Food Allergy or Food Intolerance? January 14, 2019

 

Following an illuminating study conducted by Ruchi S. Gupta and her colleagues Christopher M. Warren, et al, it is clear that most Americans don’t understand the difference between a food allergy and a food intolerance.  The study found that in the U.S.  20% of adults claim to have a food allergy, but when evaluated by a medical doctor only 10% have symptoms consistent with a true allergy.

 

What is a food allergy? What makes it unique?

Food allergies are an immune system response to food.  When the body mistakes a food as harmful, it produces a defense system (in the form of antibodies) to fight against it.  These antibodies in the immune system – called immunoglobulin E (IgE), found in the lungs, skin and mucous membranes – release a chemical that sets off a chain reaction of the vascular, respiratory, and cardiac systems.

 

Food allergic reactions can vary from hives, swelling of the mouth, lips and face, and vomiting to respiratory issues (such as wheezing), drop in blood pressure, fainting, and cardiac arrest.  Anaphylaxis is a very serious and potentially fatal condition that is characterized by a sudden drop in blood pressure, loss of consciousness and body system failure.  Epinephrine (administered by an auto-injector) is the only medication that can slow or stop anaphylaxis.

The most common foods that cause a food allergic reaction are:  peanuts, tree nuts (such as walnuts, pistachios, pecans, etc), dairy, eggs, wheat, soy, fin fish (salmon, tuna, etc), and shellfish.  But almost any food can cause an allergic reaction.

 

 

What is a food intolerance?  How does it differ from a food allergy?

Food intolerances also make people feel discomfort.  However, this discomfort is not life-threatening.  Food intolerances are a digestive response that occur when food irritates the digestive system or makes it difficult for a person to break down the food.

 

Symptoms of a food intolerance can include bloating, gas, nausea, stomach discomfort/pain, vomiting, diarrhea, heartburn, headaches, and irritability.  Dairy, or lactose intolerance, is the most common trigger.

 

What are some other differences?

 

Food allergic reactions can occur with even the smallest amount of food ingested.  In addition to the range of major symptoms when ingested, it can also cause a skin reaction just upon contact.  A food allergy is a reaction to the protein contained in a food (such as gluten with a wheat allergy).

 

With food intolerances, amount of food consumed matters.   The more food consumed, the worse the digestive reaction.  Food intolerances occur because the body cannot break down the sugar in a given food (like lactose in milk).

 

Food allergies are diagnosed in several ways.  The golden standard is an oral food challenge – where a patient eats their suspected allergen under medical supervision to note the reaction.  Patients may take an IgE blood test or be asked to take a skin prick test to diagnose and monitor food allergy.

 

When a food intolerance is suspected, patients are often asked to keep a food journal or diary in which they note the foods they ate as well as the symptoms they experience.  Patients may also be asked to eliminate a particular food from their diet and note symptoms for a period of time.

 

In both cases, a doctor will help give an official diagnosis and guide the patient through any changes that need to be made to their lifestyle.   Those with food allergies will also discuss issues like cross-contamination, emergency action plans, and epinephrine.  Those with food intolerances may talk about medications that can help to ease symptoms. Avoidance of problem foods will be suggested for food allergies as well as food intolerances.

 

Knowing the difference between a life-threatening food allergy and an uncomfortable food intolerance will help keep you safe, make appropriate lifestyle changes and get you the relief you need sooner.  

 

 

We Need YOU! Call to Action for Sesame Labeling December 20, 2018

 

Photo by Pixabay on Pexels.com

Living with a sesame seed allergy (and any allergy outside of the Top 8) is challenging.  To get a sense of it, read Sesame: The 9th Food Allergen? originally published in Allergy & Asthma Today magazine.

 

With claims that sesame-derived products are healthier and our taste for international cuisine is on the rise, it’s no surprise that the prevalence of sesame allergies is increasing. And, like the peanut, allergic reactions to sesame can be severe.  The allergy is misunderstood by others who often incorrectly assume that if you can’t see sesame seeds on top of a food, that they aren’t inside either.  Sesame labeling is also a large part of the problem.  Sesame can be labeled in a number of challenging ways.  In addition to the long list of alternative names, sesame can be listed as “seasoning,” “spices,” or “natural flavoring.”  This makes it nearly impossible to know whether a product actually contains this allergen or not without calling manufacturers.  Additionally, manufacturers are not required to disclose the presence of sesame often citing proprietary reasons.

