A Food Allergy Thanksgiving

This post is for all of us with severe food allergies on Thanksgiving.  This is for each of us who battle through the anxiety and fear provoked when eating in non-typical (and potentially non-safe) environments.  This is for our struggle on this incredibly food-centric holiday.  And this is also to express my gratitude that I have the education and skills to navigate safe travel through the dangerous waters of food that can kill me.

Thanksgiving is a great time of year for us in the good old USA to share and remember those things for which we are thankful.  It’s a great reminder of the plentiful gifts bestowed upon us by the people and experiences in our lives.  It is also one of the most difficult for me due to emotions in the realm of wanting to know I can eat safely mixed with not wanting to be a burden nor make anyone alter their Thanksgiving traditions to accommodate my food-related disability.  It remains complicated for me, so over the past several years, I have made my own Thanksgiving tradition for which I am so thankful! 

I struggled for years trying to find a good plan for this November holiday, but not wanting to travel the hundreds of miles home to my Mom’s house each year (as we all know Thanksgiving is a difficult travel experience for us all), I found myself in a conundrum.  My choices seemed to be go to a home with friends where I either won’t be able to eat, will need to bring my own food, or they will need to be educated and vastly modify what they usually do on this holiday; be alone and cook my own food; create my own version of this holiday that freed me from feeling lonely and reduced my food anxiety all at once.  I chose the last option!

I determined what I am most thankful for during this time of year is time to relax, unwind, rest, and be at peace.  As our days grow shorter and darkness hits at 4:30pm (I live in Boston, and it becomes nighttime dark so early), and I think of all I have and have not accomplished this year with only one month left before the new year… it seemed the best option for me was to create a time period of days that involved only me where I could be safe and happy.

I am an extrovert, so at first this seemed like a strange choice for me.  But as an extrovert, when I am surrounded by others, I get more and more excited and outgoing.  To carve out a few days of “me time” where I can let my central nervous system rest and my energy roll to a beautiful valley low is now so important to me.  My current Thanksgiving tradition of unwinding the year and ensuring I am as free as possible from the anxieties and fears provoked by foods that can kill me is an absolute blessing!  I am so thankful I was able to re-write my Thanksgiving story!!  I am forever grateful to have these days to refill my spirit so my light can shine brighter and stronger.

To each of you out there navigating the emotions of life-threatening food allergies on this food-focused holiday, I hold the same space in my heart for each of you that I have found for myself.  No matter what your Thanksgiving story is, know you are surrounded by love and understanding because as a food allergy informed community we give that to each other, near and far!!  To the adults with food allergies, the parents taking a child to grandma’s for the first time after a diagnosis, to the food-allergic college kids eating away from your parents – to all of you, I know you’ve got this!!

Food Service in the Age of Food Allergies

I often wonder how waitstaff and managers at restaurants feel when I hand them my food allergy list.  Usually, the staff and cooks are thankful that I provide this useful printed tool, but beyond their appreciation, are the concerned?  Are they annoyed?  Are they under the assumption that I just don’t like nuts?  No matter what they may be thinking, one point that recently became overwhelmingly clear is that they are at risk.  That food service provider who I just handed my list to may not realize they are now tasked with keeping me healthy and alive.  In my home state of Massachusetts, we have laws that require training for food service providers.  Waitstaff and cooks are much better informed in Massachusetts than some other states.  These folks might be more apt to fully understand their role in ensuring a customer with severe food allergies does not end up in the ER. 

For food service providers with no required food allergy training, they may not know that they could send me to the hospital if they forget to tell the kitchen about my allergies.  They may not understand any legal or emotional liability they take on when I sit in their restaurant.  I do know that on November 11th, the manager of a restaurant in the Raleigh-Durham International Airport did everything she could to serve me a safe lunch, but was still left knowing she accidentally served me something that could have killed me.  And if I was the type of person who thought lawsuits were the thing to do, she could be facing a day in court.  If I had died, who knows what she could be facing… My heart goes out to her because I know she tried (talked with me about my allergies and the menu, sanitized the food prep area, prepared my food herself), and with my assumption all humans are good and caring, I can imagine she was upset when I required emergency care and an ambulance ride to the hospital.

As I shared recently, a food service manager, despite having had food allergy training, served me food contaminated with one of my severe food allergens.  This occurred despite my best efforts to inform and the manager’s best efforts to keep me safe.  After the incident, I spoke on the phone with the Food and Beverage Operations Manager in the airport.  I learned this allergy-contamination happened due to a different food service professional filling onions on top of depleted, yet lingering, almonds.  The onions were part of my meal.  One person was trained and cautious (the manager), but due to a colleague not being trained and/or not being cautious (the person who refilled the onions), the trained individual unknowingly created a very risky situation. 

Out of my terrifying experience, I also learned from the F and B Operations Manager at the airport that the airport immediately restructured their tiny kitchens to get known severe allergens off the line and stored separately.  He also shared that they were expanding their food allergy training program for everyone working in a restaurant in the airport, including bringing in NSF (The Public Health and Safety Organization).  As he described what they had changed, tears welled-up in my eyes.  I was so thankful that they understood and that they would help keep others like me safer in the future!  Thanks to the fast actions and education offering that resulted from my anaphylactic reaction at the airport, others may eat with less fear during a long day of travel.  Thanks to the airport’s food service responsiveness, they also took a huge step to protect their staff members from a food allergy mistake.

Of course, as people with severe food allergies, we also hold responsibility in keeping ourselves safe.  If we travel (or dine outside your home at all), make printed lists of food allergies that can be given to the restaurant.  Ask to talk to a food-allergy trained worker or manager at the restaurant to discuss allergies and foods that may be safe.  Be willing to not eat if they do not have a food allergy training program for their establishment.  Be knowledgeable enough to both inform them of what you need and interpret their response to judge if the food there is safe.  And on that note, any restaurant who does not feel they can keep someone with a food allergy safe should clearly inform them of that – food allergies are not the time to give it your best effort and hope for the a good result.  Having said that, as we know, accidents will still happen (as happened to me on November 11th), so always carry two epinephrine auto-injectors!!!

As I have thought back on my reaction from a few weeks ago, I wonder if we can do more for food service providers.  How can those of us with food allergies assist them (this, I think is clear – we make tools to provide in restaurants, we communicate details clearly, we ask questions, we assess, and we hold the primary responsibility to keep ourselves safe).  More importantly, how can we, as a national and global community, support food service providers as the number of people with life-threatening food allergies grows?  Do the laws in Massachusetts, Rhode Island, and Michigan protect our restaurant servers and kitchen staff and should they be expanded to all states?  Have we identified the minimum education requirement that will allow someone working in a restaurant to understand and accommodate food allergies?  I don’t have the answers, but I know we must do more!  By protecting restaurant workers, we also protect those of us who are deathly allergic to foods.

