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Spokin’s Susie Hultquist: A Fearless Food Allergy Mama!

Susie and her food-allergic daughter, Natalie.

Susie and her food-allergic daughter, Natalie.

If you’ve followed Allergy Amulet for a while, you know our team was founded by a female and that we love to support female entrepreneurs!

Unsurprisingly, we’re big fans of Susie Hultquist and the team she’s assembled at Spokin. This Chi-town team has built an app to help make managing food allergies easier! We recently sat down with Susie and asked her a few questions.

1. We understand you left your financial career on Wall Street to start Spokin. When did the “light bulb” moment happen?

It happened when my co-worker was selling girl scout cookies. I wanted to buy some, but in order to do that, I had to get ahold of a package to check the label and ensure they were safe for my family. I then went to their website to make sure the cookies were also available in our area. It took me 15 minutes to track down all the information I needed! That’s when I realized I was probably not the only person managing food allergies searching for this same information, and that there was a clear need to streamline and consolidate food safety information for the food allergy community.

At the time I was managing my company’s consumer internet portfolio and saw how different businesses were managing pain points. No one was solving this one, and I felt I was uniquely positioned to do so.

2. How long did it take to launch the app? 

It was two years in the making. I started by meeting with a lot of people who have food allergies. From there, we developed a content strategy and hired a graphic designer to work on app designs. We just celebrated the app’s first birthday!

3. What is your “why”?

My daughter Natalie. She’s allergic to peanuts and several tree nuts. I am determined to make her life easier and to help her live the fullest life possible. That’s what gets me up every day. 

A food allergy diagnosis often comes with a lot of no’s when it comes to food, and I want to be able to say yes as often as I can!

4. Spokin has a lot of new features and capabilities on the app. What are you most excited about?

Far and away is the map functionality! If you’re in the app and search within the “eateries” category you can choose any city in the US and see in seconds all the restaurants, bakeries, and ice cream shops others in the Spokin community have recommended. We now have 2.7 million reviews on the app and reviews span across 18 countries! 

To find in seconds all these yes’s after so many no’s is amazing. And it’s built by the food allergy community! This community is so generous. 

5. What does Spokin mean?

It’s a play on the word spoken. I had so many amazing interactions with people in the food allergy community that gave me advice verbally (where to eat in London, what chocolate chips to bake with, what to take with us on an airplane, etc.) but once spoken, that advice then vanished into thin air. All of this knowledge needed to be captured and shared with everyone. The idea was that if we built this platform, we could harness and share all of this great food wisdom with the food allergy community at large. 

6. When do you plan to release the Android version of the app?

We have started an Android waiting list and it’s on our product roadmap. We’re currently assessing demand, so please add your email to the Android list on our website, if interested! 

7. When you’re not focused on helping the food allergy community, what do you enjoy doing?

Spending time with my girls and my husband! We love to cook together, run together, and travel when we can. My girls all have very different interests so it’s fun to watch them pursue their passions. 

8. Since Spokin is based in Chicago, we have to know: do you cheer for the White Sox or the Cubs?

I love the Cubs, but I applaud the White Sox for offering peanut-free ballgames!

9. What’s your long-term vision for Spokin?

If everyone in the US with food allergies shared five recommendations we could build a database of 75 million data points that everyone can access! We’ve estimated that if it takes you 15 minutes a day to manage food allergies, then you can save a year of your life by having all of this information accessible to you. 

If you haven’t downloaded the Spokin app we recommend you check it out ASAP! Both Susie (Susie in the Spokin app) and Allergy Amulet’s founder, Abi Barnes, (allergy_amulet_abi in the Spokin app) have provided lots of recommendations!

-      Meg and the Allergy Amulet Team

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Food Allergy Awareness Week! Things I’d Like People to Know… And a Little Dr. Seuss

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It’s almost here, food allergy awareness week 2018! The official dates for this year are May 13-19.

I’m currently sitting in my office looking at a recent picture of my daughter and me at our state capitol with the governor to advocate for food allergy awareness. If you’ve followed Allergy Amulet for a while, you know I’m a passionate food allergy mom!

One of the greatest things about food allergy awareness week is that it’s a conversation starter. I LOVE that statistics are being shared left and right to paint the picture of how many people are affected! Heck, even buildings around the country are “turning teal” in recognition!

However, it’s important that the conversation not just be about how MANY people are affected, but HOW they are affected. So in the spirit of awareness and conversation, I wanted to share 10 things I’d like other parents to understand about food allergies!

1.    Food allergies are not a choice. We don’t know why our family has food allergies, and we have to manage them diligently every day. Please don’t feel sorry for us, help advocate for us!

2.    Food allergies can be life threatening and they’re a serious health issue, not simply an inconvenience—trace amounts of a food allergy protein can be deadly.

3.   Food allergies require planning. We can’t often join spur-of-the-moment outings, so please make sure to give us a heads up so we can plan ahead!

4.    If we ask questions about your food multiple times, it’s not because we don’t trust you, it’s because there’s no room for error. It’s not personal, it’s precautionary.

5.   Food allergies can be draining—mentally, emotionally, and financially. We can’t let our guard down and our vigilance level is always in “on” mode. We want to experience the same events and activities as everyone else, but it’s not always easy.