 

The FDA is finally considering a request to add sesame to the Food Allergen Labeling and Consumer Protection Act (FALCPA) requiring manufacturers to label for sesame as they currently do for the Top 8 allergens (peanut, milk, egg, tree nuts, wheat, fish, shellfish, and soy).   All of the national food allergy non-profits are weighing in to give supporting documentation and research, but the FDA needs to hear from you!

Please take a minute to report your experience and challenges to the FDA using this form below:

FDA Regulations – Sesame as Allergen in Foods

 

It only takes a minute or two, so please submit your comments today!  The FDA is welcoming comments only through Dec. 30, 2018.

 

**If you have emails from manufacturers or photos of labels where sesame is hidden under an alternative name or not listed at all, please submit these as attachments as they will be powerful examples of what consumers are facing.**

 

Keeping our fingers crossed…  Thank you for your support!

 

FDA Issues New EpiPen Warning – November 2018 November 19, 2018

Before you head out of town for Thanksgiving, please be sure to check your EpiPens!

 

A new advisory issued by the FDA warns that some EpiPen Auto-Injectors may not slide of out the plastic carriers case easily.  The labels attached to some of the EpiPen 0.3mg and 0.15mg auto-injectors as well as the authorized generic versions of the same strengths may prevent the devices from easily slipping out of the protective carriers, making access to the auto-injectors difficult or impossible.

 

In a letter of explanation, Pfizer (the makers of Mylan’s EpiPens) notes that the labels may have been improperly applied during manufacturing.  In an emergency, this may make it hard for patients to get their auto-injectors out of the carrier tube, delaying administration of epinephrine.

 

*It is important to note that neither the medication (epinephrine) nor the auto-injector itself is affected by this warning.  Both the medication and the auto-injector will work properly once removed from the protective carrier case.*

 

If a patient has a device that does not slide out easily from the tube or a label that is not affixed properly, please contact Mylan Customer Relations at 800-796-9526.

 

For more information, please read the joint statement from Mylan and Pfizer here.

Carrying Epinephrine: Stunning Stats and Easy Solutions October 16, 2018

We all know that the best treatment for anaphylaxis, a severe life-threatening allergic reaction, is an immediate dose of epinephrine.  So, why then do patients not carry it?

 

Some patients do not have access to epinephrine.  Although the drug epinephrine itself is not expensive, the devices used to administer it can be very costly.  Sometimes prohibitively so.  Many are working to reduce the price families must pay at the pharmacy.  The makers of Auvi-Q, for example, are offering their product for free to those with commercial insurance (including those with high deductibles and for whom it is not covered) in an effort to get epinephrine in the hands of patients who need it [read more here].  A generic EpiPen has just been approved by the FDA to be introduced in the coming year.

 

Teens are a group known for their non-compliance in carrying epinephrine.  Teenagers, wired to take risks and extra concerned about fitting in with peers, are often found without epinephrine when they critically need it.  In an effort to be like everyone else,  they some times purposely leave their auto-injectors when socializing with friends.  Adolescents will also mentally minimize the perils of leaving their auto-injectors at home and/or not reading ingredient labels while basking in the potential benefits of acting and operating like their friends and not drawing attention to themselves – a dangerous combination.

 

An Alarming Study

 

Dr. Dave Stukus and his colleagues from Nationwide Children’s Hospital conducted a study  four years ago of patients and their caregivers being seen by an allergist at their clinic.  Among their patients at high risk, only 40% carried auto-injectors even though 60% knew that epinephrine should be carried with them at all times.  Nearly 50% of patients carried expired devices and of the 60% diagnosed with asthma (which could make an anaphylactic reaction even more serious) only 38% carried had epinephrine with them at their clinic visit.

 

But Adults Surely Know Better…

 

Nope.