This is a community problem that can only be solved together!

Anaphylaxis at the Airport

November 11th is many things to me.  It is the day we honor our Veterans in the US.  It is also the day that my best friend was born.  Now, it is the day when I did everything I could at a restaurant to have safe access to food and was still served a hidden food allergen in my meal.  It is the day I was administered epinephrine in an airport security area and the day I went to the ER instead of getting on my flight home.   It is another day in my list of days when my life was threatened simply by trying to nourish myself.

Five colleagues rode with me in the airport shuttle, some with earlier flights and some with slightly later flights.  It had been a long couple of days and we were happy to be headed home.  After making our way through airport security, a few of us settled in at a chain restaurant near our gates.  My colleagues let me pick the restaurant due to my food allergies and I went with the national chain due to a higher likelihood of better training on food handling and possibly even the chance for a gluten free menu.

This restaurant did not have a gluten free menu, but it did have a note that I could speak with a manager about food allergies.  After quickly assessing that the server did not have any understanding of allergies, I asked for the manager.  When the manager arrived, I handed her my food allergy list, explained that my allergies were very severe, and asked if there was anything that would be safe to eat.  She asked if there was anything I was considering, to which I replied, “The hamburger, no bun, no onion strings and no fries.”  She looked over my list again and shared she could also get me the burger along with a salad with no nuts and no tomato.  Great!  I felt like she had this under control.

I sat with my colleagues awaiting our food and chatting about random stuff, amongst a few questions and thoughts on my food allergies (especially when the server stopped back twice to clarify a few things on my allergies…and again, I am thinking they are super cautious and want to ensure they are getting it right – the server even shared it is the manager herself preparing my food).  Then our food arrived and it looked good!  I ate my hamburger patty with no issue and then moved to my salad.  I didn’t put any dressing on it because I often find dressing is where gluten is often hidden and I don’t want stomach pain and upset on my flight home.  One bite…two bites – it tastes good!  Goat cheese, cranberries, greens, orange wedges appear to be the contents.  Around the third bite, I noticed some itchiness in my mouth, but at first dismissed it as pollen cross-reactivity.  I remained my typical level of happy and content.

Then, I saw it.  I said out loud, “is that a seed?”  My colleague looked over and the foreign object was identified as a piece of an almond.  “I am allergic to almonds,” I said out loud even though my colleagues are already aware of this.  And then the realization hit me.  My itchiness in my mouth is the start of a reaction!  But I instantly went into denial.  I told my colleagues, “it could just be anxiety.”  I feel my tongue swelling… my colleagues are asking me questions…they want to know where my epi-pen is and if I need help.  It all felt so overwhelming.  I told them where my epi-pen was and that I needed a minute to assess and they let me take a breath.  I grabbed my phone and took a photo of the salad, followed by a couple of deep breaths.  I remind myself that was an almond and due to the speed of my tree nut allergy, seconds matter.  Itchy lips and tongue, swelling is starting on my tongue and lips, and I feel like I am out of it.  I quickly determine, yep, it’s anaphylaxis. 

I looked to my colleague on my left who is a pharmacist and trained first responder.  “I am having a reaction.” As the words left my lips, I could feel it progressing.  Terrified, I started to cry – I have been here too many times before.  But my colleague is already up and has my bag – she said we need to get help and I followed her.  She led me to airport security.  I was getting dizzy.  Before I knew it, I was sitting down.  I could no longer think to take care of myself.  Security asked about my epi-pen, my colleagues asked too.  I couldn’t think to respond, but I could think that my medic alert bracelet has my information – I point at it and got the words out that “this is all my information.”  I am moved to another area…I felt so dizzy, but I was not yet wheezing.  There were so many people around me suddenly in the little room they moved me to and they all had questions.  I just say, “I am not wheezing yet and wheezing means it’s really bad.”  This was not the right thing for me to say and it is not in line with my food allergy reaction protocol.  What I failed to convey is that, because my reactions progress so quickly, I am to administer epinephrine at the first sign of a reaction.  The scariest part of my reactions is how quickly my cognitions slips away from me.

The airport fire department medic began taking my vitals and suddenly I noticed my throat was really closing up.  It felt like I yelled “I need epinephrine!”…but it could have been a mumbled request at that point, I can’t be sure.  They administered epinephrine.  It’s an amazing medication.  Within seconds my brain fog cleared and my symptoms began to resolve.  The EMS team arrived and continued monitoring me.  Unfortunately, I started to slip back into a reaction.  The itchiness in my mouth came back and I started to feel dizzy again – my first thought was not to tell them because I didn’t want me or my colleagues to miss our flights (again, my cognitive symptoms and poor decision making during a reaction is always the scariest part when I think back).  Luckily, they began to pick up on my symptoms and it was time to go to the ER.

With my colleagues by my side, I was on the stretcher and headed out the door.  It pissed me off that people were looking at me as we left the airport and probably wondering what had happened.  I wanted them to know that someone in that airport had poisoned me!!!  I wanted them all to know there were bad people there who tried to kill me.  As often happens after my first dose of epi, I was angry and agitated…but I kept it all inside.  I Kept trying to say thank you to the paramedics.  And now, two days later, I want to sincerely thank the paramedics, fire department, airport security and my colleagues for all the assistance.  I am ok today because of them. 

Physically, I am here and ok…emotionally, I am a mess…but I will get through this.  I will get through the fear that lingers after a reaction – fear of being outside my house, fear of being away from my epi-pens, fear of eating...  One thought I can’t shake - they say a cat has nine lives…how many does a woman with anaphylactic food allergies have?

Ukraine! Travel Memories & Food Allergies... From a Guest Writer

Today's post is written by my dear friend, Sarah Mravec!  She has been there more than once during one of my anaphylactic scares and her written humor translates into 100% funny!  Happy reading :-) 

Amanda and I have traveled together to seven countries over the course of our nearly decade-long friendship. In 2012, during the time Amanda was living in Vienna, Austria, we chatted one day over Skype about where our next adventure should be. “Oh, where to go next?”  

We decided to visit Kiev, Ukraine in May 2012. What?! Well, she wanted to see her friend Adam who would be visiting the city, and I wanted to see whether the rumors of people walking tigers on leashes in downtown Kiev were true. I love animals… I just wondered if the city was filled with quirky, flamboyant personalities with flair to spare, who assumed walking tigers on leashes is the prevailing norm. So, those were our reasons. At the time, they seemed solid. Well, hers is still solid. Mine was always iffy. Regardless, I was all in. So, I booked a ticket.

