It’s now common for schools to make food allergy accommodations to protect at-risk kids, while colleges in the United States are also moving in that direction (following a key ADA decision), and summer camps are starting to go allergy- and even gluten-friendly.

As one who gets feedback daily from Allergic Living readers, I hear more and more stories of inclusiveness and educators who “get it” when it comes to food allergies. This definitely is big progress compared to years gone by.

However, I must confess to feeling more concerned and reflective than usual this 2013 Awareness Week (May 12-18). If you’re reading this, you likely know why. We’ve lost four young people this spring to the swift and over-powering allergic reaction that is anaphylaxis.

Most recently, 11-year-old Tanner Henstra succumbed to a severe reaction on April 19 following a food accident in which he bit into a pretzel at a friend’s house that turned out to be filled with peanut butter. Eight-year-old Adrian Gutierrez, died two weeks earlier, having mistakenly sipped from his brother’s hot chocolate at a Starbuck’s shop. The boy with the wide grin and luminous brown eyes had been allergic to both dairy and peanuts.

Spring Break in March saw two tragedies: 12-year-old Maia Santarelli-Gallo passed away following symptoms suspected to be anaphylaxis – the incident occurred after she’d eaten an ice cream cone. The girl’s family had only ever been told she was dairy and egg intolerant. There was no epinephrine auto-injector; they had no idea she needed one.

Cameron Groezinger-Fitzpatrick’s mother said he had just arrived home from university for Spring Break in early March when he ate a cookie a friend offered. It was supposed to be peanut-free but turned out to contain peanut butter. Again, he didn’t get epinephrine, and succumbed quickly to the reaction.

This Sunday was Mother’s Day, and that’s four mothers – from Utah, New Jersey, Massachusetts and Ontario, Canada – who spent a sad day, mourning children who passed away long before their time.

Anaphylaxis is a scourge, but to fight it, we need better education among the general public, educators, airlines, restaurants – and even among those who live with food allergy and its risks every day. There are lessons from these deaths that go beyond the basic shock of tragedy.

Consider that the two younger boys both got epinephrine, but they got it late. The other two did not receive the life-saving shot at all. If there’s one thing we can all strive to do this Awareness Week, it’s to get the message out that: in anaphylaxis, seconds count and epinephrine – not antihistamines, not an asthma puffer – is the first-line medication and the allergic person’s lifesaver. Use it.

Epinephrine is considered an extremely safe drug, but in anaphylaxis, it works best when given promptly. The guidelines issued by the National Institute of Allergy and Infectious Diseases are very clear on this point: “If you are experiencing anaphylaxis, or even suspect that you are, immediately take epinephrine and seek immediate medical attention by calling 9-1-1. Delaying epinephrine use places you at significantly increased risk for a life-threatening reaction.”

Tanner Henstra’s mother Stacie learned these facts the worst way possible. Even as a nurse by profession, she told the local Utah newspaper, “I was shocked at the severity of his reaction. It was just so fast.”

Adri Gutierrez’s family’s has set up a Facebook page to keep the young man’s spirit and memory alive. His aunt is direct in a recent post to the food allergy community: “He didn’t get a life-saving epinephrine shot until it was too late…. Complacency and unpreparedness killed Adri. Don’t let this happen to your loved one.”

Time and time again at this magazine, we hear of a parent or a teacher or a caregiver who wanted to “wait and see if a reaction gets worse” before administering the auto-injector. This Awareness Week, let’s spread the word: Waiting is a bad idea. If you’re seeing the symptoms of anaphylaxis, give the epinephrine, and give it now.

To help with the education process, Allergic Living has created a new poster – Six That Save Lives. I encourage you to print it and share it with the school, the doctor’s office, anyone you think will benefit from it.

Let’s do our best to make the rest of 2013 a safe and inclusiveness time for all the kids and all the grown-ups who live with food allergies. If we keep up the education, watch that our young people don’t get complacent about food allergies, carry epinephrine and are calmly prepared to use it  – we can prevent the needless loss of precious lives.

See also:
• FARE’s new Food Allergy Bullying PSA and campaign.
• NIAID’s food allergy guidelines.
• A popular new anaphylaxis emergency course launches.

Job:

Allergic Living’s Gwen Smith: Julie, how did you first become aware of your child’s food allergies?

Julie Bowen: I was at work on Boston Legal and my husband was at home. He sent me a text saying, ‘I think we have a problem with our son and peanut butter.’ I said, ‘but he’s had it before,’ and then he said – ‘and he got stung by a bee’. And I was thinking, ‘What is going on over there?’

