Food Allergies Can Be Fatal

We hope this page will provide some help in preventing a fatal reaction. If you have any other tips, or would like to share a personal story of losing a loved one to this disease, please e-mail FAST.

by Eileen

My little sister Mary was four years younger than I. She died this year at age 33 because of severe allergies to nuts and accidental exposure to them. She was my only sibling.

As long as I can remember Mary was a sickly child. Back in the 60s we really didn't understand why, but we did find out at a year old that she had asthma. My mother was referred to an allergist and Mary had treatment from him for many years of her childhood.

We always knew Mary had asthma, but it wasn't until one day that my mom put some peanut butter on a piece of toast that we discovered she had a severe food allergy as well. Her allergist gave her weekly shots for this and prick testing as well. At this time she was about four years old and we were never told that she had a life-threatening condition, and we were never informed about anaphylaxis.

My sister lived her life puffing inhalers -- they were always in her hand or nearby. She was also taking Theophilin prescribed by her Pulmonary Specialist to control her asthma as an adult, but was never informed that she had a life-threatening condition or even given an Epi-Pen in case of accidental exposure to nuts. Now that we look back, many times that she was in respiratory arrest, she was actually in anaphylactic shock, but the word "anaphylaxis" was never used or mentioned to either her or her family. She felt if she could keep her athsma under control, she was OK, and she already knew she had to avoid nuts.

I remember a time when she went into a home when they had just finished baking peanut butter cookies. It immediately sent her into shock. We almost lost her on September 4, 1998. She and I went out for some Mexican food -- she ate a tamale that had peanuts in the masa. She told me she was having a food reaction and that she would be OK. Driving home, she almost completely stopped breathing. I rushed her home and called 911. They were there within five minutes and immediately gave her an IV and a shot of epinephrine and Benadryl. They rushed her to the emergency room code blue. She came out of it OK -- they watched her for a few hours and sent her home. I remember that night after it all happened, asking her why she had such violent reactions to nuts. She told me she thought she had anaphylaxis and that her doctor was not treating her properly. She was correct.

I felt so helpless, like there was nothing in the world that could be done for her. Mary lived each day like it was her last. She used to tell me that nuts were going to get her one day. We both looked at each other on the night of September 4, 1998, and she had a look on her face as if to tell me "I can't go through this anymore Eileen, its just too hard for me." I will never forget that look she gave me.

The night of May 15, 1999, I had just finished a long day working and I was about to relax in my bed for the night. My husband was away on military. It was about 9:40 PM when the phone rang. It was my mother. She told me they were at a hospital in the city next to theirs and that they were with my sister. She had been exposed to nuts. I asked if she was OK and she said "I don't know. They have been working on her for over two hours and she isn't responding." I immediately called my friend Alina and she drove about an hour to the hospital where my sister was. I was greeted by my father and my sister's fiance Barry. My dad shook his head, crying, and said "It's real bad this time, Eileen."

My sister had obtained her Masters Degree six months before her death. She had just been hired as an Administrator for the Mental Health Department in the county where she died. That evening she wanted to celebrate her new-found success and was going to treat her fiance, her best friend, and her best friend's husband to a fine dinner.

They selected the "Feast for 4," which was a family-style dinner, but mentioned to the waitress that Mary had severe nut allergies and could not have any nuts, nut products or anything that could be cross-contaminated. They all mentioned this three times and made an issue of it. The waitress then called the manager over to their table, and the manager guaranteed them that her food was safe for her to eat.

About ten minutes after they were served, Mary excused herself and went to the bathroom. Within a few minutes she came back to the table and called the waitress over and said "I'm having a food reaction. Call 911. It's going to be bad". She then exited the restaurant with her party onto the patio. She always did this as if she were trying to get air. Her fiance ran back to see if 911 had been called. In the meantime, Mary was gasping for air and her throat was almost completely swollen shut. Her tongue swelled out of her mouth and she began to turn blue and then collapsed. She was unconscious and not breathing. A doctor and five medical students happened to be dining on the patio and witnessed my sister collapsing. They ran to her aid, and began doing CPR. One student ran to the car to get a knife to open her throat with. Just about the time when they were going to open her throat, the ambulance came with no paramedic and no epinephrine. Several minutes later the paramedics came and began trying to intubate her, but her throat was swollen shut. Her pulse was already weak, so they just transported her and continued trying to intubate her and do CPR.

In the emergency room, her heart stopped and they brought her back. We, her family, were not informed of anything that was happening. We just had to wait. They finally took her to ICU where, shortly after, I arrived. We all heard "code blue." We were all sure it wasn't Mary.

About an hour later the doctor came to see us and told us Mary's heart had stopped and there was nothing they could do to bring her back. She was in code blue for three hours, and her pupils had been fixed and dialated since they arrived at the restaurant.