“I am a seasoned traveler. Suck it up princess,” I told myself, as I struggled through the seventh bleary hour of rapidly waning interest in bratwurst, duty free jewelry, and lederhosen, during my long layover in Munich, Germany. We planned to meet there, and head to Kiev. Finally an aero miracle - an A320 from Vienna landed! Hurrah! Amanda’s plane arrived; we embraced, had a quick drink, and then caught our flight to Kiev. We arrived to a lovely apartment on the edge of the dodgy part of town. The building boasted a decrepit elevator, and we smartly declined its service in favor of walking up three flights of stairs (but not before taking several photos of the old lift, pretending we were riding it, and then posting photos to Facebook to scare our friends and families). The Kiev apartment was quite lovely and was what one might imagine of older, quintessential Russia.

The (unused) Elevator!!!  Yep, that's an elevator!

Many things happened during our trip to Kiev. We met up with Amanda’s friend Adam; also a seasoned traveler and a truly awesome person, and we spent our days and evenings with him. Hanging out with Amanda and Adam was the highlight of the trip. We were the three amigos, but Ukrainian style. We had a great time – we didn’t always feel safe, and there were a couple of very tense moments that might be suitable for a “What to Expect in Kiev” blog, but on the whole, we had a marvelous time.

… Except for one day, near the end of our trip.

Amanda, already on Vienna time and a morning person if ever one existed, acclimated much better to the damnably early rise of the sun. She popped out early one morning to grab some groceries across the street… foods that worked with her allergies, like yogurt and some fruit. She arrived back at the apartment. The doorbell rang. I was starting to rouse from slumber, but wasn’t in a position for company, as I was still in mismatched pajamas with hair askew from several days of intentionally not showering (more details on that in a bit). She looked through the peephole and saw two men milling about. She said “Hello?” several times and they didn’t respond. Very odd.

She came into my bedroom and reported the situation. I was confused. Was I still in DC and listening to some early morning cable news show? I was in Cosmo Kramer mode, but even less coherent. We chalked the situation up to language confusion and a case of knocking on the wrong door. Twenty minutes later, the same two men were knocking outside of our door again. Again, Amanda said “Hello?” and they didn’t respond. No words. They lingered a while, then disappeared.

Amanda and I have traveled enough to know that you shouldn’t be ethnocentric when dealing with other cultures. However, the men at the door did not say a word. And this freaked us out. So, we decided to leave the apartment at once. In a flurry, we threw our stuff into our suitcases, and booked a hotel room across the city near the U.S. Embassy, in a different and somewhat safer part of town. We both were due to fly out the next day, but we didn’t want to take any chances.

We checked in to the hotel, feeling safe and secure, and we were hungry because we hadn’t really eaten that day. The hotel was a well-known U.S.-based international chain, so we felt safe ordering food, especially given Amanda’s food allergies. We ordered some wine, and perused the menu in good spirits. The menu consisted 95% of Ukrainian language descriptions, with 5% English words thrown in for good measure.

What happened next might be every anaphylactic traveler’s worst nightmare. Amanda took a couple of bites of her limp lasagna that resembled grey roadkill, and then looked at me with wide eyes. I saw her expression and immediately started panicking. I knew what that expression meant. Amanda doesn’t make this face often.

I will never forget the next few moments. She said “I think I might be allergic to something in this lasagna.” She started feeling a potential reaction, and was completely unsure of the ingredients. She sat very still for a few moments, which truly felt like an eternity, trying to assess if she was in fact having an allergic reaction to her meal.  She took an anti-histamine to slow any potential reaction.

At the same time, I felt helpless…I looked at the menu again. Trying to keep my wits about me, I did my best (and it was a poor attempt) to translate the Ukrainian menu, and to summon my memory of what Amanda had told me about administering her Epi-Pen. Was it just one pen, or two, that was needed? On the thigh, or in the arm? Does it auto-inject? Do I stab her with it, like in Pulp Fiction? Seriously, does she need one injection or two? How do I open this thing? Oh my God… what do I do?

Amanda was understandably panicking, but also weirdly calm, thinking of what to do next. And, that’s like her. Even in panic, she is calm. As I was reading the menu, nothing other than the words “lasagna” and “pizza” were translatable. We flagged down the waitress to ask her questions, but broken English prevailed, giving us no firm answers.

Amanda rummaged through her purse and got her Epi-Pen ready. I remember asking her quickly how best to administer it, in case I needed to do so for her. The instructions were so lengthy, and the type so small, I felt convinced I would screw it up, and my friend would truly be in peril. I had no one to ask for help, and no idea how to call for an ambulance, if we needed one. And, because I was aware how anaphylaxis works, thanks to Amanda, I knew time was of the essence to make these crucial decisions and take action.

A few more minutes passed. In Amanda’s world, when it comes to anaphylaxis, minutes count. In fact, they matter greatly. Around the five minute mark, she thankfully sighed with relief and said “I think I’m fine.” All clear, Houston.

For Amanda, and for me, the episode was truly harrowing. When traveling, especially outside of the U.S., there are always cultural differences and nuances that increase your vulnerability. In this case, language barriers prevented us from being able to communicate meaningfully with the kitchen staff, and barred us from reading the menu with strong comprehension. The Ukrainian alphabet consists of Cyrillic script, which is largely not translatable to English in the same way that, say, Spanish or German might be.  For example, in Spanish, the word tomato is “tomate”. In general, the Ukrainian language does not afford these types of rough language equivalencies.

I am happy to report that Amanda had a close call, but was completely fine. The worst thing that happened on our trip to Kiev (aside from fleeing our apartment) was our self-imposed moratorium on taking showers and baths. The water in the apartment was not filtered, and we found that out after each taking a shower the first day from the landlord. I was on antibiotics at the time, battling an allergy-induced sinus infection, so it must have killed any bacteria that would have otherwise liked to take up shop in my body. Amanda, unfortunately, was not on antibiotics, and had to deal with a bacterial infection a few days after taking her one and only shower on the trip.

Safe to say, I think we both learned several lessons during this trip on how to play it safe when reading menus scribed in foreign languages, not answering doors when very strange strangers knock, and the value of being stocked with wet-naps (aka portable showers) to do the trick when an actual shower is not possible!

Author: Sarah Mravec, August 2016

Taking in the sights in Kiev!  Thumbs up!

Visiting a museum, like tourists do - photo, yes, smiles, no at this memorial...

