Why We Should ALL Care About Life Threatening Food Allergies

by Leila on February 24, 2014

Food Allergies and Classroom Parties

There are a couple food allergy misconceptions I want to clear up with this post.

The first is that peanuts are NOT the only food allergy that can be life threatening. I don’t understand why this is a common assumption. Yes, peanuts are harder to control because the proteins that cause the allergic reaction can become airborne which is a total nightmare.

Peanuts are harder to manage because of the airborne aspect. People who are allergic to peanuts tend to have more frequent breakouts because avoidance is trickier than with something like milk. However, they are not the only fatal food allergy.

Any food allergy can potentially become fatal. Yes. Any.

That is the second thing I want to clear up when it comes to food allergies. If any food allergy can potentially become fatal, and there is no way to predict when a food allergy can become fatal, therefore all food allergies should be taken seriously.

To me, that logic is sound. However, not everyone will agree.

How Do People Die From Food Allergies?

Let me explain how people die from food allergies. An anaphylactic reaction can start out like any other food allergy response, but it turns for the worst very quickly. The body starts forming hives and swelling internally and under the skin – that is called angioedema. Air passages are blocked off and the reaction can suffocate the person within minutes. The only thing that can stop an anaphylactic reaction is an injection of epinephrine aka epi-pen. It is adrenaline that rapidly reduces the symptoms.

My daughter has, unfortunately, gone into anaphylactic shock one time in her life and that day will always haunt me. I almost lost her that day and the swelling was so horrible I didn’t even recognize her.

The only way to prevent an anaphylactic reaction is by complete avoidance. That seems easy but it isn’t as straightforward as that in a world that revolves around food.

The first time someone is exposed to a food that becomes an allergy it is because the immune system has decided that food is the enemy. The body thinks that food is something harmful and it freaks out by producing antibodies called Immunoglobulin E (IgE). Our immune system is what protects our body from harm and in the case of food allergies our immune system is being a bit paranoid – no one knows why some people’s immune systems develop allergies, and no one understands why the magnitude of the reaction varies so much.

If you know about Oral Immunotherapy that is a different topic that involves a clinical setting, initiated and controlled by a board-certified allergist and immunologist over a long period of time. Exposure to a food allergy in a clinical setting is a different circumstance than being exposed sporadically. Oral Immunotherapy is not something anyone does without a doctor overseeing it’s progression. I just want to clarify the difference so there isn’t a misunderstanding of the two.

The only way to stop your body from freaking out and creating IgE’s that cause allergic reactions is by avoiding sporadic exposure. No exposures = no angry antibodies. If your body is not being exposed to that allergen then it has nothing to attack.

Imagine your body is like a castle and your immune system is the castle’s defense system. The IgE’s are the soldiers who attack invaders. The more times your castle is attacked the more you build up your defenses. You reinforce your borders with more soldiers, your soldiers are on high alert and may be a little spazzy. You are expecting battle and ready to attack these enemies every time they poke their heads up on the horizon. If this battle continues to happen over, and over, and over, and over then your body keeps building up the IgE’s.

Continually putting your defense system on alert can result in an uncontrollable and devastating battle.

That is where anaphylactic shock comes into the picture.

Peaceful times in your body creates peaceful antibody soldiers.

The theory is that the more avoidance you have the more your soldiers chill out and it is possible they “forget” that something was an enemy. The longer you go without exposure the less paranoid and strained your defense system becomes. Studies have shown that you are more likely to “grow out” of an allergy if you do not have sporadic exposures. Studies have also shown that the more you expose your body to an allergen the more you increase the possibility of an anaphylactic reaction.

When someone tells me they, or their loved one, has a food allergy I cannot help but stress the importance of strict avoidance. Just a bite of a “mild” food allergy and some benadryl can do more harm than good in the long run. It’s just not worth pushing it even if it is not easy.