 

Adults with food allergies fared no better.  A survey was conducted earlier this year (March – June 2018) of 597 people representing themselves and their children (a total of 917 patients).   While the majority of those questioned filled their prescriptions for epinephrine, almost half (45%) didn’t have their auto-injectors with them at the time of their most severe reaction.  Shockingly, 21% didn’t know how to use their epinephrine auto-injectors (EAIs).

 

#AlwaysCarryTwo

 

In the same 2018 study, fewer than 25% of patients or caregivers routinely carried multiple auto-injectors despite the advice that all patients carry at least two self-administering epinephrine auto-injectors.  Carrying two EAIs is critical in case one fails or a second dose is needed before emergency services arrives.

 

To Sum It Up

 

According to Dr. Stukus, there are several reasons for not carrying epinephrine:

• inconvenience
• cost
• forgetfulness
• complacency if a long time has passed between reactions
• expiration of previous EAIs
• lack of understanding that patients should carry two EAIs at all times

and, I would add

• denial of severity of conditions and the reality of a reaction

 

Solutions

 

First, all patients need access to epinephrine.  Financial assistance is available!  If you need help affording an auto-injector, please consider savings programs offered by the various pharmaceutical companies.  The non-profit Kids with Food Allergies has an excellent article to help make EAIs more affordable,  What to Do if You Can’t Afford Epinephrine Auto Injectors.

 

Second, education about the difficulties and dangers of managing a severe allergic reaction without epinephrine is needed.  This begins in the doctor’s office.  Physicians should ask about how and how often patients carry their auto-injectors and discuss best practices to make carrying two EAIs a habit.  In between visits, patients can learn how to properly use an epinephrine auto-injector and why there’s no need to be afraid of using it.

 

Smart placement of epinephrine will help you remember to take it with you.  It is important to note that you cannot store auto-injectors in your car (temperature fluctuations can affect whether the device will fire properly and how well the medication will work once injected).  Instead, consider leaving it on a hook by the door you exit out of, next to your phone or keys, or set a reminder on your phone to alert you 10 minutes before you’re due to leave the house.

 

There are always many ways to carry epinephrine.  A purse makes it easy.  But a drawstring cinch bag, gym bag or a backpack will work for men.  Some auto-injectors fit right into a pant pocket!  There are specialty products that help you carry your auto-injectors in inventive ways, such as running belts, wristlets, arm bands, leg holsters, clip-on bags, etc.

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Lastly, make it a habit.  You know that feeling when you forget your phone?  Or your lunch?  With regular practice, remembering your epinephrine will become second nature.

 

As Dr. Stukus sagely points out, emergencies are never planned.  They are not predicted.  Epinephrine auto-injectors are meant to be kept in arm’s reach.  Carrying your epinephrine is certainly a lot less hassle than going to the emergency room for the night.

Yes, You Can Get a Food Allergy at Any Age October 1, 2018

Food allergies aren’t always something you’re born with.  Many believe that once they reach preschool age without a food allergic reaction, both they and their children are out of the woods.  Not so, says allergists.

 

Unfortunately, food allergies can begin at any age.  In fact, you can get a food allergy to any food at any age.  We can all agree; that’s a bummer!

 

Unfamiliar with symptoms and without epinephrine, many adults discover their allergy through a reaction.   My own father-in-law had enjoyed seafood for decades before having a severe allergic reaction (called anaphylaxis) on an airplane when he was in his forties.  Thirty thousand feet over the Atlantic Ocean, he was served shrimp – something he had eaten many times before.  No sooner had he finished his meal than his symptoms begin: swollen eyes and esophagus, itchy mouth and skin.  Thankfully, he made it to their destination with the help of an overwhelming amount of Benadryl.  But I think we can all agree, that’s no place to discover a food allergy.

It can be confusing to adults (as well as to their families and friends), when someone can tolerate a food one day and react to it the next.  As with all families adjusting to food allergies, there is a huge learning curve that accompanies diagnosis.  Adult food allergy patients need to relearn how to shop, cook, order food and – importantly – they must learn to recognize symptoms of allergic reactions including anaphylaxis.