We then went to see her body. It was the most horrible thing I had ever seen. She was swollen from her waist to her head three times her own size. Her lungs had collapsed and basically she suffocated to death and drowned in her own fluids.

This has been very hard for me to write about, but if it can save a life, anyone's life, please please please don't let a food allergy go untreated. Also carry an Epi-Pen everywhere you go -- you just never know.

Mary was supposed to get married. I'm a florist and I was supposed to arrange her wedding flowers. Instead I arranged her funeral flowers. There is a pain in me that will linger the rest of my days because of this night. Please don't let it happen to you.

If you would like to hear another story, please visit the very touching site here: http://www.cbc.ca/outfront/webfeatures/sabrina/sab_shell.html [outside link]. Click on the link at the bottom of the page, marked: "Special Web Feature: Sabrina's Story."

You have just finished reading a touching, true story of how a deadly anaphylaxis reaction affected one woman and her family and friends. Food allergies are very serious business. If you have them and have never taken them seriously before, now is the time.

Food allergies are often considered "silly." One author wrote that she had food allergies and knew so because she would spit out vegetables and fruits as a child. Kevin Sorbo, better known as Hercules, reported in Parade magazine that he was probably allergic to some food because he couldn't stand it. Because of this misconception (that people who don't like a food must be allergic), food allergies are often considered to be a silly excuse for not eating a disliked food.

The truth is, most people with food allergies like the food they are allergic to (that is, if they have ever ingested it), and in some cases may crave it. Not liking something has nothing to do with being allergic to it. And, believe it or not, over 100 people die per year in the US alone from food allergic reactions. Some of these fatalities go unreported since it is unknown what the person died from. This is not a silly excuse for not eating food. It is instead a serious disease that requires that food's (or foods') absence.

Because of this, we've compiled a list of "tips" on how to be safer about your allergies. Although this list is not complete and there are literally dangers "everywhere," we hope the list will help you a little bit in becoming more proactive and cautious.

Potentially life-saving materials: You or your child should carry, at your doctor's advice, an EpiPen if faced with severe food allergies. Talk to your trusty allergist immediately to find out how to obtain this important (perhaps life-saving) device. In addition, if the food allergies are life-threatening, or you just want some peace of mind, invest in a Medic Alert bracelet. For $35 and $15 each additional year, your medical information will be kept on file in case of emergencies.

Avoid eating out. In the United States, it is currently acceptable and legal for restaurants to refuse to give out ingredient listings. This can be very difficult for people with food allergies. Be aware that even if you find a restaurant that works for you now, the ingredients can change, or might vary from location to location. Remember, something safe looking like french fries or a slab of meat may have been fried in something as unsafe as peanut oil. Cross-contamination can also, and does, occur. If you live in a country other than the US, check with a food service there to see what is/is not required. A recent study printed in Journal of Allergy and Clinical Immunology found that many of the 32 deaths investigated (almost half) were from eating out in restaurants and cafeterias. Some of these restaurants told the diners that the dishes were free of their allergens...but they were not. Instead of eating the food in a restaurant, try taking along your own food in a mini-cooler or insulated lunch bag. You'll have all the fun without the worry.

Convenient meals can instead be "invented" by purchasing chambered microwaveable/dishwasher-safe containers. Put in a safe veggie, a protein side, and a dessert in each of the containers. Frozen meals microwave inbetween 2-4 minutes, and are a great way to get convenience and normality. Children's frozen dinners can be supplemented with a little "prize" like the "real" ones have. FAST pioneered this idea (of using TV dinner plastic reusable trays), and we are happy to know that it has been "taking off."

Avoid eating at friends' homes. Friends often do not understand the importance of allergens being absent from all foods. When I ate at someone's home, she refused to show me the label on a can of refried beans. I later got very ill and missed a semester of school. Why not concentrate on non-food related activities, like miniature golfing or smoke-free-environment bowling? Or, have your friend over to eat at your house. If you or your child will not get sick from breathing in a food, and if you know it will be safe, why not take along a little "picnic lunch" to the friend's home?

If you do not have allergies, remember to take other people's food allergies seriously. It is not funny, however it may seem, that someone can get ill from inhaling or ingesting food. Just as you would not make fun of someone who reacts to an enzyme in cat's saliva (after all, that's what a cat allergy generally is), you shouldn't laugh at people with food allergies either. Take their requests for ingredient listings, etc. seriously.

People can get sick inhaling allergens. That's right -- inhaling them. I recently got sick walking down an aisle of breaded items. I was able to smell the wheat present in these foods and went home with severe diarrhea. My wheat allergies are likely not life-threatening, so I would hate to see what might have happened to someone with anaphylaxis.

Schools are required by the Americans with Disabilities Act to provide for children with allergies. Work with your school to get them acquainted to an EpiPen, calling emergency numbers, etc.

[This section was by Melissa Taylor.]

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