”. I am careful not to say, “I’ll never get OIT done” because who knows what advancements will occur. However, I’ve experienced anaphylaxis responses to trace amounts, so my goal is to have the fewest amount of reactions as possible, and OIT doesn’t align with this.
I’ve read many studies on OIT over the years, and there’s some speculation surrounding issues with reoccurring inflammation of the esophagus, I don’t know if that’s still a concern or not, but it did freak me out. Overall, I’m happily waiting for now until there’s a food allergy cure that doesn’t involve my immune system getting involved by having a reaction over and over. In the food allergy book, Food Without Fear, the author discusses how this may one day be a possibility.
OIT & Adults Working Full-Time
Years ago I looked into OIT where I live in Louisville, Kentucky, and the one clinic offering it was very interesting in me to participate since I do have such a life-threatening peanut allergy. However, it was the same clinic that put me into anaphylaxis via allergy testing and mishandled my allergic reaction.
If you read my blog post on this, you’ll know it was a really traumatic experience for me. Not to mention, from what I’ve read and based on what food allergy influencers have shared, OIT seems to be mostly an option for kids rather than employed, working adults. The allergist’s office in Louisville explained the OIT process would require me to come in multiple days each week from 9am-4pm to do daily dosing of my allergen (peanuts) and remain there for monitoring. The process would last 5-12 months, possibly longer, and there was a chance I’d get the placebo. So, I knew that this was not for me.
“…limiting the idea that something is inherently wrong with the child and needs “fixing” and “to be eliminated” to have a joyful life is something to keep in mind, because that’s where internalized shame in children can come in.”
Tolerance Induction Program (TIP) is something I only recently learned about in 2021, and seems similar to OIT but more individual and customized to the specific allergic person. For TIP, they use the patient’s data and allow that data to inform the treatment plan. I’ve done something similar to this with an elimination diet before and received bloodwork beforehand to inform my diet.
I have only seen TIP offered in the California area right now, and could be wrong about that, but I am interested to watch and see if TIP becomes more popular than OIT in the coming years. Based on the few Instagram accounts I follow who do TIP, this seems to be preferred over OIT because of the more personalized approach. The TIP studies I’ve seen in larger cities, such as San Diego, are for ages 21 and younger only.
Would I Consider OIT & TIP For My Child?
So, this is hypothetical, but I believe if I had a food-allergic child I would consider both OIT and TIP! Food allergies are a spectrum, so my food allergy experience is not the same as others. TIP would be my first choice since I am drawn to the individualized aspect of it. Ultimately, it would depend on that child’s food allergy– their reaction history and overall severity, and so on. Since every allergy is as individual as the person themselves, taking that specific person into consideration is crucial. I will say, you can see online that many people have had amazing responses to both TIP and OIT, so I would say really educate yourself on anything like this from authoritative, science-based resources and decide from there.
Allergy-Safe Snacks On-The-Go & Eating Elsewhere
It’s helpful to keep a safe snack on hand at all times. This way, if something doesn’t go as planned, you won’t be in a panic and without safe food and water. I know I get grumpy without food for a long amount of time, so this is crucial for me even as an adult! Something that won’t melt or spoil in the car is great, like an apple, chips or pretzels, or I’ll keep a small snack in my purse.
While I don’t like cold weather, I have to admit it’s nice being able to keep allergy-safe snacks in my car without worrying about them expiring or melting! So if you live in a cool climate, you’re in luck in that sense. With younger children, you likely are already keeping snacks readily available, but when it comes to traveling and taking trips, I suggest bringing their favorite allergy-safe non-perishable food items and snacks so you don’t have to fully rely on whatever you can get at the grocery stores located at your destination.
Refer to my free & downloadable food products guide for friends & family to get brand names & ideas. This doesn’t mean you need to buy allergen-friendly pre-packaged snacks all the time, though. Fresh foods or foods you already have around the house that can be taken with you in baggies or containers are just as good! Crackers and cheese, carrot sticks, pickles, bananas with pumpkin seeds, and sliced bell pepper & cucumbers are a few possible ideas.
