Food Without Fear

TEST YOUR FOOD IQ

HOW MUCH DO YOU KNOW ABOUT FOOD ALLERGIES? FIND OUT USING THE following true/false quiz. Don’t think too much about each question; answer as best you can (you’re not being scored). The answers are here. By the end of the book, you’ll have a full understanding about these topics.

Answers:

1. False

2. False

3. False

4. False

5. True

6. False

7. True

8. False

9. True

10. True

11. False

12. False

13. False

14. True

15. False

16. True

17. False

18. False

19. False

20. False

DECODING YOUR FOOD REACTIONS

The Questionnaire

IF I HAD TO OFFER A FIRST BIG STEP IN SOLVING YOUR FOOD REACTIONS, IT would be this: Get to know them. Ending or managing them begins with you. Solving food reactions is partly science and partly art. Although we have lots of high-tech tools available to us in medicine, diagnosing food reactions is not as absolute and straightforward as many people imagine. I research food allergies, so you can imagine how surprised I was to find that so many US adults—one in five—reported a “food allergy.” We quickly understood how much confusion there is around food conditions. In this book, I want to help people understand what they have, what may cause it, what happens in their body, and how to properly diagnose, manage, and even treat it.

Unfortunately, unless you have a very easily diagnosable condition that’s not complicated by another health challenge, figuring out a root cause of a food reaction can be complex and immensely vexing. So, the more you can contribute to the story of your reactions, the more you can shift your experience to one that’s less reliant on art and pseudoscience and more based on data-driven science.

As a useful exercise at the start of the book, which will equip you with the information you need to decode your own unique condition(s), use the following checklist to organize your thoughts and personal information. This questionnaire is designed to help you prepare for a doctor’s visit, giving you clues to what to discuss. I also realize you want to be told what to do as soon as possible, and even though you’ll find much to consider throughout this book, the following questions will provide you with concepts to think about as you read further and apply these ideas to your life. Your answers will help you get the most out of this book and find a solution sooner rather than later.

Directions: Answer as many of the following questions that apply to you (or a loved one who has a food-related concern) and bring this checklist with you to your/their doctor. Add additional notes where necessary. You’ll find this online at www.foodwithoutfearbook.com to download as well.

These questions outline aspects of your/their medical history and experiences that are important for a health-care provider to consider when evaluating a food-related condition.

What do you hope to achieve by better understanding where you fall on the spectrum of adverse food reactions?

What foods give you trouble? List all, whether they are whole foods (e.g., peaches and eggs), whole categories of foods (e.g., dairy, shellfish), or single ingredients often mixed with other ingredients (e.g., gluten, sulfites, sugar):

1.

2.

3.

4.

Family history:

Have you ever been diagnosed with any other health condition?

❏ Allergic conditions (e.g., eczema, hay fever, asthma)

❏ Metabolic conditions (e.g., insulin resistance, diabetes)

❏ Digestive disorders (e.g., irritable bowel syndrome, inflammatory bowel disease [Crohn’s or ulcerative colitis], gastroesophageal reflux disease [GERD])

❏ Autoimmune conditions (e.g., celiac disease, chronic fatigue, psoriasis, fibromyalgia, Hashimoto’s thyroiditis, rheumatoid arthritis)

❏ Other (e.g., depression, serious infections)

Do you take any medications, vitamins, or supplements, including those unrelated to any food condition?

❏ Yes (if so, list…)

❏ No

Environmental history:

How old is your primary residence?

How long have you lived there?

