If you don’t have a food allergy, you just don’t understand the obstacles that those who do face daily.” You often hear that sentiment from people who are allergic to food such as milk, eggs, wheat and peanuts, which are U.S. dietary mainstays and difficult to avoid. However, our society is more aware of food allergies than ever before, experts say.
Solutions aren’t easy to come by for the 13.4 million to 15 million U.S. consumers who have a food allergy, according to estimates by federal health agencies and food-allergy researchers, particularly when it comes to finding a cure. However, at least the awareness of food allergies is on the rise. A new federal law enables schools to be better prepared if a child has a serious allergic reaction to a food, and the first national food-allergy guidelines for schools were published. That’s a good start for the estimated 4 percent to 6 percent of children who have a food allergy, says Dr. Wayne Giles, who is the director of Division of Population Health at Centers for Disease Control and Prevention (CDC).
Further, advances in research are helping doctors to diagnose and treat patients, and a potential cure for peanut allergy holds promise.
To get a bead on what it’s like to live with food allergies in 2014, we spoke with 14 medical experts, government sources and food-allergy advocates. They tell us that people who have food allergies aren’t as isolated as they used to be.
WARY PUBLIC. You likely have seen headlines about food-allergy reactions that might seem like overreactions, such as peanut-free sections that are established at sports stadiums or schools that ban shared treats that are brought from home. Although the number of people who have a food allergy is small, for those people, it’s a big problem—potentially fatal.
What the Doc Says
For some peanut-allergy patients, for example, even touching peanuts or breathing in peanut dust, say, from being near to someone who eats peanuts, might lead to an allergic reaction, according to National Institutes of Health. Severe reactions to this type of exposure are unlikely, experts say. The problem is that food-allergy reactions and their treatments don’t come in a one-size-fits-all package. In other words, a treatment that might be overkill to one person who has a food allergy might be a lifesaver to another. Although allergic reactions to food aren’t always life-threatening, any allergy attack has the potential to be fatal. Medical research and legislative actions react to worst-case scenarios, which are the focus of this report.
Food allergies are estimated to cause about 30,000 episodes of anaphylaxis and 100–200 deaths per year in the United States, according to National Institute of Allergy and Infectious Diseases (NIAID). Anaphylaxisis a whole-body reaction, which can include a sudden drop in blood pressure and a narrowing of the airways, and it can be fatal. A December 2013 article in The Journal of Allergy and Clinical Immunology pegged the fatalities higher, at between 186 and 225 deaths per year. Cases of anaphylaxis in medical settings rose to 25 per 1 million people in 2009 from 21 per 1 million people in 1999, according to the article.
Children can outgrow food allergies, but no way exists to tell whether yours will be among those who are fortunate enough to do so. A study of 40,104 families that was published in July 2013 in Annals of Allergy, Asthma & Immunology found that 26.6 percent of children outgrew their food allergies by an average age of 5 years, 5 months. NIAID says children are more likely to outgrow milk, egg, soy and wheat allergies eventually; peanut and tree-nut allergies are less likely to go away.
Despite the small numbers of those who have them, more attention is being paid to food allergies. In November 2013, President Barack Obama signed the first federal law that encourages schools to stock epinephrine injectors for use in allergic emergencies. Epinephrine works by relaxing the muscles in the airways and tightening the blood vessels, which helps to counteract an allergic response. Epinephrine comes in a prefilled automatic injector, which typically is a spring-loaded syringe that the patient or another person can inject at the first signs of a severe allergic reaction, such as hives, swelling or wheezing. The law provides financial incentives to states if schools stockpile epinephrine and train school personnel in how to use it.
MILK MISERY. Allergic reactions to milk are among the most common among children who live in the United States.
“The passage of the federal bill was terrific,” says Dr. Lynda Schneider, who is the director of the allergy program at Boston Children’s Hospital. She says about 20 percent of children who have an allergic reaction in school don’t know that they have a food allergy, so having epinephrine available could be lifesaving.
People who have food allergies who are prescribed epinephrine injectors should carry them at all times, says Dr. Anna Nowak-Wegrzyn, who is an associate professor of pediatrics at Icahn School of Medicine and Jaffe Food Allergy Institute. This is important, because even if a previous allergic reaction was mild, no guarantee exists that your next reaction to a food won’t lead to anaphylaxis.
According to Food Allergy Research & Education (FARE), nine states have laws that require schools to stock epinephrine injectors, another 37 have legislation introduced or pending in 2014 to stock epinephrine injectors at schools. Four states—Delaware, Mississippi, New Hampshire and Rhode Island—have neither.
