This food allergy post is primarily geared towards parents of a newly diagnosed child with a food allergy or multiple food allergies. More and more, friends of mine are having children, and discussing with me food allergies, anxieties around introducing allergens, etc. so I’ve carefully curated and gathered together food allergy resources to provide information for an audience that might be relatively unfamiliar with food allergies up until their child’s diagnosis. 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 food allergy story, I’m speaking from my own experience of having grown up with a life-threatening peanut allergy & eczema, and now as an adult with a life-threatening peanut allergy, food sensitivities, chemical and environmental allergies. 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.
TOC: What To Expect In This Food Allergy Guide
The Ultimate Guide: Parents New To Food Allergy Parenting
- Parents of Food Allergic Children- Give Yourself Credit!
- Follow The Advice Of A Doctor
- Websites, Social Media Groups, Apps, and More
- 10 Questions To Ask Your Board Certified Allergist
- Epinephrine vs Benadryl
- What Are Signs & Symptoms Of Anaphylaxis
- Media Portrayal Of Food Allergies
- Monitoring Allergic Reactions & Fear Around Epi-Injectors
- Transparency Discussions With Food Allergic Children
- Allergic Children Fleeing The Nest
- Food Allergy Internalized Shame & How To Mitigate It
- Food Allergies in Daycare & School Settings
- 504 Plans & My School Experience
- Food Allergy Discrimination By Other Adults
- There Are Kind People Who Want To Accommodate
- It’s A Food Allergy Spectrum
- Cross-Contact & Contamination Basics
- Playgrounds, Daycare, Library & Store Contamination
- Keeping Known Allergens In The Home
- 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 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 Our Food Allergies
- Epinephrine Degrades In Heat
- Welcome To The Food Allergy Community!
Parents of Food Allergic Children- Give Yourself Credit!
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. Even today, I’m still able to lean on her when I need to for advice and to ask questions about my allergy when I was a kid, and what she thinks I should do in various situations and with varying symptoms. So while I know my own body, and trust my intuition, she also knows my medical history, especially in my earliest years when I really don’t know it well.
Follow The Advice Of A Doctor
I’m not a medical professional or pretending to be. I am sharing my own food allergy experience here, what I currently do, and have done in the past, but I am definitely not trying to diagnose or give advice here to take the place of a discussion with your doctor. I’m so glad you’ve found Invisibly Allergic Blog and hope you get valuable information from this post and my website & food allergy resources as a whole. I promise you’re not in this alone. Let’s get started!
Websites, Social Media Groups, Apps, and More
My Top Recommendations For New Parents:
- Allergen “Hidden” Names 101
- Spokin App
- The Itch Podcast
- An excellent podcast on food allergies by Payel Gupta MD & Kortney Kwong Hing of the 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 the harm and help it can do for adults and children seeing these. I wanted to specifically link to these two helpful clips for children of positive representation that they linked in their episode notes:
- Food Allergy Book Recommendations For Adults & Children!
- My top 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.
- 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 as 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 many exist that sell medical alert bracelets, 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, and because of this 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, but I’ve found bloodwork is 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.
You can ask your allergist any and all questions, of course, but I have a few prompts to help 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 weight/age of 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)?
- 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 to when I would use an epi-injector and my relationship with Benadryl. Like I said in the beginning of this post, definitely consult your doctor/allergist on this and develop an action plan together to follow in the event of a reaction, but I’ll share my experience with when I use each. I do not 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. Reactions and symptoms can be very confusing, for both the person having them and the observer. In my experience, when anaphylaxis is actually happening, you can often tell it from extreme signs, like bluing lips, skin, or or fingernails, struggling to breathe or speak, or facial 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 book recommendations!) but I do 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.
The below is taken from the Allergy & Asthma Network page on anaphylaxis. In this article, you can see below that 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 enough and hasn’t come on and worsened quickly, and then I will monitor to see if it’s still worsening or if it seems to be improving. Anytime I feel a reaction coming on, my first step is to make sure my life-saving medication is close 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 know where my medication is.
