Allergic Living asked Dr. Phil Lieberman, clinical professor of medicine and pediatrics at the University of Tennessee’s College of Medicine (and father and grandfather to food-allergic children), for answers to nine food allergy questions you’ve been wondering about but haven’t had a chance to ask.

1. What are the typical hallmarks of severe allergic reaction?

Reactions that involve the respiratory tract system (upper and lower areas) and the cardiovascular system. For example, coughing, wheezing, shortness of breath, inability to breathe because of upper airway swelling, cardiac arrhythmias, fall in blood pressure with shock, and even a heart attack typify a severe allergic reaction.

2. What do the new food allergy guidelines produced by the National Institute of Health/National Institute of Allergy and Infectious Diseases say constitutes an anaphylactic reaction to food?

If any two of the following body organ systems (skin, GI tract, cardiovascular, airway or central nervous) are affected, this automatically requires the use of an auto-injector of epinephrine. If a known allergen is ingested and there is a single manifestation of any reaction in any of those bodily systems, this also automatically requires use epinephrine. For a deeper explanation, the National Institute of Allergy and Infectious Diseases has patient guidelines that can be downloaded for free.

3. What is the best course of action in the event of an anaphylactic reaction?

Immediately inject epinephrine and then call 911.  A second dose should be available and it should be administered in 10 minutes if there has been no improvement and/or if an emergency medical facility has not been reached. To prevent threatening falls in blood pressure, you can lie down and elevate your legs as well, if this posture does not make it difficult to breathe.

4. What exactly is epinephrine and how does it work in the body? What does it do to a severe reaction?

Epinephrine is a hormone the body makes itself: the “fight or flight” hormone. It is designed to increase blood flow to muscles, strengthen contractions of the heart and increase alertness. Its other name is adrenaline because it is manufactured in the adrenal gland.

5. Are there any side effects or risks of using an autoinjector of epinephrine?

In general, there are no severe side effects from the administration of epinephrine. Because it is the “fight or flight” hormone, it can make you jittery, raise your blood pressure and in some patients, cause tremors. In a healthy individual, this is uncomfortable but is not a threat. In some patients who have high blood pressure or heart disease, more severe side effects can occur.  Still, in a case of anaphylaxis, the risk/benefit ratio favors the administration of the drug since anaphylaxis is a life-threatening condition.

Next page: “Is there a difference between different manufacturers of epinephrine?”

In retrospect, Becker knows the reaction could have been far worse, and she’s thankful it wasn’t. Still, she wonders whether her in-laws were actually checking to see if her child’s allergy was real. “To this day, I believe he gave it to him to test whether I was making the whole allergy up,” she says, adding that after the incident, the in-laws took the allergy far more seriously. “It was strange, because I now had ‘proof’ of my son’s allergy, so I felt more comfortable making special requests and inquiring about ingredients.”

For 14 years, Rachel O’Neill* has tried to get her mother-in-law to understand. O’Neill, who lives in Ottawa, has explained again and again that her allergies to tree nuts and peanuts are a serious condition that could land her in the hospital – or worse – and that her oral allergies to carrots and celery are not the product of pickiness. Still, when she and her husband visit, O’Neill’s mother-in-law continues to dish out foods she’s allergic to, then remembers out loud that her daughter-in-law doesn’t “like” them.

O’Neill’s husband always speaks up about his wife’s allergies, and for the most part, his mother seems sympathetic enough – until it’s mealtime. “The most frustrating part is that the sympathy is there, but the follow-through is not,” explains O’Neill. “I find it exhausting that I constantly have to ask whether the food being served has nuts in it – then still can’t trust that the answers are legit.”

In Pickering, Ontario, another family was shocked to discover the source of their young son’s frequent bouts of illness was his own grandparents. In the dangerously misguided belief they were building up his tolerance, the paternal grandparents had been secretly grinding almonds into his cereal behind his parents’ backs, and it was making the child sick.

Amazingly, stories like these are not at all uncommon. Every day, adults and kids are diagnosed with food allergies or celiac disease, and they naturally expect that the people closest to them will take the most care – as they would with any serious health condition. After all, you should be able to trust your mom to keep gluten out of her gravy, and assume that, when your brother babysits your peanut-allergic daughter, he carefully reads the ingredients on that chocolate bar, right?

