Allergy Shmallergy

Simplifying life for families with food allergies.

Effects of Heat and Cold on Epinephrine Auto-Injectors June 24, 2019

It’s that time of year again!  Camp, beach time, days at the pool…    Does weather change how you carry your epinephrine?  It should.

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Available in auto-injectors, epinephrine is the only medicine available that will slow or stop the life-threatening symptoms of a severe allergic reaction, called anaphylaxis.  Because no one plans for an emergency and allergic reactions can be both variable and unpredictable, patients must carry two epinephrine auto-injectors  (EAIs) with them at all times.  Yes, even to the pool.

 

The Ideal Temperature

Epinephrine is temperature sensitive, making it a tricky accessory to carry in the summer and winter months.  To remain 100 percent effective, epinephrine must stay at room temperature (68-77 degrees Fahrenheit or 20-25 degrees Celsius). Short trips between 59 and 86 degrees Fahrenheit won’t harm the product, according to researchers.

 

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Effects of Heat

Research has shown that prolonged exposure to heat can degrade the strength of epinephrine.  And, constant heat resulted in bigger change in epinephrine.

 

 

Confusion

Although short-term exposures outside room temperature conditions are safe – researchers and doctors don’t often define what “short-term” means.  A few studies looked at “real world” temperature fluctuations, mentioning that little or no significant change in epinephrine was observed under these circumstances.  But, what constitutes “real world” and how many degrees outside of the ideal window (68-77 degrees Fahrenheit) is too high?

 

It IS, however, worth noting that keeping an EAI in the car is not a good idea as it often puts the auto-injector FAR outside that ideal room temperature and affects the quality and effectiveness of the epinephrine.  Temperatures inside parked cars even on a mild can soar well beyond 100 degrees in just a few minutes (read more here).  

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Effects of Cold

Recent studies have shown that epinephrine doesn’t appear to degrade if accidentally frozen.  However, if the medicine is kept below freezing, the epinephrine can freeze despite the fact that the auto-injector may still fire – making it useless in an emergency.

 

To Each Injector His Own

Each epinephrine auto-injector is constructed slightly differently.  Extreme heat or cold may not only affect the epinephrine – it might interfere with the mechanism that delivers this life-saving medicine.

 

Watch the effects of extreme heat and cold on EpiPens: please see Allergy Superheroes post, Epinephrine Abuse Experiments – it is very enlightening.

 

Discoloration

Many who carry EAIs point to the color of their epinephrine (shown in a little window on EpiPen brand EAIs) as a way to judge if it’s still potent or viable.  According to manufacturers and pharmaceutical companies, this method isn’t a sure bet.  If your epinephrine is discolored or cloudy, then it is no longer good.  However, if it appears clear, this does not necessarily mean it hasn’t degraded or otherwise expired.

Words to Carry By?

Don’t judge an auto-injector by it’s [lack of] color.  The best way to ensure your epinephrine auto-injector will work properly and at full strength is to keep it as close to room temperature as you can and within its expiration date if possible.

 

Do your best and get out there and enjoy the weather whatever it is!

 

 

 

Join the Food Allergy Fighters – Race for Every Child June 3, 2019

 

**Registration is FREE until Wednesday, June 5th!**

 

Come join us!  All are welcome to join the team, The Food Allergy Fighters, for this year’s Race for Every Child.  The Race for Every Child 5K will be held on October 19, 2019 beginning at Freedom Plaza in Washington, D.C.  You can participate in person or virtually, as a walker or a runner, individually or with the whole family.  Children ages 3 to 10 can also participate in the 100 yard Kids’ Dash.

 

When you support the Food Allergy Fighters, you are making a difference for all food allergy patients – here and around the world. Our team will specifically raise funds to advance food allergy research.

 

Children’s National Medical Center in Washington, D.C. is on the forefront of both clinical medical as well as psychological research as it pertains to food allergies.  They run an exemplary program that is always evolving for the better.

 

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Every dollar raised through the Race for Every Child enables Children’s National to advance pediatric health and provide world-class care to every child, regardless of illness, injury or ability to pay.

 

Please join us – register here!

 

Once you register, please create a profile and share with friends and family – all are welcome!

 

Thank you for your participation and we look forward to seeing you at this meaningful, family-friendly event this fall!

 

 

 

 

 

 

Food Allergy Advocacy – A Day on Capitol Hill May 16, 2019

When you live with a chronic disease like food allergies and asthma, you need support – the support of family and friends, but also support from the outside world.  Fifty-eight million people suffer from either asthma or food allergies.  Every year, 3,600 people die from asthma.  And, every 3 minutes someone is rushed to the hospital suffering from a severe food allergy reaction.  They are both serious and life-threatening conditions.

 

There are so many issues that need our collective attention – including legislative ones that support and protect patients with food allergies, asthma and other atopic diseases. We expect and are entitled to equal access to healthcare, research funding and education among other things.