Media Portrayal Of Food Allergies
In the media, you may see food allergic people being portrayed having major swelling with no other symptoms, or having extreme symptoms but talking and walking through the reaction. This is a dangerous problem, as representing reactions falsely is spreading deadly misinformation. In my experience, reactions are time consuming and can go on for hours requiring constant monitoring, and the after effects don’t stop immediately after a day or two. After a reaction, itchiness on my lip or slight lip swelling can continue on for days where I can tell my histamine levels are still more elevated than usual. Often I’ll suffer from gastrointestinal issues from all the medication, feel fatigued, have insomnia, and overall feel like something is “off” in my body and unlike myself for days to weeks. Especially if required to take oral steroids after the reaction, which is common practice. This is why I go to such measures to try to avoid having a food allergy reaction in the first place, because it isn’t a mild inconvenience and it can be deadly, scary, and traumatic.
When I was a child, 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 be monitored. Back in the 1990s when I was growing up with my food allergy, my mom was basically told by physicians to give me as much Benadryl as it takes to slow down the allergy, and to closely monitor 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 best option for severe symptoms, and can cause issues on its own, so you’d want to use epinephrine if it escalated to including multiple body systems and was worsening and coming on fast. In the past when I’ve gone into an immediate care or ER for a reaction, they will usually give me a steroid shot instead of epinephrine and monitor me for a few hours to be sure I’m getting enough oxygen. Often I’m told to keep taking anti-histamines for a few days afterwards as well, and will be prescribed an oral steroid for days to weeks depending on the severity of the reaction, as I mentioned before.
Monitoring Allergic Reactions & Fear Around Epi-Injectors
A lot of having a severe food allergy is a waiting game– waiting, monitoring, having your epinephrine and anti-histamines on-hand, and using your best judgement if you need to get medical attention or call an ambulance. As an adult, I require 4 epinephrine injectors and need to keep these on me at all times, but I carried only 2 most of my life. However, when I went into anaphylaxis at the allergist, they used more than 2 epi-pens on me and told me that had I not been there to take oral steroids, I would’ve needed to use more than the 2 I had with me, so they advised me to keep 4 on me at all times from that point on. I don’t like needles and never want to use my epi-injectors or get a shot, it honestly really scares me since the epinepherine injectors are meant for all adults, I’m very petite and small, and fear the needle may be way too oversized for my body. However, even with these fears, when anaphylaxis was actually taking place in my body, in that moment, I wasn’t worried at all about using it or the needle aspect. I wanted it and asked for it, because I knew it would help stop the reaction. I think this is common where there may be some needle-phobia going on around epi-injectors but truly it’s life-saving and may look and sound scarier than it actually is.
Transparency 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, and some are more mild and others are severe and life-threatening. Regardless, an allergy can evolve and every 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. A sad fact is, many children and adults with food allergies or anything that makes them feel different or self-conscious, they keep hidden. I used to feel a food allergy reaction come on at in elementary school or middle school and run to the bathroom alone without telling anyone what was happening, feeling shame and embarrassment. Well, later in high school I learned a deadly statistic about anaphylaxis happening to people alone in restrooms, because people go there and feel embarrassed by gastro symptoms or visible hives or swelling, so they don’t tell anybody, but then no one is there to help if they go unconscious. 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 check on me, and come with me, because I didn’t want to be alone in a situation where I go unconscious and/or require epinephrine. 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 practicing feeling comfortable asking questions and/or 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”.
Allergic Children Fleeing The Nest
As scary as it can be for parents of food allergic individuals to let their kids go out into the real world and into various situations, it is necessary for the children to live as freeing as they can, and it 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 a N-95 mask, etc. Having conversations around food allergies and discussing the symptoms of a reaction can help them learn to advocate for themselves and communicate about their food allergy/food allergies effectively at a young age. I know 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. 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, being polite isn’t worth feeling the need to keep eating something potentially unsafe.