6.   We’re not germ freaks if we ask you to wash your hands after eating, or if you see us wiping down an airplane seat with disinfectant wipes. It’s simply that we are trying to keep the risk of allergen exposure to a minimum.

7.    Activities don’t have to involve food to be fun! If you know that someone with food allergies will be joining an activity or celebration that you’re organizing, try to be mindful of the foods they avoid (and give them a heads up if their allergen will be present so they can plan accordingly)!  

8.    Always feel free to ask questions. We will never get annoyed if you ask us a million questions about our allergies. Education is the first step to understanding!

9.   We’re just parents doing what we have to do to keep our kids safe. Please realize we’re not trying to inconvenience you, and that we’d do the same for your child!

10.  It helps to have a village of support so you don’t feel like you’re isolated on an island—if you are part of someone’s village, THANK YOU. It’s not an easy task!

Lastly, I leave you with some brilliant words from Dr. Seuss’s Horton Hears a Who. It seems appropriate for food allergy awareness week. ☺️

Don’t give up! I believe in you all!

A person’s a person, no matter how small!

And you very small persons will not have to die

If you make yourselves heard! So come on, now, and TRY!

 

The Mayor grabbed a tom-tom. He started to smack it.

And, all over Who-ville, they whooped up a racket.

They rattled tin kettles! They beat on brass pans,

On garbage pail tops and old cranberry cans!

They blew on bazookas and blasted great toots

On clarinets, oom-pahs and boom-pahs and flutes!

Great gusts of loud racket rang high through the air.

They rattled and shook the whole sky!

 

When they got to the top,

The lad cleared his throat and he shouted out, “Yopp!”

And that Yopp...

That one small, extra Yopp put it over!

Finally, at last! From that speck on that clover

Their voices were heard! They rang out clear and clean.

 

And the elephant smiled. “Do you see what I mean?”...

They’ve proved they ARE persons, no matter how small.

And their whole world was saved by the Smallest of ALL!

 

- Meg and the Allergy Amulet Team 

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Do Waitstaff Create a False Sense of Security?

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I’m often asked whether a consumer device that tests for unwanted ingredients in foods will give those with food allergies a false sense of security when dining out. My response is usually the same: do waitstaff give the food allergic a false sense of security when assuring customers their food is safe?

From personal experience as a waitress, and as someone with food allergies, I can assure you, it happens.

Roughly a decade ago, I waitressed at a restaurant in Midtown Manhattan. It was a fast-paced work environment that demanded recall of dozens of orders and seating positions at any given time. The restaurant was located a few blocks north of Madison Square Garden, so we’d routinely get flooded with hungry patrons before and after performances. During my tenure waiting tables, I grew accustomed to the frequency with which waitstaff made mistakes—and it’s often. A few times a week I would mix up orders, fail to put in special requests, and was once lambasted for accidentally serving a woman regular coke instead of diet. I never made that mistake again.

But there’s a difference between mixing up soft drink orders and forgetting to inform the kitchen of a food allergy. Despite their best efforts and intentions, waitstaff don’t always get it right—even when it comes to food allergies. Many waiters don’t know that pesto usually contains pine nuts, that marzipan is almond paste, or that peanuts and nutmeg are not tree nuts. According to a recent CDC report, restaurants were found responsible for nearly half of all food allergy fatalities over a thirteen-year period. That same report found that less than half of all restaurant managers, and only one third of servers, receive any formal training on food allergies. Legislation is also lagging. Today, only six states (Illinois, Massachusetts, Maryland, Michigan, Rhode Island, and Virginia) and two cities (NYC and St. Paul, MN) have passed laws to increase food allergy safety and awareness in restaurants. We’ve clearly got a long way to go.

I’ve also had my fair share of personal experiences with misinformed waitstaff. This past year alone, waitresses at two different restaurants assured me that my dish was allergen-free when, in fact, it was not. One of the more memorable incidents occurred when I was ten. Our family went to a fancy restaurant near our home for my mom’s 40th birthday. I typically wasn’t allowed desserts at restaurants, but my parents decided to make an exception. We informed the waitress of my food allergies, who then confirmed with the chef that the dessert was safe. After sheepishly taking a small bite, the waitress came barreling out of the kitchen towards the table: there was marzipan in the icing (they hadn’t checked with the pastry chef until after it was delivered to our table). Fortunately, I spit the cake out and the reaction did not rise to the level of anaphylaxis.

Dining out has and will always present challenges for the food allergic, and living in a bubble isn’t a realistic option: I don’t know one adult with food allergies that doesn’t dine out at restaurants or eat foods prepared by others. Right now, the food allergy community relies on the word of the kitchen and waitstaff—the first and only line of defense to prevent a reaction; then there’s epinephrine if things go wrong. Little progress has been made in the way of management tools for preventing allergic reactions in past decades, but fortunately, that’s starting to change. We’re finally seeing a surge of start-up activity in the food allergy space, with different products and apps designed to help the food allergic population better manage their allergies. After all, dining out shouldn’t feel like a game of Russian roulette!

