Do you have Food-dependent exercise induced Anaphylaxis?

One of my readers is wondering if any of you have FDEIA and would like to chat with others that do have this. Please read her message below and add comments below or contact me if you would like to be connected.

“Hello, like you, have been living with asthma and anaphylaxis related to peanuts and nuts since birth. I have no issue with any of these; I am so used to them they don’t bother me anymore. Since grade 8 I have also had sensitivities to something which was first assumed to be soy or legumes, but which I now believe to be some chemical or additive in processed foods, in particular meats. This doesn’t bother me too much, as it only causes uncomfortable but not life-threatening reactions. For the last few years however, I have a new one to add to the list (new ones aaalll the time – such a blast!). I have diagnosed myself with food-dependant exercise induced anaphylaxis. This is based on (so far) 6 different episodes. I know my body and I listen to it by now. All my symptoms match, but when I tried to explain this to emergency personnel or to two different allergists, they dismiss me by saying I must have come into contact with nuts. I’m sure you’ll agree with me that after a lifetime of avoiding our allergens and living in my own apartment which is completely allergen-free, this is not a possibility. I always have an Epipen and also a very attentive husband who always exercises with me. I’m just wondering if you have contact with anyone else who has this condition, diagnosed or not? I’d even consider some doctors who would be interested in studying my case, not necessarily for my own benefit but maybe they could learn something about it. Thanks!”

Allergies are not fair…

Let’s be honest. Sometimes when we have to miss out on something we really want to do, or perhaps our plate looks less appetizing than the person next to us, we start to think “allergies are not fair, why me?”. It’s what happens when we have allergies. Whether it be food allergies or environmental allergies. I’d be lying if I said that I’ve never missed out on something or felt a little angry and even sad because I could not attend an event. And there have been numerous times when I went to a party and ended up eating veggies while others ate things that looked a million times more appealing… however I’ve always tried to spin my thinking.

It’s easy to start telling ourselves that life would be so much better without allergies, especially the food allergies… It is often easier to focus on what we’re NOT able to do, and NOT able to eat than it is to tell ourselves all the great things that are going on in our lives. Society nowadays leads one to want to compare what they have with what others have. If I have allergies and not one of my friends do, it is easy for me to feel frustrated and think life’s unfair or unjust. Is it always easy for me to embrace life? No, it’s not. It takes a little more energy, more confidence and a lot of honesty.

Whenever I start to feel down about not going to a party because my friends have a dog or a cat or not being able to attend an event because it is in an old, dusty building I just have smile and tell myself “it’s not the end of the world” and plan something else. It is what it is. There are a lot of people out there that would much rather have allergies than the disease they are fighting, or the injuries they have sustained from an accident. Allergies do suck sometimes, however allergies can be managed. We can control our environment. We can control the food we eat. And not everything involves food. We can still go to the movies with friends, go for a hike or a camping trip. To some people, these are all things they wish they could one day do…

Embrace life. Next time you think to yourself that you wish you didn’t have allergies and that life is unfair, think of those that have even more allergies… There are a few people that instead of being allergic to 4 things, can only eat 4 things.  I can’t even imagine.

At the end of the day, what matters the most is not the food you can or cannot eat. There is sooo much more to life. Allergies do feel unfair. Sometimes I’ve wished they’d just disappear on me. Reality is that my life-threatening allergies to peanuts, nuts, lentils and soy are likely here to stay. And I’m ok with that. Are you?

First Date

rose

I figured with Valentine’s day around the corner I would bring up the conversation of dating again… particularly first dates. i have been asked many a time from parents what dating looks like for me. Well, its been a little while since I’ve been in that scene though thought I’d chime in. 

When it comes to dating, it has always been a big concern for me because all of a sudden I am putting my life in someone else’s hands. My action has always been to discuss my allergies and the Epi at the very beginning of the relationship. Even before the first kiss. I’ve never had anyone reject me or turn me down because of my life threatening allergies and asthma. Believe me, if a guy or girl likes you they will ask questions and want to know how they can help keep you feeling safe. 

Where to go on a first date? Some place where food is not part of the game,  or a picnic where you offer to get the sandwiches. I’ve gone to coffee shops or for a walk on the breach or to a park, or done something active like gone for a bike ride. There are sooo many things you can do that do not involve food.