I remember thinking it was so cool that I could tell peanuts were likely not in something, since I smelled it and felt no reaction in my body & detected no specific scent. It wasn’t until I was older that I realized others could even eat peanuts safely, there was a period where I thought everyone was allergic. Even after finding that out, I knew that even if others could have it, I never wanted anything to do with peanuts and preferred they be kept away from me. I believe this is common in children with food allergies, there’s no craving of the allergen, it’s more of an issue when someone has a mild allergy diagnosed later in life and wants what they know they’re missing. 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.
Food Allergy Internalized Shame & How To Mitigate It
As a kid and adult, I pretended my peanut allergy wasn’t there a lot of the time, and put myself in riskier scenarios than I would today in hopes it would go away and cross my fingers that that day or night no reaction would happen. I’m not meaning that I ate risky food with my allergen in it, 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 them, 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. It’s funny because I’ve learned over the years that people with disabilities are the accommodating ones, and accommodations for us in turn are typically so bare minimal, it’s like the idea accommodation for others is flipped. Most of the time, I’m accommodating and navigating varying levels of unsafe scenarios.
There is a level of having to have these riskier experiences on your own terms, to know your own food allergy boundaries and limits, but I know personally I felt a lot of shame mixed in around my peanut allergy because of the way society reacted to my peanut allergy being such a terrible thing from such 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, and so naturally I gathered there was something wrong with me, that I was different in an undesirable way, and this really set in and made itself at home inside my mind. It’s taken me many years to not hate the food allergy part of myself. Now 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 to celebrate myself and experience joy, food allergy and all, it is 110% possible! Being cautious around the narrative with children is important to get ahead of these internalized sense of there being something wrong that needs fixing. If you want it, 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. Everyone has their differences and we all deserve love, respect, and joy.
Food Allergies in Daycare & School Settings
504 Plans & My School Experience
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, but nowadays it is a commonly discussed topic, and 504 plans in schools exist, which is wonderful! 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 hard for me to advise accommodations for other children, 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 advised them on what I could eat and not eat, so that would remain the same. But asking for the space to not have peanut products in use would be ideal.
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 eat a peanut-containing snack. 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 where 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.
There Are Kind People Who Want To Accommodate
Whether I show it outwardly or not in a situation, I get offended and feel hurt when someone complains to me about my own food allergy being either a nuisance to them or in a round-about way says it is exaggerated and fake and treats it like it isn’t as important as their optional snack. I’ve had to learn to accept that some people don’t understand and will never try to understand, and 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 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 it. The good news is, you often don’t have to associate with those people for very long, 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 or business, etc. There are SO MANY people are out there who WANT to accommodate your needs, and you get to surround yourself with those people and places.
It’s A Food Allergy Spectrum
My food allergy is a disability, and mostly an invisibly 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, because they assumed my day-to-day experience was the same as their own. It goes both ways, too, 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 .
Cross-Contact & 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 caused 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. This isn’t even a guarantee that the individual ingredients weren’t contaminated earlier in the 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 absolutely amazing when food products and companies are allergen-free certified, 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 expensive, and often mostly sweet foods and not savory. Although, it’s becoming more and more common where you see this happening across the board in varying foods! 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 product.
Playgrounds, Daycare, Library & Store Contamination
Next, let’s talk about contaminated surfaces. People may call this “cross-contact contamination” “cross-contamination” “cross-contact” or “contamination” and it can be referred to as a number of things, but 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. This 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. Normally since I am so careful about vetting the food before I eat it, if I have a reaction, it’s likely due to a cross-contact and a contaminated surface where I picked up trace amount of peanuts from who knows what, and touched my lip, my phone, or accidently contaminated the safe food I was eating with my contaminated hands. Washing my 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, and you can see how the list is quite literally endless. To help, I have a post on cross-contact with examples, another on non-food products that contain allergens, and one on pet-related cross-contact.
Keeping Known Allergens In The Home
This is 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 it at home and to let my house be my safe space. So, if possible, I suggest to not to keep any known allergens in your house to limit exposure & contamination. This has always been key to limiting my allergic reactions and helping with avoidance, but I recognize it may look different for everyone.
