A chronic disease with no known cure. An emerging epidemic that affects up to 15 million people in the United States, including 1 in 13 kids, and more than 17 million people in Europe.

No, this isn’t about an unknown disease that has suddenly emerged out of nowher,  but rather one that has been here all long, although it’s becoming more prevalent. It’s food allergies, and for some people it’s a food safety issue that can be a matter of life and death.

Food allergies among children increased about 50 percent between 1997 and 2011, according to a 2013 study released by the Centers for Disease Control and Prevention. And although the number of people with food allergies is increasing, there’s no clear answer as to why.

Simply put, a food allergy happens when the person’s immune system mistakenly targets a harmless food protein as a threat and attacks it.

Symptoms of allergic reactions to food can range from a rash and an itchy mouth to anaphylaxis, a severe and life-threatening reaction.

An anaphylactic reaction can include coughing, wheezing, tightness in your chest, fainting, swelling of the throat, shortness of breath, trouble breathing, trouble swallowing, and rapid heart beat. Generally the first line of defense for such reactions is an injection of epinephrine, which can be administered with an EpiPen. From there, and a visit to the emergency room.

According to the CDC, food allergies are the leading cause of anaphylaxis outside hospital settings. Anaphylaxis can also occur in people who are allergic to insect stings, medications and other non-food allergens.

Food Allergy Research & Education Inc. (FARE) , which is a non-profit organization, has this sobering information to share: Every three minutes, a food allergy reaction sends someone to an emergency room in the U.S. That adds up to more than 200,000 emergency visits per year.

Yet, the true prevalence of food allergies is unknown due to the misinterpretation of symptoms and the lack of simple diagnostic tests, according to a recent study done by The National Academies of Sciences, Engineering and Medicine.

With that in mind, the study outlines steps to address public health concerns about food allergy safety. No easy task, the study points out, because no research in the U.S. has been conducted with sufficient sample size and in various populations to determine how many people actually have food allergies.

To make matters worse, says the study, public health officials and health care providers frequently misinterpret a food allergy and its symptoms. Not only that, they often cannot differentiate a food allergy from other immune and gastrointestinal diseases, such as lactose intolerance and gluten sensitivity. Also, they frequently don’t know which management and prevention approaches are effective and the best ones to use.

‘We were out there on our own’
Wisconsin mom Amber Stroud is living proof of how much more needs to be known about food allergies.

“We were out there on our own. We felt lost,” she said, referring to the time when she realized that her daughter Iris had food allergies.

Even though Iris had had allergic reactions to yogurt and cheese when she was still just a baby — her face swelled, turned red, and she developed a rash — her pediatrician told Stroud that Iris was fine because “you’re nursing her.”

But when Iris was a year old, an allergist ran some tests and discovered she was allergic to 29 things, among them wheat, rye, oats, barley, chicken, turkey, eggs, peas, soy, bananas, legumes, tree nuts and peanuts. Stroud was advised that she might have to homeschool her daughter.

“My whole world crashed. Who is there to help us,” she remembers thinking. “I needed someone to go to the store with us and show us how to shop for foods Iris could eat. I’d walk through the stores crying. Our whole world had changed.”

At one point, a dietician she was working with suggested they feed Iris some hummus, which is mashed-up garbanzo beans with tahini, aka sesame oil, mixed in.

After eating just one-eighth of a teaspoon, Iris had a potentially fatal anaphylactic reaction to the sesame, a product that doesn’t have to be labeled as an ingredient because it isn’t one of the Top 8 allergens that federal law requires to be declared on food labels.

Those food allergens, which account for 90 percent of allergic reactions, are milk, eggs, peanuts, tree nuts, wheat, soy, fish and crustacean shellfish.

According to the study, food allergies typically develop within the first year of life but they can also develop later in life. Some go away as children get older.

Now that Iris is almost 4, she has grown out of many of the allergies but still remains allergic to dairy, peanuts, tree nuts, peas and sesame.

“It’s so much easier now,” said Stroud, also expressing gratitude for being in a support group of other parents whose children have allergies.

Yet she also knows that things will get more challenging once Iris starts going to school,

With that in mind, Stroud has already been visiting the neighborhood school to talk about food allergies with teachers and staff.

“I’m trying to educate them now, before Iris goes to school,” she said. “Her teacher wants to be involved. After all, Iris won’t be the only child in the school with food allergies.”

