Transcript: Interview with Sloane Miller, “Allergic Girl”

Welcome to Rootstock Radio. Join us as host Theresa Marquez talks to leaders from the Good Food movement about food, farming, and our global future. Rootstock Radio—propagating a healthy planet. Now, here’s host Theresa Marquez.

THERESA MARQUEZ: Hello! Do you have allergies or do you know someone with allergies? Well, if you do—and most of us do these days—you are going to enjoy this week’s interview with Sloane Miller, also known, by her friends in Manhattan and others, “Allergic Girl.” And in fact she wrote a book called Allergic Girl: Adventures in Living Well with Food Allergies.That, you can tell, is a very optimistic statement, and that is a great way to describe Sloane. Even though she’s been working with food allergies all her life, she’s a very, very optimistic person and has thought of many, many ways to not just help herself live with allergies but she counsels others as well. She has a very active Web and food blog. She started Allergic Girl Resources Inc. to help people with allergies and live safely, effectively, and joyously, she says. She also is a consultant to restaurants, food service, and even hospitals on how to increase awareness of the kinds of problems people with allergies have and, truly, the difficulties they have trying to always eat the right foods. I hope you’ll enjoy this interview with Sloane Miller, Allergic Girl.

(1:58)

TM: It’s very delightful to be here today with you, Sloane, and be talking about the work that you’re doing and your dedication to it. You know, we are so dedicated to food, and we take it for granted, those of us who don’t have allergies. But Allergic Girl is a book that really woke me up to what it must be like to have allergies, so it really is excellent for me to be interviewing with you today. And could you tell us a little bit about just how did you—you know, when you were born, and how did your parents and you figure out that you had allergies? What’s your history with your allergies?

SLOANE MILLER: Well, firstly, let me just say thank you so much for having me today. And I’m so glad that you, as a non-allergic person, were able to understand the food-allergic experience through my book. And that really touches me very deeply. And that was one of my hopes for the book, was to help people with food allergies really conceive psychologically and understand their own disease. Because many adults, like myself, who were just born with food allergies and have known themselves as a food-allergic person their entire lives, we kind of go through just knowing we have to avoid the food, and sometimes that can lead to an avoidant life. And my joy in writing this book was really to talk about that. Just because you have a restricted diet does not mean you have a restricted life. But how do you do that? How do you do that?

TM: You know, I’ve never heard that expression, “avoidant life.” Did you just make that up?

SM: I just made it up! I just made it up, but avoidance is one of the many coping strategies, from a psychological perspective, and I’m a licensed social worker and this is my background. So it is a useful technique and coping strategy. However, when avoidance becomes your only coping strategy, that becomes a problem, because it means you’re not living a full life. And as those of us with food allergies—which is millions of us, millions upon millions of Americans and now worldwide have severe life-threatening food allergies—this avoidance, and because food is everywhere, as you were saying, we live a very food-based culture because food is everywhere. If you’re avoiding food, you eventually are avoiding life. And the idea of this book, the idea of my practice, was to really help people learn to recognize signs when they’re avoiding life, how to combat them and how to rejoin life.

TM: Tell us about why you decided to write this book.

SM: So I started my blog in 2006 because, as a social worker, I looked around and I didn’t see that anyone was offering supportive services to the food-allergic community, but I knew we needed them. So I started my blog, “Please Don’t Pass the Nuts,” in 2006 as a way to connect with other food-allergic adults to see if anyone was out there. And I quickly learned that there were millions of us out there looking for reliable information about the how of living well with food allergies. You know, people say, “Oh, talk to the chef when you dine out,” but no one says what do you actually say to the chef.

So I decided that it was time for a book, and really, my readership showed me that there was a need for this kind of book written from the perspective of someone with food allergies. There are plenty of books from parents of food-allergic children about families—nothing for adults, nothing. Nothing for adults, nothing from an adult with food-allergic disease, and nothing from the perspective, the psycho-social perspective that I bring as a social worker.

