Peanut Anaphylaxis: The Most Frequently Asked Questions

peanut butter sandwichMost people aren’t regularly questioned about their diet, but when you live with anaphylaxis it’s just part of life.  People have a lot of questions because, unless someone has a family member or close friend who lives with anaphylaxis, the whole concept of a life-threatening allergy to some sort of food is pretty foreign.  And understandably so.  Anaphylaxis means so much more than just a limited diet—it means a limited life and a completely different style of living.

This doesn’t mean that I’m unable to have a full, satisfying life, though, but it does takes more planning and flexibility.

One thing that helps make living with anaphylaxis easier is when people take the time to understand, so I’ve compiled a list of the most common questions I’m asked:

1. Do you react to the smell of peanuts?

Nope.  Part of the general confusion about airborne anaphylaxis comes from when folks use the word “smell.”  People assume that when I say I have an airborne anaphylactic reaction it means I’m either reacting to, afraid of, or don’t like the smell of peanuts.  It really is impossible to react to just the smell itself, though, but that doesn’t mean airborne reactions to even trace amounts of the proteins in peanuts (what people are actually reacting to) aren’t real.

2. What is anaphylaxis?

Let’s look at a quick definition of anaphylaxis:

“Anaphylaxis is a severe, potentially life-threatening allergic reaction. It can occur within seconds or minutes of exposure to something you’re allergic to, such as a peanut or the venom from a bee sting.

“The flood of chemicals released by your immune system during anaphylaxis can cause you to go into shock; your blood pressure drops suddenly and your airways narrow, blocking normal breathing … Anaphylaxis requires an immediate trip to the emergency department and an injection of epinephrine [Epi-Pen].  If anaphylaxis isn’t treated right away, it can lead to unconsciousness or even death.”  From the Mayo Clinic’s website.

Basically, anaphylaxis means someone could die, not just feel discomfort, if they’re exposed to their allergen.  It’s also so extreme that it’s considered a recognized ADA disability because it impairs breathing (which is why it can cause death).

I’m allergic to a bunch of trees and flowers, cows, tomatoes, soy, dairy, and the list goes on, but none of them besides peanuts and mushrooms—even though some of them are extremely unpleasant to have reactions to and could even result in me missing work—are anaphylactic reactions.  This doesn’t mean my other reactions aren’t a big deal, it just means they’re not life-threatening or a ADA recognized disability.

A lot of times there’ll be confusion when someone is talking about an anaphylaxis reaction and using the word “allergy” because everyone imagines the person is just breaking into hives or sneezing.  It’s really unfortunate that people too often imagine sneezing when an anaphylactic reaction to something like peanuts or a bee sting is actually closer to someone eating a deadly poison—death is a very realistic concern.

3.  Are you sure it’s anaphylaxis and not a panic attack?

Well, I didn’t self-diagnose myself as having anaphylaxis.  I told several doctors and allergists what was happening when I was exposed to peanuts, and they told me I’d learned the hard way that I have an airborne anaphylactic reaction to a protein in peanuts.

Also, important to note: some of my very worst anaphylaxis reactions have happened when someone was eating something peanut-y near me and I had no idea I was near peanuts until I started to choke.  My throat begins to close up and I’ll stop breathing if immediate action isn’t taken.  I’d look around quickly while reaching for my emergency Benadryl and Epi-Pens, knowing that I was reacting to something because I couldn’t breathe.  And then I’ll spot a peanut butter cookie or PB and J near me that I hadn’t seen or even smelled previously.

This has happened countless times—on the train, in a college classroom, at the ballet (the person behind me snuck a peanut butter sandwich in, and nobody knew), standing in line at Disneyland, and all kinds of other places.  I’ll tell whoever is with me, “I’m having trouble breathing!”  And we’ll both look around while getting me to an easily-accessible location in case the paramedics have to come and, oftentimes fairly quickly, we identify some peanut product that had previously escaped our notice.

I don’t have to smell the peanuts or even be aware that they’re in the same vicinity as me to react.  And, unfortunately, I’m so sensitive to the peanut protein I’m allergic to that it doesn’t require much exposure at all to send me into anaphylactic shock.  This is why whenever I go to my regular doctor or allergist I’m given the “you-could-die-if-you-didn’t-have-your-Epi-Pen” lecture (they’re always glad to see that it’s on my person).

4. Have you experienced an anaphylactic reaction before?

Yup, I sure have.  A number of times, unfortunately.  One of the most memorable was when I was in Disneyland with my fiancé and our families in September 2012.  A woman in front of us in line for a ride opened a treat with peanuts.  My throat began to close up, I took instant Benadryl but it didn’t work.  My fiancé, Mr. M, had to give me my Epi-Pen and call 911, and we spent about 10 hours in the ER room.  It was a terrifying start to our Disneyland vacation.

Usually my reactions don’t end up with me in the ER, but every single one of them has the possibility to become that serious.  And if I didn’t immediately take Benadryl every time, my peanut reactions would always lead to the ER because unfortunately the reactions don’t just wear off if I get fresh air or go away after a while—they get worse.

5.  Can’t you just leave the room when you’re having a reaction?

There’s sometimes the misunderstanding that because I’m so extremely sensitive to peanuts it’ll act as some kind of sixth sense—alerting me to the dangers before I start to have a major reaction.  Or that if I see peanut-y products, like candies or a PB and J, that I just need to get out of the area.