Consumer devices that test foods for unwanted ingredients are intended as a supplement, not a substitute, to the standard precautionary measures those with food allergies would otherwise take when dining out or eating foods prepared by others. For example, I’m still going to tell the waitstaff I have food allergies; I’m still going to take a small bite before diving into my dish; I’m still going to avoid Thai restaurants, desserts, and pesto; and I’ll continue to have my epinephrine on hand. But an additional layer of assurance would be a vast improvement on the status quo.

Having been on both sides of the table, I know this much is true: waitstaff make mistakes, and it only takes one to trigger anaphylaxis. We food allergic folks need all the tools and reassurances we can get.

- Abi and the Allergy Amulet Team

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Understanding More, Fearing Less

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“Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.”    – Marie Curie

Who better to listen to on the topic of fear than the first female scientist to win a Nobel Prize (twice!)? Curie had to overcome quite a few fears in the male-dominated science profession before winning those awards. She was also the daughter of a proud papa named Wladyslaw, a math and physics teacher (her mother died when she was ten), which is a nice segue to another proud papa: me. My name is David. I’m a 43-year-old corporate attorney, private equity and venture capital investor, and the father of three wonderful daughters. My daughter Caroline is not a scientist (yet), but like Curie, she confronts fear and hostile environments every day. She is severely allergic to peanuts and most tree nuts.  

As any parent of a child with a food allergy will attest, food outings are an exercise in fear. Even though my wife and I have no allergies, we experience this fear vicariously through Caroline daily. I can see the fear in Caroline’s eyes nearly every time we dine out. For a ten-year-old girl, this fear can be debilitating, frustrating, confusing, and embarrassing all at once. Caroline counts on us to always protect her, making us promise that she won’t get “hurt” when she eats out with our family. Caroline is good at math. Even at ten, she knows that getting it wrong even 0.1% of the time can be deadly. It is our very own David and Goliath story: my fragile young daughter against the fear of uncertainty. 

On a recent trip to our local ice cream parlor, we loudly (in keeping with custom) informed the teenage server of Caroline's peanut and tree nut allergies as we placed the orders for our three young daughters. The staff proceeded to assure us every precaution and make her ice cream cone in a separate, allergy-free area. These precautions always make me feel better, but the fear is constant, like white noise in the background.

First to receive her double-scoop cone was our eldest daughter, Ashley. Within seconds of handing her the cone I was startled to attention, "Dad, this tastes like peanut butter!" We didn't order a peanut butter cone for Ashley. Ashley has no food allergies, however, we never allow our other children to eat peanuts or tree nuts around Caroline. Family rule! I took a bite and sure enough, a strong flavor of peanut butter filled my mouth. Disappointed, we immediately informed one of the servers, who shrugged it off as if we had just informed her that she had forgotten to add green and red gummy bears to the cone. "Whoops, I guess we put the wrong thing in the order, sorry." I was stunned, but frankly, over the years I’ve grown accustomed to non-allergic parents, teachers, and servers acting like food allergies just aren’t a big deal. What if that server had accidentally given Caroline that cone? I clutched my daughter’s EpiPen case and shuddered to think what would have happened if she had been the one on the receiving end of that double-scoop chocolate cone. Uncertainty and fear gripped my insides. 

What’s a father to do? 

First, I make a point of frequenting stores and brands that promise nut-free facilities. The only “nut-free” bakery around is the next town over, but I think it’s worth the trip. I also support nut-free brands to ensure they stick around.

Second, I have spent the last five years of Caroline’s life trying to teach her to look out for herself. It’s a lesson I hope she will take with her when she is a teenager dining out with friends, and ultimately when she leaves our house and has to fend for herself. For my wife (Julie) and me, questions and doubts continually spin through our minds: Will she remember to carry her EpiPen at college? Will she know to diligently check food labels when we’re not around? Will she ever be too embarrassed to speak up about her food allergies when out with friends? To combat these concerns, we always try to make sure we’re helping her build the skills she needs to manage her food allergies solo.

One recent evening, while dining out at a local farm-to-table restaurant, I discovered half of a walnut in my nut-free pasta. While once again surprised and scared, it was a stark reminder of how easily cross-contact occurs. Enter Allergy Amulet, an early-stage technology company trying to create greater food transparency and help individuals with food allergies feel safer about the foods they eat. I believe that technology holds the key to helping her defeat her Goliath. That’s why Julie and I are proud investors in the company. 

Perhaps one day in the near future, my little wonder woman will not be brandishing a primitive sling-shot to slay the giant, but rather, an Amulet. Perhaps science will help her overcome her fears, and help her understand more, and fear less.

David would like to thank his wife Julie for her careful edits and contributions to this piece.  

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How to Save a Life

Abi and Sakura at Middlebury College in 2007.

Abi and Sakura at Middlebury College in 2007.

Have you ever stabbed anyone? I have.

I stabbed my friend and Allergy Amulet Co-Founder Abi Barnes with an EpiPen in the summer of 2007.  