Mylan and the EpiPen

Hot topics today include the pharmaceutical industry, prescription costs, insurance coverage and life-saving medication.  All of these topics are swirling around in social media and popping up in articles because of the pharmaceutical company, Mylan, and its rising list price of their EpiPen auto injectors.  For me, it’s a double-edge sword.  The high prices suck and it makes me furious that there are folks out there with anaphylactic allergies and no EpiPen.  On the other side, however, I can’t stop thinking about this company who has consistently provided these quality products to the market – these products that I would be dead without.  EpiPens have saved my life more than once.  For that, I have a bucket of gratitude to dump all over their business decision-making heads.  And because of that, I cannot let the blame be unfairly laid only on their shoulders.  I have to make sure people also think about how the insurance companies contribute to this.  How our privatized health care system contributes to this EpiPen financial mess.  And how the government regulations, vendors/suppliers/etc that all contribute to the 2.6-billion-dollar price tag to develop and bring a new drug (life-saving or not) to market.  Having said that, though, Mylan did not develop the EpiPen…

In 2007, Mylan acquired Merck KGaA which included the now hotly debated EpiPen auto injectors (if I remember correctly, this came to the tune of around $6.6 billion big ones…so though Mylan didn’t develop the EpiPen, they paid those big development costs as part of the acquisition purchase).  Since then, the list price of a prescription has increased from under $100 to $600 for a two-pack.  Mylan is a business and business decisions are often focused on creating or increasing profits (especially for publicly traded companies) – from this standpoint, Mylan is a rocking it!  Due to their competitors’ inability to develop a consistent and reliable epinephrine auto injector, Mylan cornered the market and with no competition, had no incentive to keep the price low.  As I mentioned, though, they are a business, not your mama and definitely not Mother Theresa, so what else do we expect?  While expecting more is futile, demanding a business bend to its consumers wants is not new nor unusual…especially when prices skyrocket with no explanation of why.

None of this business-sense means anything to those of use with anaphylactic allergies.  As consumers, we see a product we have to buy if we want to live coupled with fast rising out of pocket costs for that product.  What’s worse is that some of us who are under-insured are stuck paying hundreds of dollars every time we need another EpiPen prescription (or not finding the cash and going without this life-saving medication).  Personally, I am well-insured and my copay is only $30 (which is more than covered by Mylan’s instant rebate program – speaking of which, they did just increase it from $100 to $300 as shown in the graphic below…and increased their patient assistance program for families making up to 4x above the poverty line).  If Mylan wants to keep up these assistance programs, they need to charge a certain amount (unknown to me, but something somewhat substantial) – the reason they need to charge a certain high amount is to, in a way, pass the costs on to the insurance company instead of the patient.  Not ideal, and of course, still driven by business/bottom-line decision making, but an effort to ensure they can pay their 30,000 employees and still get life-saving medication to patients.    

One common theme to today’s hot topics have been an overwhelming shaming of the pharmaceutical industry.  A shaming that is misdirected, misinformed, and to me, hurtful.  I am an employee in this industry.  I grind away on clinical development of new drugs.  I work my butt off with large teams of amazingly brilliant colleagues to try to develop, test, and bring to market drugs for rare diseases for which there are no treatments.  These are diseases that kill people every day.  Every day (yes, I mean 7 days a week), I am filled with the extreme stress of my work, at a detriment to my own health, because as a pharmaceutical industry employee, I want to help improve and save the lives of others – I want to find new medications to give that person losing their fight to Huntington’s disease or losing their quality of life to Lupus a new hope.  Every time I hear someone shame the industry, it eats away at me.  It hurts to have others think I am greedy and filled with bad intentions when I am everything but that.  Please do not expect us to make life-altering and life-saving medications (remember $2.6 billion dollars invested, plus my blood, sweat, and tears) and then give it away for free.  It is an expectation that is not only unfair but absolutely ridiculous.

Food Allergy Awareness: Europe

After a recent trip to visit friends in Switzerland and Austria, I noticed something amazing.  In Austria, food allergy awareness had increased since I lived there almost 5 years ago.  I noticed food allergy codes required on menus to note where an allergen may be present.  It made my dining experiences so much easier and less stressful.  I was so happy to see this advancement for food allergies, however, I still remained vigilant to protect myself from accidental exposure to my food allergens.

I soon found out there was a new law governing food allergy awareness, labeling and education in the EU!  It requires trained restaurant staff, coding or some way to communicate allergens on a menu, and proper labeling for food allergies on any food product.  The menu notifications are a letter code system.  The good part of traveling in Europe is that even though the languages are different, the letters are basically the same (unlike non-latin based languages).  This allows the code system put into EU law in 2014 to be easily understandable across languages.  Read more about it here and for Austria, here.

In restaurants, it is always important to have food allergies in writing (see my list here).  Communicating clearly is important, so when in countries where English is not their national language, ensure the food allergy list is translated into the local language AND dialect.   Self-translation is an option but there are also many services that can do this for a fee or I recommend reaching out to that country’s English-speaking expat communities online to help guide you with local translation.

Stay away from street vendors, food-stands with small kitchens, or anywhere that the food is not made on-site in a full kitchen.  Never order your food online if you want take-out, always go to the restaurant to order and explain your allergies just like you would if you were eating in the establishment.  Additionally, on a related note, when eating in someone’s home be extra cautious about cross-contamination in their kitchen…this can be difficult for multiple reasons, but it is very important to ensure they are aware that avoiding an allergen is more than just not adding it to your food.

When shopping for food, ensure you only purchase things with a label of ingredients and read it carefully, looking for your food allergies – actually, go ahead and review the ingredients twice.  This means if you have a nut allergy, ensure you have the translation for each type of nut (this also goes for the translated food allergy list for restaurants).  If you have a milk allergy, ensure you know all the ways milk may be noted on an ingredients list (e.g. cream, milk).  If you are unsure, find someone who works in the store who speaks English.  If you can’t find someone, don’t buy it and try another store if needed.

In Zurich, 2016

Overall, when traveling to countries where you do not speak the language, bring snacks (e.g. protein bars) that can get you through if you cannot find food that is safe to eat.  Never eat anything that you cannot verify the ingredients and how it was prepared.  And, in case of any errors, make sure you know how to get emergency help if needed. …and most importantly, don’t let your food allergies stop you from experiencing things and traveling everywhere!  With proper preparation, anaphylactic food allergies are manageable.

Forever Vigilant

As a severe food allergy survivor, a sustained level of anxiety maintains my vigilant quest to be out and about while simultaneously avoiding being rushed to an ER due to anaphylaxis.  Recently, however, I was reminded that I can never become even a bit complacent.  It is important to always communicate clearly and advocate for myself, and sometimes that means adapting my tools and methods in order to stay safe while dining away from home.

A recent incident occurred while visiting a friend’s new home in Cleveland, OH.  After a long day spent spray-painting old furniture while enjoying drinks in the garden, we ventured downtown for a steak dinner.  Being huge steak connoisseurs, we chose our restaurant carefully.  Upon arriving, we were seated at a great table and handed menus as we began to salivate for our long awaited choice cuts of beef. 

Our informed server took my food allergy list along with our appetizer order.  She promised to note my allergies and share the list with the kitchen.  I felt safe at this big fancy steakhouse!  Our appetizer of prosciutto wrapped mozzarella arrived and our forks and knives got to work.  Yum! The first bite was delicious!  I lowered my gaze to gather up another morsel and my heart dropped to the pit of my stomach. 