AL: You mean he was stung at the very same time he was reacting to peanut butter?

JB: Well, it is California and our doors are open all the time. So he [her son Oliver] had wandered out eating peanut butter and was stung by a bee. I was one to think this was no big deal until my husband sent me a picture of our son’s face, which was clearly in distress. It was swollen and disfigured.

My husband rushed him off to the emergency room and he was treated with epinephrine, and after that we learned that Oliver had allergies to all sorts of nuts and peanuts and probably also to stinging insects – but that’s a different series of tests.

After the anaphylactic reaction, I know that my job is to be aware and to be prepared for the next reaction – whenever that may be.

AL: These days you’re a big TV star, you’ve won a second Emmy and the show is a huge hit. But facing anaphylaxis, is that the great leveler?

JB: You know, I think being a parent is the great leveler. People often ask me how my life has changed since Modern Family. And I say, ‘Having three kids in three years was a much bigger change than having a lovely, lovely job.’

AL: What ages are your kids?

JB: Oliver is the older boy and we have twin 3-year-old boys. [So far, no life-threatening allergies have been diagnosed with the twins.]

Next: Bowen’s decision to get involved in the “Get Schooled in Anaphylaxis” campaign.

These included:
•  making any accommodation request of the airline;
•  getting flight crew to make an announcement asking fellow passengers not to consume peanuts or nuts;
•  requesting a peanut- and tree nut-free buffer zone;
•  asking for a peanut- or nut-free meal;
•  wiping off the seat’s tray table;
•  eating only food brought from home;
•  avoiding using the airline’s pillow or blankets;
•  and requesting a certain section of the cabin (not as significant).

Greenhawt and his colleagues found that of the 3,273 participants from 11 countries who took part in the survey study, 349 reported having an in-flight reaction.

“Looking at those who reported a reaction, there were clear differences in what was asked (of the airline) and what wasn’t asked,” he says. So the allergist sees a definite benefit of informing the airline of a serious food allergy.

The study, published in the Journal of Allergy and Clinical Immunology in Practice, involved participants in the United States, Canada, Australia, New Zealand and several countries in Europe and Asia.

Greenhawt acknowledges that many airlines will not offer accommodations such as a PA announcement asking fellow passengers to refrain from eating allergenic snacks.

However, “I do think pre-notification is important, regardless of whether it’s rebuked by the airline or not,” he told Allergic Living. “If you don’t ask and don’t make an effort, you will never receive anything. And certain airlines will be more receptive than others.”

He believes there are lessons from the mitigating behaviors for passengers, for doctors to communicate to patients, and for airlines. While beyond the scope of his study, he agrees that airline allergy policies designed to protect a minority of people, no matter if reasonable, can cause controversy.

“But choices will have to be made at some point,” he says. “Every business wants customers to have a positive experience, and I do believe airlines are concerned about this [allergy risks], but it’s more a matter of not knowing what to do. Hopefully, an airline might also look at a study like this and see some solutions.”

One thing that might grab their attention in this international study is that, among American respondents, an astounding 61 percent reported not flying again after receiving a diagnosis (usually for a child) of a peanut- or tree nut allergy.

Next: Key Recommendations to Allergic Travelers

Researchers have discovered that most adults with asthma who are sensitive to Aspirin also get mild to severe respiratory symptoms when drinking alcohol.

Dr. Tanya Laidlaw, of the allergic disease research center at Boston’s Brigham and Women’s Hospital, explained that Aspirin Exacerbated Respiratory Disease, or AERD, is a condition that involves three things: asthma, nasal polyps and a sensitivity to Aspirin (and other non-steroidal anti-inflammatory drugs or NSAIDS). AERD affects 10 to 20 percent of those with adult asthma.

She says her research team has now found that “three-quarters of all AERD patients do have respiratory reactions when they drink alcohol. For many of them, it’s within several sips of a single glass.”

Seventy-four percent were found to react to alcohol with an upper respiratory reaction, such as a runny nose or congestion, compared to 34 percent of a group with asthma who tolerate Aspirin.

Lower respiratory reactions, such as sometimes severe wheezing and shortness of breath, occurred in 51 percent of AERD patients after drinking alcohol, compared to 24 percent of the Aspirin-tolerant asthmatics.

What Causes Your Reaction to Alcohol?

The alcohol association arose initially from patients themselves. Laidlaw says patients at the AERD clinic at Brigham and Women’s Hospital were often mentioning symptoms like wheezing and coughing, signs of an asthma attack, when they drank alcohol. “They began asking: ‘Did we know why it was that when they had a glass of wine or a couple of beers, they would also have a very similar and often very severe respiratory reaction to the alcohol,’” she told a news conference.