Is there carpeting in this home? Y/N

Has there been water damage? Y/N

Are there any pets? Y/N

For each of those foods that you listed as causing you trouble:

What are your main symptoms? (check all that apply)

❏ Hives

❏ Rashes, itchy skin

❏ Coughing, wheezing, short of breath, trouble breathing

❏ Chest pain

❏ Sneezing

❏ Watery or red eyes

❏ Runny or stuffy nose

❏ Stomach pain, cramping, bloating, gas, intestinal distress

❏ Heartburn, acid reflux

❏ Diarrhea or constipation

❏ Nausea

❏ Vomiting

❏ Throat tightening

❏ Trouble swallowing

❏ Food “feeling stuck”

❏ Tingling or itching in the mouth or on the lips

❏ Dizziness, lightheadedness

❏ Sense of impending doom

❏ Swelling of your face, tongue, throat, abdomen, or arms and legs

❏ Blood in stools

❏ Unexplained weight gain or loss

❏ Eczema

❏ Headaches, migraines

❏ Joint pain

❏ Brain fog, inability to focus or concentrate

❏ Irritability or nervousness

❏ Lethargy, malaise

❏ Anxiety around food

❏ Other ____________

At what age did you first experience food-related symptoms?

When you’ve had a reaction to this food, when did the reaction start?

❏ Within 15 minutes of eating the food

❏ Between 15 minutes to 2 hours

❏ >2 hours to 24 hours

❏ More than 24 hours

❏ I don’t know

Have you ever been tested or in any way evaluated for any food allergy or sensitivity/intolerance?*

❏ Yes, by a medical professional (If so, what type of clinician? What was diagnosed? What was recommended to manage, treat, and prevent?)

❏ Yes, using a store-bought or mail-order (over-the-counter) sensitivity kit (If so, what were the results?)

❏ No

* Be sure to bring any test results to your doctor’s appointment.

Have you ever tried a specific diet to treat your condition?

❏ Yes, and my symptoms improved (please describe…)

❏ Yes, and my symptoms worsened (please describe…)

❏ Yes, and I saw no change (please describe…)

❏ No

Have you tried any additional (nondietary) therapies to control symptoms, including prescribed drugs or over-the-counter treatments?

❏ Yes, and my symptoms improved (please describe…)

❏ Yes, and my symptoms worsened (please describe…)

❏ Yes, and I saw no change (please describe…)

❏ No

Do certain activities or moments in your life seem to make your reactions worse, such as exercise, drinking alcohol, certain medications, menstrual period, travel, periods of acute stress?

❏ Yes (please describe…)

❏ No

❏ I don’t know

Information is power. The more you can track your experience, the more information you have to use in identifying, managing, treating, and ultimately gaining control of your condition(s) and preventing future episodes. Later in the book, I’ll present an acronym—STOP—that will further help you arrive at solutions. Here’s a quick preview:

Let’s first gain a full understanding of food reactions and then you’ll have the information you need to chart your path to food freedom.

PART I

THE FOOD REACTION SPECTRUM

Where Are You?

one

BODY BACKLASH

The Surprising Rise of Reactions to Food in the 21st Century and the Search for Answers

WHEN JAMISON VULOPAS (“JJ”) WAS TWO YEARS OLD, HE CONSUMED A seemingly innocuous sour cream and onion potato chip made with milk products—and had the first major reaction that sent his body into a spiral of severe symptoms. Although he eventually outgrew an allergy to peanuts (a legume) and eggs, he’s been allergic to milk and tree nuts his entire life. As a young boy, he learned how to deal with his allergies with the help of his parents who kept the house safe and were extraprotective of him. But it wasn’t easy. By the time he entered middle school, JJ decided he would no longer be defined—or confined—by his allergies. He didn’t want to be “that food allergy kid” only known for being “the one who can’t drink milk or eat nuts.” It was time to come out of his emotional shell, take full ownership of his allergies, and turn them into a positive attribute.

And that he did, becoming class president his senior year in high school and moving on to the University of Pennsylvania, where he wrote his first book, Land of Not, to teach kids with allergies how to frame their condition in their lives and have a healthy relationship with it. The book soon became a message not just for kids with allergies, but for all children who think negatively about themselves and feel “less than” their peers. Its core message is simple: Do what you love. Embrace what you’ve got. You are who you are. Not who you’re not. Live in the land of CAN. Today, JJ is a young adult with his college degree who is navigating the world of finance in New York City and, when he has time, maintaining a website and writing about health, safety, and empowerment books based around the “can” philosophy.