“Is that tomato?” I said to my friend.  “I think it’s tomato!”  Before I finished my last word, I was up and headed for the restroom.  I was not certain I had ingested the severe food allergen but I couldn’t take any chances.  Off I went in the fancy steakhouse to make myself vomit.  My friend grabbed my purse (where she knows my epi-pens are located) and hurried after me.  As I expelled the food, she was frantically trying to refresh her memory on how to use the epi-pen.  She stood outside the bathroom stall continually asking if I was ok – I am certain she was terrified for me and she later offered feedback on the how the auto-injector is not intuitive nor could her panicked mind make quick sense of the multi-step instructions (this is another topic and one I feel we, as a food allergy community, need to better address). 

Luckily, I did not need epinephrine that evening.  Somehow I dodged the hidden tomato and also avoided falling victim to cross-contamination.  Upon returning to the table, we informed the server what had happened and she took the food away while apologizing repeatedly.  The manager came over and offered us a free round of drinks while also assuring us the appetizer would be taken off the bill…somehow the manager did not realize that perhaps this was somehow inadequate for having almost sent a customer to the hospital… When I later contacted the general manager, he agreed and assured us the kitchen staff was reprimanded because all of my allergies were properly noted.  He did not share where the breakdown in communication/training may have occurred.

What restaurant was this? The thing is, it could be any restaurant.  If you are really curious, my Yelp reviews will tell you, but the key point is that not even in a fancy restaurant (that assured me they could handle my allergies) can I let my guard down.  Vigilant. Always. Everywhere.  For those of us with severe food allergies, danger always lurks.

Surviving the Afternoon: Anaphylaxis Attack

             “Lights and sirens the whole way?” came the slow question from my mother as I relayed the tale of my unexpected ambulance ride to the local ER earlier that day.  The brief phone call ended and I sat with my Epipens around me, terrified my reaction would start again.  Even though I was now safe at the home of a family friend outside of D.C., my panic remained despite the exhaustion of the post-epinephrine come down.  The events of that afternoon are not all completely clear to me…but I knew at that moment that I was still breathing despite having had another severe anaphylactic reaction.

                I had ordered a steak salad for lunch.  It was delicious.  There was no way for me to know it was harboring a severe allergen that would soon threaten my life.  The server carefully noted my allergies and I felt safe.  Maybe too safe because I enjoyed my meal and disregarded the first hint of an allergic reaction that occurred after finishing the salad, thinking to myself it couldn’t really be a reaction.    Perhaps it was a walnut or pecan that made its way into my food through contaminated hands or gloves in the kitchen.  There was never a crunch to alert me to the intruder.  The attack was silent and unnoticed. 

                My colleague had to rush back to the office and we hurried through the bill and goodbyes.  I did not tell him that I thought I was having a reaction.  By the time I was at my car (approximately 10 minutes post exposure), the reaction was obvious.  I drove the ½ mile back to the office in denial.  Upon entering the almost empty office, my reaction was increasing in severity.  Following my reaction protocol at the time, I needed to take an antihistamine but quickly realized I had let myself run out. 

               With my illogical anaphylaxis brain in charge, I decided to drive the two blocks to the drug store up the street.  I don’t recall parking my car, but I do recall the moment I realized how severe the reaction had become so quickly.  Sitting alone in my car with no mobile phone, fast action was paramount.  I vaguely recall fumbling in my purse for my Epipen and plunging the needle into my thigh expecting to stop the reaction. 

                “Oh no! Oh my God!” I cried to myself as I quickly realized the reaction was not stopping. The injection didn’t work! I needed to get help.  With the used Epipen discarded on the seat of my car, I searched for the door handle and stumbled out of the car.  Seeing the store’s front door, I knew all I had to do was make it inside and they would call the ambulance. 

                Upon entering the drug store, I remember trying to place my hand on the counter to steady myself.  It didn’t work and I began to fall.  Someone helped me sit on the floor as I got the words out, “I am having an anaphylactic reaction and I need an ambulance.”  I felt my eyes roll back in my head and my body slump and all I could think was I am going to die right here on the floor!!  Suddenly and yet slowly all at the same time, someone shook me.  I saw a white lab coat next to me and an Epipen.  The pharmacist helped me administer the epinephrine – my second dose in a matter of minutes.  I became more alert; it was slowing the reaction.

                Despite the second dose, I was still not safe and when the paramedics walked in the door, they knew it.  I was quickly strapped in and injected with either more epinephrine or perhaps an antihistamine or steroids.  I could hear the ambulance sirens and I was jostled around by each bump in the road.  With so much epinephrine surging through my veins, I became agitated.  I demanded they stop and tell me where we were going.  I was terrified and confused, but they reassured me we were going to the hospital.  I told them we didn’t have to go so fast.  Looking back, I imagine these statements were relieving to the paramedics – I was finally alert.  I don’t know how I survived that day (nor how I avoided injuring anyone else while driving my car), but despite making multiple unsafe choices, I lived through it with nothing more than injection marks in my arm and thigh.

Every allergic reaction I survive comes with its lessons.  Before that day, one Epipen had always been enough and a salad had never attempted to kill me (haha).  It was a day of new concerns.  Even now, I get anxious when eating a salad in a restaurant.  If I have any reservations, I skip ordering it altogether.  Some of those reservations include seeing several salads with nuts in them on the menu or even other non-salad entrees with nuts.  And since that day, I always carry two Epipens when eating outside my home.  I also now have a more aggressive anaphylaxis protocol to follow that includes immediate injection of epinephrine at the first sign of a reaction.  Navigating a danger that is part of my daily life, and actually healthy for most, requires that I always stay vigilant to protect myself from severe food allergies.  

Communication

Relaying any information from one person to another has its challenges, especially amidst our smart-phone distracted world.  When trying to share information regarding severe food allergies, it’s not just scrolling Instagram that gets in the way.  It is the need to assess knowledge level, educate, and describe the specific food allergy needs.  Sometimes it’s complicated and lengthy.  For me, it sometimes feels embarrassing and complicated (which means in addition to the logistics, I have to navigate my emotions around the allergy and the special need it creates).

In an ideal world, there are a few steps I would consistently take in this communication process.  First, determining a person’s base knowledge on food allergies is important.  Without this, I have found I might assume they know more than they do.  Having dealt with food allergies for so long, it is second nature to me what is ok or is not ok regarding food allergens.  To so many people, allergy safety information such as reading all of the ingredients or not garnishing a plate with an allergen is something they may not automatically consider.

Once it is established whether the person who I am speaking to (usually a preparer of food or a relay-er of a food order), it is important to be specific and advocate for myself.  I try to make statements like, “I cannot eat nuts nor anything that might touch a nut.  For example, if someone prepares a salad with walnuts, they must wash their hands or change their gloves before preparing my food.”  This level of specificity is necessary…and gets very lengthy for me with multiple severe allergies plus other foods/proteins I need to avoid (e.g. gluten, cheese).  Anyone who has ever waited tables knows that the last thing you want during dinner hour is a 10-minute conversation at a table.