For too many living with food allergies and celiac disease, sadly the answer is no. In the fall of 2010, Allergic Living sent out a request for anecdotes of family experiences (both good and bad), and within days we were inundated with responses – dozens of stories about grandparents, parents, uncles, aunts, sisters, brothers and in-laws denying and ignoring their allergies, disputing them, and worse, triggering reactions that could be life-threatening.

A disturbing number told stories of disbelieving family members actually “testing” allergies or gluten intolerance by slipping the offending food into their or their children’s meals.

Not surprisingly, those telling the anecdotes feel hurt, upset and betrayed as close family relationships descend into pitched family battles. Sometimes full-fledged wars break out as communication melts down and both sides storm off in opposite directions. Along the way, many are left to ask, “Why doesn’t my family get my food restrictions?”

*Name changed by request

Next: The Need to See in Order to Believe

Be clear about your allergies. Socializing with out-of-town family or friends can be tricky because they may not fully understand the risks that food allergies present and the safeguards you or your child need.

Be polite, clear and assertive – and never feel bad about saying no to a food or beverage that is offered to you. It’s far better to be safe and enjoy your time away than to get an impromptu tour of the local emergency room.

Be in the kitchen when food is being prepared, read labels and help out. If you’re not sure about the food on offer, bring your own. People may ask why you’re not eating what they’re eating, but before long, they won’t even notice the difference – and you can kick back and enjoy a little peace of mind on your holiday.

Keeping Peace in the Family

Combine food allergies or celiac disease and staying with relatives, and sometimes misunderstandings arise and dinner preparations can dissolve into a family argument. What’s the solution? Smart, organized communication – and don’t wait until you’ve arrived to lay the groundwork.

Remind the family hosts – preferably by e-mail for handy reference – that you or your allergic family member has some special needs. Detail the allergies, the necessity for label reading and suggest what you can do to make the mealtime process easier for people new to these diet restrictions.

We also asked some experts for their strategies for family peace. Excellent and somewhat varied tips follow. Republished from Allergic Living magazine.

Beverley Cathcart-Ross
Parenting Coach, founder of the Parenting Network

• Step 1: Find a calm, appropriate time for everyone to discuss your or your child’s food allergies. Five minutes before the meal is served is not going to work.
• Step 2: To win people’s cooperation you need to acknowledge their viewpoint, or you could end up in an argument. Don’t defend or say “yes, but”.
  Be quiet listen carefully – even if you don’t agree.
• Step 3: In 10 words or less, speak about how you feel. Calmly say something like, “I care too much about this family to fight” – then be quiet. Repeating your concerns won’t strengthen your cause.
• Step 4: Brainstorm. Together with your family, make a list of two or three things that would improve the situation. Remember: work toward improvement, not perfection. You just want family gatherings to run safely.

Laurie Harada
Executive director, Anaphylaxis Canada

• It’s not just what you say; it’s your choice of words and tone of voice. Stay away from phrases like, “You should do this” and “Why aren’t you doing that?” These will put a person on the defensive.
• Step back, think of it from their perspective. Figure out what you do that gets your family members’ backs up, and consider what to do differently next time.
• Ask a neutral friend for his or her take on your tone, body language and choice of words before you have the big talk with relatives. Pick someone who will tell the truth, not just what you want to hear.

Gina Clowes
Life coach and director of Allergymoms.com

• People with allergies or allergic parents might share how it feels when their child is unable to take a cookie from the holiday buffet table. The emotional pull of this is huge, but those who do not live in our shoes have no idea until we share it with them.
• Most of the people who love us will listen, but we need to put our thoughts and concerns into words. People can sometimes misinterpret our rules and ways of life, and think it’s about control when it’s not. It’s about safety, inclusion and love.

Mary Allen
CEO, Allergy/Asthma Information Association

• Get a letter from your allergist that clearly states the allergy diagnosis, the ingredients that need to be avoided and the procedures to follow when a reaction occurs. Make 50 photocopies and hand them out to relatives and other caregivers. That way, it’s doctor’s advice. Also teach everyone how to use the auto-injector.
• Stick to medically verified facts, calmly repeating them as often as necessary. Don’t exaggerate. Avoid saying things such as, “My son can’t be in the same room as milk or peanut because the smell alone will kill him.” If you make that kind of claim, and the family later finds out it’s not based on evidence, you lose credibility.