So I wrote the book in 2010 and it was published in 2011 by John Wiley & Sons, and it’s still in print and you can get it online or in bookstores. And it describes the how of living well with food allergies. How do you do it? After you’re diagnosed, how do you then go to your fiancé’s mother’s house and tell her that you can’t have her special Jell-O mold because it has nuts in it, without offending her? What do you say? What does that conversation look like? How do you prepare yourself? How do you deal with people who just don’t want to get on board? There are a lot of extended family members—I still have them! Excuse me—I have them. I’ve had this my entire life, I still have cousins that say, “Well, can’t you just pick off the nuts?” The answer is no. The answer has always been no.

And what I talk about in the book in terms of dealing with family, that’s a big issue for food-allergic children and families, is extended family not getting it, or saying, “Well, I read online that you can take a pill.” There’s no pill. There’s no preventive medication.

What I suggest, because this is such a hot-button topic, is to remember that food allergies and your food-allergic needs, it’s a medical condition, it’s nonnegotiable, but that these family members still have lots of love and support to offer to you. And connect to that. Remove the obstacles of food allergy. It doesn’t need to be a battle. Just remove it and connect to the love.

(7:21)

TM: What was it like with your parents? How did they support you when you were growing up? I know that you told me that both your parents had allergies.

SM: My parents were of the generation, as my mother will frequently say, that they didn’t have conversations about will we or will we not have children—they just had children. So I don’t think they ever said or even conceived of food allergies as a disability, as a reason to not have a family and live their lives. They were very much accepting. My mother has shellfish allergies, my father has bee venom allergies, both of which can be life-threatening and are very serious. So no, I’m sure they had no concept of genetics as a role. They just had me.

And because I was born with food allergies and my first anaphylactic experience was when I was two years old at my grandmother’s house, when I was eating tree nuts, I grew up knowing that I had food allergies, remembering a very adverse reaction that landed me in the doctor’s office and the hospital. So because I knew that about myself, I grew up fully accepting who I am as a whole person, and food allergies, asthma, eczema, and environmental allergies are just part of my concept of Sloane-ness. And again, because there was no one else in my school—there was no one else in my school, so I was pretty much alone in understanding allergic disease.

The prescription from the pediatric allergist was “Don’t eat the food.” That is still the prescription today. There is no medication, there’s nothing preventive that you can take for severe, life-threatening food allergies. There is no cure. The only prescription is avoidance. And if you are not able to avoid, if you have an accidental ingestion of something that is a known allergen and you have an allergic reaction, you have to have an anaphylaxis action plan that you go over with your doctor, and it usually will include something like an epinephrine auto-injector—which I’ve had, you know, twenty-five years I’ve been carrying this medication. I’ve been carrying my asthma inhaler since I was four—me, carrying it.

TM: Aw, a four-year-old…

SM: I know—a little person with an asthma inhaler. But again, you know, I think one might be surprised who does not have allergic disease that this gave me a lot of empowerment to be able to take care of myself in multiple situations. I went to sleepaway camp when I was eight, and I’m an only child, so it was just me. And it was me with my little asthma inhaler and knowing I can’t eat nuts and I can’t eat fish and I can’t eat other things. And I was fine. So it really gave me a lot of skills.

TM: Can we back up for just one sec? I just want to make sure that our listeners, may not… You know, you’re throwing out words that are like four or five syllables, but I think that the most important word was anaphylactic. And it might be good for our listeners to hear, what does that mean?

SM: The definition of food allergic disease is, if exposed to a known allergen, symptoms may include itchy mouth, tongue and lips; hives; respiratory distress or gastrointestinal distress. And the most severe reaction is anaphylaxis or, as I described it, an anaphylactic reaction, and it’s a rapid and potentially fatal onset of symptoms involving multiple bodily systems such as skin, GI tract, cardiovascular, and respiratory systems.

TM: Well, you know, for our listeners out there, I just want you to know that Sloane is a very beautiful woman. She looks terrific. She does not have hives all over her, and she doesn’t look like she’s going to pass out right now. So not to worry, after hearing that definition!

SM: Well, and that is after exposure to an allergen. I mean, it’s not like that’ll just happen spontaneously. There is something called idiopathic anaphylaxis, which does happen spontaneously; there is exercise-induced anaphylaxis, which does happen during exercise. Anaphylaxis is a real and serious condition, and it is the body’s response to stimuli that it believes are invaders. And anyone has potential for anaphylaxis.