In leaving food out of the first date you can focus on getting to know each other and not worry about the food or stress about having to ask the waiter about your allergies in front of your date. 

The story of an 11 year old girl who survived

The holidays can often prove to be a challenging time for most of us with food allergies. Especially when it comes to dinner parties and such.

Please listen to this young girls’ story and share. It is a great story of survival and strength and shows that it doesn’t take much for some of us with life-threatening allergies to react severely.

http://www.myfoxtwincities.com/story/20342823/atwater-girl-raises-awareness-of-food-allergies-after-holiday-party-scare

During this holiday season, be sure to ask lots of questions and when in doubt, go without. If you are not sure about the food that will be served, eat before the party, and only snack on a few things you feel safe with and are not worried about cross-contamination.

 

 

Victoria Allergy and Asthma Fair! A success.

Today was the Allergy and Asthma Fair organized by “Protecting Anaphylactic Children Today“. There was a great turnout to this event held at the Esquimalt Recreation Center this afternoon. There were speakers as well as several booths set up with resources and treats. Sara Shannon spoke as well as a Ministry of Health 811 Dietician and an Ambulance Paramedic.

Some of the local companies included Crumsby’s Cupcake Cafe, The Market on Millstream and The Market on Yates, Dare Foods, Epicure Selections.

Many of us challenged each other with our spirometry results which was great fun, all thanks to the VIHA Respiratory Health team!

The information booths included:

Allergies Abroad
Health Canada
Asthma Society of Canada & National Asthma Patient Alliance
Allergic Living Magazine
Anaphylaxis Canada
Allergy/Asthma Information Association (AAIA)

If you joined us today, what did you think? Did you return home with some new resources and perhaps new ideas on how to manage either your allergies and/or a loved ones?

Feel free to share comments here!

Food-dependent exercise-induced anaphylaxis (FDEIA)

How much have you read or heard about food-dependent exercise-induced anaphylaxis (FDEIA)? Perhaps this is the first time you hear about this condition. This is one of the reasons I always keep my Epipen on me. One would not want to find themselves without it in a time of need.

With FDEIA; “the patient may go through life eating the food they are allergic to without any reaction, and it’s only when they exercise afterwards that the anaphylaxis strikes.”

I highly recommend having a read through the article below, to hear about a young mans’ reaction.

To read more, go to: http://www.dailymail.co.uk/health/article-2197842/Going-jog-Dancing-Or-just-doing-gardening–How-taking-exercise-trigger-deadly-food-allergy.html#ixzz261SAazOm

Allergies and Language Barriers

Have you encountered a situation when you are unable to communicate your allergies and their severity due to an obvious language barrier? Perhaps you have traveled to a different country where they spoke primarily french, portugese, spanish or another language you may not be very familiar with. How have you dealt with these situations. Have you trusted them when they said that your food would be safe? Have you trusted the hotel staff who seemed convinced no animal had ever been in the room? Do you try and learn some phrases before your trip if you know that your language may not be spoken where you are going?

One trick my parents and I came up with a few years ago was to have someone translate a few key phrases and words for us and write them all on separate pieces of paper for us. When we went to the Dominican Republic years ago, we at least 3 different notes in spanish that we could give to the chef for assistance. One would say: “hello, my name is Erika and I have SEVERE, life-threatening allergies to peanuts, tree nuts, …” another said “can you please help me find something safe to eat?” and the notes went on. I found it extremely helpful to have everything written down, because I didn’t have to worry about not saying something correctly, or mispronouncing it. I felt safe, knowing the chef had very specific messages. The chef on this particular trip was awesome. He did not speak a word of English, though he would nod or shake his head when pointing at items in the buffet, to express whether I could eat it or not.

I find it truly amazing how despite talking, gestures and written communication can be a very successful means of expressing thoughts.

Are there times you have found it impossible to communicate your allergies? Maybe when eating out, or renting a room at a hotel, when you are asking them about cleaning products they use and their pet regulations… How have you felt in those situations? What have you done? Do your friends or family try and assist?

My thought on this topic is to try and have a few phrases in the languages of the place you know you will be visiting. If you live in British Columbia or any other province or territory.. and will be visiting Quebec, don’t worry, there is English and French, though it does not hurt to go prepared, with a few notes and phrases!