Dr. Eyal Shemesh
Associate professor of pediatrics and psychiatry at Mount Sinai School of Medicine

• There are healthy ways to avoid allergens, but sometimes we avoid more than we need to – and this can lead to “avoidance coping.” For example, it may be unreasonable to expect a relative’s home to be allergen-free, but it’s safe to visit as long as there’s no exposure to harmful foods. Avoidance coping would mean not visiting the relative’s home at all because of the fear of allergens, even though exposure can be prevented.
• Avoidance coping blurs the line between what is allowed and what is not – and that leads to anxiety rather than confidence, because people can become afraid of safe, as well as unsafe, circumstances.

Share your views on Allergicliving.com’s Forum.

First published in Allergic Living magazine.
To order that issue or to subscribe, click here.

© Copyright AGW Publishing Inc.

See Also:
• Family Food Feud: Relatives and Allergies
• Tips for Traveling with Allergic Kids
• When Family Doesn’t ‘Get’ Allergies

Sesame’s reach became more sticky, more apparent, and more extensive. There was no take out sushi, Indian food or Chinese food. There was none of my preferred combo: sesame crackers with peanut butter atop. And, unexpectedly, there were no more of my favourite indulgences: Creme de la Mer skin cream and fancy Gel Express Aux Fleur Sisley face masks. Sesame, the oily seed, also lodged itself in unexpected places: adhesive bandages and pharmaceuticals.

When my son was diagnosed with a potentially life-threatening allergy as a 1-year-old, I was initially glad he didn’t have a peanut allergy. Who had heard of sesame? How bad could that be? Sesame had much less awareness (and the peanut allergy was yet to come). Who knew that — on top of the grinding worry — so much of the world would become denied to us?

Food writers try to describe the taste of sesame, but they always seem to fall short. Sesame is nutty, they say. But not really. It has a spectacular taste unto its own, one that adds spark and refinement to so many foods. Sesame harkens back to Ethiopia and is a central ingredient in many of the world’s great cuisines: Indian, Thai, Chinese, Middle Eastern.

My son’s first birthday invitation came when he was kindergarten. It was to McDonald’s. Of course, sesame’s reach is firmly embedded in that American icon: the McDonald’s hamburger bun. He did not go to the party.

We discovered the allergy on the last hour of a six-hour car ride from Calgary to Jasper. Our one-year-old was fussing, I gave him a Sesame Snap to suck on. You know how the story goes: his face became red and blotchy, then puffy, his eyes began to swell shut. When we checked in at the hotel, the receptionist took one look and said: “Do you need the number of the hospital?”

We called. We could come down and have him assessed, the nurse said lamely. We were tired. We thought we’d wait. It was only sesame, I thought. We waited, his swelling went down. Later, there was a visit to the allergist for skin testing. There would be no more sesame in our house, or peanuts or sunflower seeds.

The joy of sesame is lost. When my husband buys sushi with sesame in error, we wait until the kids are in bed. We eat it in stony silence. There’s little joy to be had from sesame any more. Not in the house, not in a bed, not with a cat, not with a mouse, move over green eggs and ham. There will be no sesame, Sam I am.

At the same time, there was no sesame, of course, there was sesame everywhere. At every friend’s lunch and in every restaurant, sesame was much more in evidence than I’d ever suspected. I would become familiar with the work of a young Spanish scientist, Estibalitz Orruno, at the University of Leeds. Under a grant from the Basque government, she undertook a doctoral degree studying sesame allergy.

And what a spectacular seed sesame was found to be: 42 to 54 per cent oil, 22 to 25 per cent protein, full of folic acid, niacin, calcium, phosphorus. The cost: cheap. In addition to taste, sesame also won’t go rancid. Orruno examined sesame’s proteins and sought to isolate ones that might cause the allergic reaction; she documented sesame’s world dominance in terms of use, and its fast rise as a source of allergic reactions.

The irony of the purpose of the proteins is not lost. Their role is to promote germination and continue the lineage. Yet at the same time, increasing numbers of people have life-threatening reactions to these very same proteins.

Little lingering seeds. There has been an evolution in the seven years since my son’s diagnosis. A pamphlet is now available from Health Canada – “Sesame Seeds: One of the nine most common food allergens,” and every bakery slaps on a “may contain” warning about sesame. Our bread maker does overtime.

We travel within Canada and to the United States, but foreign travel, to the exotic places where sesame is prevalent, is avoided for now. Instead we hope for scientific breakthroughs that will allow the wonderful world that sesame inhabits and represents to open to us again.

Janice Paskey is a writer and editor who lives in Calgary.