TM: I was interested in hearing you say that you were the only one, and yet I read that six million children, or 8 percent of our children in the United States, have allergies. And I wondered, so probably today there wouldn’t be just one in a class with allergies.

SM: There is not just one is a class with allergies. And it’s funny, I talked to this… I counsel… Specifically teenagers who are going off to college have this huge fear that they’re going to get there and no one’s going to be able to help them, and they’re not going to be able to make friends, and they’re going to be really isolated. And what’s fascinating, different than when I was in college—and again, I was one of very few—now there are food allergy clubs at schools. The food service organizations, many, many food service organizations of colleges and universities have food allergen policies in place to serve the population. One of my clients who is an eighteen-year-old who’s going off to college in the fall spoke to the chef at her school as per my suggestion, before going down there. And the chef said, “Just text me your order. I have twenty kids per meal texting me what they need because of their food allergies.” Twenty kids per meal! Very different, very different.

So we’re seeing the numbers have changed radically since I was born and diagnosed with food allergies. Even in the 1980s and 1990s. I mean, the CDC did a report a few years ago, and Pediatrics Journal, through which this number, this six million or 8 percent of children, that is from a Pediatrics Journal survey that was done with 35,000 children with known severe anaphylactic allergies, and that’s where they extrapolated the number. So the numbers have changed. They are real, they are serious. And it’s very different from the world of our generation, our parents’ generation. It’s definitely changed, and it’s real, and it’s here.

(14:02)

TM: You know, when you talked about it, you used the word fear. And it made me stop for a minute and think, wow, yes, fear must be a big part of what you experience, especially when you’re a child or when you’re younger. And what do you think the impact is? If you have allergies, how do those fears play out, do you think?

SM: I think, like any fear, fear is based on the unknown. And so what I do as a counselor—that just gave me chills, by the way. I don’t know about you, but that just gave me chills, because that’s really true: we really fear the unknown. And it’s very important for both families, children, adults, teenagers, to really understand their disease, because with understanding their disease it eliminates the fear of the unknown. If you know what’s going to happen or can potentially happen, if you know where your allergen lurks or hides, and you know how to avoid it—not avoid your life, but avoid the allergen—then those fears of the unknown really start to drop away.

But that’s really the cornerstone of what I call food allergy confidence, is understanding your food allergy diagnosis. And this understanding comes through a series of conversations with your board-certified allergist, who is very well versed in food allergy and food-allergic disease. And really having your fears laid bare and saying to the allergist, “What is my risk in this situation? What is my real risk? How do I protect myself? What do I do if exposed?” And giving—for parents of food-allergic children in particular—giving children age-appropriate tools to cope with the feelings as well as the facts will help lead them towards food allergy confidence for the rest of their life.

TM: You know, in those areas of like dating and traveling, have you found that you feel restricted or you have fears about that? Or do you see other folks who are dealing with allergies having those kinds of fears?

SM: So what you’re really talking about is spontaneity and allowing yourself to be spontaneous. The truth is, you can be spontaneous with a little planning. And that’s the bottom line. So running off to Paris without your EpiPen, that’s not going to work. Kissing a guy, if you’re tree-nut-allergic, who’s just eaten a walnut brownie—not going to work. But with a little planning…

It’s funny, because obviously spontaneity and planning really don’t go together. However, you can feel spontaneous and go and do the things that you want to do. However, you must have a plan—you must have an anaphylaxis action plan, which again I said is something that you go over with your doctor, which is if exposed to a known allergen these are the steps that you take and these are the medications you take. You must know what you’re allergic to, where that allergen hides, and what your level of exposure is.

You know, a doctor is the person that you need to talk to about, “If someone kisses me and they’ve eaten something I’m allergic to, what are the odds that there’s enough protein in that saliva to really send me into an anaphylactic reaction?” And again, it kind of goes back to, once you understand the course of the disease, then you can absolutely, with a little bit of planning, be spontaneous. I have traveled around the world; I have eaten around the world. I have kissed many boys in a spontaneous moment, and I’ve had many conversations with my dates about very, very factual conversations.