Unfortunately, by the time that I see something peanut-y that’s unwrapped or start to have a reaction (my throat starts closing up), it’s too late.  I always leave the room quickly, but at that point I’m already having a reaction.

By the time I notice unwrapped peanuts in an area, I’m smack-dab in the middle of a life-threatening medical emergency.  As a result, the only way to avoid anaphylactic reactions is by not being exposed to the allergen (in my case, peanuts) in the first place.

6.  Have you tried masking?

This is a very common suggestion that people make, and something I actually talked with my doctor about a while back.  It really does seem like a great idea at first, which I completely get because I’d wondered if it’d work, too.

My doctor said that the mask itself likely wouldn’t protect me from having anaphylactic reactions.  But the trouble is that even if I had a good enough mask that it did help while I wore it, if I were exposed to peanuts while wearing a mask I’d have a reaction as soon as I took the mask off.  For example, I’ve reacted to my clothing after having been exposed to peanuts.

It’s like if someone encountered a toxic spill; wearing a mask wouldn’t help because it would be on their clothing and everywhere.  As a result, once I get home from having a major reaction I have to shower and wash my clothes to make sure the particles are completely off of everything (after I have an anaphylactic reaction I’m much, much more sensitive even than normal so it’s very important to get everything as clean and peanut-free as possible).

7. Will you outgrow it?  

Sometimes—but not always—people who have food allergies as children will outgrow their allergies as they get older.  Not something to bank on, though and, if you’re talking to the parent of a child with food allergies, don’t tell them it’ll all be a-okay in a couple of years, because there’s no way of knowing if that particular child will be one of the lucky ones.  And they likely won’t be.

That said, I don’t even have the chance of being one of the lucky kiddos to outgrow my food allergies because my peanut allergy started when I was 21 (I’m 26 now for reference).  Those of us who develop food allergies as adults are more apt (I honestly don’t know why) do be anaphylactic.  And we also don’t outgrow our food foes.   

8. Can’t you just use your Epi-Pen?

A lot of people think that as long as I have my magical Epi-Pen on me that I’ll be fine, but all Epi-Pens truly do is override the anaphylactic reaction temporarily.  If I had to use my Epi-Pen it wouldn’t fix things; it’d mean I’d have to be rushed to the ER in an ambulance before the reaction returned with full force.  Basically, it just buys me a little more time (I’ve been told about twenty minutes, but I think it’d depend on the severity of the allergy).

It’s not a solution; it just provides me with enough time to hopefully get to the ER before going unconscious or dying.

Epi-Pens even say on the directions to call 911 immediately after using.  And, believe me, paramedics take it very seriously when you tell them you just had to use your Epi-Pen.

9. Can you take medication or get allergy shots?  

There’s no magic pill that will allow me to eat or be in the same room as peanuts.  Boy, it would be nice if there was, though.  And allergies shots are for your hay-fever variety of allergies, not food-induced anaphylaxis.

10. Do you miss peanuts?

I used to adore peanuts.  I’d even made up my own peanut-butter based mythology (whoever gets to eat the swirl at the top of a freshly opened jar of peanut butter got a wish).  And the summer of 2005, right after I graduated from high school, I lived in Hungary for about four months.  A land that was virtually void of my favorite snack, so my mom mailed me a jar of creamy Skippy every month.

That was then.  Now peanuts and peanut butter are no longer a homey treat when I’m far away—they’re something I have to spend my entire life avoiding.  So even though I was extra fond of peanut butter originally, I don’t miss eating the sticky, gooey product out of the jar.  What I truly miss is the convenience of not having to live a peanut-focused life thanks to anaphylaxis.

Check out my article on how my peanut reaction truly impacts life on a daily basis: Life in a Nutshell: How Anaphylaxis Impacts My Life

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Gluten-Free 101: How do you read ingredient labels?

no gluten free symbolI grew up in a family with a lot of food allergies, so reading ingredient labels looking for random things like mushrooms, mint, carrots, and honeydew was just a part of life.  It wasn’t until I discovered I had Celiac disease that things got interesting—so much to remember!

To my surprise, one of the most common questions I’m asked about being gluten-free and living with food allergies is how to read the ingredient labels on food.  Some friends have told me that they don’t know how to tell what’s in their food, which makes the idea of being gluten-free seem downright impossible.  While it is challenging, due to the fact that it’s require by law to post the ingredient list on food, it’s not impossible.      

Here’s what to do:

1.  Bring a list.  It’s hard to keep track of all of your food foes when it’s still new, so bring a list.  This will help to keep you from purchasing things you can’t eat.

2.  Forget the “Nutrition Facts.” When you’re gluten-free or dealing with an allergy, all of the important info is to the right or below the “Nutrition Facts” (on the back of the box/container/can) in the “Ingredients” section.

3.  Check the “Contains” or “Allergy Information” section.  It should be right below the ingredient list, usually in uppercase letters, and it will often tell you if the product contains a common allergen or sensitivity (if it says it “may contain” something or “manufactured on equipment that also produces”, it means there are cross-contamination issues and you should avoid it).

4.  Carefully read through the “Ingredient” section.  Even if the “Allergy Information” section checks out, don’t stop there!  A lot of ingredient labels, like the Peanut Butter Cheerio one below, doesn’t say if the food contains gluten.  Don’t assume it’s okay until you’ve read everything.  If you read through the “Ingredients” section on the Cheerios below, you can tell that it still has gluten because it contains “whole grain oats” and “whole grain barley.”  So, don’t eat it!

Ingredient List -- Cheerios Peanut Butter2