Angela Doody pulled open the front door of Priestman Street Elementary school two years ago, and strode across a shiny tiled floor on her way to the office to register her two children. Looking around, she was amazed at how clean and neat the kids’ new school was. “I thought, “We get to go here?” she recalls.

Aside from the friendliness of the staff, it was well organized and uncluttered. “It just seemed like a really good place to be educated.” Doody was not aware that day that Priestman Street has been a prototype: the first school to go through the New Brunswick Lung Association’s Healthy Schools program, the first in a province to vastly improve its indoor air.

Her 11-year old daughter, Katelyn, who has asthma, has been able to benefit from this program while in Grades 4 and 5 at the school. The previous school she attended was in an older, dusty  building, and that led to a “rough year for her,” says Doody.

While Katelyn did have some trouble with asthma control in her first year at pristine Priestman – “she picked up a lot of viruses,” says her mother – this past year was far better. “She didn’t miss many days of school last year because of her asthma,” says Doody.

Missing school is a big problem for students with asthma. Too often the school environment itself is a culprit, causing symptoms like wheezing or coughing that are exacerbated by the colds spread by classmates. Science is showing that air quality in schools can have a significant impact on health, and this becomes especially important when there are children attending with asthma or environmental allergies.

Back in the 1980s, asbestos in the schools became a focus (and is still a concern in some schools), but what our school systems have been slower to address are a huge number of allergen triggers and irritants. In classrooms and portables, mould can be a festering issue, antiquated ventilation systems can lead to stagnant air and recycled allergens, while old carpeting can harbour a double whammy of dust mites and mildew.

The janitor may inadvertently spark an asthma attack by using potent cleaning chemicals, so might rodents being shown for educational purposes, while a teacher’s fragrance can aggravate a child with a sensitivity to scent. Even tools as seemingly harmless as chalk and supplies for arts and crafts can be problematic.

Children are particularly susceptible to chemicals, dust and other allergens in the air; they are not simply mini-adults. Their skin absorbs toxins at a higher rate and they breathe more air per pound of body weight than adults do.

Students with asthma, in particular, benefit from an environment free of allergy triggers. Making improvements to a school’s air quality can at times be simple, such as switching to dustless chalk. Other changes, such as overhauling ventilation systems, are a lot more costly and may require lobbying at the school board level for funding.

However, in schools where air quality improvement plans have been made, the difference has been profound. At Priestman Street Elementary, change began with a simple walk through the school.

Donna Bliss, Priestman Street’s principal, worked with a team that surveyed the one-level school’s four wings, which contained classrooms, main offices, the gymnasium, and the music room. They worked from a checklist from the Lung Association’s Healthy Schools program, which includes a range of potential problems, such as cleanliness, pest control, moisture, ventilation, furnishings, parking zones and storage and use of art and science supplies.

Bliss and the committee identified a number of issues. “We had plants in classrooms that had mould; we had to put air monitors in a couple of rooms because we thought the air was stagnant; we had to check piping because at one point they had been wrapped in asbestos,” she begins to list.

“Our service that gives us custodial supplies was just going through the transition to environmentally friendly products, and we still had some old products, so we had to dispose of them appropriately.” They also examined their outdoor grounds, which are beside a busy intersection in an area of Fredericton known as “Top of the Hill.” They found the yard lacked green space and that school bus drivers and parents were idling their vehicles on school grounds.

Next page: School Ventilation

Peanut

• Tennis player Serena Williams
• NHL player Tom Poti, defenceman for the Washington Capitals
• Singer Alex Kapranos, Franz Ferdinand
• Freestyle aerials champion Steve Omischl

Tree Nut

• Singer Clay Aiken
• NHL player Tom Poti

Last year, out of nowhere, Lucas started to complain about wearing his EpiPen to school. Until that point he’d been pretty cooperative about it, choosing instead to grumble about bedtime, mealtime, Wii time, his little brother, the fact that our living room is not a basketball court and everything in between.

“This too shall pass,” I was hoping, though just beneath the surface I was fretting, suspecting that my second biggest fear as an allergic parent was starting to unfold in front of my eyes. Until now, I was always so proud, and comforted, by how well Lucas handled his identity as an allergic kid, how seldom it was that he’d take issue with all the special vigilance involved in his care.

I suggested different ways to wear his EpiPen belt, and even bought him a new type of carrier for a little bribery action. Quickly, his complaints escalated to full-blown crying jags before school, refusals to get dressed in the morning and ultimately a refusal to wear his EpiPen altogether.