Abi and I spent that summer at Middlebury College, where I had just wrapped up my sophomore year. Alongside roughly 100 others, we immersed ourselves in an intensive Mandarin language program, pledging not to speak English for the program’s nine-week duration. Abi’s dorm was across the hall from mine, and we soon became good friends. We watched movies, went on runs, gossiped and joked, but always in this foreign tongue that consumed every part of our daily lives. We couldn’t even read in English, forcing several of us to secretly pass around an English version of the last Harry Potter book, which had just been released—no one wanted to attempt reading that in Chinese.

One particular summer day, we finished up our morning classes and walked over to the dining hall. We were now several weeks into the program, so I was used to seeing Abi meticulously look for nuts on the ingredients list of every item on the self-service buffet menu. She and I chatted away while she seemingly nonchalantly searched for ingredients that could kill her.

Among the various menu items was a grilled, flaky white fish with a brown sauce that we both opted for that day. Shortly after we sat down and started eating, Abi suddenly froze. “Oh my god,” she said; I was alarmed. Not because she turned pale, or had a look of panic in her eyes, but because she spoke English within earshot of other students and teachers.

《什么?》What?” I said.

“Oh my god.”

Worried about Abi getting in trouble I asked,《你为什么说英文?》“Why are you speaking in English?”

“No seriously, I can feel it. It was the fish sauce. I didn’t check it. I know it. I can feel it. I need my EpiPen,” she said in a panicked manner.

《在哪里?》Where?

“We have to go. It’s in my room.”

Abi grabbed my hand and we ran across campus to our dorm. Once in her room, she tossed me the EpiPen in its original cardboard packaging and said, “Read the instructions.” I learned later that it’s always better to let someone else administer the epinephrine­ needle. I also learned that it’s good to have someone with you—which makes sense, considering that someone having an allergic reaction could pass out.

At this point, we were speaking only in English. I remember my hands shaking while I held the instructions and found myself reading them over and over again. Meanwhile, Abi was popping Benadryl tablets like pink Tic Tacs. She extended her paper-white thigh to me and said, “You’ll need to do it with full force.”

So I took a generous upward swing and stabbed her. Bright red blood trickled down her upper thigh. We then rushed to the hospital.

Many hours later, when the hospital determined she was safe to leave, our friend drove over to pick us up. We got into the car and The Fray’s “How to Save a Life” came on the radio. We laughed and heaved a collective sigh of relief.  

It wasn’t until days later when we went swimming in a nearby lake that I realized the force of stabbing her had left a black and blue bruise bigger than my hand on her thigh. I knew that food allergies were dangerous, but this incident with the fish sauce was a terrifying reminder of that fact. I remember Abi was completely wiped out after the ordeal, and to think that she has to constantly look out for dangers lurking in foods must be exhausting.

Fast forward a decade and I’m currently the Chief Operating Officer of a family-owned Japanese restaurant group in New York City. At each of our 15 locations, our staff is trained to manage food allergies. I’d like to think that we’ve educated our staff about food allergies since opening our first location in 1984, but the reality is that dining out is always a potential minefield for individuals like Abi. It makes sense that she came up with the idea for Allergy Amulet.

Stabbing Abi in the summer of 2007 will forever stay with me as a reminder of the importance of food allergy awareness and education. I also hope that incident will remain my first and last stabbing.

 

Abi’s longtime friend, Sakura Yagi, wrote this post. For additional information on the proper use of epinephrine, please read here

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Smoothie Bars & Ice Cream Parlors: A Potential Allergy Nightmare

Standing in line at Trader Joe’s last week, I noticed a sign alerting shoppers of a recent recall of their Matcha Green Tea Ice Cream due to “the potential presence of small metal pieces in the product.” If you’re thinking, “That’s nuts!” You’re right—although in my case, either would probably be just as harmful (I’m fatally allergic to nuts). 

The idea that some small dangerous object could be hiding in your food is not a far-flung concept for the food-allergic. If you’ve never lived with a food allergy, or cared for someone with a food allergy, it’s hard to appreciate the dangers that lurk behind seemingly innocent foods. And they often hide in the most unsuspecting places. Two such places are ice cream parlors and smoothie bars—or what UCLA pediatric allergist Dr. Maria Garcia-Lloret refers to as “allergy minefields.”

If you’ve ever been to an ice cream parlor with a food allergy, you know that the only thing separating a scoop of almond praline swirl and plain vanilla is typically a bucket of water—and for someone with a severe food allergy, that’s not going to cut it. Trace amounts of a food allergen, as low as parts-per-million levels, can be fatal for those with a severe food allergy.

These days, many popular smoothie bars offer “protein boost” health supplements, which often include tree nut and peanut powders (or other popular plant-based powders like chia seed, brown rice, hemp seed, green pea, sunflower seed, or pumpkin). These powders can have incredibly high allergen concentrations, which is to say, the slightest trace of one of these powders can trigger a severe reaction.

Dr. Garcia-Lloret, a professor of pediatric allergy at the Mattel Children's Hospital at UCLA and a pioneer in the food allergy community, has been treating food-allergic patients for nearly 20 years. Needless to say, she’s seen countless allergic reactions and anaphylactic episodes over the years. When we spoke, she offered a cautionary tale when it came to these cold summer treats. "Based on my experience, those with food allergies should be wary of ice cream parlors and smoothie bars, as they don't usually think of these types of establishments as hazardous, and they lower their guard." She also mentioned that teenagers are particularly vulnerable in these settings, noting how carefree summer outings with friends too often lead to the emergency room. 