She and her colleagues didn’t know, but were intrigued and decided this warranted study. The Brigham and Women’s center collaborated with the Scripps respiratory clinic in San Diego to send out a survey study to four groups: diagnosed AERD patients, patients who had asthma but are aspirin tolerant, patients with chronic sinusitis who don’t have asthma and to healthy patients with no asthma or sinus issues.

Among the patients reacting to alcohol, red wine emerged as the most likely to provoke symptoms (29 percent of patients), followed by beer (9 percent) and white wine or liquor (6 percent). However, for half of the patients, any kind of alcohol triggered symptoms.

This study of AERD patients and alcohol is continuing. So far, 132 patients have been recruited into the study, but researchers hope to expand this number to 320 before they finish.

Laidlaw notes that many AERD patients have had to stop drinking alcohol. The next step will be to examine what the mechanisms through which alcohol triggers such symptoms. Laidlaw says the relationship should also be useful in the diagnosis of AERD, which is not always obvious, as the sensitivity to Aspirin can be mild and is often overlooked.

See more news from the AAAAI 2013 conference here.

Read more about wine reactions here.

In fact, three to five years after completing an OIT study, Johns Hopkins University researchers said that many participants were more reactive to cow’s milk than they had been early in the course of treatment.

The team presented results from a follow-up study involving 32 children from two clinical trials in which they were fed tiny, then increasingly larger amounts of milk. These patients completed the milk oral immunotherapy, then underwent an oral challenge test for tolerance and were sent home with individualized instructions for daily milk consumption.

It turned out that 38 percent of the test subjects (12 children) who were thought to be desensitized were having frequent symptoms from milk three to five years after the trial had ended, while 22 percent had occasional symptoms. Only 25 percent of the participants were able to consume milk without symptoms. (The other 16 percent had ceased having milk.)

In terms of the type of reactions being experienced, 31 percent reported systemic symptoms (characterized as more than an itchy mouth or stomach ache) and 19 percent had symptoms serious enough to require an epinephrine auto-injector.

At a news conference at the AAAAI meeting, Dr. Robert Wood, director of pediatric allergy and immunology at Johns Hopkins, did not mince words: “Some of the more dramatic failures had looked like absolute successes in the study. They were tolerating huge amounts of milk; they were about as close to ‘cured’ as we could imagine,” he said.

The study shows that 22 percent of the children had returned to either milk avoidance or minimal consumption of it. “The main thing that I’ve come to believe is that they were not as protected as we believed in that they self-restricted [consumption] because they didn’t like the side effects the milk was putting them through,” said Wood.

So have the researchers lost hope? Not at all. It appears more a case of figuring out where the research goes from here for some patients who lose newfound allergy protection easily.

“Learning something that’s disappointing is why it’s called research,” Wood noted about the study. As he told Allergic Living in an interview: “To go from where we were 10 years ago, which was to say that ‘we probably can’t give food to a highly allergic patient safely at all,’ to say now that some patients are having extremely good outcomes, this leaves us with encouragement that the long-term potential is very real.”

Dr. Wesley Burks, one of the leaders on OIT research from the University of North Carolina, summed it up well when he said: “There are a lot of encouraging results, but there’s also a lot of work to be done. This isn’t really ready for treatment – we’re not there yet.”

There are some intriguing bigger questions on where research will head to get “there”. Allergic Living will be examining these issues in the Summer edition in a special report on food allergy treatment research. We hope you and your family will find it enlightening.

Read more news from the AAAAI meeting here.

See Also: Parents Exposing Kids to Their Allergens

For our cover article, writer Carolyn Black has an incredibly insightful article on the impact on some marriages of the day-to-day vigilance in managing food allergies and celiac disease. It includes stories of husbands and wives who are far apart in their approaches to managing children’s allergies – and does that cause stress! But this also turns out to be an issue with a later in life diagnosis of celiac or allergy (when a couple’s eating habits change overnight).

While studies have shown that quality of life suffers in families with food allergic kids, this is the first time I’ve seen couples speaking specifically – and so honestly and directly – about the impact on their marriages. Their stories are heartfelt and make you realize that when we speak of “allergy management,” what a journey that can be.

But what I love in this article is that Carolyn doesn’t just dwell on difficulties. She interviewed psychologists and parenting experts and shares the best of their advice for helping couples work as a team again. If food restrictions are in any way hurting your relationship, you’ve got to read this article.

