As a parent, it can be overwhelming to see your child’s face become red and botchy within minutes of eating a meal. Trying to diagnose and determine exactly what foods or ingredients are causing food allergies can feel like a medical treasure hunt. The process is full of twists, but the reward is keeping a child healthy.
Diagnosing food allergies, and then managing them once they are diagnosed, can be fraught with challenges.
“You learn how to manage food allergies because you have to,” says Susie Hultquist, founder and CEO of the Chicago-based app Spokin, which has Yelp-like reviews and easily accessible information about food allergies.
“You have no other choice. You’ve got to be vigilant all the time,” says Hultquist, who created Spokin to help her daughter and other food allergy parents.
The number of kids and adults who have food allergies is skyrocketing. Food allergies in children increased by 50% between 1997 and 2011, according to the Centers for Disease Control and Prevention. Today, 1 in 13 children in the U.S. has food allergies, according to Food Allergy Research and Education (FARE).
Adults can develop food allergies, too. One in 10 adults in the U.S. now has a food allergy, according to a recent study in JAMA Network Open that included 40,400 adults. Shellfish is the most common food allergy among adults.
When you’re newly diagnosed with a food allergy, “It is very challenging to avoid your allergen in every meal,” says Ruchi Gupta, MD, MPH, director of the Center for Food Allergy & Asthma Research at Northwestern Medicine and the Ann & Robert H. Lurie Children’s Hospital of Chicago. “Your physician, food allergy organizations and support groups can help you navigate the process,” says Gupta, who was the lead researcher of the JAMA Network Openadult food allergy study.
What is a food allergy?
Allergic reactions to food happen when the body’s immune system incorrectly thinks certain proteins in some foods are harmful. To defend itself, the body releases mediators like histamine, leukotrienes and cytokines that can cause an allergic reaction.
Allergic reactions can range in severity from itchy skin to anaphylaxis, which is potentially life-threatening. Individuals may also experience digestive problems such as diarrhea, vomiting or cramps; swelling of the face, lips or throat; skin problems including hives or eczema; or breathing problems, such as wheezing or coughing. Symptoms can occur immediately, or they may be delayed.
Epinephrine, which works by relaxing airway muscles and tightening blood vessels, can be life-saving in the event of a severe allergic reaction. Physicians recommend that individuals with a food allergy carry two epinephrine auto-injectors. The devices should be replaced each year, which can be extremely costly. A package of two brand name EpiPen auto-injectors costs about $700. However, Illinois became the first state to require health insurance companies to cover epinephrine auto-injectors (starting January 1, 2020) for anyone 18 and younger.
Diagnosing food allergies
Unfortunately, many parents find out the hard way — from severe allergic reactions — that their child has a food allergy. Here are some tips to help diagnose and treat food allergies.
1. Understand how allergy testing works (and doesn’t work)
Allergy testing isn’t always reliable, as it’s possible to get false negative as well as false positive results.
Most allergists recommend either a blood test to check for allergic antibodies and/or a skin prick test in which a child’s back is pricked with multiple needles to test various allergens. Both tests look for a reaction involving immunoglobulin E (IgE), a type of antibody activated during an immediate-type allergic reaction like hives or anaphylaxis.
But there’s not a perfect test. “Neither the skin test nor the blood test is perfect at confirming a possible history of an allergic reaction,” says Paul Detjen, MD, an allergist-immunologist at Kenilworth Medical Associates.
2. Check your GI tract
Food sensitivities or intolerances can affect the gastrointestinal (GI) system and can’t be diagnosed using an IgE antibody test, says Florence DiMarco, MPH, RD, a nutrition support clinician in Naperville.
These reactions can happen anywhere in the GI tract, which includes the esophagus, intestines and stomach. Food allergy reactions in the gut lining may be due to eosinophilicesophagitis (EoE) — a chronic, allergic immune condition that causes inflammation in the esophagus.
Some young children experience a delayed food allergy reaction that affects the GI system called food protein-induced enterocolitis syndrome (FPIES), which can cause severe vomiting, diarrhea and dehydration. Milk, soy and grains can trigger this non-IgE-mediated food allergy, according to the American College of Allergy, Asthma and Immunology (ACAAI).
Celiac disease — an immunologic reaction to gluten, the protein found in wheat, rye and barley — is a gastrointestinal condition and not a food allergy. A tTG antibody blood test is usually used to screen for celiac disease.
3. Consider an oral food challenge
When allergy tests are inconclusive, allergists consider an oral food challenge as the gold standard. Under a physician’s supervision, a child consumes one allergen in tiny and then increasing doses to see if they have a reaction. The test is usually administered over several hours and stopped if there’s a reaction.
Hultquist’s daughter tested negative for some food allergies using skin and blood tests. But when she had an oral food challenge, she reacted to those foods and so completely avoids them.
“No test is 100% foolproof,” Hultquist says. “Regardless of what the test shows, if there’s a reaction when you actually have the food, that would trump everything, any test.”
4. Try a food elimination diet
If a family is having trouble determining which foods are problematic, they might consider a food elimination diet. This involves removing all foods suspected of causing allergies or intolerances from the child’s diet. Then one new food group is reintroduced every seven to 10 days to see if the child reacts.
5. Consider oral immunotherapy
Oral immunotherapy (OIT) is still experimental, but some doctors, such as Detjen, are advocates of a private practice version of this treatment, in which allergenic foods are incrementally given to an allergic patient to increase tolerance by desensitizing the body. Oral immunotherapy for peanut, egg and milk has been shown to desensitize 60% to 80% of patients in some trials, according to the ACAAI, but long-term tolerance is not known.
With peanut allergy, once a patient can tolerate three or four peanuts through private practice oral immunotherapy, Detjen says, they are usually fully protected against allergic reactions that can come from accidental cross-contamination.
Ultimately, the goal is to work a patient up to become fully desensitized. That means being able to eat 24 peanuts, the estimated amount in a peanut butter and jelly sandwich, Detjen says. The patients would then be able to safely eat any amount of peanuts, as long as they eat a daily minimum of eight peanuts to maintain desensitization.
Palforzia, a drug that was recently recommended by an FDA advisory committee for approval, is a version of OIT that uses a capsule with powdered peanut flour equivalent to one peanut. Patients would take the drug in an attempt to tolerate accidental cross-contamination, though it would not cure patients of peanut allergies.
Detjen cautions that the drug is equivalent to only one peanut and would not be enough for full desensitization. Also, he says, the majority of patients in the drug trials still had mild or moderate reactions to a two or three peanut oral challenge.
“If this drug gets approved, it will be expensive and it won’t fully protect patients from accidental cross-contamination of peanut,” Detjen warns.
6. Find a doctor who will listen and work with you
If parents suspect their child has a food allergy, the child needs to be evaluated by their physician and see an allergist, Gupta says. An allergist can help with a management plan and teach families how to identify an allergic reaction and how and when to administer epinephrine, she says.
It’s important to have a doctor who you feel comfortable with and who supports you and listens to you as a parent. Sometimes that means seeing several allergists to find a good fit, Hultquist says.
7. Connect with others
Support is key for managing any problem. Look for other parents who are also managing food allergies.
Learn tips, find recipes and connect with other parents at the Kids With Food Allergies website. Check out Spokin, which has user reviews of products, restaurants and allergists, and RAISE, a website that focuses on food allergies and intolerances. The Illinois Food Allergy Education Association also offers advice.