After relaying specific information, when possible, I re-check whether it is free from allergens.  I find this much easier to do in a restaurant than, for example, at the house of someone who I know only moderately well.  Again, my emotions get in the way and I don’t want to seem needy.  It’s a struggle that you would think I would be good at navigating by now!  Alas, there is still room for improvement.  So, I continue to try to advocate for myself when it comes to my allergies. 

I try to communicate clearly and thoroughly…but sometimes I just hope and keep my EpiPen close.  When I think of this outside of the situation, it is scary.  When I am in the situation, I just want to be as normal as the non-allergy folks.  And while I always say what I am allergic to, simply stating an allergy does not mean the person is equipped to handle it appropriately.  Hence the need for clear and specific communication – clear and specific, yet complicated, communication.  It’s just like navigating around icebergs…thankfully we are not on the Titanic. :-)   

...And the Medications

To carry one of those adorable tiny handbags has never been in the cards for me.  Amongst my lip gloss, mirror, mints, cash and cell phone, a glance inside my purse finds two EpiPens, steroid cream, tissues, Benadryl, and Zyrtec.  Occasional visitors include a Medrol pack, an inhaler, or whatever current allergy/immune focused medication I require. 

My baggage is heavy.  Today, as I write this, it feels especially dense due to the recent addition of the troublesome side effects from my most current dose of steroids.  Dizziness and an overall feeling of floaty/fogginess has been carried around all weekend increasing the challenge factor of repotting plants, catching up on work, and packing for work travel on Monday.  As the evening progresses, I feel better but I cannot reclaim all of the hours lost to that dizzy fog.  I can’t take back missing a friends birthday celebration. 

Luckily, I don’t always have to take steroids; some are not so lucky.  I do have to take multiple double-doses of antihistamines and asthma medication every day.  Twenty-four hours without these medications and my symptoms mimic a severe cold, a mild asthma attack, and often involve lovely red patches and bumps on my skin.  In addition to food allergies, I have (spoken in my most serious doctor voice) “a severe allergic profile” and “definitely something auto-immune going on” and “a dysregulation in key toll-like receptors” and “a confirmed diagnosis of Mast Cell Activation Syndrome.”  As I get older, every one of these issues related to my immune system progresses into being more disruptive and challenging to manage.  The stress of the situation itself is difficult, but the medications…new medications, multiple medications, increased medications, side-effects from medications…

Like Sisyphus toiling away only to watch that boulder roll back to the bottom of the hill, I fill my body with medications only to have my condition worsen or to have a new diagnosis/allergy/symptom appear.  I significantly modify what I eat, seek acupuncture and other “alternative” treatments and I still toil away hoping I will be able to hop out of the way of that boulder the next time it rolls down the hill with me in its cross-hairs. 

Keeping a positive attitude becomes difficult at times like this.  Despite the search sometimes feeling grim, I find so many gifts on which to focus my gratitude.  One of those gifts is that medication.  Life-saving medication.  Able to breathe and go about my day medication.  So thankful for my medication.

Simple.

When trying to eat safe with food allergies, the rule is simple.  Literally, simplicity.  Good fresh foods cooked with fresh ingredients.  Yum!

A recent post on twitter sharing tips for allergen-friendly meals made me realize a lot of folks might not understand the importance of simple meals.  By simple, I don't mean bland nor boring nor unappetizing.  I mean meals that are focused on real food as opposed to preservatives, jars of sauces/spices, frozen dinners, or packed-meals.  

For example, for lunch today I had a delicious meal that had 7 ingredients.  Salmon seasoned with cayenne, garlic, salt, and pepper and a touch of olive oil with asparagus sauted in olive oil and  butter with garlic, salt, and pepper.  

When we start getting into pre-packed foods, or any food where the ingredients list is full of chemical names, controlling for food allergies becomes more difficult.   One reason for this is it becomes more difficult to know what these things are or what might be used to make them (Do you know how they make yellow color #3 or any other mystery ingredient??).  When in doubt, throw it out of your meal.  

Some of these ingredients are not food.  

Thank You, Legal Sea Foods

This is a short post to say "thank you" to one of the first restaurants where I felt a little less like I was rolling the dice with hope to avoid an anaphylactic reaction.  Legal Sea Foods takes food allergies very seriously and it shows by the education of the servers/managers and the special food allergy protocols in their kitchens.  My first dining experience at a Legal Sea Foods restaurant was actually in Washington, D.C and not in the Boston area where the family of restaurants originated.  We went into the restaurant on a whim and at first I was very confused when they began asking additional questions about my allergies and the manager came to speak with me.  This was almost 10 years ago.  Long before any other restaurants were educating their staff or taking any precautions for food allergy sufferers.  

Today, there are more restaurants that are food allergy aware, but most of them seem to be in the Boston area (perhaps due to the food allergy legislation in Massachusetts - see more on my Allergy Information page) or are large chain restaurants with national training and menus.  Another brief shout-out to a chain of pizza restaurants who also take allergies very seriously: Jet's Pizza.  They have just initiated an in-store protocol for preparing their new gluten-free pizzas and have been peanut/nut free for years - I know this because I my family has operated a couple of franchises over the years (so I could go on and on about how amazing the pizza is there, but I am clearly biased).  

When in doubt and traveling, I usually search for a chain restaurant, quickly check to see if they have allergy/gluten-free menus, and eat there.  Maybe it's only luck, but I have never had a reaction at a mid/high-end chain restaurant.  

For all of us with allergies, bring your allergy list, hand it to a server, and be confident the kitchen and the manager will be working to ensure your food is allergy-free at Legal Sea Foods.  From my somewhat frequent restaurant experiences, their staff is some of the most educated when it comes to food allergies and avoiding accidental exposure.  It is one of the easiest places for me to eat and for that bit of convenience in my food-complicated life, I am so thankful!  

Exclusion, No More!

Will I be able to take part in a group meal?  Will my food allergies be an issue?  Will it be too stressful?  Will they think I am too difficult?  Will they regret having me there?  Will I have a severe reaction and ruin everyone’s experience?  Will I feel different and excluded?  Will they have any food I can eat?  Will I feel embarrassed?  Should I even go?

All of these questions have popped into my head when facing social or professional group dining situations.  Like so many other humans, I often just want to fit in and be like everyone else.  When food is involved, however, I can’t be like everyone.  I have to take precautions and there are special considerations involved.  There are many ways I go about protecting myself from anaphylaxis (as well as the feeling of being an outsider at the dinner table).  There are also several ways others can help folks with severe food allergies.  I have listed a few below, but first…

....let me tell you about Bonnie Big Deal and Dotty Downplay.  