Road Trips & Lengthier Travel With Food Allergies
I used to bring ALL my food with me when traveling if I was going by car and would even bring my own pots and pans and cutlery. It became a lot to manage, and so now I’ve found a balance where I can often bring enough to hold me over for 12 hours or so, and then I’ll shop at a grocery where I am at.
If we’re going on a trip by car, I will bring a few of my regularly used pots, pans, and cutlery from home, but try to keep it to a minimum and I bring my own sponge, dish towel, and dish soap so I can wash whatever I have and also whatever I didn’t bring that is at my destination. It really is up to your comfort level and what works for you and your family. Experiment and find what works & trust your instincts! When I travel abroad and by plane, I’ll wash everything (plates, utensils, pots and pans I plan to use, etc), even if it’s clean, before using it. Often I’ll even line the hotel’s shelves and drawers with fresh paper towels, so there’s no contact with the real surface. I’ll show you what I mean here:
Eating At Another Person’s Home
I prefer to not eat food prepared in others’ homes if they aren’t keeping their house peanut-free for me, and that’s due to cross-contact. I personally believe restaurants that don’t use my allergen are less risky than someone’s home that does keep peanuts in the house, since the food in/out of the kitchen is more controlled vs. in someone’s own home. If you have family and friends willing to not eat your child’s allergen or keep it in their home, I’ve found it makes my life easier and creates a less-contaminated environment. This is especially true around the holidays! Speaking of…
Food Allergic Children & Holidays
I think it’s normal to have a love/hate relationship with holidays if you have a food allergy or manage a food allergy. They can be so fun and a time to connect with others, but with a holiday often comes a focus on food, and with food comes a chance of a potentially life-threatening reaction.
You probably know deep down the accommodations that would work well for your child to be able to enjoy and partake in holiday traditions, so I urge you to listen to feel confident in asking for the accommodations from friends and family, and even any events you want to attend. Food allergies aren’t one-size-fits-all, so listing your needs based on what works for your child is important to help advocate for their needs.
Holiday Traditions Can And Should Evolve
If you don’t get accommodated, it’s better to not risk a reaction. Ultimately, who cares if there is a family tradition that dates back 5 generations that requires your kid’s allergen? Things are constantly evolving and changing, and new, better traditions can be made!
The point is to get together with one another, right? The accommodations you require are valid and can still be just as gratifying, sometimes even more gratifying, than the original tradition! I personally love when events aren’t food-focused. While I do love food, I also have a lot of stress surrounding food when I’m outside of my peanut-free home, or when people are bringing food into my home. Usually, I will eat before an event, or bring my own food, to decrease the potential for a reaction. Doing this, allows me to more fully honor myself, and enjoy the holiday, event, company, and experience.
A holiday may look a little different now that a food allergy is involved, and conversations with family and friends may need to happen, and if so, that’s completely fine! Like I said before, let’s normalize requesting accommodations because everyone needs them at some time or another. Here’s a holiday reminder post I made a few years back that still rings true!
For Halloween, I highly recommend following the Teal Pumpkin Project if you don’t already. It promotes raising awareness around food allergies and giving out non-food treats. They even put out a digital map each year where people can notify if they’ll have non-food trinkets out for trick-or-treaters. We do this each year for the kids in our neighborhood and have found the non-food options are more popular than candy a lot of the time!
Homeopathic Allergy Remedies
Growing up my mom was all about using homeopathic remedies on me. I grew up using all types, such as arnica tablets, arnica gel, calamine lotion, papaya enzyme, acidophilus, essential oils, Chinese medicine teas and tinctures, acupuncture, various salves, and the list goes on and on. There are many out there that are relevant for food allergy reactions such as rashes, itchiness, eczema, stomach aches, etc., and many of them I’ve found I respond really well to.
You still will want to make sure they come from facilities without the allergen you’re avoiding and don’t contain the allergen, but I’ve been told by multiple holistic medicine practitioners that I respond so well to homeopathic because my immune system is so hyper-sensitive (a food allergy literally is an over-active immune system) so a little goes a long way, and this feels accurate to my experience. I still use calamine lotion for insect bites, and try to take a more natural approach first before trying modern medicine which is usually much stronger and has more side effects. I’ve noticed I tend to feel the effects of all medicine more strongly, so it can be a double-edged sword since I often feel the unappealing side effects, too!