 

Just as with pediatric food allergies, symptoms range from mild to severe to include:

• Itching or tingling mouth, lips and/or tongue
• Hives, itching skin, eczema
• Swelling of the tongue, throat, lips, eyes, face, or other parts of the body
• Wheezing, nasal congestion or other trouble breathing
• Abdominal pain, diarrhea, vomiting
• Dizziness, lightheadedness, fainting

 

Symptoms of a severe reaction (called anaphylaxis) include:

• Constriction of the throat or tightening of the airway
• A swelling or lump in the throat that makes it feel hard to breath
• Shock, a severe drop in blood pressure
• Rapid pulse
• Sense of impending doom
• Dizziness, lightheadedness, loss of consciousness

*Emergency medical care is needed if experiencing any symptoms of anaphylaxis.  Even after administering an epinephrine auto-injector, seek immediate medical attention.

 

Busy adults sometimes miss symptoms of food allergies.  On occasion, adults experience vomiting without itching, swelling or hives – a symptom which imitates a virus or the flu.  After a suspected reaction, adults should meet with an allergist.  At their first appointment, patients should also discuss their other medical conditions as well as bring a list of prescription medication they take.  Specialists can help decipher between symptoms of one condition and food allergic reactions as well as give advice about any issues with administering epinephrine or taking antihistamines.

 

Too little is known about why adults develop food allergies.  Fifty-one percent of people with food allergies developed at least one as an adult.  Approximately 5% of adults live with food allergies in the United States.  The most common among them is shellfish (present in 54% of adults with food allergies), followed by tree nuts (43%).  But adults suffer reactions to all kinds of food allergens.  Although you can truly get a food allergy at any age, most adult reactions occur between ages 30 and 40 and affect women more often than men.

 

There is an initial emotional burden of being diagnosed with food allergies.  This is common. Food allergies can be especially stressful as patients are adjusting to their condition and retraining their behaviors or overcoming a severe reaction.  Experiencing anxiety is normal to some degree [please read Managing Food Allergy Anxiety]; however, if the stress and anxiety of food allergies becomes overwhelming, it is recommended that patients reach out to a mental health professional and mention it to their allergist.  Both can work to give you practical and easy-to-implement strategies to reduce fears.

 

Including Food Allergic Students at School September 17, 2018

It’s the beginning of the school year!  Now is the perfect time to discuss best practices to keep kids with food allergies included in the classroom and beyond.  What are the best ways to keep a child safe at school?  How is teaching a food allergic child different from one without dietary restrictions?  How can teachers and parents better communicate to ensure a productive year together?

 

One of the most difficult and important places to manage food allergies is at school.  Parents, faculty, staff and administrators want and need to keep food allergic students physically safe during the school day – a place children spend the largest portion of their time outside the home. Inclusion at school is the “safe place” they need to develop psychologically and socially.

 

Where do schools begin and what factors should they consider?  

 

Education:  Not surprisingly, it all begins with EDUCATION.  Faculty and staff should be educated and reeducated about food allergies each year.  They should not only know:

• how to recognize the signs of severe allergic reactions (called anaphylaxis) and what those symptoms might sound like in the words of a young child
• how to react to an allergic reaction; and
• understand the basics of cross-contamination and ingredient label reading;

but they should also learn about the perspective of their food allergic students who experience anxiety and exclusion at higher rates than their peers.

 

I urge all schools to consider adding Food Allergy Education to their Health curriculum.  Students are exposed to the idea of food allergies without understanding exactly what that means. Understanding food allergies is shown to build inclusion and community, stoke empathy and protect peers in students pre-K through high school.  In less than 20 minutes, a teacher can cover a basic lesson plan on food allergies and reap all of the above benefits in his/her classroom for the entire year.

Exclude the FOOD (not the CHILD).

Eating In the Classroom:  Parties, holiday celebrations, and special events should be as inclusive and safe as possible.  I’ve heard from many families across the country whose children have been sent out of the room during class parties because their allergen was being served;  children who are sent to eat with the school nurse instead of their friends; children who are told to stay away from the group who are eating an allergy-laden snack while they watch.  When such a thing occurs, the message that student receives from their teacher is that their classmates’ enjoyment is more important than they are.  At such times, the student will struggle with feeling of self-worth and the [correct] impression that their teacher doesn’t know how to handle food allergies.

