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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Empathy

One thing that I truly appreciate is empathy. So far, I’ve been blessed with amazing family members, friends, and neighbors who are great at being understanding and considerate when it comes to my children’s allergies. Whenever they visit, they try to avoid allergens at least 4 hours before coming over and never bring any allergens to my home. Also, they wash their hands and mouths when they arrive. If we are the ones visiting, they wipe surfaces to make sure there is no allergen protein residue and put away any food product containing dairy, peanuts & tree nuts. If they happen to have had contact with any of the allergens while we are present, they make sure to wash their hand thoroughly to make sure there’s no allergic reaction. Finally, if we have been invited to their home and they feel like offering us anything to eat, they are kind enough to call me beforehand and ask if we can eat whatever it is that they are offering.

On the other hand, I am grateful when someone that’s not willing to give up those allergens when we are around tells me about it. This way, I make sure we’re extra careful when meeting up with him/her.  I am never trying to be an inconvenience; I am only trying to avoid allergic reactions. But the mere fact that you are honest enough and let me know helps to keep my children safe.

Now, when one of my friends or family members goes out of their way to bring me an allergy-friendly product, it makes me happy. This is exactly what happened when we were on our trip in Puerto Rico. My mom’s friend, Angie, knew about Penny’s allergy and while she was shopping in Marshalls stumbled upon Dr. Lucy’s Chocolate Chip Cookies. These cookies are peanut, tree nut, milk, egg and gluten free. Its box says that they test for milk, gluten, peanut, almond, hazelnut and walnut traces in their ingredients and never allow those items in their bakery or warehouse, which gave me a sense of security when offering these treats to my children.  Oh! They’re also Non-GMO. ☺ A physician, who’s also the mother of a child with food allergies created this brand. She states in the cookie box that she built her own bakery to make these treats because she  “know[s] how difficult it can be to find high-quality snacks that taste great”. I agree, at least the chocolate chip cookies, have a rich and delightful taste. What can I say? The cookies were gone that same day. I can’t wait to find more of these delicious treats.

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To all of you that have been kind enough to accommodate my children’s needs, you know who you are, thank you from the bottom of my heart. You have no idea how much easier and less stressful this makes my day.  For me, it is not about convenience, but about not risking my children’s health and lives.

Support is Key

Two years have gone by since we learned that Penny has life-threatening food allergies. It has been all about learning and although difficult, because we’ve had to change our lifestyle, it has resulted in an enriching experience.

 

In the beginning, I made sure I had read all the information pamphlets that the allergist had provided. I searched online and visited food allergy online organizations that provide helpful resources and made sure that the people around me understood that Penny couldn’t eat dairy, peanuts or tree nuts.

 

When Penny had her 1st food allergy blood test, the results were not too high. Interestingly, the result for the dairy allergy was in the “safe zone”, meaning that she could’ve participated in an oral food challenge because it showed that the allergy was not severe. However, she had only experienced allergic reactions to dairy, and they were not pretty. On the other hand, the peanut allergy results indicated that an ingestion of peanut would mean a severe reaction; luckily she had never eaten peanuts.

 

A few months after Penny’s diagnosis, I decided that I was going back to work. I was blessed with a friend who offered to watch Penny while I worked. My friend, Yeshica, understood the severity of her allergies and was always cautious. I am happy to say that while Penny was in her care she didn’t experience a single reaction. In my opinion, it is people like her that make the world a better place. ☺ I was lucky to have found someone with great empathy and understanding that also gave me great support.

 

A year went by, it was time for Penny’s yearly check-up with her allergist. The blood work revealed that now both of her allergies were severe. The allergist told me that it was unnecessary to do a skin prick test- the blood work results were so high that it was obvious that the skin test was going to be positive. Also, it could cause her a severe reaction. This made me more anxious. I felt desperate, helpless, lost… At this point, Yeshica was not going to be able to watch Penny anymore while I worked and I looked for daycares with good food allergy policies without success. I wondered if I was being too picky, but I went with what my gut told me. I always put my kids before anything, so I decided to stay home in order to teach Penny what she can and cannot eat.