Are Food Allergies Considered Immunocompromised or An Immune Disease?
According to Autoimmune Institute, food allergies are caused by, “Specific IgE-mediated immune responses to substances. An allergic reaction produces IgE antibodies, which attack the offending substance (like pet dander, pollen, bee venom, or peanuts). This triggers a release of histamine, causing immediate, severe, and often life-threatening reactions. The symptoms are usually experienced in the airways or on the skin in the form of anaphylaxis or hives.” Their site does a great job differentiating food allergies vs. intolerances, sensitivities, celiac and more and has great graphics explaining each. But I still wondered, is a food allergy considered immunocompromised?
I have called myself “immunocompromised” before due to my food allergy. I assumed I was since it’s an immune response and I have been told by doctors it’s considered an “immune disorder”, so I thought those were the same thing. After doing some online reading on this from knowledgeable and authoritative sites like anaphyaxis.org.uk I still get confused about how I’m supposed to refer to my food allergy, but I believe saying “immune disorder” or “immune disease” or “having an overactive immune system” is the best way.
Their website states, “An allergy is not a form of immunocompromise but an oversensitivity to specific triggers.” All of this to say, food allergies are an immune response in the body where the immune system is over-active towards ingredients that are generally harmless. If you’re interested in the science behind food allergies, I highly suggest the book, Food Without Fear, by Dr. Ruchi Gupta, MD, MPH.
A Heightened Reactivity
I have experienced my over-reactive immune system in many ways besides my food allergy, too. For example, I often have more extreme reactions to bug bites from mosquitos and spiders where my skin usually develops skin cellulitis and I have to go on an antibiotic in order to control it. I’m also allergic to some chemicals and metals and develop itchy skin and a red rash after contact with certain ones. I have a tendency to have stronger reactions to vaccines, not necessarily meaning it will be severe like anaphylaxis, but I feel the effects of medications and viruses in a heightened way due to my immune disorder. You may notice in food-allergic children that overall they have a heightened response to things more so than others, which is why I’m mentioning this! Nothing wrong with this, it’s just an observation.
The Many Forms of Epinephrine
Epi-pen and Auvi-Q are no different than any generic brands of epinephrine in terms of their medical make-up, the difference lies in the size and convenience of administering. I have to say, the easier to administer a shot of epinephrine, the better, but if you can’t get a coupon to make the name brands more affordable, I’ve gotten the generic brand before. The generic version of epinephrine was larger and more complicated to administer, it essentially came with a long page of instructions and looked more frightening since it was basically a giant needle, but it is still the same live-saving medicine.
Hopefully, you don’t ever need to use the epinephrine, I view it as a tool to have in my toolbox but isn’t meant to be used regularly by any means. If filling your child’s prescription will mean not paying other bills, I suggest going for the generic version and just knowing that it isn’t going to be as intuitive to use, will require some additional educating and learning, but that it’s still important to carry. You can also read online or ask your allergist about studies done on epinephrine potency. I’ve read some studies where up to 2-3 years later “expired” epi-pens were tested and basically had the same full-strength efficacy. Since all epinephrine has a shelf-life of 1-year, if stored properly with no heat exposure, it could last well beyond that.
I’ve read online that it is always better to use an expired form of epi-pen rather than no epi-pen at all. You could ask your allergist or doctor about this as well if you have epinephrine expired or expiring soon. Due to this, I rarely dispose of my expired epi-pens until it’s been a couple years. I will keep my most recent ones on me at all times, but keep the expired ones at home or take them with me when traveling in case I need them as backup.
I have almost always found coupons for epinephrine to make them either less than $50 or free, only one year my insurance wouldn’t cover it and I couldn’t get a coupon, and that is when I got the CVS generic (giant needle) version. If I can’t find a coupon online, I’ve emailed the brand directly and talked to a pharmacist or allergist’s office to try to find a way to get a discount. It is ridiculous how expensive they are, and not to go on a tangent here, but it’s a similar situation as the rising prices of life-saving insulin that people need.