As for the essential piece of education that’s still missing, Stroud sums it up like this: “Allergies can be deadly. Until you’ve lived it, you just don’t know.”

‘Our world changed forever’
Irina Lerman remembers how she and her husband “high fived it” after they gave their 10-month-old son, Joshua, some peanut butter, and he had no reaction.

“We cleared all of the allergies, or so we thought,” she said.

Their son loved everything they gave him. Things were looking good. But then one day they gave him some hummus and “our world changed forever,” said Lerman. He started getting red and then broke out in hives and his left eye swelled.

She remembers yelling “Oh my God, he’s having an allergic reaction to something. What do we do?”

“Benadryl,” yelled her panic-stricken husband. “Give him some Benadryl.”

After giving him the antihistamine, they rushed to the emergency room. But by the time they got there, his hives had subsided and he seemed OK. So they drove to the pediatrician’s office instead.

Subsequent testing revealed that he had a severe allergy to sesame.

“At first we didn’t think much of it,” she said. “We assumed that sesame is easy to avoid. No hummus, no sesame bagels, no big deal.

“Again we were wrong.”

Doing some research, she discovered that sesame has 40 different names. And even more daunting, because sesame is not in the Top 8 allergens that must be included on labels, it can hide in natural flavors and spices. And cross-contamination can be a problem because equipment-cleaning rules don’t apply because it’s not one of the Top 8 allergens.

“My journey has been calling every company before giving my son anything,” she said.

But that has its own drawbacks as well since some companies won’t provide her with an answer when she asks if their products contain sesame. Often they’ll tell her that the information is proprietary.

However, some companies such as Kraft, General Mills and Pepperidge Farms are choosing to include sesame on their labels if it’s used in their products. When she thanked Pepperidge Farms for doing that, they told her that the company voluntarily calls out sesame “because we realize sesame is a top allergen.”

Lerman also shared her frustrations when going to restaurants. You can’t get a reliable answer from the wait staff or the chef as to whether sesame is in any of the foods. Most often they just don’t know.

An estimated 500,000 people in the United States are allergic to sesame, and that number is growing, most likely because more people are eating “exotic” foods than in the past. While Canada, Australia, Israel and most of Europe require sesame be declared on labels, the United States has no such requirement.

“We need sesame to be included as the top ninth allergen,” Lerman wrote in comments to the Food and Drug Administration about a proposed bill, ‘Food Labeling Modernization Act of 2015,’ which has of yet gone nowher.

In those same comments, Lerman also pointed out that the recent study of food allergies by the National Academies of Science Engineering Medicine stated: “… evidence of allergy prevalence and reaction severity to sesame seeds may warrant their inclusion on the priority allergen list in the United States.”

Like Stroud, Lerman points to how serious all of this is. “There are allergies, and then there are life-threatening food allergies,” she said. “People need to be educated about this.”

Avoidance can be difficult
Avoiding food allergens is not as easy as it might seem. People can avoid foods that contain ingredients there’re allergic to but cooking from scratch in their own kitchens, but it becomes complicated when dining away from home. Birthday parties, sleepovers, potlucks, restaurants, school cafeterias, and snacks grabbed as you run from one place to another all present the potential for an allergic reaction.

Virginia Stallings, director of the Nutrition Center at the Children’s Hospital of Philadelphia and professor of Pediatrics at the Perelman School of Medicine, University of Pennsylvania, says education is the key.

“… because people with food allergies are in different settings throughout their daily lives, concerted efforts by early care and education systems, schools and universities, food establishments, and the travel industry — in addition to the health care system — are necessary to bring about a safe environment for those with food allergies.”

Because of that reality, she said, many policies, practices, and behaviors could be changed in the short term to substantially improve food safety, which, in turn, would enhance the health and quality of life for individuals with this chronic disease and save lives.

One of those changes, says the study, would be to improve education and training for health care providers, patients and their caregivers, the food industry, and the general public. Along with this, the study recommends that public health authorities, such as the National Institutes of Health, the World Health Organization, and professional societies regularly updat their guidelines on diagnosis, prevention and management of food allergies based on strong scientific evidence, as emerging data become available.

It also recommends that medical schools and residency and fellowship programs include training in the management of food allergies and anaphylaxis, which should go along with training on approaches to counseling patients and their caregivers.

And, of course, organizations that provide emergency training to first responders and the public should include food allergy and anaphylaxis emergency management in their training.