 

A couple months after, I had a doctor’s appointment. I enrolled Penny in an hourly care center for a couple hours. The center is a peanut free facility and knows about her allergies. After my appointment, Penny still had one more hour left before I had to pick her up, but I decided to pick her up early. When I got to the daycare center, she was scratching her eyes. I thought she was tired. Then all of a sudden she started sneezing. How strange! By the time we got to the car, she was covered in hives…When we got home, one of her eyes was swollen. I panicked! I thought: “In the daycare center they couldn’t have given her any of her allergens because she has a special diet and she even wears an allergy bracelet.” So, I proceeded to give her Benadryl and called the allergy clinic. Their staff instructed me to take her to the ER. I live literally 5 minutes from the hospital, which seemed like an hour. We got there, and thankfully the antihistamine had done its work. We were kept there for about 4 hours to make sure that no biphasic reaction ocurred and were later sent home. A biphasic anaphylactic reaction is when symptoms recur without the exposure to the allergen. It can happen within 1-72 hours. Thankfully, everything was fine! This experience confirmed that I had taken the right choice by staying home with Penny. Also, now I think back and ask myself if I made the right choice by giving her the antihistamine instead of the epinephrine… If this happens now, I would use the auto-injector- “when in doubt, use the Epi” is my new motto.

 

After this incident, it has become extremely difficult for me to leave Penny under the care of anybody else. Just the thought of leaving her at a daycare center or with anyone else gives me a lot of anxiety… This is when my husband suggested that I find a local Food Allergy Support Group. I searched everywhere without success. The closest one is, at least, an hour away. So, instead, I started this blog in hopes of creating awareness about food allergies. That same month, after a lot of reading and writing, it occurred to me to start a Support Group. Ahhhh, “necessity is the mother of invention”, isn’t it? So, I started asking organizations, clinics, patient advocacy, and pretty much everybody for help. Everyone seemed so excited about the idea, but nobody seemed to know in which direction to point or guide me. Finally, I thought to myself: “if there’s anyone that might want to help, it has to be someone from the allergy clinic.” I was right! The whole staff was very excited and started moving towards helping me create a support group.

 

Last week was our first Support Group meeting! An allergist and the head of the allergy clinic guided it. They talked about food allergies in general, explained what anaphylaxis is, what are the symptoms and what to do in case someone experiences anaphylaxis. They taught us how to use the EpiPen and the Auvi-Q auto-injectors, and answered questions. The next meetings are going to be guided by us, the patients, with the support of the allergist and his team. I am so happy to have finally found the right group of people to help us go through this process and to support each other in every step of the way. Like I’ve said before, in my opinion, Support is the Key when it comes to Food Allergies.

Another Food Allergy Diagnosis

When Winter Break was over, we all went back to our routines. Juan got back to work, Paulo to school, Penny & I to our everyday activities. As I’ve said before, we avoid having allergens in our house, which means no dairy and no nuts. So, school was the only place that Paulo was able to have his cup of milk without me worrying about cross-contact and consequently an allergic reaction. However, when Paulo tried having his usual cup of milk at school, he threw up. That day he said he was too full from the lunch he ate and maybe that was why he threw up. Next day, same thing happened. This time, I was sure that it had nothing to do with being too full because it was accompanied by a week of stomach pain, bloating, gas, etc. Maybe it was a virus or maybe he was starting to develop either an allergy to milk or lactose intolerance.

We decided he was going to avoid milk until we could find out what was going on. He was tolerating cheese, and then one day, after having pizza for lunch, same thing happened. This was the day when he ended up admitted to the hospital (see Hospital Stay). Doctors discharged him with a gastroenteritis diagnosis. I knew something was not right, I felt that it was not gastroenteritis. So, I scheduled a follow up with his pediatrician. After a few visits to different doctors and some tests, it turns out that Paulo has a food allergy: he is allergic to cow’s milk.