I’m also so glad we’ll be publishing senior health writer Lisa Fitterman’s article on gluten’s effects on the brain. Lisa delves into the gamut of cognitive symptoms that those with celiac report: from headaches to insomnia and brain fog. But she goes even deeper – interviewing prominent U.K. neurologist Dr. Marios Hadjivassiliou to gain a greater understanding of his latest and groundbreaking research.

He is finding profound neurological effects in those with celiac disease who haven’t been diagnosed; it’s unlike anything we’ve known before. Dr. Hadjivassiliou wants to spread the word that “it’s imperative that we change the mindset about celiac disease and brain dysfunction.” AL mag hopes to help to that end with this article.

While there’s lots of thought-provoking reading, the AL team is also busy writing and photographing lots of great lifestyle features – to make the Spring issue an uplifting and inspiring read. There are many stories that I could mention, but as a hard drive full of editing awaits, I’ll just share a couple more.

• The lineup from our fabulous food team: New Food Editor Cybele Pascal offers an inspired selection of allergy-friendly, gluten-free Asian recipes. It was pure pleasure to “have to” test her Pad Thai (yes, allergen-free Pad Thai!!) at our food shoot. Delicious!

Senior Editor Alisa Fleming gets creative with brunch waffles and pancakes (no dairy, no gluten, no any top 8 allergens), and Associate Food Editor Elizabeth Gordon brings us outstanding chocolate cupcakes and cookies for spring.

• Just in time for spring allergies, we’ll tell you how to design a sneeze-free garden, and we’ve got amazing allergy-friendly gear for kids. There’s great advice from our expert columnists, including a terrific article from Gina Clowes on the broader implications of the Lesley University agreement on the disability rights of food-allergic students.

FYI, if you’d like to get this issue but haven’t subscribed yet, that’s easy to do online here.

I’d better get back to that editing. But I’ll be looking most forward to our readers’ feedback on the new issue, which will land in mailboxes about the first week of April. Feel free to send your comments to editor@allergicliving.com. We hope you’ll enjoy the issue.

warmly, Gwen

Here was the issue: Back in 2009 a few students at Lesley University in Cambridge complained that their civil rights were being violated under the Americans with Disabilities Act because the university made no accommodations in either the meal plan or other food services for celiac disease and food allergies. At least one student with celiac disease had to purchase the meal plan, though it didn’t have gluten-free options.

The Department of Justice thought the complaint had merit and investigated. The DOJ’s conclusion: “Food allergies may constitute a disability under the ADA.” The department specifically noted the damage that repeated consumption of gluten can do to those with celiac disease, “leading to vitamin deficiencies that deny vital nourishment to the brain, nervous system, bones, liver and other organs”.

The administrators at Lesley University, a private university known for its education and arts programs and a neighbor to ivy league Harvard University, could see the seriousness of the DOJ’s position. They decided to settle.

Under the agreement, announced with little fanfare at the end of December, Lesley U. said it would amend its food services policies to provide gluten- and allergen-free food options in its dining halls, work with affected students on individualized meal plans, allow pre-ordering of safe meals and set up a dedicated space for preparing and storing allergen-free foods. The food services staff are now undergoing training on allergy issues, and the university has agreed to pay the students who complained $50,000 in compensatory damages.

This is big-time accommodation and a big win for the food allergy and celiac communities. It serves notice that those on medically restricted diets have a right to eat where they learn without fear that their food will make them seriously, potentially dangerously ill. It acknowledges that students with allergies and celiac should be able to live in a dorm setting and rely on the food service personnel to have the knowledge and inclination to make them a meal that hasn’t been cross-contaminated.

But it’s not entirely clear yet how far-reaching the implications of the Lesley agreement will be. After the quiet release of this agreement, legal scholars, educators and others are now debating this.

To help understand the bigger picture of the Lesley U. agreement, Allergic Living columnist Gina Clowes is interviewing the senior counsel from the Department of Justice on this case and ADA legal specialists for the magazine’s Spring edition. I think readers will find it fascinating to learn more about this important precedent. I know I will.

Entering its third year of national distribution, Allergic Living magazine is bolstering its editorial presence with the addition of Alisa Fleming as Senior Editor.

Fleming is an accomplished writer and the author of Go Dairy Free: The Guide and Cookbook for Milk Allergies, Lactose Intolerance and Casein-Free Living. She is also the founder of GoDairyFree.org, North America’s No. 1 dairy-free website.