I met JJ in 2018 at a food allergy conference, when he reached out to me and gave me his amazing book. I was immediately impressed with his passion, talent, and desire to make an impact. About a year later, my daughter, who also has food allergies, cowrote another book with JJ for schools to introduce and discuss food allergies with their students. JJ is the perfect example of what it can be like for kids to grow up feeling insecure about their food allergies and how they can eventually find a way to become their own best advocate and gain skills to protect themselves and turn their situation into a net positive. You can learn to appreciate the condition and educate others. I trust JJ will have some remarkable achievements in his life and share his hard-won experience with the world. Although he has to think about his food allergy every day, it no longer is a source of fear and trepidation. He’s starting oral immunotherapy (see Chapter 7) for his allergens, but he is thriving despite his limitations and enjoying life to the fullest. Like other young adults who have been living with food allergies most of their life, he has learned how to be fully engaged no matter where he is—at home, at work, out with friends, and throughout his community (including his online one at www.thelandofcan.com).

When my group asked young adults what positive attributes they got from their food allergies, the top responses were an improved ability to advocate for themselves and greater empathy for others. JJ fully embodies these admirable traits, which any parents would hope for in their children. It also reflects an attitude that anyone—regardless of age—would do well to adopt: by being aware and empowered with the right knowledge, advocating for ourselves and having empathy for others, we can live fearlessly with any type of food-related condition across the entire spectrum.

THE SCOPE OF THIS 21ST-CENTURY EPIDEMIC

As I noted in the Introduction, 2011 was a game changer in my field when my team at the Center for Food Allergy & Asthma Research (CFAAR) published, in the journal Pediatrics, the most comprehensive and widely cited estimate to date of the prevalence and severity of childhood food allergy in the US. Additionally, updated data published in 2018 also shined a light on the relationship between food allergies and food intolerances. This was followed by our much publicized 2019 publication in the Journal of the American Medical Association Network Open that spotlighted the surprising food allergy phenomenon among adults.

Every three minutes, a food allergy reaction sends someone in the US to the emergency room. Each year in this country, at least one million patients receive emergency medical care for allergic reactions to food. Our data estimate that up to 32 million Americans have food allergies, including 6 million children under age eighteen (about 8 percent of the pediatric population). As a reminder, that’s 1 in 13 children, or roughly two in every classroom and 1 in 10 adults. The Centers for Disease Control and Prevention (CDC) report that the prevalence of food allergy in children increased by 50 percent between 1997 and 2011. About 40 percent of children with a food allergy will experience a severe reaction. People can be allergic to any food, but the top nine food allergens are peanuts, milk, shellfish, tree nuts, eggs, finfish, wheat, soy, and sesame.

Recent numbers published by my colleagues and I show that about 40 percent of children with food allergies are allergic to more than one food. Importantly, food allergies are costly both financially and emotionally. My research has estimated that American families spend nearly $25 billion annually caring for children with food allergies (special diets and medications, changing jobs and even place of living to be close to the right medical care; a little more than $4,000 per year is the average additional amount incurred by a family with a child with food allergy). There are social tolls as well: About 1 in 3 children with food allergy report being bullied as a result. Adults with food allergies can also suffer emotional and financial expenses, not to mention major impairments to their quality of life. And as I already mentioned, while many food allergies do typically develop in the first few years of a person’s life, nearly half of more than twenty-six million American adults (about 10 percent of all adults) with a food allergy developed at least one allergy after the age of eighteen. Of those twenty-six million American adults, 25 percent had their very first food allergy reaction as an adult.