Preparation, preparation, preparation
That’s New York attorney Jill Mindlin’s mantra as she lives life with a daughter who has food allergies, although she has outgrown some of them now that she’s almost 16. Nevertheless, she’s still allergic to dairy, eggs, tree nuts and several other foods.

“There’s a loss of spontaneity,” Mindlin said, referring to events that pose problems with food allergies. Events like vacations, for example.

“If we’re going on a trip, we need to know wher we’ll be eating,” she said. “We need to include that in our plans.”

Preparation is especially important now that her daughter, Maya, is close to going off to college. Mindlin knows she can’t go with her, of course, and so has been relinquishing control bit by bit and handing it over to her daughter.

“It’s been a difficult shift for me,” she said. “I don’t carry an EpiPen in my purse anymore. Now that’s her responsibility.”

Mindlin is the co-leader with a parent who’s a nurse of a support group that helps parents through the challenges of dealing with food allergies. The 100 to 150 members share information through emails. Mindlin was also a panel member who participated in the study.

Mindlin said that the parents in the support group learn the symptoms to look out for and how to prevent, recognize and respond to them. Besides the rashes and swelling and other well-known symptoms, there’s another symptom that many people don’t know about: the fear of impending doom. Not everyone with an allergic reaction experiences this symptom, but it’s important for people to know about. It happened to Mindlin once, and she actually collapsed in the hospital and lost consciousness.

“The learning curve is tremendous,” she said. “All of this is serious, which is why so much more research is needed.”

Recommendations from the study committee
Use proper diagnostic methods and provide evidence-based health care. This is important, the committee reported, because there are a lot of “non-standardized and unproven procedures” such as electro-dermal testing and applied kinesiology.

Even so doctors and other health care providers may recommend tests that are not scientifically proven to be effective in diagnosing food allergies. Parents may read about them on the Internet as they search for solutions.

The “Guidelines for the Diagnosis and Management of Food Allergy in the United States,” published by the National Institute of Allergy and Infectious Diseases, specifically lists tests that are unproven and non-standardized and are not recommended for the diagnosis of food allergy, many of which are included in the list below. They also warn that the tests can be risky. The guidelines recommend against:

• Applied Kinesiology (muscle testing)
• Cytotoxicity testing
• Electrodermal test (vega testing)
• Nambrudipad’s Allergy Elimination Technique (NAET) aka Natural Elimination of Allergy treatment (NEAT)
• IgG/IgG4 testing
• Hair analysis
• Pulse testing

“No simple accurate diagnostic tests exist for food allergy,” according to the study. “The patient’s medical history and other test results, such as from a skin-prick test, can suggest the likelihood of a food allergy, but it’s not enough to confirm a diagnosis.

Food industry leaders need to work to integrate food allergy training into existing food safety and customer service training for employees at all levels. This means including processing sites, retail food and grocery stores, restaurants and other foodservice venues.

The study’s authors also contend the current precautionary labeling system for allergenic foods is not effective in informing consumers about the risks from food allergens.

Looking ahead
The report recommends that within the next year, federal agencies such as the FDA, CDC, and the Federal Aviation Administration convene a special task force that includes participants from the medical community, food companies, and advocacy stakeholder groups to establish and implement policy guidelines.

The report also says that guidelines should ensure that emergency epinephrine capabilities such as EpiPens are in place for children and adults in public venues, including schools, early care and education facilities, and airplanes. Training in food allergy and anaphylaxis first aid should be provided to appropriate school and university health staff, early care and education providers and on-board flight crews.

The study was supported by:

• Food and Drug Administration
• Food and Nutrition Service of the U.S. Department of Agriculture
• National Institute of Allergy and Infectious Diseases.
• The Asthma and Allergy Foundation of America,
• Egg Nutrition Center,
• Food Allergy Research & Education,
• International Life Sciences Institute North America,
• International Tree Nut Council Nutrition Research & Education Foundation,
• National Dairy Council,
• National Peanut Board,
• The Seafood Industry Research Fund.

The National Academies of Sciences, Engineering, and Medicine are private, nonprofit institutions that provide independent, objective analysis and advice to the nation to solve complex problems and inform public policy decisions related to science, technology, and medicine.  The Academies operate under an 1863 congressional charter to the National Academy of Sciences, signed by President Abraham Lincoln.