A Food Allergy Can Kill Anyone. It Doesn’t Discriminate

There are a few misconceptions about food allergies that 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 difficult 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?

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. Epinephrine is the adrenaline that rapidly reduces the symptoms.

Different devices inject the epinephrine – the most commonly known one is EpiPen. However, there are alternatives on the market that are more affordable. Please, ask your doctor about the epinephrine auto-injector options.

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.

I don’t want anyone ever to experience the terror I felt that day.

The only way to prevent an anaphylactic reaction is complete avoidance. That seems easy, but it isn’t as straightforward as that in a world that revolves around food in a seemingly anti-food allergy world. It’s easier than you may think. If you get in the mindset that you choose to not allow food allergies to rule you, it makes it easier to let go of the food dependency you thought you had.

A type of food (really, a protein from the food) that becomes an allergy 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 length 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 the 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 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 the battle and ready to attack these enemies every time they poke their heads up on the horizon. If this war, 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 the 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 went 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 and her well-being.

We have been, mostly, successful. When my daughter 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 in the days or weeks after causes a more severe reaction every time until her body calms down again.

She is now fifteen years old, 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 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 a shot of epinephrine. On the other hand, you can have twenty days of sniffles and never need an epi-pen. There are also people who have never had food allergies and the first one is anaphylactic.

You just never know.

It’s never worth the risk.

But, I Don’t Have a Food Allergy… Or Do I? Will I? Will my child?

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 minor scale. I would have to eat an entire ham 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. A few years ago I started to react to shellfish. I had never had a shellfish reaction before that day. The allergic 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 joked about it all because I looked like a cartoon character, but I took it very seriously. I completely avoid shellfish now.

A lot of people feel burdened by the increasing number of food allergies. Food allergies managed at school, and especially over classroom birthday parties, is a heated topic of debate. It is a subject which has sharp 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 homeschool. Some people are of the opinion that the only food allergies that are worth accommodating are those that deem “severe”.

The problem with that line of thought is no one has an idea when a reaction will go from mild to severe. A food allergy 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. Or they could get a severe stomach ache.

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 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 most 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. I need to protect my children as much as possible, and an innocent oversight could kill them. We have distanced ourselves from many people who just don’t get it and don’t want to. I’m not going to exhaust my energy trying to change anyone. We can choose to change our involvement with them. We do have some of the most amazing friends and family in our lives who go above and beyond to make sure my kids are safe and I appreciate them.

For every selfish, bitter and entitled person who have encountered, I am thankful that there is a dozen of the opposite in their place. These hurdles have made my daughter a beautiful, empathetic and empowered 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 with food allergies.

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

But, when they choose the alternative I know that we did our best to manage, advocate and empower with food allergies.

 

Originally posted on my old blog – Don’t Speak Whinese

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