The following article is from the Winter 2013 of Allergic Living magazine.

Michael Saffioti’s mom Rose thought her 22-year-old son was doing the right thing by turning himself into police after a missed court date last July. But for the Washington state man, who had a life-threatening allergy to dairy, one night in jail turned into a death sentence.

The young man had landed in the court system on a misdemeanor marijuana possession charge – he spoke of using pot to curb crippling anxiety about his food allergy and asthma – and then a legal technicality led to him spending a night in the county prison.

Under normal circumstances, he would have gone before a judge then been released, but Saffioti never made it past breakfast. According to witness testimony from fellow inmates, the young man was given a meal that included a pancake and oatmeal, and when he reminded staff of his dairy allergy, they removed the pancake and told him the oatmeal was safe.

After a few spoonfuls, Saffioti began having difficulty breathing and asked for his asthma medication. Soon after, the prisoners were locked into their cells and the guards changed shifts. Saffioti’s reaction continued to worsen. According to Anne Bremner, the Seattle lawyer representing the family, Saffioti pressed his emergency button and called for medical help, but his emergency light got turned off; as his breathing grew more labored, Saffioti pleaded for someone to call 911.

Other inmates say they began pressing their emergency buttons and yelling for help, making clear that this guy was not faking. Their calls were ignored.

Saffioti was supposed to be housed in the prison’s medical ward, and his mother had made sure that corrections staff had his asthma medication, EpiPen auto-injector and medical records, and yet no help came for at least 20 minutes. A prison trustee (an inmate who has work privileges) said he watched in horror as Saffioti finally collapsed in his cell. By the time paramedics arrived, it was too late.

“The trustee is a tough guy, but he said it’s the worst thing he’s ever seen,” says Bremner. “They let this guy die, and he was begging for help.”

Next: Mother’s Actions

Missing out on great restaurant evenings with friends? Learn how you, too, can indulge.

Step 1: Before You Go

Know your condition: Do your homework: learn, in detail, what you can’t eat, where an offending protein hides, the multiple names for it, and names for it in key languages. If you have shellfish allergy, the French bistro menu may refer to fruits de mer. Hint: they aren’t fruits. Nuoc mam pha? Sounds lovely but it’s Vietnamese fish sauce. Sodium caseinate? Dairy. Durum? That’s wheat. (Look up specific allergies and celiac disease at Allergicliving.com, and see left panel links for “hidden peanut”, “hidden milk”, “hidden gluten”, etc.)

Carry your meds: Allergists recommend epinephrine as the first-line medication for a food allergy reaction. Having an auto-injector with you is especially important whenever you plan to eat, since anaphylaxis can come on swiftly after consuming the wrong food. Consider that restaurant reaction horror stories almost always occur because the patron did not have an auto-injector on hand. Also have a food allergy action plan on you: in your purse, backpack or as a pdf on your smartphone. (See American and Canadian plans.)

Restaurant card: I recommend bringing a chef or food allergy card. These explain your allergies and the types of foods they are found in. Top chefs have told me that these can mean the difference between clarity and confusion in the kitchen. Find them at Selectwisely.com or Allergytranslation.com.

The right attitude: Let’s get you psychologically prepared to dine out. Your mental equipment includes: an approachable demeanor, a genuine smile and lots of pleases and thank yous. These will get you far at a restaurant. Conversely, anger or threatening language or behavior will get you nowhere fast. You will be pleasantly surprised by what a positive frame of mind will bring.

Next Page: Step 2 – Deciding where to dine

In the spring of 2010, I packed Nolan in the car and headed to Place D’Orleans mall Easter event. It started off great – we even ran into friends, and the two boys were soon happily working away at the craft table. Then I looked up and had one of those “Where did everyone go?” moments. Parents and kids were racing off in all directions. Unbeknownst to me, the event included a store-to-store trick or treat-style Easter candy gathering.

It didn’t take long before I parted ways with our friends, as it became apparent this wasn’t going to work. Our son was too young to understand he wouldn’t be able to have any of the candy and chocolates, but he was very aware that he wasn’t getting ‘something’ to hold like everyone else. I tried to be creative; I asked one shop owner to put ticket-gun price stickers on his hand. But that wasn’t enough to quell the tears welling up in his eyes.

Sure, I could have just bought him something, but that wasn’t what he wanted. He wanted to be a part of the festivities. To compound the issue, now there were endless children eating very unsafe treats, who in turn were touching everyone and everything in the mall. I left the mall that day with my son in tears, causing the mommy guilt tears to flow also.

The next day, I wrote an e-mail to the mall’s management company. I thanked them for hosting wonderful children’s activities at our mall outside of Ottawa. But I also explained that, while not intentional, these events were in fact excluding children with food allergies.

A woman named Kirsty Allaire at Primaris Retail Management received the e-mail. Kirsty was empathetic, supportive and eager to know what changes could be made in order to make mall events safer and more inclusive.  She promised to see she what she could do for the next big mall event: Halloween.

Halloween rolled around, and I didn’t hear from her. Turns out she purposely hadn’t told me ahead of time what accommodations she had made. She wanted to see the look on my face.

Next page: Author is awed by the allergy accommodations

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?”

NHL & NBA owner Ted Leonsis

From hanging out with movie stars to schmoozing with international royalty, Ted Leonsis enjoys a pretty glamorous lifestyle. Still, days spent on planes, film sets, galas and sports arenas present a special challenge for the Internet executive turned sport-team owner and filmmaker. That’s because Leonsis lives with life-threatening allergies to peanuts and tree nuts, not to mention environmental allergies and asthma.

