Of Friendship & Food Allergies: An Interview

When you or a family member is diagnosed with Food Allergies, it can be tough. It’s hard to figure out what to eat, you could feel alienated; it changes your whole life and your perspective on life. However, being a part of the Food Allergy Community is great. You make friends for life, you meet people that understand what you or your family member is going through, people care about you and your life because these people know and understand that it is no joke, these people understand that a little bit of an allergen can be fatal.

About a year ago, I reconnected with a childhood friend, Tania, and this reconnection happened because of Food Allergies. We have a friend in common that kept in touch with both of us, and this friend thought it would be a great idea that we both reconnect because Tania has food allergies and understands what my family goes through in our daily lives. You can never receive too much empathy, right? Thank you, Malena! Well, a few days ago I told Tania I wanted to know a little bit more about her allergies. Penny was diagnosed with food allergies when she was only a year old, so it was fairly easy for her to adjust to a new diet, and she will never miss some of her allergens because she has never even tried them, but Tania was diagnosed when she was a teenager, and things are different when you are older. I thought her story was interesting, and here I am sharing with you some of the questions I asked her and her response.

Let me give you a little bit of context. Tania is a 30-year-old hard-working mother of two, who currently lives in Puerto Rico.

Me: How old were you when you had your first allergic reaction, and, what did you react to?

Tania: “Ever since I was a little girl, I remember having eczema and unexplained hives, but no reactions to food. I remember that after being outside, playing in the sun, my skin would turn red and hives would appear- especially in my neck, armpits, elbows, and knees. My first allergic reaction: I was at the orthodontist, I was about 11-12 years old, and I reacted to the latex gloves that the doctor was wearing. They had to give me antihistamines, but everything turned out all right. The first reaction to food was about a year after that. I was at a fast food restaurant and I took a bite of my honey biscuit and immediately anaphylaxis set in. My throat was itchy, my face was itchy, and I was having trouble breathing. My dad had to rush me to the hospital, and this was my first experience with epinephrine. After getting a shot of epinephrine, and all the other medications they had given me, I was still showing symptoms of an allergic reaction, so I had to stay at the hospital for 3 days.

The culprit was honey. I know I had eaten honey before, when my grandma would make us tea, or when I ate honey biscuits, but had never reacted this way.

After several tests, I found out I was allergic to honey, soy, and latex (which I already knew). From that day on, we avoided honey and soy in our house. Curiously, the doctor didn’t prescribe an epinephrine auto-injector.”

Me: I know these are not the only allergies that you have. How did you find out about the other ones?

Tania: “I was about 17 years old, and it was new years. You know that there’s a tradition in which you eat 12 grapes after midnight for good luck? Well, I was in grape number eight when anaphylaxis started to set in. Again, my neck, head, and face started itching, and I started having trouble breathing. My mom gave me antihistamines and drove me to the nearest hospital.Now, after getting some more testing, I turned out to also be allergic grapes, prunes, and white chocolate. Again, no epinephrine auto-injector prescribed to me at this point.
My next reaction happened about six months after the grape reaction. I was sick; I had an infection and was at the hospital. They were going to give me antibiotics through an IV. The nurse started the antibiotic, and I started feeling an intense burning sensation through my veins. Soon enough, my whole body was covered in hives. The nurse ran to get the doctor, and in a matter of seconds, the nurse had taken the IV out of my arm. Due to the reaction to the antibiotic and the infection, I was hospitalized for four days. At this point, a shift occurred inside of me. I understood that I had severe allergies that could happen anytime, anywhere, and that these allergies could take my life. So, I made an appointment with my allergist and asked for an epinephrine auto-injector.

Later on, I also reacted to a vaccine, which turned out to be an egg allergy. After this, I had an anaphylactic reaction while doing an English internship at the University of Vanderbilt in Tennessee. I ate something that I didn’t know had honey, so my roommate- who, by the way, didn’t know I had food allergies- had to basically drag me to the Student Health Services, where I self-administered the EpiPen.

Two years ago, one of my children was eating popcorn and it had peanuts. He gave me a kiss on the cheek and handed me some popcorn. As soon as I put the popcorn in my mouth I noticed my cheeks and mouth swelling. Yes, I am also allergic to peanuts.

Last but not least, every time I eat gluten, I get hives throughout all of my body. It was then that I discovered that I’m also allergic to gluten.”

Me: How do you feel that food allergies affect your lifestyle?

Tania: “In the beginning, it felt like I was restricted when it came to food. I also lost weight, and I felt isolated. I guess that because I felt isolated, and as a teenager, I didn’t want to feel different, I didn’t take my allergies too seriously in the beginning. I would take risks eating these foods (which is a very bad idea), and thought that antihistamines were going to take care of it. I guess I was lucky that I didn’t have an anaphylactic reaction that took my life when I was young. But with age comes maturity, and after I had that reaction to the antibiotics at the hospital, I saw how fragile life could be, and I started taking my allergies seriously.