That said, if you have a food allergy but still need your cold smoothie or ice cream fix (like me!), the most important thing you can do is know all of the ingredients present at the facility, and make sure you’re comfortable with the measures the facility takes to prevent cross-contact. Additionally, here are a few other tips:

1.     Ask the smoothie bar to use a freshly washed blender. Double-check their sanitizing process to ensure the blender has been thoroughly cleaned and there is no lingering allergen residue.

2.     Make sure the ice cream scoop has been thoroughly washed since its last use.

3.     If the person behind the counter wears gloves, ask them if they’d kindly change their gloves (or wash their hands if they’re not wearing gloves, as appropriate). Many of these establishments offer other foods as well, so this is a good way to ensure you’re avoiding cross-contact.

On the upside, many ice cream parlors and smoothie bars are becoming increasingly allergy-conscious, and are implementing more stringent protocols to accommodate those with severe food allergies. Let’s be honest, what kid (or adult) doesn’t want to participate in this classic summer pastime? If you’re now wondering, Where do I find hidden these allergy-friendly gems?! Spokin recently compiled this short list of some the nation’s most allergy-friendly ice cream parlors! Or, if you’d prefer to purchase a pint instead, check out this list of top allergy-friendly ice creams!

Wishing you all a SWEET summer!

- Abi and the Allergy Amulet Team

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Food Allergies Today: An Expert Q & A

There are many unknowns in the food allergy world today. Why are food allergies on the rise? What can I do to prevent my child from developing a food allergy? How do I find out if I have a food allergy or intolerance, or if my child has one? With the help of two of our medical advisors, Dr. Jordan Scott and Dr. John Lee, we have answered some of these common food allergy questions to help you dine with confidence! Let’s get started.

1) What is a food allergy and how does it differ from a food intolerance?

A food allergy is an immune system reaction. Your immune system is comprised of five different types of immunoglobulins/antibodies (IgA, IgD, IgE, IgG, and IgM). If you have a food allergy, IgE is the responsive antibody. When exposed to a food allergen, IgE attaches to the allergen, mistaking it as a foreign intruder. This IgE-allergen compound then binds to immune cells, triggering a release of histamine and other chemicals that produce an allergic reaction. Symptoms can affect the central nervous, respiratory, and gastrointestinal systems, and produce epidermal symptoms such as hives, rashes, or eczema. In the most extreme cases, a food-allergic reaction produces anaphylaxis, a life-threatening response that requires immediate medical treatment.

Food intolerances often affect gastrointestinal function, but they can also impact the central nervous system, respiratory health, and skin. The main difference between a food allergy and intolerance is that, although intolerance symptoms can be severe, they are not life threatening and will not produce anaphylaxis.

2) What are the leading theories for the significant increase in food allergies? 

Between 1997 and 2011, food allergies among children increased approximately 50 percent, according to the CDC. Unfortunately, there is no clear answer as to why. Below are some of the leading theories, in no particular order.

Theory One: Changes in our food system

Over the past few decades, our agricultural system has undergone a considerable transformation, including the introduction of GMOs (genetically modified organisms), increased pesticide application, and the addition of numerous chemicals to our foods. This theory suggests that these chemicals and modified foods are affecting our bodies and immune systems, particularly our gut health, thereby increasing our susceptibility to food allergies and intolerances.

Theory Two: Hygiene hypothesis

The second theory is the “hygiene hypothesis,” suggesting that our modern world is too clean, and our reduced exposure to bacteria is weakening our immune systems. Some research also suggests that the overuse of antibiotics in animals and the rise of prescription medication is killing the good bacteria in our gut alongside the bad.

Theory Three: Epigenetics

Some research indicates epigenetics are responsible for the rapid increase in food allergies—heritable changes in gene expression that don’t change the underlying DNA sequence. Epigenetic changes can be the product of environmental or other external factors, like diet or smoking, or the result of natural occurrence. Research is continuing to uncover the role of epigenetics in a variety of human disorders and fatal diseases.

Theory Four: Delayed allergen exposure

In the past few years, a growing body of research is suggesting that we may not be introducing children early enough to common allergens. In February 2015, the LEAP Study results came out, debunking the previously accepted practice of discouraging exposure to peanut among high-risk infants. This misguided approach may have contributed to the rise of peanut allergies and other food allergies.

3) What are the current methods for diagnosing a food allergy? How have they changed in the past several years? 

To diagnose a food allergy, an allergist performs one of two tests (or both): a blood test (such as an ImmunoCAP test) and/or a skin prick test. The blood test measures the level of allergen-specific IgE antibodies present in the blood. Skin prick tests are exactly as they sound: the allergists pricks the patient’s arm or back with a sterile small probe containing a tiny amount of the food allergen. A food allergy diagnosis is confirmed if a wheal (a raised white bump surrounded by a small circle of red irritated skin) develops around the contact area.

In some cases, an allergist may suggest a food elimination diet to pinpoint the offending food. They may also recommend an oral food challenge.