After years of personal research on the topic (i.e. frequent dining out with groups of friends and colleagues), I know that during a group meal there is a significant chance I will meet one of two characters: Bonnie Big Deal or Dotty Downplay.  Bonnie Big Deal, upon discovering a food allergy sufferer is in her presence, requests a 20-minute monologue from me followed by a Q&A session on how my allergies are difficult as she peppers in comments of “oh my” and “wow” and “how scary!”  Dotty Downplay, on the other hand, always understands about food allergies and quickly explains how she has a cousin whose lips would swell up when he ate shellfish…and then chuckles at how funny he looked.  Then she follows up with “does your tongue get itchy when you eat nuts, Amanda? Is that why you can’t eat them?”

Bonnie and Dotty are both wonderful people with no intentions of making me feel excluded nor upset.  What Bonnie doesn’t realize is that while I appreciate that she realizes the severity of food allergies, I don’t appreciate having my personal health issue exploited for dinner entertainment (though I would be happy to answer all of her questions in a private conversation).  Dotty also means well and wants to connect with me through her understanding of my food allergies, but her minimizing assumptions make me angry.  It feels like I just told her I broke my leg and she responds with "oh you have a little ouchy."  I have learned how to respond to both Bonnie and Dotty in a constructive and self-saving way – but this was also learned over many years of somewhat painful practice and requires constant fine-tuning.

For those with severe food allergies who eat away from home in groups, a few recommendations:

• If you can, pick the restaurant (ask me if you need tips on ways to select “safe” restaurants)
  • Email or call the restaurant in advance to discuss your allergies and give them a heads-up when you will be there.
• If you can’t pick the restaurant, still email or call the restaurant in advance to see if arrangements need to be made for your allergies.
• If you are going to a friend/colleagues house for a meal:
  • Ask if the meal will include any of your allergens.
  • Inquire about arriving early to help prepare the meal free from your allergens.
  • Offer to bring your own food to eat if the host is unable to accommodate allergies (or if your allergies are especially complicated/severe).
• If it’s a potluck, eat only from what you brought and bring enough to ensure you are satisfied and can still share with others.  I have many ideas of easy foods to bring that are satisfying, easy to transport, etc – just ask!
• If it is a catered meal or a pre-fixe menu, this is where it can get extra complicated.  In these situations, I ask the organizer if they can contact the caterer/restaurant or if they prefer I do.  Then, I explain my allergies and assess if I will just be joining for drinks or if I will bring my own food (e.g. if it is a catered business lunch in my city, I will bring my own lunch).
• Planning, planning, planning!  This is the most important ingredient for food allergy success while dining out in groups.

For those who frequently dine out with people with food allergies, here are a few suggestions:

• Understand that they likely cannot share food with you.  This is most important for restaurants where sharing is the norm, like tapas or sushi. 
• Do not order for them.
  • What do I mean by this?  I mean let them speak to the restaurant/organizer/server etc.
• If you know they have an allergy that they don’t mention, mention it for them (even those of us with severe allergies who know the risks may forget, for example, if we have had a couple of drinks).
• Don’t cross-contaminate their food.
  •  If you are cooking for them, be mindful of allergens in your kitchen (e.g. please use a different cutting board than the one used to chop nuts earlier when cooking for a person with a nut allergy).
• If you are at the table with them, don't eat off their plates, don't drop or splash food onto their plate, don't insist they try your food - overall, be careful and considerate.

Thinking of Kalamazoo, Michigan...

Waking up to find my Facebook and Twitter feed full of the heartbreaking news of the terrifying shootings in Kalamazoo, MI last night has my mind full of Southwest Michigan memories.  I spent five years in Kzoo where I finished my bachelor's degree, had amazing times with friends, and worked for some great local NPOs.  It was 2012 the last time I visited the warm, artsy, and university-filled city to see friends and visit my favorite spots.

My last visit - NYE 2012 Celebration at Ouzos in Kalamazoo

I was lucky to avoid any memorable food allergy mishaps during my years in Kalamazoo.  There were several places where I dined regularly.  Food Dance, Bell's, Crow's Nest, London Grill, Kraftbrau, The Big Burrito, and Bilbo's.  I had great friends there who looked out for me and my allergies, some friends who I met while living there and some who I had known almost my whole life.  

Being that we were all college students or recent graduates, there were also a lot of meals at each other's homes.  During my time in Kalamazoo, I had fewer allergies (as I continue to develop new ones as I get older) and I was not as vigilant as I am now.  When joining a meal at a friend's house, sometimes I wouldn't even mention my allergies, so perhaps it was just luck that kept me away from severe reactions.  

Unfortunately, many folks today are feeling far less than lucky due to losing a friend, neighbor or family member to last night's senseless violence.  The veil of sadness so many of us will wear today reminds all of us to love one another.  Sending all my love to my Kzoo family!  And please remember, it is a community with a beautiful resource, Gryphon Place.  In times of crisis, they can help.

Kalamazoo, MI

Happy Valentine's Day!

On Valentine’s Day, it seems obviously appropriate to discuss presents of candies, cakes and chocolates.  For some, these treats may require departing from a low carb lifestyle, or send them to the gym for some extra cardio the next day.  For those of us with nut allergies or gluten sensitivities (or those out there with dairy, egg or other related allergies), candies, cakes and chocolates often deliver mouthwatering mixed emotions.  Oh how we would love to eat it!! But we know we likely cannot eat the delicious treat sitting inches from our naughty right hand that really wants to pick the sweetness up and provide a vehicle to place it delicately on our wanting taste buds.  It becomes easier over time, but for me and my sweet tooth, the struggle is always real.  And that struggle fails to even mention attempts to protect the emotions of others who have brought a special, carefully picked out treat to a food-allergy sufferer…that will always be difficult to navigate!

From my first blog posting, you may have read about my first food allergy reaction having occurred after consuming a walnut-laced cookie.  This may lead you to think that I quickly learned to stay away from such dangers, but sweets have tripped me up more than once.  To be included at a wedding reception as everyone samples the cake…to be like the other kids at the birthday party…to be liked by the grandparents of my college roommate who made fudge for me… in the past, I too often ate the treat anyway without wanting to make a big deal about asking for the list of ingredients and how carefully the yummy morsels were made.   As my allergies have become more severe after repeated exposures, I now reserve my bad decisions for entirely different areas of my life.

February 12th was my last day working for an amazing biotech company that conjures up medications for horrible neurodegenerative diseases like Multiple Sclerosis and ALS.  In my 2.5 years with this company, I would typically bring my own lunch or I would be provided with a small garden salad separate from the food catered during a lunch meeting.  For my final lunch, beautifully arranged by one of the top executive assistants, every morsel of food was prepared free of my allergens and restrictions.  This included gluten free allergy-friendly cupcakes!! They were delicious cupcakes that all of the guests at the lunch agreed tasted great despite lacking the typical ingredients.  Having the chance to eat along with everyone else (even the dessert!!) brought tears to my eyes because I am someone who really likes to be included!  It was a parting gift that meant more than they could have known.