When given the opportunity to join the Allergy & Asthma Network and contribute to the effort to better the lives of all food allergy and asthma patients, I jumped.  Over the course of one day, we visited fifty percent of all Senators and nearly 100 member of the House of Representatives.  We heard from doctors and nurses, families who have struggled within the existing healthcare system and those who have lost loved ones prematurely, and we were inspired by others striving to make lasting change.

Among the issues that need our attention are:

  • Access to quality, affordable healthcare
  • Access to affordable prescription medication and treatment
  • Continued and increased funding for federal health and research funding
  • Accurate and up-to-date food labeling

These issues translated into support for the following pending legislation that pertain to food allergy:

H.R. 1243/S. 523: Climate Change Health Protection and Promotion Act of 2019

Directs HHS to develop a national strategic action plan to help health professionals prepare for and respond to the public health effects of climate change.

My take:  Researchers are considering whether the way in which we produce and process our food has contributed to the rise in food allergies.  The nutrients that nourish our good bacteria in our microbiome has changed over the last 100 years.  Climate change has and will undoubtedly change the way we grow our food and the way in which our bodies respond to these changes.  

 

H.R. 2117:  Food Allergy Safety, Treatment, Education and Research (FASTER) Act

Requires that sesame be added to the current list of allergens that manufacturers are required to label for.  The bill would also provide the CDC funding to conduct data on allergy prevalence.

My take:  Sesame is the 9th most common allergen (and one of the fastest growing allergies in terms of prevalence) and it’s a particularly difficult one to avoid.  Ground into flour and paste, used as oil in beauty products, in addition to whole seeds, current labeling guidelines allow for sesame to be hidden in ingredient lists under general terminology like “spices,” “natural flavors,” and “seasoning.”  Customers want transparency in their food and beauty products.  And, labeling for sesame would bring the US closer to the [more thorough and higher] standards set in the UK, EU, Canada and Australia.

For more information on sesame seed allergies, please see Sesame: The 9th Food Allergen?

 

H.R. 2468  School-Based Allergies and Asthma Management Program Act

Increases grant preference to states that implement school-based asthma and allergy management programs (including student action plans and emergency medication administration education/training for staff).

My take:  Schools are concerned with how to handle the increasing number of students with food allergies.  And they should be.  Studies show that 30 percent of stock epinephrine use was for students and staff with no known history of allergies.  But schools lack the funds to improve and increase training on the emergency medication [epinephrine] that will ensure administration when it’s so critically needed.  Immediate administration of epinephrine is associated with more favorable outcomes during anaphylaxis.  Familiarity with the signs and symptoms of a severe reaction leads to accurate, faster treatment, better protection for students and reduces school liability.

 

Not in D.C.?  How you can advocate from where you are:

  1. Call your state’s representatives and encourage them to support these and other legislation that protects patients.
  2. Start local!  There are towns, cities and counties across the country that are doing things right.  For example, there are a few places where police and bus drivers are trained to carry and administer epinephrine.  Is your town one of them?
  3. Work with your state senators and local representatives to allow stock epinephrine to be placed in public venues.
    • In Connecticut, Representative Robin Comey is trying to pass legislation that does just that through Senate Bill 706. If you live in CT, contact your legislators and ask them to support 706 to give entities access to stock epinephrine and the ability to protect those experience life-threatening reactions.
    • In New York City, Elijah’s law (NY S218A) proposes to mandate training  and establish emergency procedures for early child care centers and preschools in New York City.

 

It is an honor and a privilege to help improve rights for patient and families like ours and to play a part in our government at work.  By representing all our voices, it was clear we illustrated what is important to constituents and elevated these important issues for our representatives.

 

Find your own way to keep the momentum going!

 

 

Highlights from the Inaugural Food Allergy Fund Summit – April 2019 May 7, 2019

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If you couldn’t attend the Food Allergy Fund’s inaugural summit last week, you’re in luck because I took copious notes!  In addition to the highlights below, the Food Allegy Fund posted my official summary over on their site.

 

So many areas of food allergy converged at the Paley Center in New York City on April 4th:  research, immunology, pediatrics, psychology, product innovation, advocacy, professional chefs and restauranteurs.  And each attendee arrived with their own lens through which they view food allergies.  Needless to say, interesting people provoke interesting conversations.  I nearly filled a notebook with all the information I gleaned that day, but here are some of the stand-out highlights:

 

Dr. Patrick Brennan, recipient of FAF’s first $100,000 Innovator’s Research Grant, kicked the summit off by stating optimistically and quite matter-of-factly, “Food allergy is a solvable problem” and later continued to encourage patients about the future of food allergy research by declaring, “Innovation really comes through philanthropy.”