In an oral food challenge, an allergist administers tiny amounts of the potential allergen in gradually increasing doses over a set period of time (usually 1-3 hours). The patient is closely monitored in the event the food produces an allergic reaction, and epinephrine is always on hand in case of a reaction.

To date, oral food challenges are considered the gold standard for food allergy diagnosis. Skin prick and blood tests aid in diagnosis, but they are prone to error—false positives are not uncommon. For this reason, many allergists avoid blanket food allergy screening, and carefully choose which foods to test. Skin prick tests and blood tests have been standard practice for aiding in allergy diagnosis for the past two decades.

4) What are some common allergic reaction symptoms?

It’s first important to note that no two allergic reactions are the same, and just because you have a mild reaction to a small bit of sesame one day, doesn’t mean symptoms will present in the same way the next time you ingest that same small amount. Below are the most common symptoms to an allergic reaction.  

Mild symptoms include: itchy or runny nose, sneezing, itchy mouth, a few hives or mild itch, and mild nausea or discomfort.

Severe symptoms include: shortness of breath, wheezing, repetitive cough, pale or bluish skin, faintness, weak pulse, dizziness, tight or hoarse throat, trouble breathing or swallowing, significant swelling of the tongue or lips, hives or widespread redness, repetitive vomiting or severe diarrhea, anxiety or confusion, or some combination thereof.

It’s important that food-allergic individuals also be aware of biphasic anaphylaxis. A biphasic allergic reaction is a second episode of anaphylaxes that typically occurs within the first several hours after the initial anaphylactic event. The symptoms of biphasic anaphylaxis can be more severe than the initial reaction. Due to the risk of biphasic anaphylaxis, a doctor may require that you remain in the hospital for several hours after an anaphylactic event for monitoring.

5) What are the most common misconceptions about food allergies? 

There are several misconceptions about food allergies. Below are a few that we hear most frequently:

Food allergies aren’t real—False. Food allergies are real. They are a response to the body’s immune system upon exposure to an allergen. The immune system misinterprets the food as a harmful invader and releases histamine and other chemicals to protect the body from perceived harm.

Food allergies aren’t life threatening—False. If an allergic reaction becomes severe, it can lead to anaphylaxis—a potentially fatal allergic reaction that involves the rapid onset of swelling which can obstruct air passageways. Symptoms of an allergic reaction may be isolated to one major system in the body (e.g., wheezing or difficulty breathing), or can involve multiple systems (e.g., lungs, heart, throat, mouth, skin, or gut), and typically present within minutes after a person ingests the offending food.

Each allergic reaction becomes increasingly worse—Not necessarily. Allergic reactions can be unpredictable. The severity of a reaction is based on a number of factors, including: the amount of the allergenic food ingested, the person’s degree of sensitivity to that food, if exercise is involved, if they are sick, if alcohol is present in their body, and if certain medications are being used (for example, NSAIDS may increase the severity of a reaction). A person with food allergies might not always experience the same symptoms each time.

A food can be made less allergenic by cooking it—Partially true. Because a food allergy is an immune system response to a protein in a food, the protein remains in the food during heating, so it cannot be cooked out. The exception to this rule is sometimes seen in highly processed foods, and with milk and egg allergies—some people are able to consume these foods after heating, such as baked goods. Ask your allergist before trying this at home.

Adults don’t develop food allergies—False. Though most food allergies start in childhood, they can develop at any age.

Peanuts are the only food that cause severe reactions—False. While peanuts are the leading trigger of food-related anaphylaxis, any food can elicit a severe reaction—other common foods include seafood, milk, wheat, eggs, and sesame seeds.

One small bite is ok—If someone has a severe food allergy, and is highly sensitive to small amounts, even a tiny bite can trigger anaphylaxis. It is well documented that allergic individuals can experience severe reactions to trace amounts of an allergen in their food.

6) What are the three most important things a food-allergic individual can communicate to their friends, family, and co-workers?

First, alert your “tribe” (friends, family, work colleagues, caregivers) of your food allergies and their accompanying health risk. Also note the various ways you can be exposed (e.g., ingestion, touch, and inhalation).

Second, let them know what symptoms to watch for in case of a reaction.

Finally, tell them where you keep your emergency medications and teach them how to use an epinephrine auto-injector. Share your doctor-provided food allergy action plan, if you have one. Often parents with food-allergic children have one to serve as a guide for caregivers. The American Academy of Pediatrics recently published a customizable Allergy and Anaphylaxis Emergency Plan.

7) What role do you see technology playing in the lives of individuals with food allergies and how they manage them now, and in future? 

Food allergies have increased at an alarming rate over the past two decades. The silver lining is that we’re putting more research dollars and efforts into allergy education, management, and prevention. Numerous start-ups are spearheading this effort with cutting-edge technologies and innovation. This Spokin article published in January highlights several. Until we find a cure, technology is going to become a necessary part of how we manage food allergies.

8) What will be important for future food allergy diagnoses and treatment?