I talk about this a lot with my clients. I talk about how to communicate your needs to other people, and that it’s really important to be firm, to be factual, and to be clear. And it doesn’t take a paragraph to say, “I’m severely allergic to tree nuts and salmon; I carry emergency medication with me; I cannot be exposed. Did you eat any of those things today? You didn’t? Great! Let’s smooch!” And what I’ve found is that when you explain it clearly, let’s say on a date, when you explain it clearly, I have to tell you, in all my years of dating—and they have been many years of dating—that I have never found a man who said, “What? I can’t eat that and still kiss you?” It doesn’t happen. What they say is, “What do I need to do in order to kiss you, for you to be safe?”

And that’s because I explain it, it’s clear, it’s factual. This is a medical need. This is not like, “Oh, I don’t like the taste of beer on your lips, my dear.” This is “I have a wheat allergy, you just had a wheat beer—I could get really sick.” And any man that wants to kiss a beautiful woman does not want them to break out in hives or have anaphylaxis. They want to get to that kiss.

(19:09)

TM: You know, you hear a lot about food allergies and intolerance. How are they different?

SM: Sure. So food allergies are when the body detects a protein in a food and thinks it’s an invader, and the immune system rushes in to protect the body from what it believes is an invader. And that invader can be anything from milk, eggs, wheat, tree nuts, peanuts, fish, shellfish, soy, which are the top eight allergens that cause 90 percent of allergic reactions. So that’s what a very basic food-allergic response is.

Food intolerances are usually related more to the sugar component of a food and are also restricted to the GI tract, the gastrointestinal tract. So, for example, someone who has a dairy allergy, they are allergic to the casein, which is protein in a molecule of dairy, and they will have an immune response—so hives, problems breathing, that kind of response that we discussed earlier. If they’re lactose intolerant, then they would have a stomach response. The immune system would not be involved at all, and it would be stomach upset, so gassiness, bloating, maybe some loose stool, general not feeling so cute but not a severe allergic reaction.

TM: Not life-threatening.

SM: Not at all. Uncomfortable, and not fun, but not allergic, no, and not life-threatening.

TM: And Sloane, you were born with allergies, and I’m assuming most people are born with allergies. But I actually have some friends who went, “Wow, you know, I’ve been having these reactions and I think I might be allergic.” Are adults now, after—

SM: Adult-onset, mm-hmm. Adult-onset, yeah. So for adults with food allergies, peanuts, tree nuts, fish and shellfish are the least outgrown. So very often when you meet adults like me, they have similar allergies to me. Milk, wheat and eggs are usually, have been historically, the most outgrown of childhood allergic disease. That is also changing. There are some studies that are saying that children are not outgrowing those as they used to.

However, as I mentioned earlier, anyone can be allergic to anything at any time. And very often, in adults, what you’ll see is fish and shellfish seem to be the ones that are the most adult-onset. I have a client up in Canada who’s in her fifties and her fish allergies and nut allergies started in her thirties, after her first child.

And it’s a real mourning period, to lose foods that you’ve eaten all of your life and loved all of your life, and then to have an anaphylactic reaction. You can’t cheat. Once you’ve had an anaphylactic reaction, there’s no “Oh, I can have a little bit.” You can never eat it again, and you will do everything to avoid that food. But there’s definitely a mourning period, and then a rebirth. And that’s what I help them get to, is the rebirth, because people can stay stuck in the mourning for a very long time when a precious food is taken away from them because of allergic disease.

TM: Yeah, I’m sure if was a New Yorker and someone told me I couldn’t eat pizza, I would go into deep mourning.

SM: And then you would find me, and then you would find alternatives to what it is you were allergic to. So if you needed to be wheat-free, if you needed to be dairy-free, tomato-free, we would discover together. There are so many alternatives.

And this is what I teach to my clients, too, is that they don’t realize life is not just peanut butter sandwiches or pizza or chicken fingers. The world of food is large and wonderful and beautiful. And so if you can eat broccoli—and that is not a common allergen, broccoli; I know George Bush didn’t like it, but—

TM: But he wasn’t allergic to it!