 

Eating Outside of Class:  Prepare for field trips by remembering food allergic students.  Snacks and lunches need to be safe.  And, don’t forget to bring emergency medication (and store it with a chaperone AT ROOM TEMPERATURE).  The best way to keep these special learning experiences special is with advanced preparation and by communicating with parents and the students directly to address concerns and implement solutions.

 

Think through the full school day for an allergic student.  How will they fare on the bus ride home?  What is the school’s policy on eating on the bus?  Is it enforced?  Is the bus driver trained and prepared to deal with an allergic reaction?  Is an allergic student allowed to carry their own epinephrine?  How does the driver handle bullying on his/her bus?  Addressing the entire school day from door to door will make a child with food allergies feel protected and looked after.

 

Bullying by Peers or Adults:  Exclusion, name-calling or verbally doubting sets an example for the other students that such behavior is acceptable and results in stigmatizing the food allergic student. Bullying is another serious problem for all students but can have serious and even deadly results for students with food allergies.  Read the statistics here to understand the scope of the problem which is often based at school.

 

Uninformed Teachers:  Students with food allergies are savvy about their condition and quickly note when others aren’t as knowledgable.  Teachers who demonstrate a lack of knowledge do not instill confidence in even the youngest food allergic child.  Students who are concerned about surviving the day in their classroom, cannot learn.  Creating “safe zones” is psychologically beneficial to students with food allergies.  One such example is a peanut-free table or a classroom that bans a certain food for the health and protection of a student’s life. Another method is to establish a special line of communication between the teacher and student so they can express their concerns privately.  I recommend that teachers meet with a food allergic student and their parents to acknowledge that they understand the parameters of that child’s allergy, that they take it seriously, and agree upon the best method of letting parents know about upcoming events so that the family can prepare.

 

Solid and Protected Food Allergy Policies:  Schools must create a safe environment for students with life threatening food allergies. This protection begins with a comprehensive food allergy policy – one that balances safety with an emphasis on maximum inclusion.  The policy and procedures regarding food allergies need to be widely communicated, easily accessible, consistently applied and protected.

[Read: Food Allergy Policies at School (Aug. 14, 2018) – Considerations and Perspectives for more on what goes into a well thought-out policy.]

 

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Inclusion means everything to food allergic students who already feel different from their peers.  Inclusion gives students a supportive platform from which to conquer the world.  Schools need safe places for kids to learn, socialize and play.   They are more than a place to grow academically; schools should be a space for students to blossom psychologically as well.  A lot of thought should go into how to include every child in the classroom – it might make all the difference for your students AND their families.

 

 

FDA Approves First Generic EpiPen September 6, 2018

The U.S. Food and Drug Administration (FDA) has recently approved the first generic EpiPen to be made by Teva Pharmaceuticals.  There are currently several brands of epinephrine auto-injectors available to patients:  Mylan makes EpiPen, EpiPen Jr. and its own brand-sponsored generic; kaléo offers Auvi-Q; and Impax Laboratories markets Adrenaclick.  However, this generic EpiPen by Teva Pharmaceuticals will be the first time a non-brand alternative is available.

Obtaining approval from the FDA for a generic was complicated by the fact that both the medication (epinephrine) as well as the device itself had to be reviewed.  There is no firm estimate on when to expect this new generic on the market or the cost of the product once it gets there.

 

The competition generated by a generic should help the epinephrine auto-injector market. To date, Mylan’s EpiPen has nearly monopolized the market but its exorbitant cost has gained unwanted attention.  Mylan’s EpiPen price has risen over 400% in the last 10 years to over $600 a set.  To counter the negative press, Mylan created their own generic EpiPen which still average $300 per set.  Patients and families are hoping the introduction of a true generic device will drive down the cost of the absolutely necessary, life-saving devices as well as help to prevent epinephrine auto-injector shortages like the one we’re experiencing presently.  They’re also hopeful this generic will help expand options covered by their insurance plans.  Doctors, emergency workers and advocates are also optimistic that this may help get epinephrine in the hands of patients who may otherwise be unable to afford it.