“We’re thrilled to have Alisa on board,” says Gwen Smith the magazine’s Editor. “She brings outstanding ideas, knowledge and passion to Allergic Living‘s coverage of food allergies and intolerance.” Fleming will continue her popular No Dairy, No Gluten recipe feature in the magazine, but “in the role of senior editor, Alisa gets to show her skills well beyond her great food writing,” Smith says.

Since its launch across the United States in the spring of 2011, Allergic Living magazine has grown rapidly and gained a reputation for editorial excellence. Smith is a former senior editor of national magazines and newspapers, many of Allergic Living’s writers are well-known health journalists, and its expert columnists include allergists Dr. Scott Sicherer (Mount Sinai School of Medicine), Dr. Hemant Sharma (Children’s National Medical Center) and Dr. Clifford Bassett (Allergy & Asthma Care of New York), as well as dietitian and celiac expert Shelley Case. For the Canadian edition, regular allergist columnists are Dr. Susan Waserman (McMaster University, Hamilton) and Dr. Wade Watson (IWK Health Centre, Halifax).

Other expert voices include the National Foundation for Celiac Awareness (NFCA), the Asthma and Allergy Foundation of America (AAFA), FAAN (now FARE, the Food Allergy Research & Education organization) and Anaphylaxis Canada.

From family feuds with relatives who don’t “get” serious food restrictions to social concerns like dating and eating out and societal issues like bullying and avoiding allergens at school, Allergic Living is the go-to magazine for managing the real issues facing those with allergic or celiac disease.

For the 2013 publishing season, the magazine plans to tackle issues such as marital stress and food allergies and the mystery of adult-onset allergies. Meantime, the magazine’s food editors are already testing dozens of inspired new allergy-friendly recipes – while their journalist colleagues have begun work to uncover the latest on research progress. As well, readers can look forward in 2013 to smart advice on reducing toxins and allergens in the home and even the tricks to allergy-friendly gardening.

“We are privileged at Allergic Living to work with the best in the fields of food and environmental allergies and celiac disease,” Smith says. “And in her new role, Alisa Fleming will help us to set the bar even higher for the incredibly helpful articles we can deliver to readers.”

For more about Allergic Living magazine, including the newly released Winter edition, contact: editor@allergicliving.com.

View a sample edition of the magazine here.

According to a study presented by Dr. Leonard Bielory at the annual meeting of the American College of Allergy, Asthma and Immunology, pollen counts are expected to more than double by that year.

Bielory, who is a leading investigator of plants and climate change, explains that in the year 2000, pollen counts averaged 8,455. By 2040, they are predicted to reach 21,735.

To create these far-reaching forecasts, the Rutgers researchers study allergenic plants in special climate chambers that mimic future conditions.

Naturally, along with this news there was a related finding: the sneezing season will begin earlier every year.

But in real life, Julie Bowen is one of us: an allergy mom with a son at risk of anaphylaxis. She found out the hard way – through an anaphylactic reaction – that her son, now 5 years old, has severe allergies to peanuts, walnuts and bee stings.

Recently, on the Anderson Live talk show with Anderson Cooper, Bowen described how her son at  the age of 2 ate peanut butter for the second or third time and “and, conveniently, was stung by a bee seconds later and went into full anaphylaxis.”

Well aware that her son now spends his daytime hours at school, and in the care of teachers and other staff, Bowen is raising awareness through Mylan Specialty’s “Get Schooled in Anaphylaxis” campaign at www.Anaphylaxis101.com. (Mylan is the manufacturer of the EpiPen brand auto-injector.)

In a news release, Bowen said her child received “immediate medical care and recovered quickly, but it was a wake-up call that anaphylaxis can occur anywhere and at any time, even when you may not think your child is at risk.”

The campaign strives to get local school communities involved in allergy awareness. A key component is the Get Schooled in Anaphylaxis Challenge. To take part in this essay contest, U.S. students in Grades 1 through 12 should submit an essay to suggest ways their own schools can improve allergy accommodations to support food (and sting) allergic students. The prize is impressive: a $2,000 college scholarship.

The submission rules are: 

• for Grades 1-4 – 50-150 words;
• for Grades 5-8 – 150-250 words;
• and for Grades 9-12 – 400-500 words. The final day for submissions is November 9.

“Through the Get Schooled in Anaphylaxis Challenge, students across the country will have the opportunity to educate their peers and help everyone be more aware of life-threatening allergies,” Bowen says.

The campaign site also offers helpful information about food and insect allergies and numerous resources for schools and caregivers.

Essential Related Reading: Time to End Food Allergy Tragedies