This diagnosis taught me that there are different types of food allergies. There are the IgE-Mediated Food-Related Disorders and the Non-IgE-Mediated Food Allergic Disorders. The initial blood test done measured the presence of IgE antibodies to a specific foods. However, Paulo has one of the Non-IgE-Mediated Food Allergic Disorders, reason why that first test came back negative. If you want to find more about Non-IgE-Mediated Food Allergic Disorders, click here… I guess we do learn something new every day.

Like I’ve said before, even though Food Allergies are, most of the time, overwhelming, in my case it has had its share of positive outcomes.  At this point, we are aware of what we eat, we eat a healthier diet, we grow our own organic vegetables and fruits and we know how to avoid diary. Also, Paulo’s reactions are not life threatening. Yes, it is an inconvenience if cross-contact occurs and yes, he gets sick, but his life is not at risk when a reaction occurs. Nevertheless, it is still serious.

We started Food Allergy Awareness Week with another Food Allergy diagnosis in our house. Now I have more than one reason to advocate and raise awareness about food allergies. This week I wear teal for both my kids.

Everything Will be Fine

For the past few weeks I’ve been “disconnected” from the blog for two reason: 1) my husband’s grandmother came to town to visit and I wanted to spend quality time with the family (no interruptions!), and 2) I had one wisdom tooth extracted and recovery took my energy way. But now I’m back- fully recovered and back to our routine.

Like I’ve stated before, we avoid having Penny’s allergens at home, but two weeks ago I bought cow’s milk for my hubby’s grandmother (Mamá Maggie, as my kids lovingly call her). Her house is not allergy-friendly, and why should it be? We don’t visit because she lives cross-country and neither she nor anyone around her has food allergies. And even though she is very understanding and careful about Penny’s allergy, I wanted to have something in the house for her morning coffee…Penny will be going to preschool pretty soon and I need to accept the fact that she is not living in an allergy-friendly world. Sure, I make “our world” allergy-friendly and easier, but that’s not the reality once we go out of the house. We did manage to avoid peanuts and tree nuts, and because we were very careful, reactions were avoided as well. Also, Penny understood that she couldn’t touch the cow’s milk and wouldn’t even go near it. This gives me a lot of confidence, for now I know that she is learning what she can and cannot eat.

Mamá Maggie enjoyed our allergy-friendly homemade baked goods, and she even dared to try Sunbutter and Soy Nut butter. She told me that she enjoyed so much some of our allergy-friendly products, that she will be buying them for herself. Also, she altered some recipes while she was here so they were allergy-friendly and we could all eat the same thing.

I am eternally grateful for Mamá Maggie’s thoughtfulness about Food Allergies- she even thought about them when we were looking for restaurants. I understand that this is something that might not be easy for someone that hasn’t experienced food allergies closely and that is used to not avoiding any allergens… Again, THANK YOU! Things simple as these make me a happier person.

I recently read an article in the Food Allergy & Anaphylaxis Connection Team (FAACT) webpage about the “Psychological Impact for Families Living with Food Allergy” and it stated that, “Children with more than two food allergies and their parents report poor quality of life”. This is our case; Penny is allergic to dairy, peanuts and needs to avoid most tree nuts. Honestly, I can say that Food Allergies are overall overwhelming, and create a great deal of anxiety for me. I decided to stay home instead of working because of Food Allergies, and it is almost impossible for me to trust anyone to take care of my “food allergic” daughter. I even get anxious leaving her with her dad (I know!). After two years, I can say that I am slowly learning to take deep breaths and “let go”. So, two weeks ago, when I had a wisdom tooth extraction and had to rest a lot for 2-3 days, I was “forced” to let others watch Penny. In this case, Mamá Maggie and my husband took care of her. Guess what? Penny didn’t have a single reaction and the world didn’t come to an end. I am grateful for this experience, now I know that everything will be fine. For now, baby steps until I get there!

I still have a lot to learn in this journey, but with understanding, awareness, education and most importantly SUPPORT, we will be fine.