Socially, I try to stay away from the allergens and it isn’t that bad, but I have been in situations where I’ve had to leave gatherings because there is one of my allergens, and I start reacting to it by “airborne contamination”.

Emotionally, it’s hard because I have kids, and I don’t want anything to happen to me. I want to be able to see them grow up.”

Me: How do people react when you tell them that you have food allergies?

Tania: “Some people take it seriously, but most people are in disbelief. They comment things like: ‘What? You’re allergic to grapes and honey? I’ve never heard of anyone with those allergies!’ I feel like there is a lot of ignorance because of misinformation.”

Me: How do you create awareness?

Tania: “When I go to places, and I feel like I have to tell people, I let them know. I try to educate them on the subject. I also try not to scare people with my allergies, because sometimes they feel like it’s a weight on their shoulders and feel responsible and scare to eat close to me. I try to help spread the word, and help Food Allergy charities whenever I can.”

Me: Finally, how do you feel about having Food Allergies? 

Tania: “At the end of the day, it is my body and I have to work with it in order to continue my life and in order to be part of my children’s life. I have allergies, but allergies will never bring down my spirit and my life!”

 

I have to say that having Tania as one of my friends has been a blessing. She, not only understands what we go through but also offers us her continuous support. Even though we are thousands of miles apart, it feels like we are in a parallel walk through this journey.

Let’s create awareness, and for this, we have to remember that: “To achieve change, we must speak up. Every voice is Important.”
-Barbra Streisand

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Second Opinion: From one Allergy to Another

Not to toot my own horn, but when it comes to food allergies my maternal instinct has helped save Penny from many anaphylactic reactions. Case in point when she was around one my husband insisted that I give Penny Peanut Butter since it’s a good source of protein, plus we loved eating it. However, something in my head kept telling me not to. I kept telling him, “Honey, what if she’s allergic to it?” and he always replied, “Nobody in our family is allergic to peanuts, why would she be the exception?” Well, let’s say I was pretty head-strong with this and never gave in.  Penny turned one and we discovered her dairy allergy. It was then that I insisted to the Doctor to do an Allergy blood test panel to see if she had any other allergies. Guess what? I was right!

Since then we go to yearly allergy visits that consist of blood work, visiting the allergist and, maybe, depending on the result a skin test. Penny’s allergies have been consistently getting higher each year, so this year her allergist decided only to test her peanut allergy. But something inside me was restless, I was not convinced. I wanted Penny to be tested for other allergens because lately she’s had random reactions and we haven’t been able to figure out what is actually causing them.  Long story short, we got a referral from her pediatrician for a second opinion.

Unfortunately, for her first appointment with her new allergist I couldn’t miss work, luckily enough, my husband was on vacation so he took her in. He told me that, since her medical records didn’t make it to the new doctor, the Dr. was, at first, a bit incredulous. To be honest I can’t blame him. I sent my husband to that appointment with 2 pages worth of information on what had been happening for the past year. Well, the allergist did some blood work right then and there and discovered that her allergies were severe. After that, he did a skin test to see why she is having these random allergic reactions and sent her to the lab to get more blood work done.

On the skin test, he tested for peanut, dairy, wheat/gluten, eggs, dust mites, pollen, mold, and pet dander. There were good news and bad news… The bad, her peanut allergy is still severe, and she turned out to be almost equally allergic to dog dander. I have been reading about service dogs that are able to detect allergens in most any forms: raw, cooked, oil, butter, dust, etc.  We have been planning, for the past year to adopt a dog and train it to detect Penny’s allergens. The thought of it gave me peace of mind, but I guess, that is not happening anytime soon. At least we found out before adopting the dog. The good, her dairy allergy has decreased significantly, to the point that the doctor is comfortable enough to do a dairy challenge.

When my husband told me about the dairy challenge I got mixed feelings. I mean, I am super excited that my little one might be outgrowing one of her allergies, but on the other hand, I get anxious when I think about the possibility of her failing that challenge. What if she goes into anaphylaxis? We’ve been through anaphylaxis once, but it was caused by skin contact. I have never seen her have an anaphylactic reaction by ingestion. Then, I tell myself, what if she actually passes the challenge? This means that she will be able to expand her diet. Mentioning the words birthday parties, potlucks, social gatherings, and Halloween would not have to send me into full blown panic and we will be able to go out and eat with a bit more peace of mind. The peanut allergy is still scary but, in my opinion, easier to avoid or manage.

