Another Type of Food Allergy

Me. About the time food allergies hit. Yup. That’s me. And I put it on the internet. Brave, eh?

I have multiple anaphylactic food allergies.  I am anaphylactic to strawberries, melons, and shellfish.  I say I am allergic to melons because I have reacted to cantaloupe  watermelon, and honey dew.  That was enough for me to stop trying melons.  I also say shellfish because I have reacted to crab, oysters, clams, and shrimp.  Pity me.  I have never had lobster.  So sad.

I developed my food allergies around the age of 12, back when allergists used to say kids outgrow food allergies.  Oh, wait.  They still say that.

I have carried an epi-pen for over 25 years.  They used to be these obnoxious red boxes with actual syringes and Benadryl tablets and alcohol wipes included.  Pretty intimidating.  Now they are a travel tube that gets a twist and slam on your thigh to push the needle out.  Much easier.  Except it’s still hard to stick yourself, even as an adult.  And I’m pretty brave.  Ask a few of my grown-up friends.  They have found it quite cool to get the chance to ‘shoot me’ in the leg.

Yeah, I have even accidentally ingested my allergens as an adult.  It happens.  And it actually feels pretty embarrassing.  And I am not exactly an introvert.

One time I was at a work-related pot luck.  After grabbing a chip and some onion dip I noticed that the onion dip was unusually chewy.  Chew-eeeee.  Crap.  Clam dip.  Onion dip and clam dip look very similar in appearance.    It took me awhile to figure that out.  It doesn’t feel all that cool to accidentally eat one of your life-threatening food allergies at a work party, get stabbed in the leg with your epi. by a friend, and then leave the work related party early to head for follow-up at the E.R  Oh, well.

Me again. First year of high school. Nebulizer before every game before Nebulizers were common.

I live in Northern California.  The summer months are the worst for me.  There is not a place on the planet you can go in Northern California during the summer months that does not have a strawberry or melon.  Restaurants are the worst.  Strawberries make a fancy little garnish on everything.  Melons are the choice fruit side.  And even the bar can be a catastrophe with tooth-picked strawberries and cross-contaminated dishes.

I have spent many years hearing comments such as: “Oh you poor thing.  How terrible.” or “What a bummer for you. Strawberries are so good.” Or “Wow. Do you miss eating those?” or my personal favorite “Ha! No lobster or strawberries. You’re a cheap date!”

As a kid those were not the most compassionate things to hear.  As an adult the comments don’t bother me anymore.

Fast forward to being a mom.  My second kid was practically born throwing up and was filling her diaper with blood by 10 weeks old.  That was pretty scary.  Enter another type of food allergy.  It’s life threatening.  And it’s not anaphylaxis.

I would say that most people now are aware of what an anaphylactic allergy is.  The most common awareness is the peanut allergy, that has morphed into nut-free zones.  When I was younger people would follow up my announcement of food allergies by saying ‘oh are you allergic to peanuts, too?’ or ‘are you allergic to bees??’  When I was younger it took a lot of explaining.  And convincing that I wasn’t just a picky teenager.  Now  food-induced anaphylaxis is believed to cause 50,000 emergency room visits and about 150 deaths annually in the United States.

Ellie. Formal allergy related diagnoses include FPIES and EGID. Both a spectrum and potentially life threatening.

However, most people have no idea that there are other kinds of life threatening food allergies.

We aren’t too keen on diagnostic boxes around here, especially with immune system dysfunction and a kid whose middle name should have been ‘atypical’ .  But people respond better to a diagnostic label because it gives them a frame of reference to pull from.  A set definition.

FPIES is different than anaphylaxis, because the immune system responds differently.  An epi-pen doesn’t fix FPIES.  Or EGID. Or Celiac. Or……the other food allergies that don’t fit into the box of anaphylaxis.  These other food allergies that after the smallest exposure results in a blue, lifeless infant whose heart rate bottoms out.  Or who begins to vomit so profusely they have trouble breathing.  Or whose diarrhea does not stop for so many days they are hospitalized due to severe dehydration.  Or who has a third degree burn on their skin where an allergen touched.

How do I know?  I have seen it in action.  I am a mama of a child with life threatening food allergies.  And she does not have anaphylaxis.

If you have been following along Ellie’s journey for any time, you may be saying ‘wait a minute! I thought she was better? I thought she was healed?’.  And you are right.  For more information on that you can watch <here> and read <here>.

But she will always be at risk.  I will always be at risk.  YOU will always be at risk.  And there will always be children with food allergies.

Get educated.  Know how to be compassionate, and sensitive, and aware, so that you don’t unintentionally put someone else at risk.  And by that I mean primarily children.

Do you care for children? As a teacher?  A scout leader?  Club leader?  Or play date organizer?

Those who are in charge of children have a greater responsibility to be aware of allergens.

How?  For school, churches, clubs, birthday parties, day cares, or any outing that involves groups of kids, there needs to be training.  There needs to be conversation.  And if you must include food in your kid-centered function, here are three easy tips to help keep everyone safe and feeling like they are a part of the fun.

1- Get information ahead of time about allergens.  Be prepared to keep kids safe by getting the information needed before hand.

2- Ask the parent, not the kid.  Please do not assume you will get the most accurate information regarding allergens from a child.  Always ask the parent or guardian for specific information on allergens.

3- Be sure parents have a way to reach you.  A phone number is best.  The ability to contact you prior to an event helps get you important information, and reassures parents that you are prepared to care for their child.

These three quick and easy steps are a great spring board for creating an allergy safe environment.

Dealing with allergies?  What you won’t hear from a traditional allergist are options for healing.  Here are some great resources:

The GAPS Diet
Epidemic Answers

Want information on what symptoms of non-anaphylactic allergies might look like?  Try here:

The FPIES Foundation
Food Allergy and Anaphylaxis Alliance

Hope is contagious.  Pass it on.

~ Nichole

source: Food Allergy and Anaphylaxis Alliance