With food allergy diagnoses at an all-time high, it will become increasingly important to have improved diagnostic tools available to better understand who is at risk for severe reactions. New therapies to help people better manage their allergies are being developed every day. One example is oral immunotherapy, or OIT. OIT is a method of food desensitization that involves re-introducing the immune system to the allergenic food via oral ingestion in gradually increasing amounts over time, with the goal of eventual tolerance. Another example is the Viaskin® patch, otherwise known as the peanut patch. This approach uses epicutaneous immunotherapy. After applying the patch to your skin, the allergen is concentrated in the top layers of the skin, where it activates the immune system by targeting antigen-presenting cells without passage of the antigen into the bloodstream. The peanut patch recently entered Phase III clinical trials. Products are also currently being developed for milk and egg.

Is desensitization the future of food allergies? Or is a cure on the horizon? Only time will tell. Until then, innovation, research, heightened awareness, and education are paving the way for a brighter food allergy future.

If you have additional questions you’d like our experts to answer, please send them to Meg at mnohe@allergyamulet.com. We’d love to hear from you!

- The Allergy Amulet Team

 

These questions, and their corresponding responses, were written by the Allergy Amulet team and reviewed by Allergy Amulet advisors, Dr. Jordan Scott and Dr. John Lee.

Dr. Scott is an allergist/immunologist and operates several private allergy clinics throughout the Boston area. He is on the board of overseers at Boston Children’s Hospital, and the past president of the Massachusetts Allergy and Asthma Society. Dr. Scott is an allergy/immunology instructor at the University of Massachusetts.

Dr. Lee is the clinical director of the food allergy program at Boston Children’s Hospital. Dr. Lee is widely recognized for his work in food allergy, and his commitment to patient health.

 

 

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Dear Mother, Dear Daughter

In the spirit of Mother’s Day, two of our food allergy mavens at Allergy Amulet wrote letters to their mom and daughter, respectively, about their food allergy journeys together. Abi Barnes, Allergy Amulet’s CEO and Co-Founder, has lived with food allergies her entire life. Meg Nohe, Allergy Amulet’s Director of Strategic Development, has a daughter with food allergies. We hope you enjoy.

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Dear Mom,

I sometimes look back at my childhood and think, This is why I have a dog. By Darwin’s logic, I should never have made it.

You raised the textbook definition of “bubble girl”: severe asthma, eczema, and the only kid I remember growing up with food allergies. And you did it all before food allergy labeling laws existed, at a time when most folks had never encountered a food-allergic child, and when food allergy organizations and advocacy groups were nonexistent. Pizza joints didn’t know what to make of a child who was allergic to tomato sauce. I like to think you’re the reason “white pizza” is now a thing. Dad and Grandma were particularly dumbfounded: How is the daughter of a long line of Mainers allergic to lobster?

I remember sitting in Nurse Losey’s office in elementary school during recess, hooked up to my nebulizer, watching classmates walk into the infirmary with bruises and scrapes on their knees seeking antiseptic and a bandage. They would glance over at me in wonder, as I breathed in clouds of white smoke from a long tube connected to a noisy white box. Nurse Losey, with her kind eyes and motherly demeanor, would smile at me and carefully close the infirmary curtains around me, shielding me from stares.

Needless to say, there were days when I felt different.

But you worked hard to create a cocoon of normalcy around me. On friends' birthdays and school events, you’d arrive with white pizza and plain vanilla cupcakes so that I didn’t feel left out. You’d adeptly deflect attention away from my special accommodations. Most kids probably didn’t even know that I was always a heartbeat away from the hospital. I also don’t remember ever being teased or taunted as a kid for my food allergies or asthma, although I’m sure it happened from time to time. You also encouraged me to talk openly about my food allergies and asthma—it was nothing to be embarrassed about, you’d say.

You were my life raft as a child. You and your fanny pack full of antihistamines, epinephrine, and inhalers. I can only imagine the stress and fear that accompanied my fragile condition. The terror that must have filled your bones when I would say those four words: “My mouth feels itchy.”

You’re a rare breed, Mom. Always have been. Anyone who knows you would say the same. You’re uncannily selfless and kind; a wellspring of creativity and optimism. And you’re fiercely genuine—a quality I constantly strive to emulate. To say that I am fortunate to have you as a mother would be an understatement. I wouldn’t have made it this far without you.   

Once a life raft, now an anchor. Thank you for first keeping me afloat, and now ever grounded. With love. Happy Mother’s Day.

Abi

P.S. Dad, I know you helped out too, but it’s not your day… ;)

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My sweet E,

I’ve often been told that a mother should always trust her instincts—that motherly intuition goes beyond scientific explanation.

A few months after you were born, I remember having this gut feeling that something was not quite right when it came to food—you had countless stomach issues, unexplained discomfort, and trouble with weight gain. We tried removing dairy and soy from your diet, administering medication for your reflux, and nothing worked. At one year old, we found out that you were allergic to peanuts and tree nuts.

And it all made sense.

I went through a flood of different emotions after your diagnosis: first fear for your safety and social adjustment as you grew older, and then anxiety over what I didn’t yet understand about managing food allergies. There was also guilt. Guilt that I spent a year not knowing about your allergies. Was it something I caused when you were in utero? Could we have prevented this? Did I fail you by not identifying the symptoms?