Allergies take you on a roller coaster of emotions. Sometimes you are sad because your child can’t eat or do certain things, other times you panic (especially when you or your child is having a reaction), you can also get happy that you child can’t eat certain things (we eat healthier; we rarely eat processed foods), but overall I am grateful to be able to know what Penny is allergic to and that there is a medication that can save my child’s life in an event of a severe reaction. Life is good!

Traveling with Food Allergies

Last month, I planned a trip back home for the summer. This trip translates to 9 hours of flying with 1 stop and a 3 hour layover in between. I know: Exhausting!

A week before the trip, I started feeling extremely anxious about flying because my children have food allergies. I have traveled with my kids before, but this time it was different. Since last time, Paulo has developed a dairy allergy and Penny’s allergies have become more severe. At this point, I know exactly what I have to do before flying in order to prevent an allergic reaction: check airline allergy policies, call the airline, bring extra medication and epinephrine auto-injectors, pack allergy-friendly snacks, pack wipes and bring allergy allert wristbands. We have traveled with Delta before and they have been very accomodating with food allergies, so I decided to book our flight with them. To see their peanut allergy policy click here.

Once at the gate, I informed the airline staff  about Penny’s peanut allergy. To my surprise, they had it on the passenger’s list and had already informed the flight crew. We were able to pre-board and wipe down our seats, eating tray tables and window. When it was time for the crew to serve snacks, an announcement was made- they said that they were not going to serve any peanut products due to a passenger’s peanut allergy. However, they didn’t ask other passengers to refrain from eating peanuts. According to a flight attendant it was because they ” couldn’t stop anyone from eating any peanut products on-board”. Luckily, our first flight was smooth: no allergic reactions! 🙂

We got to our first destination and layover: N.Y. At the airport, Penny started coughing and sneezing. Later on, her eyes turned red and became very itchy. I was 100% sure that she hadn’t ingested any allergens, so I proceeded to give her benadryl. About an hour later she looked like she was feeling better: coughing had subsided and she was barely scratching her eyes.

When the layover was almost over and it was time to board the plane, I proceeded to tell the airline staff about the allergy and went on to pre-board and wipe down our area. Again, the airline refrained from serving any peanut products. However, this time there was no announcement made. Two hours into this flight, Penny’s allergy started to get worse. She had nasal congestion, started sneezing again, her eyes became itchy and started to swell up. To my knowledge, Penny has never experienced an anaphylactic reaction, so everytime she starts showing any sign of an allergic reaction, I get anxious. I kept observing her closely- I had given her benadryl a few hours before and it wasn’t time to giver her a second dose.

She hadn’t eaten any dairy or peanut products, which lead me to belive that her allergy was, in this case, a cause of “environment pollution”. Meaning that there were enough peanut particles in the air to cause an allergic reation. At one point, one of her eyes was almost swollen shut, so I talked to the flight attendant, explained what was going on and told her that if things didn’t take a turn for the better anytime soon, I was going to use the EpiPen. What worried me the most was not knowing if her breathing was affected. The flight attendant asked for a Doctor on board, there was none. Lucky for us, there was a medical student sitting right in front of us and was able to listen to Penny’s lungs with a stethoscope. She was able to confirm that Penny’s lungs were not wheezing. This helped me calm down a bit.
We still had about an hour and a half of flight left and we were in the middle of the ocean, which meant that there was no way that the pilot could’ve made an emergency landing if it was necessary. Instead, they contacted a hospital, where a Doctor instructed me to give her a second dose of benadryl. Those were the longest hours that I’ve ever lived. I felt so scared, helpless, lonely and desperate. Thankfully, the airline crew was wonderful: they kept checking on us constantly and offered a great amount of support.

The second dose of benadryl “hit the spot”. Consequently the swelling started to slowly go down and you could tell that Penny was starting to feel better. As soon as the airplaine landed, I called Penny’s allergist and explained the situation. He told me that since she had not eaten the allergen, I should just keep observing her and if she showed any signs of breathing distress, then I should use the EpiPen and take her to the nearest ER. When we got off the airplane, the airline had arranged for EMTs to check on Penny. Later that day, she was seen by a pediatrician in my hometown who started her on cortizone and by next day you couldn’t see any allergy signs.

Up to this day, I still ask myself what went wrong. I wonder if there were enough peanut particles in the air from the previous flight or if someone in our flight was eating any peanut products. Did I wipe our seats and table trays correctly? Was this an inevitable incident? These questions and a lot of other ones remain unanswered. However, I have the satisfaction that I did everything that could’ve been done and that at the end Penny was fine.

On the other hand, I ask myself: What are certain airlines waiting to completely eliminate peanuts on all of their flights? I wonder how important is an “inconvenience” over a persons life. My children don’t have a choice- their lives depend on it. It’s not fair to put someone’s life at risk over a bag of peanuts. Let’s have some empathy and support people with food allergies. Help me create awareness in order to achieve a change. It’s time to make a change and help people stay safe!