For people who are nervous about using an automatic injector on themselves or on others, a new type of automatic injector was introduced in 2013. The Auvi-Q, which is about the size and shape of a cellphone, has voice prompts. The prompts take a user through all of the required steps, such as removing the safety cover, positioning the device and counting down the 5 seconds that it takes to complete an injection.
However, it’s more expensive than are conventional automatic injectors—about $360, compared with $210–$325. Further, some insurance companies won’t cover the Auvi-Q, Schneider says, while conventional automatic injectors have widespread coverage.
Another move toward better food-allergy education came in October 2013 when CDC released “Voluntary Guidelines for Managing Food Allergies in Schools and Early Care and Education Centers.” Fifteen states have their own guidelines, Giles says, but national guidelines were nonexistent. The national guidelines can be found at foodallergy.org/cdc.
Until CDC’s publication, many school administrators had no guidelines on how to take care of children who have a food allergy, says Dr. Ashis Barad, who is a pediatric gastroenterologist. The publication, he says, legitimizes that food allergies are “real and need to be taken care of.” He says guidelines might eliminate a lot of common food-related activities in school, such as craft projects that involve food.
Further, in January 2014, FARE launched a program to help colleges and universities to understand the potential dangers of food allergies. Representatives from at least 30 colleges and universities, food-allergy experts and food-industry groups attended the launch meeting. FARE says the goal for the College Food Allergy Program in 2014 is to create guidelines and develop resources, such as training programs for college food services and resident advisers and educational materials for students and their families.
Food Allergies: The Big Eight
Still, more training is needed in schools and restaurants, says John Lehr, who is the chief executive officer of FARE. He says the program’s goal is to raise public awareness about food that can cause allergic reactions as well as educate workers on the steps to take if a child experiences a food allergy and anaphylaxis.
DIAGNOSIS DOUBTS. Given the potential danger of an allergic reaction, it’s unfortunate that diagnosis of food allergies isn’t a simple process. Allergic reactions to food are wide-ranging, Nowak-Wegrzyn says, which means that you might not have the same symptoms as someone else who has the same allergy. Symptoms include difficulty breathing, hives, nausea, swelling of the face and other body parts and vomiting. These can appear within seconds of exposure or take hours to appear.
Dr. Marty Hartz, who is a clinical pediatric allergist at Mayo Clinic, says a food-allergy diagnosis is made on two factors—a history of symptoms and the presence in the patient of a specific antibody. That antibody, which is called immunoglobulin E (IgE), triggers the immune response and can be detected by skin tests or blood tests, she says. Unfortunately, she says, even those methods aren’t foolproof. Sometimes people who don’t have food-allergy symptoms test positive for the antibody, she says, and sometimes people who have food-allergy symptoms test negative.
If a food allergy is suspected and tests are inconclusive, a food challenge helps an allergist to determine whether the patient has an allergy. In a food challenge, the doctor observes a patient’s reaction to the suspected food allergen, Hartz says. The food challenge is conducted in a lab or a doctor’s office with epinephrine and resuscitation on hand if a patient should start to have a serious reaction.
GETTING SCHOOLED. New federal guidelines promote training and the availability of epinephrine injectors in schools.
You should know that testing methods exist that NIAID says shouldn’t be relied on to diagnose a food allergy. In 2010, NIAID released guidelines on food-allergy diagnosis and management that list tests that it considers to be “unproven” or “nonstandardized.” These include tests of muscle, cytotoxicity (cells), hair, pulse and electrical properties of skin. These tests typically are promoted by practitioners of alternative medicine; some are available as at-home kits.
NIAID says no evidence demonstrates that any of these nonstandardized tests has any value in diagnosing food allergies. Consequently, the institute’s guidelines say, these test results might cause “false positive or false negative diagnoses, leading to unnecessary dietary restrictions or delaying the appropriate diagnostic workup, respectively.” In other words, FARE says, results from an unproven test might mislead you to believe that you aren’t allergic to a certain food and lead to a potentially dangerous situation if you consume it.
NIAID says its diagnosis guidelines are designed not only for allergists/immunologists but also for doctors of family medicine, internal medicine, pediatrics and other specialties. FARE and American Academy of Allergy, Asthma & Immunology (AAAAI) and American College of Allergy, Asthma & Immunology (ACAAI) recommend that an allergist/immunologist tests you for the best results. These doctors have advanced schooling and clinical experience. The organizations say this equates to a more accurate diagnosis. Doctors whom we contacted say you don’t have to be an allergist to test for food allergies, although allergists might have more specific familiarity of treatments.