 

Next, Linda Herbert took the stage. As the Director of Psychosocial Program for the Department of Allergy and Immunology at Children’s National Medical Center, I could listen to her talk all day.  Of the many, many fascinating things she said, here are two big ideas to think about:

  • Human nature dictates that we crave predictability and human connection. Food allergies get in the way of both of those innate desires.
  • With immunotherapy on the rise, it is expected that families will be more anxious and will need the help of mental health professionals even more frequently.

FAFSummit 2 Innovators Pitch

 

Susie Hultquist, CEO and Founder of the app Spokin, likened the current status of food allergy innovation to renting VHS tapes.  Of where innovation stands, she says, “We’re in the Blockbuster age.  We need to take this in the Netflix era.”

FAFSummit Parent Advocates

An emotionally charged panel of parents turned advocates dominated the stage, moderated with both kindness and generosity by CNN’s Chris Cillizza, a fellow food allergy parent.

  • Lianne Mandelbaum of No Nut Traveler talked about airlines and their policies towards food allergies:  “They are consistently inconsistent”.  
  • Clearly, we need practical procedures that can be consistently enforced across entire fleets and around the world.  For example, of carrying epinephrine auto-injectors on airplanes, Lianne stated, “We have the tools and we need to be able to use them.”
  • Georgina Cipriano of Love for Giovanni Foundation reminded the audience, “Please stress that epinephrine is safe.  Please stress that it only hurts you when you DON’T use it.”

 

The amazing Dr. Ruchi Gupta hit the stage to talk about the lens-changing research she and her team have accomplished and what they are working on next.  Importantly, if you have ideas for school and community-based food allergy research – let her know.

 

Dr Hugh Sampson, COO of DBV Technologies and Director Emeritus of the Jaffe Center at Mt. Sinai described the development of a new diagnostic tool to test not only for the presence of food allergy but for the possibility of reactivity as well as response to immunotherapy.  In other words – it could show how someone’s immune system sees each food and create a unique “fingerprint” for food allergic response.

FAFSummit 3 Chefs

Celebrity chefs and restauranteurs Elizabeth Falkner, Amanda Freitag and Ming Tsai took the stage with so much experience and a lot of humor.  Ming Tsai is a food allergy parent and pioneer; Amanda Freitag, allergic to hazelnuts, understands food allergies firsthand; and Elizabeth Falkner is a longtime food allergy advocate.  The chefs agreed that having a system in place to handle food allergies in a restaurants kitchen is critical.  “Five or six food allergy requests can shut down a line if you don’t have a system,” according to Ming Tsai.  Amanda Freitag spoke about her own family’s experience dining out with food allergies.  Like many families, she and her family are loyal customers of certain establishments. “We frequent these restaurants because they take care of us.”  And with refreshing perspective, Elizabeth Falkner stated that she welcomes food allergy requests in her kitchen, “As a chef, I like challenges! I view it as a creative exercise.” Don’t we wish every chef was more like her!

 

The Food Allergy Summit had something for everyone.  Thank you to the Food Allergy Fund and a special thank you to all the presenters and panelists for a very stimulating day.  For a full summary of the inaugural Food Allergy Fund summit, please read here.

 

The Impact of Adult On-Set Food Allergies March 25, 2019

People often think of food allergies as a childhood disease, where 1 in every 13 kids have a food allergy.  And, much attention DOES need to be paid to the developmental years to keep young food allergies patients safe.

 

But recently, Dr. Ruchi Gupta and her research team reported that 1 in 10 adults have a food allergy in the United States – that’s 26 million adults.  This more than doubles previous estimates putting the total number of patients with food allergies over 32 million people in the US.

 

Beyond the fascinating information presented in her study.  This has tremendous implications outside of the medical field.  This number changes the discussion in a variety of industries who should now be taking food allergies into account in a way they may not have before.

 

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To put it in all in context, food allergies affect:

  • 1,500 passengers that fly Delta daily
  • 260,000 passengers that the FAA serves daily in and out of U.S. airports
  • 520,000 visitors to Disney World annually
  • 15,000,000 guests at Hilton Hotels annually
  • 10,000,000 diners at fast food establishments annually
  • Almost 2,900 ticket holders at each and every Major League Baseball game
  • 72,000 fans annually at AT&T Stadium watching the Dallas Cowboys play
  • 400,000 teachers in primary and secondary schools
  • Nearly 95,000 people working as chefs, cooks and other food preparation employees

 

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But, these numbers aren’t exactly representative of all those who are affected by food allergies.  Parents, siblings, co-workers and friends all make decisions based on their companion with food allergies.  And, when handled well, those experiences flying, visiting amusement parks, staying at hotels, eating in restaurants, attending events, etc, leave a lasting impression that breeds customer loyalty.  Companies need to carefully consider food allergies and implement best practices to gain and retain this kind of loyalty.  If 32 million Americans suffer from food allergies directly, it may be safe to assume that as many as 120 million Americans are affected by them indirectly by enjoying time with allergic friends, family and co-workers.