At the time, no one in our family had food allergies. After blaming myself for a few months, I accepted the fact that I didn’t know what I didn’t know, and decided to put my energy and efforts into ­­­­­­­­­being your advocate and cheerleader. At nights when you went to bed I researched food allergies and watched educational seminars. I trained our “tribe” to ensure you would always be safe when I wasn’t around. I quit my job in medical device branding to throw all my time and efforts into figuring out my “place” in the world of food allergy advocacy and education. Was part of this guilt-driven? A little. But mostly, I realized that there are SO MANY children like you deeply affected by food allergies, and I wanted to do anything I could to help your voices be heard.

Fast forward to 2017—we’ve been a food allergy family for a few years and you’re THRIVING! You still have nut allergies, but you’ve outgrown a couple of them, and we’ve completed oral immunotherapy for several others. You’ve learned to advocate some for yourself, and talk openly about your allergies without fear or embarrassment. And I’m SO PROUD!

I’m also thankful that we’re walking this journey together in 2017 versus decades previous. FDA food allergen labeling has come so far; and thanks to living in the digital era, we’ve been able to join a support network that we might not have had otherwise. Then there’s technology (like the Allergy Amulet), immunotherapies to help manage food allergies, and lots of food allergy innovation going on today. And I’m grateful.

Who knows, ten years from now maybe you’ll be desensitized to all of your food allergies, or maybe you’ll have outgrown them! It’s hard to even imagine that this phase of life may become a distant memory.

While this path is not one I would have chosen for you, I’m so blessed to walk it alongside you. And that’s where I’ll be. Love you always.

Mom

 

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OIT—Is It For Me?

Feeding your peanut-allergic child peanuts is not easy as a mother—I would know, I do it every day. Your instincts as a parent are to keep your child as far out of harm’s way as possible. But in today’s world, peanuts may be the best management tool we have for my peanut-allergic child.

Let me explain.

My daughter was born with a severe allergy to peanuts and tree nuts. For the first three years of her life, we strictly avoided these foods. She’s now four. Last April, we agreed to undergo an oral food challenge at her allergist’s office to find out if she was still allergic. Her peanut blood test numbers had dropped considerably—this blood test measures levels of Immunoglobulin E (IgE) to individual allergens in the body. IgE is the antibody that triggers food allergy symptoms. Plus, she hadn’t been exposed to peanut since she was a baby. Unfortunately, the oral food challenge outcome wasn’t as we hoped: after ingesting ¼ of a peanut, split into three gradually increasing doses over a 45-minute period, she experienced an anaphylactic event and we had to administer epinephrine. It was an emotional day, to say the least.

After discovering that she was still severely allergic to peanuts, we decided to explore oral immunotherapy: a method of food desensitization that involves re-introducing the immune system to the allergenic food in gradually increasing amounts over time, with the goal of eventual tolerance.

For our family, the results have been life changing. The same little girl that reacted to ¼ of a peanut now eats 12 peanuts daily with zero symptoms. But OIT is not necessarily for everyone, so I’d like to share our family’s journey and offer some insights into the process so that you can determine whether it’s a good fit for you or your child.

If your allergist doesn’t have a clear picture of your allergy severity, treatment may start with an oral food challenge. Once the individual has been identified as an OIT candidate, they are typically provided a juice-like beverage containing tiny amounts of the allergen. This beverage is consumed during the same two-hour period every day. Depending on how quickly a patient builds up a tolerance, your allergist may recommend coming in every week or two for an “updose”—an increase in the amount of allergen consumed. As the immune system grows more tolerant, the patient eventually moves to a powder form (which is typically sprinkled onto food), and finally to solids (e.g., whole nuts).

Importantly, OIT requires a considerable time commitment. Although updosing typically occurs every week or two, the allergen must be consumed every day to build and maintain tolerance. OIT also places constraints on physical activity. During OIT, the patient can only engage in calm, quiet activity half an hour before dosing, and at least two hours afterwards (during their observation period). This ensures that the immune system doesn’t get “revved up” unnecessarily and trigger an allergic reaction.

Is OIT perfect? Not quite. For the foreseeable future, my daughter must eat 12 peanuts with a two-hour observation period everyday. However, we can now choose the time frame each day, and expect the observation period to shorten over time. There’s also a measure of unpredictability. On two occasions, our daughter developed a couple hives after her prescribed dose, and we had to give her antihistamines. Other times, we had to lower her dose because she was sick, which can compromise the immune system. It is these situations, and the risk of producing a more serious adverse outcome, that discourages many allergists from taking up the practice. Indeed, OIT is still relatively controversial. Additionally, OIT treatments are still in their nascent stages and are not widely practiced, so there is less data and information available.

Importantly, not every food-allergic child or adult is a good candidate for OIT. For example, if a patient has severe environmental allergies, acute asthma, or eosinophilic esophagitis, they will not likely qualify for OIT. Additionally, OIT treatment is not available for all allergens—desensitization to peanuts, for example, is far more common practice than, say, shellfish.

If you think OIT may be of interest to your family, I’d encourage you to talk to your allergist and seek out additional information and guidance. You can also reach out to me at mnohe@allergyamulet.com for more on the parent perspective—I’m always up for a good food allergy chat!

- Meg, Director of Strategic Development

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May Contain Nuts: A Crash Course on FDA Food Allergy Labeling Laws

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