Another obstacle in food-allergy diagnosis is that the line between food allergies and food intolerance is blurred, because symptoms overlap. No clear statistic exists on how many people have food intolerance: Our research turned up estimates of 2 percent to 25 percent.
According to Mayo Clinic, the difference between a food allergy and food intolerance is that food intolerance often is caused by the absence of an enzyme that’s required to digest the offending food fully, experts say. An individual’s reaction to a food’s naturally occurring or added chemicals also can cause food intolerance. One way that you can tell the difference is that an allergic reaction typically comes on quickly, within an hour, experts say, while a reaction from food intolerance is more gradual—taking hours or even days to appear. Further, those who have a food allergy react negatively to a small amount of food, while those who have food intolerance might be able to eat a small amount of food and have no reaction, according to Cleveland Clinic.
Although a food allergy is triggered each time that food is consumed, food intolerance typically is dose-related. For example, Cleveland Clinic says a person who has a lactose intolerance might be able to drink milk that’s in coffee or even a single glass of milk, but he/she will become sick if he/she drinks several glasses of milk.
NO CURE. Food allergies have no cure, Nowak-Wegrzyn says. People who have a food allergy must manage the condition through dietary control and by limiting exposure to the allergen. However, research is underway on potential ways to reduce, if not eliminate, allergic reactions to food. For instance, Nowak-Wegrzyn found in studies that she conducted in 2008 and 2011 that about 70 percent of children who are allergic to milk can tolerate it in baked goods, because the high temperature of baking destroys the protein to which their bodies react. Still, NIAID recommends that children who are allergic to milk should see their doctor before they try a baked food that’s made with milk.
Other areas of study include sublingual immunotherapy, in which a food allergen is held under the tongue, and oral immunotherapy, in which the allergen is given in small amounts and the amount increases over time. The aim of both of these strategies is to desensitize an allergic person to the food and build a tolerance over time. Research centers report positive results through desensitization. For example, scientists in Britain reported in the January 2014 issue of The Lancet that after 6 months of oral immunotherapy, at least 84 percent of children who had a severe peanut allergy could eat about five peanuts per day safely.
However, both forms of immunotherapy still are in research stages, and because researchers have to follow patients for years, no one could say when a standard treatment might become available.
FISHY BEHAVIOR. Medical experts say people who have shellfish allergies often are allergic to fish, too.
Also, no one knows whether the effects of immunotherapy wear off over time, or whether a patient has to, say, keep receiving small amounts of the allergen to have a continued protective effect, says Dr. Wayne Shreffler, who is the chief of pediatric allergy and immunology and the director of Food Allergy Center at Massachusetts General Hospital. Shreffler has two oral-immunotherapy studies underway.
A study by Stanford University suggests that a blood test might help to predict which allergic patients might respond best to oral immunotherapy. (The study didn’t include sublingual immunotherapy.) That study, which was published in the January 2014 issue of The Journal of Allergy and Clinical Immunology, tested the blood of 20 children and adults who stopped oral immunotherapy and then were exposed to allergens. Researchers found differences in the DNA between the 13 patients who then had a reaction to the allergens and the seven who didn’t. Being able to distinguish those DNA differences between patients could help scientists to predict whether a patient is a good candidate for oral immunotherapy.
Another approach that Schneider and other researchers are trying is the use of monoclonal antibodies in peanut-allergic children. She and colleagues gave patients the medication omalizumab, which is approved for use in people over age 12 who have asthmatic reactions to airborne allergens. These patients then were given small amounts of peanuts, with the daily dose increased gradually over several months. By the end of the study, Schneider says, the patients were eating peanut flour that equated to the same amount of protein that’s found in 20 peanuts. In other words, those patients could tolerate eating 20 peanuts, Schneider says, or the equivalent amount in, say, peanut butter, peanut candy or peanut cookies. (Peanut flour is used in baked goods, filling, frosting and peanut butter.)
“The idea is that the monoclonal antibody drug helps bind up the patient’s own IgE against peanuts,” she says. In other words, the patient’s IgE antibodies are prevented from triggering allergic symptoms. Twelve of the 13 patients were able to get through the study fully, Schneider says. Stay tuned: Other research centers are conducting long-term studies on the effectiveness of monoclonal antibody medications.
“Food is such a big part of our lives—it’s hard for people who have food allergies,” says Dr. Octavia Pickett-Blakely, who is an assistant professor of medicine at Hospital of University of Pennsylvania and Perelman Center for Advanced Medicine.
Unfortunately, we aren’t sure when living with a food allergy will become significantly easier.
Mary Brophy Marcus has been a health reporter for 15 years. Her stories have appeared in USA Today, U.S. News & World Report and The Washington Post, among other publications.