 

Mistakes with food allergy do not only lead to uncomfortableness (such as hives), as many who do not have food allergies sometimes believe.  They can lead to serious emergencies as reactions vary from simple hives to fainting, throat closing, respiratory distress and cardiac issues and need to be taken very seriously in order to be managed properly.  This requires education across the board and thoughtful policies that offer patients a safe experience.

 

What can companies do to offer safe options to those with food allergies?  Where can they be more transparent?  What can they do educate their employees?  How will they prepare for a food allergic emergency?

 

It will be interesting to see which companies embrace these statistics and what they do to do be sensitive to this epidemic.

 

 

 

 

The Right Diagnosis for Food Allergies: IgE vs IgG Tests March 8, 2019

When you suspect that you or a loved one has a food allergy, you’ll want to get an official diagnosis.  More and more, patients are seeing offerings and advertisements for IgG test kits that claim to identify food allergies and sensitivities.  But what are they?  And, is that the correct test for diagnosing a food allergy?

 

What is an IgG test?

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IgG tests  – known as food sensitivity tests – measure your immune-antibody response to foods.  Specifically, it measures something in your immune system called immunoglobulin G – the body’s most abundant antibody that protects against bacterial and viral infections. These kits require a blood sample (sometimes through a fingertip) that gets mailed back to a laboratory to evaluate.  Kits test against around 100 food products and food additives, sending you back results and recommendations.

 

How does IgG fit in with food allergies?

It doesn’t.

 

According to Dr. Dave Stukus of Nationwide Children’s Hospital, IgG cells are more of a memory antibody – they don’t predict food allergy or food intolerance.  Instead, IgG cells are a response of the immune system after the body has been exposed to a food.  It’s no wonder some people get results many items long – it indicates they have a varied diet, but does not suggest food allergy nor food intolerance.

 

According to the American Academy for Allergy, Asthma and Immunology (AAAAI):  “IgG and IgG subclass antibody tests for food allergy do not have clinical relevance, are not validated, lack sufficient quality control, and should not be performed.”  

 

The European Academy of Allergy and Clinical Immunology says the presence of IgG4 antibodies “should not be considered as a factor which induces hypersensitivity, but rather as an indicator for immunological tolerance… In conclusion, food-specific IgG4 does not indicate (imminent) food allergy or intolerance, but rather a physiological response of the immune system after exposition to food components. Therefore, testing of IgG4 to foods is considered as irrelevant for the laboratory work-up of food allergy or intolerance and should not be performed in case of food-related complaints.

 

In other words, they don’t recommend it as a diagnostic tool for food allergy or intolerance because it may result in unnecessarily avoiding healthy foods and cause undue stress and anxiety.

 

What is an IgE test and how does it differ from IgG?

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Not to be confused with IgG tests, IgE tests are associated with food allergy and allergic responses.  An IgE test measures immunoglobulin E, the antibody responsible for initiating and perpetuating an allergic reaction.  It is measured through a blood test and the results are given as a number to indicate your likelihood of being allergic.

 

Are there other diagnostic tests?

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Yes.  Skin prick test are also often used.  The skin is lightly irritated with a liquid form of various allergens.  If allergic, the skin will develop a hive at each allergic location.  The size of that hive will remeasured and recorded.

 

The gold standard of testing for food allergy remains the oral food challenge.  Under medical supervision, a patient is given small, then increasingly bigger amounts of an allergen, and monitored for signs of reaction. If they show no signs, it means their body tolerates that food and they are usually not considered allergic.  If they react, it means their body does not tolerate the food, they are considered allergic and that food should be avoided.    [To learn more about Oral Challenges, read What is an Oral Food Challenge and How to Prepare]

 

 

If you suspect you or someone you know has a food allergy, be sure to talk to a doctor and get the right test so that you can make healthy decisions about how to stay safe and feel great.

 

 

Food Allergy Family in Need January 31, 2019

A FAMILY NEEDS OUR ASSISTANCE!

 

Please review the Amazon Wish List (below) to help.

 

Many at-risk and food insecure families across the country (and around the world) struggle with the cost of allergy-friendly food. Families in crisis – that are already struggling with major obstacles – are forced to make difficult decisions about how to feed and care for their food allergic children. They are sometimes forced to decide between feeding a child safely or at all.

 

To face this terrible situation breaks my heart.

 

I’m consulting with a case worker who has a family struggling with these very issues.  Their child has multiple food allergies and they are struggling to afford the free-from food they require.  They are in crisis.  Let’s make things easier for them.  We can help this family feed their young child as they weather this difficult transition. Please visit AllergyStrong or Allergy Shmallergy‘s Facebook page for more information.

 

AllergyStrong Amazon Wish List

 

Thank you in advance!

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