Oral Immunotherapy (OIT) & Tolerance Induction Program (TIP)
OIT can be 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. 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. 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 & Internalized Shame
With that understanding, I personally have ruled OIT out for myself as an option, but I have no judgement towards other who have done it or put their children through it. Being cautious of the way we talk about treating food allergies with OIT, to children and in front of children, is important though. Like I said before, 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. 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. However, I’ve experienced anaphylaxis responses after having multiple serious reactions, 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 also some speculation surrounding issues with reoccurring inflammation of the the esophagus, which I don’t know if that’s still a concern or not. Overall, I’m happy 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.
OIT & Adults Working Full-Time
Years ago I looked into OIT where I live in Louisville, KY, and at the one clinic offering it was very interested in me participating since I do have such a life-threatening allergy. However, it was the same allergist that put me into anaphylaxis via allergy testing and mishandled my allergic response. If you read my blog post on this, you’ll know it was a really traumatic experience for me. Not to mention, OIT seems to be more of an option for kids rather than employed, working adults. The allergists office in Louisville explained the OIT process to me and that I would need to come in multiple days a 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, right now, this is 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 am only seeing this offered in the California area right now, and could be wrong about that, but I am interested to see if this becomes more popular than OIT. Based on the few Instagram accounts I follow who do TIP, this seems to be preferred over OIT. Some 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 an allergic child I would consider both OIT and TIP! Food allergies are a spectrum, so my experience is not the same as another persons. Likely 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 person into consideration is crucial. I will say, you can see online that many people have had amazing responses to both, so I would say really educate yourself on anything like this from authoritative, science-based resources and decide from there. Okay, end saga. Next, snacks!
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. 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 temperature sensitive 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 to bring their favorite allergy-safe non-perishable food items and snacks so you don’t have to fully rely on whatever you can get at grocery stores located in 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, banana with pumpkin seeds, and sliced bell pepper & cucumbers are a few ideas.
Road Trips & Lengthier Travel With Food Allergies
I used bring ALL my food with me when traveling if I was going by car, and same with bringing 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 if need be, and then I try to let that be it. If we’re going on a trip by car I will bring 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.
Eating At Another Person’s Home
I prefer to not eat food prepared in other’s homes if they aren’t keeping their house peanut-free, 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 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 them 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 your intuition and feel confident in asking for the accommodations. Food allergies aren’t a 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 Evolve
If you don’t get accommodated, it’s better to not risk a reaction. Eh, 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 accommodations can be made, and new traditions can be made! The point is to get together with one another, right? Whatever your accommodation requires is 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. Usually I will eat before an event or bring my own food to lessens the potential for a reaction, and in doing this, it allows me to more fully enjoy the holiday, event, company, and experience.
A holiday may look a little different now, 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 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 city 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. 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, 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, “A 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, and 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 on how I’m supposed to refer to my food allergy, but I guess saying “immune disorder” “immune disease” or “having an over active 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. Taking antibiotics and steroids I have to be cautious of, because my body reacts very strongly to them, and in the past I’ve lowered my immune system’s ability to fight off infections to the point where I’ve gone into a full body rash after taking an antibiotic and oral steroid. I’m also allergic to some 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 this in food allergic children that overall they have a heightened response to things more so than others.
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, they could last well beyond that. I’ve read it is always better to use an expired form of epi-pen rather than no epi-pen. You could ask your allergist or doctor about this as well if you have epinephrine expired or expiring soon. Since learning this, I rarely dispose of my expired epi-pens now 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 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 on 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 a 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 from these big business pharmaceutical companies, because I would trust they more likely have the allergic individual’s best interest in mind if it isn’t part of their business model to make money off of their 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 more 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 epi-pens on me. I have a medical alert allergy bracelet I can wear for instances when I am alone, in case I can’t communicate my own allergy. Medical alert bracelets and visual cues are excellent, but not guaranteed to be seen.
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/anti-histamine 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!
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, vegetarian, and love to try new foods and meals.
Overtime 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 and 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 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!
“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 children describing food 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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