“Why do I have to wear it?” he’d cry, whine, yell. “I’m the only one. I hate it. I hate having allergies…”

“Lucas you know you have to wear it. You’re not the only one. It’s there for an emergency. Just like your seatbelt. It’s a safety issue. It’s the school’s policy,” I’d say in various combinations, trying to keep my calm and remain consistent like a good mother.

My heart was breaking all over the place: I wished he didn’t have to wear it either. I wished more than anything that we didn’t have to worry about life-threatening peanut, tree nut and egg allergies. I wished I could make it all go away, but I couldn’t – and can’t. I had to stay strong and unwavering for him, for me, for all of us. My approach, however, was anything but working.

This is when I ended up at Beverley’s house. Beverley is Beverley Cathcart-Ross, a well-known educator and counselor, and the woman I now call my parenting coach. It is with her sage advice and keen understanding of the inner mechanics of my little boy, whom she has still never met, that Lucas and I were able to get past our first “why me?” moment in our allergic journey.

What’s more amazing is that it happened in a flash – the result of one very potent line Beverley gave me to say: “If I had a magic wand, I’d make it all go away.” It’s true, it’s sympathetic, it’s non-negotiable, it has the added value of some fantastical imagery. And it did the trick. He not only wears his EpiPen again without complaint, he’s the first to remember it when, on the rarest occasion, others forget.

He knows why he has to wear his auto-injector.
He’s been told from the beginning. What he needed
to know is that his feelings about it are being heard.

What Beverley pointed out was that my previous and repeated response was nothing but “waa waa waa” to Lucas (remember the adult voices in The Peanuts cartoon?). He knows why he has to wear his auto-injector. He’s been told from the beginning of time. What he needed to know is that his feelings about it are OK and being heard. He knows that now, thanks to that perfect little line, which by the way, works wonders in many moments of adversity with both my boys. That and: “I love you too much to fight with you.”

Another thing Beverley reinforced is that I’m raising my children to be adults. As such, it’s important to think about, and even commit to paper, my long-range goals for them. Some of mine, which are common to most parents are: independence, self-reliance, responsibility, conflict resolution and self-respect.

According to Beverley, once you’ve figured out what life skills you want you kids to possess by the time they’re, say, 18, you must continuously ask yourself whether your actions, decisions, whatever, are working toward or against them.

In her experience, airlines had stopped serving nuts years ago – pretzels were the norm now – so she didn’t think to contact Air Canada in advance.

But 10 minutes after takeoff, Humphreys’ tropical vacation became an allergy nightmare: Thousands of feet in the air and locked in the thin metal tube with nothing but hours of ocean ahead, the flight attendants began handing out packages of cashews – by far Humphreys’ worst allergy.

The 43-year-old knew she had to speak up, so she tapped one of the flight attendants on the elbow and explained that she was extremely concerned about the possibility of a serious reaction.

“The flight attendant was nasty. She said, ‘Well, we just can’t take care of everybody,’” recounts Humphreys. The crew continued to dole out the nuts. “So I had to bide my time and hope that nothing happened.”

Luckily, nothing did. But Humphreys and her husband spent much of their vacation trying to figure out how to get Paige home safely. Air Canada told them, as they do all allergic travelers, that it would be “unfair to other passengers” to withhold nuts, and that it was the couple’s responsibility to “bring the proper medication and to have the proper protection.”

Problem was, the “proper protection” included not being surrounded by people eating cashews. Humphreys began looking into other options. “But the other airlines serve nuts, too,” she says. So I thought, ‘I’m no better there – and I would be alone, too.’”

When it comes to nerve-wracking and sometimes dangerous experiences of flying with food or environmental allergies, Humphreys is definitely not alone. In the past decade, allergies themselves have taken off: roughly one million Canadians and 11 million Americans now have food allergies, and approximately 23 million North Americans have asthma.

Still, airlines have not adapted to this new reality. Few have clearly defined policies and procedures in place for allergic passengers, and they continue to serve some of the most highly allergenic foods, including nuts, sesame, fish and shellfish. Some even still hand out peanuts, the most prevalent trigger of serious reactions.

But many allergy sufferers and parents of allergic kids think it’s high time airlines made the skies safer for the millions of travelers with allergies. Dozens have filed formal complaints with airline regulators such as the U.S. Department of Transportation and the Canadian Transportation Agency.