SM: He wasn’t allergic to it, he just didn’t like it. I love it, and many people can eat it. Broccoli is of a family of vegetables, like two hundred vegetables. It would take you years to try all of them if you tried one a week. And I work with clients to help them understand that even though we all get into food patterns where we eat the same kind of five things and we go to the same restaurants and it’s kind of boring, that this is an opportunity to really expand their diet and, with the help of their board-certified allergist, with the help of the registered dietician who’s knowledgeable about food-allergic disease or food intolerances, if that’s your particular issue, or diabetes or celiac disease or FPIES or EoE or any of the food-allergic diseases—that again, the world of food is large and wonderful and beautiful, and that you can experience so much of it that has nothing to do with your allergens.

(24:05)

TM: None of us like to feel like anyone feels sorry for us. How do you deal with that with your relatives? Do they say, “Oh, poor Sloane, she has [unclear]…” Do you get any of that, or do you recommend anyone…?

SM: I don’t. It’s so interesting, because I don’t… I think there are moments where, and I call it—I use a French term that I made up in the book—but I basically call it the poor-me syndrome, you know, where you’re like, “Oh, poor me, I can’t do this. Poor me, I can’t do that.” And I’m like, well, really, who is that serving? It’s usually more internal than it is external. And if it is external it’s usually reflecting an internal feeling.

And so once you really look at, why do I feel “poor me” about this? What have I not accepted about myself? Once you really kind of delve into that work—and you can do that with a therapist, you can do that with me, you can certainly do that with a partner or friends or family—and once you really look at, “Well, what am I missing out on? Well, let me go get it,” then, again, that stuff starts to fall away. So no, I don’t really combat that very often, surprisingly. And I think it’s because I don’t feel that way.

What I realized is that I had a very unique perspective that—and I still have a very unique perspective—that has not been explored, which is all the psychological ramifications of having food allergies, and that doctors can’t cover it because they don’t understand it. Dieticians can’t cover it because they don’t understand it. And even psychologists and social workers don’t really understand it because they don’t have it. Now, I’m not saying you have to have it to understand it, but certainly marrying the two together gives me a very unique perspective that is complementary to all of those three professions.

And that’s also what I love about this job, is that I help the doctors do better work; I help nutritionists do better work. And many of my clients do see, and I recommend that they see, psychologists because they’re having compulsive thoughts and obsessive disorders. And they’re having an interruption of life functioning because of avoidant behaviors, let’s say. And so I work closely with the psychologist to help them understand that with food allergies, let’s say, you know, someone is having OCD behaviors, they’re constantly washing their hands. With food allergies—

TM: What’s OCD?

SM: Obsessive compulsive disorders. So someone with an obsessive disorder, where they’re constantly washing their hands because they have an imagined contaminant, with food allergies the contaminant is real, and the possibility of death is real, and it’s not a fantasy.

(26:53)

So how to help—I help psychologists understand that there is a component of reality in this obsessive fantasy, which is very different than just a straight obsessive behavior. Because usually when you’re treating an obsessive behavior, you’re just treating, “Well, there’s a fantasy that you can die, but you’re not really going to die. You don’t really have germs on you. After you wash your hands once you’re good.” With a food-allergic person, the belief that allergens are everywhere and that even the littlest bit will cause an allergic reaction—well, for some people, that’s true.

So it’s really about separating fact from fiction. And again, I work with these medical professionals to help them understand the mindset of someone with severe, life-threatening food allergies and how this has contributed to possibly these psychiatric disorders that are usually short-term.

TM: Sloane, if someone wants to come onto your blog, how do they do that?

SM: Allergicgirl.com. Easy, and you will see everything. You’ll see video and you’ll see my book and you’ll see what I do, and you’ll see, hopefully this will be on there. And yeah, that’s where you can find me.

I really recommend that families, especially when they’re newly diagnosed, get to a support group. If they don’t have one in their area, create one. They’re very easy to create. It’s really important to create a support system of other families that are going through what you’re going through, sharing resources, sharing highs and lows, talking about food and child-rearing and all the good stuff. It’s very important, support.

TM: Sloane, it’s really been a delight to get to know you and to speak with you today. And I just can’t thank you enough for all the great work that you’re doing. I’m sure there are plenty of people who are joining me, saying, “Oh, I’m so happy there’s someone like Sloane out there!”

SM: Thank you so much! It’s been such a pleasure to get to know you as well, and to dine out with you and talk about all things Wisconsin.