When my daughter was an infant, and she was allergic to well over twenty foods that were all possibly life threatening, I was told it would be improbable to avoid all of her allergens to allow her IgE levels to lower. Notice I did not say impossible. I was just told it would be too difficult. It has been difficult but it hasn’t been impossible and we have been quite successful despite a few battles. Our lifestyle is creating a safe home environment and careful measures outside of the home to minimize her exposure. It is not easy but it is what’s best for her.

We have been, mostly, successful. When she has had an unfortunate exposure it sets her back weeks and even months. I see the difference every time she has an allergic reaction – She has a reaction and her body becomes so obviously on alert that the slightest exposure after causes a more severe reaction every time until her body calms down again.

She is now eleven and her food allergy count is down to five. She still has insanely elevated IgE levels but she is improving. It is unclear what exactly has caused her to “lose” some allergens, but we do know that strict avoidance has significantly helped her IgE levels improve. We know that her food allergies can continue to improve or they can change for the worst any day. We just make the most of it and appreciate what we have that day.

The wild card in the deck of allergies is that continuous exposure isn’t the only way a food allergy can go from mild to worse. The scariest thing about food allergies is that you never know when an exposure to an allergen is going to be mild or fatal. One day you can have the sniffles. The next time your airways could close and the only thing that will save your life is with an epi-pen. On the other hand you can have twenty days of sniffles and never need an epi-pen.

You just never know.

But, I Don’t Have To Worry About Food Allergies… Or Do I? Should I?

Anyone can also develop a food allergy at any point in their life without warning. It happens more often than you may assume.

I’ve grown up with mild food allergies. I used to only react to pork and on a very minor scale. I would have to eat an entire ham in order to have any reaction. When I was a teenager I ate Mahi Mahi for the first time and broke out in hives. About ten years after that I ate it again and had a horrible reaction, when I was on a camping trip, after eating one bite. Two years ago I started to react to shellfish. I had never had a shellfish reaction before that day. I was actually on a blogger trip to Santa Barbara as a guest of Toyota and we were eating at an amazing seafood restaurant on the pier. The reaction came on quickly and I thankfully had benadryl on hand because it’s always in my purse due to my daughter’s food allergies. It wasn’t a horrible reaction but my lips swelled up and I broke out in hives. My friend’s and I kind of joked about it all because I looked like a cartoon character but I took it very serious. I completely avoid shellfish now.

A lot of people feel burdened by the increasing number of food allergies. Food allergies being managed at school, and especially over classroom birthday parties, is a huge topic of debate. It is a topic that has strong dividing lines that are exhausting for families of kids with food allergies. Some people feel so strongly against food allergy accommodations that they feel there should be specialized schools for kids with food allergies or they should all be homeschooled. Some people are of the opinion that the only food allergies that are worth accommodating are those that are deemed “severe”.

The problem with that line of thought is no one has an idea when a reaction will go from mild to severe. What causes a runny nose today could kill a child tomorrow.

The other problem with that line of thought is that anyone can become allergic at any time even those that have no family history of food allergies. So, someone screaming for their non-food allergic child’s rights could easily find themselves on the other side of the fence.

Someone could eat something like cashews without any issues their entire life and, without warning, go into an anaphylactic reaction from just one bite.

I will never be okay with or agree with the attitude of excluding, discriminating or punishing those with disabilities. Yes, some people feel that if it isn’t their problem then they shouldn’t have to deal with it. Some people feel that their right over eating what they want is more important than the right of a person with burdening food allergies. The attitude of “Suck it up and deal with not being able to eat the food you want.” can go both ways.

I would rather be known for the person who shows compassion, empathy and looks beyond my own selfish impulses rather than the exact opposite.

It is important that the world develops a little more compassion, patience and understanding about food allergies because while it seems like someone else’s problem… it could very easily become something that changes your life, or the life of a loved one, with just one bite.