Although acute and severe reactions that impact multiple organ systems and cause such symptoms as trouble breathing, a drop in blood pressure, and vomiting are rare, between 2007 and 2016, health claims for this frightening condition, called anaphylaxis, went up 883 percent among nineteen- to thirty-year-olds. Food allergy is one of the most common causes of anaphylaxis and accounts for 30 to 50 percent of all anaphylaxis cases and up to 81 percent of anaphylaxis cases in children. Over 50 percent of children and adults with food allergy reported experiencing an allergic reaction in the past year, with 1 in 4 requiring epinephrine. Additionally, 1 in 5 children with food allergy were seen in the emergency department in the past year for a food allergic reaction.

However, this is not just an American epidemic. Current global trends show that the number of people reacting to foods is increasing at an alarming rate, particularly in developed countries. In Australia, 1 in 10 infants suffers from a food allergy, which is the highest prevalence of food allergy ever reported on the planet. Worldwide, we are seeing food allergies increasing. On my travels to Australia, India, and Europe, I’ve spoken to many people about the rise in food allergies and related food conditions, such as intolerances and what many refer to as “sensitivities,” which again are technically not allergies or allergic disorders. But people confuse the terms—they don’t understand what’s going on in their body and how they can manage their symptoms. Around 20 percent of the US population think they may have a “food allergy,” but as previously called out, about half of those folks may not have an immune-mediated food allergy and instead suffer from another food-related condition, such as an intolerance. Moreover, only 5 percent are getting a doctor’s diagnosis, and the other 15 percent are avoiding foods without truly knowing what could be happening.

What exactly is a true “food allergy”? By definition, a food allergy is a medical condition in which exposure to a food consistently triggers a harmful immune response. That’s a key point to remember: the body’s natural defense system—the immune system—is involved; it awakens as though it’s responding to a serious invader. The immune response, called an allergic reaction, occurs because the immune system treats certain proteins in the food as a threat rather than recognizing them as the harmless nutrients they are. The proteins that trigger the reaction are called allergens. The symptoms of an allergic reaction to food can range from mild (itchy mouth, a few hives) to severe (throat tightening or swelling, difficulty breathing, drop in blood pressure). Allergic reactions are not uniform; they affect people differently, range in severity, and manifest in myriad bodily symptoms depending on the type of reaction, the amount of food consumed, and the person affected. The most dangerous and severe reaction is anaphylaxis. Several types of reactions can occur in the same individual and a previous mild reaction doesn’t always mean future reactions will be mild.

The Top 9 Food Allergens

• Peanuts

• Tree Nuts (e.g., walnuts, pecans, almonds, cashews, hazelnuts, Brazil nuts, pistachios, macadamia nuts)

• Milk

• Egg

• Shellfish (e.g., lobster, shrimp, crab, clams, mussels, oysters)

• Finfish (e.g., salmon, cod, halibut, catfish)

• Soy

• Wheat

• Sesame

Note: the word nut is often used broadly and does not always refer to a true tree nut. Macadamia nuts and pine nuts, for example, are both seeds. Coconut is a fruit, although the FDA labels coconut as a tree nut. Similarly, nutmeg, water chestnut, butternut squash, and shea nuts are not tree nuts and, like coconut, are generally well tolerated by tree nut–allergic individuals. Also note that although 30 percent of individuals allergic to peanuts are also allergic to at least one tree nut, having a tree nut allergy does not necessarily mean the person is allergic to peanuts. Tree nuts are also unique, and people can be allergic to some and eat others. Recent research is also finding certain tree nuts, such as cashew and pistachio, and walnut and pecan, run together. People with a tree nut allergy can usually consume seeds without difficulty, such as sesame, sunflower, and pumpkin.

Common Offenders for Food Intolerances

dairy

gluten

caffeine

salicylates*

amines**

sulfites

fructose

alcohol

monosodium glutamate (MSG)

food dyes

* Salicylates are naturally occurring compounds in plants (fruits and vegetables).

** Amines are products of protein breakdown in food. They are high in cheese, chocolate, wine, beer, yeast extracts, and fish products. They are also found in certain fruits and vegetables (e.g., bananas, avocados, tomatoes, and broad beans).

ALLERGIES VS. INTOLERANCES