Big Pharma Profiting Off Our Food Allergies
These drugs themselves aren’t new and have been around for ages, but big pharma companies slap a label on it and require insurance, and it is very angering how much of a profit they’re making when people are having to risk their lives and go without medication due to the price.
It is worth looking into how the same pharmaceutical companies making an enormous profit off the rise in food allergies are spending their money and the little they do for the communities they’re making billions off of. With that in mind, I hope to see solutions and answers about food allergies coming from companies unaffiliated with these big business pharmaceutical companies. I would trust that they have the allergic individual’s best interest in mind if it weren’t part of their business model to make money off of our suffering.
While I do take my environmental allergies seriously, I have to say, I take my food allergy the most serious. Statistically, this is because my peanut allergy is the most life-threatening. If there’s anything I want someone to know about me, it’s that I have a life-threatening peanut allergy, since it is could mean life or death if someone isn’t aware I have it and have epinephrine on me. I have a medical alert allergy bracelet I can wear for instances when I am alone, and also keep a metal tag on the outside of my purse that says I have epi-pens inside, in case I can’t communicate my own allergy. Medical alert bracelets and visual cues are excellent, but unfortunately not guaranteed to be seen or noticed.
I do have some off-the-chart environmental allergies, so I try to overall be aware of my histamine levels just by observation of allergy symptoms. If it is high allergen season for my allergens, I will likely take Benadryl/antihistamine before bed to lower my overall reactiveness and will be sure to take daily medicine for managing my allergies to try to keep my histamines low. I prefer Claritin and chewable Alavert, but everyone’s body responds differently! I’ve also taken Diamine Oxidase (DAO) supplements for my high histamine.
Epinephrine Degrades In Heat
Speaking of medications being expensive, epinephrine degrades and expires in hot temperatures. Studies have shown even short amounts of exposure to heat can cause the potency to lower, and the label suggests keeping them at 66 – 77 degrees. Never keep your epi-pens in a hot car, and always keep this in mind in warmer climates. It seems the medication is not impacted the same way by extreme cold, based on this Allergic Living article, but since they are so expensive, I don’t like to take risks.
My solution is to keep my epinephrine in an insulin case when the weather is warm. There are many types available, the brand I use is FRIO and I have the type that you soak in water, and the water keeps the temperature stable. I discuss this in my post on attending fairs, festivals, and picnics. I will say, it’s never soaking wet but it will get things in my purse or backpack, etc. a little damp. It has never bothered me, but there are definitely plenty of different insulated controlled options available to explore! There are even smaller types specific to Auvi-Q now, like this one from AllerMates.
Welcome To The Food Allergy Community!
No one wants anything bad for their child, family member, or friend, but if there’s one message I want to spread through my blog, it is that food-allergic individuals can live a wonderfully happy and full life with a food allergy! There’s so much in life to look forward to, and while food can be one enjoyable aspect, I have so many hobbies and other experiences I enjoy. My food allergy also makes me appreciate food in many ways I likely wouldn’t otherwise. I can really appreciate the simple taste of whole ingredients and revel in the joy of eating a safe treat from an allergy-free bakery or piece of fruit. I personally have been able to maintain a healthy and great relationship with food even with my life-threatening peanut allergy. I am an adventurous eater, and vegetarian, and love to try new foods and meals.
Over time you’ll learn what food brands to avoid and which are likely safe, and food shopping will become a breeze and possibly even a fun experience of finding new safe brands to try. You’ll still want to check the label and/or check directly with the company still to be sure nothing has changed, but often the allergy-friendly brands have an FAQ on their site you can quickly go to. More brands are including FAQs which really is helpful to know what allergens are in the facility across the brand as a whole. A good rule of thumb you’ll hear about in the food allergy community is to check each food ingredient label 3x – once at the store, once at home when putting it away, and once before it gets eaten. You’ll be an expert in no time!
“A good rule of thumb you’ll hear about in the food allergy community is to check each food ingredients label 3x – once at the store, once at home when putting it away, and once before it gets eaten. You’ll be an expert in no time!”
If you found this post helpful and haven’t read my other blog posts, I suggest going browsing through the many food allergy topics here. I do have a post specific to ways children describe food allergic reactions that you may also like to read. Please feel free to contact me with any specific topics you want to see covered or any questions you have!
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