We do not push for accommodations outside of school. We opt out of a lot of activities, celebrations and birthday parties. I host mot family gatherings because I do not want to burden anyone with her food allergies and I certainly don’t want anyone to feel guilt if they mess up. We have cut and distanced ourselves from many people who just don’t get it and don’t want to. That is our choice. We do have some of the most amazing friends in our lives who go above and beyond to make sure my daughter is safe and I appreciate them so much. For every selfish, bitter and entitled person who have encountered I am thankful that there are a dozen of the opposite in their place. These hurdles have made my daughter a wonderful, empathetic and strong young lady who appreciates genuinely rad people in her life.

It doesn’t take much for one person to consider the life, well being and care of another person over themselves despite the excuses they may have. One act of compassion may be a burden in a moment of time for one person but it is, literally, worth a lifetime for the person who’s life could end.

I hope more people choose compassion over selfishness.

I hope more people choose life over a death cupcake in the classroom.

Thank you for taking the time and stopping by. My daughter reads my blog and has a lot of input on what I write about when it involves her. I do moderate comments that are extremely hateful because she doesn’t need that and this our space. I’m happy to debate and hopefully enlighten. She does appreciate all of the kind words and general awesomeness and we do our best to laugh off the … yanno, other stuff.

Live, laugh and ninja kick. 

About Leila DontSpeakWhinese

Leila, aka The Ninja, is the advocate for all things not whining. Parenting is fun when everyone stops b*tching! She is the Mom of a big blended family of four awesome kids. They ninja kick through life together. Oh and she is a total jackass.

Comments

  1. Love your blog and post. We have severe milk and egg allergies, and are very contact-sensitive. Love that you include all food allergies in your discussion. Kick on, ninja!
    Alison Johansen recently posted..Grandma Pumpkin’s Morning Glory Orange Blossoms (Dairy-free, Egg-free, Nut-free)My Profile

  2. Crystal says:

    This article has given me some hope…my daughter is about to turn 19 months at 10 weeks she went unresponsive…she is also biphasic…she is also confirmed ana to egg and vinegar….severe allergy to soy which ate her insides and has xaused major problems…since soy what foods she stopped being allergic to she reacts again too..as well as most of her safe foods and new foods weekly….she too has too many soldiers and we don’t know what or why but are nearly at 20 foods ourselves..we found a new allergist that is trying to discover what protein structure she is reacting to and can avoid all foods so we too can decrease her soldiers…this is first article I have read and I have read many that talks and reiterates what new allergist said about decreasing defences and gives me further hope that ee are on the right track and my gut instincts have been correct.

    I wish you and your daughter all the best and it is tho this article is of our journey and I hope we get the same results…

  3. Jeni Cameron says:

    This is beautifully written and just what I needed to read as we prepare for yet another battle with the lead nurse of our school district. Much love to your daughter and your family!

  4. Jenn says:

    OMG – I love you. From your first sentence, I fell in love. My older son is allergic to wheat, rye, barley and egg complete with several anaphylaxis episodes. My younger son was diagnosed with peanut allergies but he has not experienced a reaction as of yet (tested positive only). But time and time again, we hear about how much scarier life is with my younger son (okay, his lack of fear scares me but not his food allergy as much) rather than my older son who is just allergic to wheat, rye, barley and egg. Umm yeah, cause my son never stopped breathing during a rxn.
    As I read through, I couldn’t help nodding my head over and over again – she gets this, she gets this. I cannot share this post enough – thank you so much!!

  5. sandie says:

    I have a granddaughter who has peanut allergy, she is 8 now. I thank you for your article, maybe it will wake some people up. We have been thru alot, finding new allergies along the way. We live in terror of something happening to her. When I am with her, I have benadryl and epi pen in my pocketbook. She has been thru a lot . We try to keep her positive, and trying to teach her to read labels. Sometimes people dont think that it is as important as it is. But please show some compsion for the children, this is their life we are talking about. Can you got without a peanut food so my granddaughter and children like her, live and grow up. Please I pray you do!!!!!!!

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