Another recent heart-warming story of tasty and safe sweets is full of love and sorrow.  My father died a year and a half ago.  It has been difficult, especially when those moments arise that are marked with a tradition of which he was a part.  When he was alive, my mom would always send me a valentine’s day gift from her and my dad.  Since cancer stole him from us, she has continued to send me gifts.  They are the perfect gifts.  Thirty plus years ago, my dad would bring my mom chocolates in one of the heart-shaped sampler boxes from the local store.  She kept these boxes for so many decades and she now sends them to me.  For the past two Valentine’s days, I have received these pretty boxes filled with allergy-friendly chocolates – somehow my mom has figured out how to continue sending me valentine’s presents from both her and my dad.  It is bittersweet and beautiful…and yummy.

Dad and Mom, 2009

Food-Frustrated in Florida

A breathtaking sunset danced across white sand beaches while we enjoyed piña coladas and fresh oysters.  It was November, but this Bostonian was living like it was Summer.  Our first evening in Clearwater Beach was vacation-esque and not at all foretelling of the long work conference beginning in the morning.  That night felt trouble-free and peaceful. 

I did not think I would have any trouble finding meals free of my food allergens at such a nice resort in Florida.  This hope was crushed when the first morning’s breakfast left me wishing I would have brought more allergen-free snacks with me.  After seeing the conference-provided options included only buffet-style pastries and fruit, I decided the hotel restaurant may be a better choice (and yes, I had shared my allergies and restrictions on my conference registration weeks in advance). 

Upon entering the restaurant, I was quickly seated and offered water.  Being in a rush, I had my food allergy list ready and handed it to the server while stating, "I have severe food allergies.  They are listed on this sheet, but I will keep it simple, only fried eggs and bacon – nothing else on the plate, please."  He confirmed the plate would have only fried eggs and bacon and added the extra touch of informing me he would let the kitchen know about my allergies.  I felt very safe.

With my stomach growling, I could see food heading my way!  I was happy it had arrived so quickly…but my heart sank seeing the kitchen had included toast and a garnish of tomato on the plate.  I explained to the expediter that I could not eat it due to my tomato allergy and gluten sensitivity.  The manager stopped over and apologized and stated they were re-making my breakfast.  I was hungry and still wanted to eat breakfast, but my anxiety was slowly rising. 

The new plate was delivered and I ate the bacon and a few bites of the eggs, but the anxiety was already zapping my appetite.  Upon delivery of my check, the server apologized again.  I thanked him, signed my bill, and rushed to the morning sessions.

Lunch was a similar debacle.  Having taken the same approach attempted at breakfast of explaining my allergies, providing my printed allergy list and ordering something simple (hamburger, no bun, side of mustard, nothing else on the plate), I expected my food to come out allergen-free!  It did not.  It arrived with a big juicy slice of tomato on top…clearly, this restaurant was fond of distributing plates contaminated with a deadly poison. 

After several more unfortunate instances (e.g. steak, medium rare, nothing else on the plate...pretty tomato garnish added anyway), in my search for sustenance, I turned to a big bag of Raisinettes procured in the gift shop and sneaking off to a restaurant about a block away that takes food allergies very seriously (Thanks Frenchy’s Café!!).  I also skipped out on dinners with colleagues due to my heightened food anxiety prompted by fear of a trip to the local ER.  It was a long, stressful, and hungry week.  And despite that, I am still so thankful for spending time in such a beautiful place.

Being away from home is never easy for someone with severe food allergies and restrictions.  When I take every step possible to be prepared (alerting hotels in advance, having a printed list of allergies, explaining that I have severe allergies, double-checking my food, and bringing back-up snacks), but I still have trouble getting enough food each day, it makes me angry.  In the end, after the anxiety and anger subside, it just makes me feel sad and like an outsider.  But each time, I pick myself up and refuse to get discouraged.  I keep traveling, eating out, devising new ways to be eat safe away from home, and enjoying my life to the fullest!

Food Allergies: From Ignorance to Freedom

It was 1981 in a small town in Northern Michigan and I was in the kitchen waiting to get a freshly baked chocolate chip cookie.  With a “ding” from the timer, my mouth began to water.  After a brief cooling period and very little patience, I was handed a cookie that I quickly gobbled down.  It was so good!  The delicious cookie made me twist my feet on the smooth linoleum as I grasped my hands to my chest with a big smile on my three year old face. 

 Suddenly, I stopped.  There was something wrong.  My mouth was itchy and my lips felt weird.  I complained to my Mom, but food allergies were unheard of in 1981 and she told me I was crazy.  Little did she know, anaphylaxis had just made its first appearance in my life.

Remembering that day when I was 3 years old, my Mom and I now laugh at her reaction to my symptoms.  The cookie had ground walnuts in it, which was the typical recipe in the Moore house.  Tree nuts continue to be my most severe food allergen, but now we know how to handle it. 

  Growing up in an era when food allergies were not only misunderstood but often ignored, those antibodies kept building as I continued to accidently get exposed again and again.  Tree nuts were on the menu for birthday parties, at every holiday gathering, picnic, sports event, friend’s house, school lunch, and so on.  It was so difficult to avoid because the adults around me didn’t understand anaphylactic reactions and when I said I couldn’t eat something, they often thought I was just being a picky eater.  As I grew through my first 8 or 9 years, my reactions increased in severity and involved itchy mouth, swelling down my digestive track, vomiting, skin rashes, and they were likely life-threatening.  Luckily, I lived through it!

 My reactions worsened as I got older, but I became a better advocate for myself.  I knew to ask about ingredients, and by the time I was in 5th or 6th grade, folks around me were becoming more familiar with food allergies.  People were beginning to understand how severely sick I could become if I accidently ingested a tree nut.  There was also an increased awareness of anaphylaxis and its severity (though this primarily came from bee sting induced anaphylaxis).  I still did not carry an EpiPen, nor had anyone recommended I get one.  It was almost the 90’s and my first visit to the ER due to food allergies was approaching.  This is when I finally knew this was a real thing and not something in my head nor something I could ignore any longer. 

 I was finally coming to terms with the fact that certain foods were poison to me.  This realization came with increased self-consciousness because I was now different and could not participate in so many social celebrations (as the food often did or could contain nuts).  Sometimes, in an effort to avoid feeling different, I just ate the food anyway without enquiring about the ingredients (as long as I didn’t see any nuts).  I was creating a more difficult future for myself, as each exposure better primed my body to have a faster reaction next time.  I now face the reality of going from tree nut exposure to unconscious in about 15 minutes.  It is terrifying, and no, I do not eat anything anymore without knowing the ingredients (and whether any of the ingredients were processed on shared equipment with tree nuts).  My knowledge that I have severe food allergies went from non-existent, to denial, to acceptance, and finally, to allergy freedom.