Leonsis, who’s best known for owning the NHL’s Washington Capitals and the NBA’s Washington Wizards, spoke to Allergic Living’s managing editor Kim Shiffman and revealed a lot about balancing an on-the-go lifestyle with his severe allergies.

Exactly what are you allergic to?

I’m allergic to every nut imaginable, plus cats and dogs, dust, mold, all the pollens, trees and grass. I’ve got a litany.

When were you diagnosed?

When I was a baby, my mom knew something was wrong with me because of how I would react to some foods. It was hit or miss, and she just thought, “Boy, guess he didn’t like that.”

Then one day I went shopping with her at Christmas, and they were roasting nuts in the store. The steam was going up in the air, and as we were walking down the aisle, I went into anaphylactic shock. An ambulance came and they took me to hospital. My mother didn’t know what had happened, but the doctor asked a lot of questions, sent me for skin tests and that’s when they realized how much allergy I had.

What’s the worst allergic reaction you’ve had?

One I remember that was really, really bad happened when I was 9 or 10. I went to a sleepover at a friend’s summerhouse, and he had cats. It activated a really bad asthma attack; I couldn’t breathe and got a bad headache. They took me to the hospital.

But more recently, in 2006, I was producing a movie – Woody Harrelson was in it and a bunch of other movie stars. We were on a studio lot in L.A. and it was late at night, maybe 10:30 p.m. Because it had been such a successful shoot, the crew ordered chicken-salad sandwiches from some famous L.A. restaurant. This is what they always did to celebrate.

The sandwiches came, and I took one. After a couple of bites, I noticed something crunchy. It was cashews. Immediately I started to get hives on my hands, then my ears, then my tongue. And I thought, “Here it comes.”

Next page: “They’re going to find me dead in this bathroom!”

On March 21, Niagara MP Dean Allison introduced Motion 546 to the House. It argues that the federal government should take greater measures to ensure Canadians with anaphylaxis maintain a high quality of life. “My greatest goal with this motion is to increase awareness,” said Allison.

The motion builds on the momentum created by regulations passed in February that require food and beverage manufacturers to clearly label top allergens and gluten on their packaging.

Motion 546 argues for:

• A nationally coordinated information campaign to educate Canadians and boost levels of knowledge and understanding among health care providers, “Health Canada can and should play a key role in providing accurate and targeted information to groups such as medical professionals, first aid and emergency training providers, child care workers, food service providers and to those who work in the hospitality industry,” said Allison. 

• A commitment to research. “We, unfortunately, do not yet understand why the disease is becoming so prevalent, how to stop this upward trend or how to prevent food allergies from developing,” said Allison. 

• A transportation policy that makes the use of public transportation safe for those with anaphylaxis. Allison argued that airlines should have to consult with the anaphylaxis community to develop policies to effectively reduce some of the risks. “A long-term financial and program commitment is necessary within Canada, and standardized and evidence-based guidelines for diagnosis, management and treatment of food allergy and anaphylaxis need to be developed. 

• ‘May Contain’ labeling rules. Allison acknowledged the new labeling regulations announced by Health Minister Leona Aglukkaq in February, but argued that more can done, including formalized rules on “may contain” statements on food packages. He also promoted the development of an “allergy aware” symbol that would indicate that an item has been reviewed to be found free of major allergens. 

The debate in the House of Commons lasted an hour, with MPs from each opposition party speaking in favour of Allison’s motion.

Allison began his speech by acknowledging non-profit group Niagara Anaphylaxis Support & Knowledge (NASK), which has been promoting the motion initiative.

Allergic Living interviewed NASK representative Debbie Bruce to learn more about the implications of the motion and where it goes from here.

Allergic Living’s Q&A with NASK Debbie Bruce

Q. What is the importance of this discussion in terms of getting recognition for anaphylaxis?

The discussions led to a new level of appreciation for the seriousness of anaphylaxis and the many challenges of avoiding risk. There was a stated commitment by all four political parties to work towards solutions outlined in the 5 points raised in the motion. There is a new found focus within Health Canada and other government departments relating to allergy issues.

Q. How does the election campaign affect the future of this motion?

The timing of the election is unfortunate for the motion as it is was lost along with the other bills and legislative agenda. The good news is the debate of the motion is on official report (Hansard) and can now be referred to when speaking in Ottawa to MPs and to Health Canada. With continuous reference to the 5 points, the MPs’ debate has put on record many significant matters and an approach to working towards solutions. (See the debate here.)

Q. Are there things motion supporters can be asking of candidates in their ridings?

Now is the perfect time to be speaking to the electoral candidates in your community. When they knock on your door – tell them how important Anaphylaxis Motion 546 is to your family. Talk about some of the challenges you face trying to keep your loved ones safe. Ask if you can count on their support. Don’t hesitate to phone their campaign offices. The candidates want to know what is important to their constituents.

Q. What are the next steps on this initiative?

Niagara area MP Dean Allison has committed to re-introducing motion 546. When Parliament reconvenes, Mr. Allison and families involved with the Canadian Anaphylaxis Initiative will work with new MPs and the returning MPs to raise awareness for the new motion. We will work with MPs to ensure the anaphylaxis motion is fully debated and acted upon within Ottawa’s bureaucracy.

For more information see:

http://www.nask.ca/events.html

In a few short years, there have been huge strides in restaurant awareness of allergies and intolerances. Welcome to the brand new era of dining out safely.

One day in my early 20s, I went to brunch with friends at a new restaurant in a tony section of New York City. I didn’t call ahead to alert the manager to my food allergies, nor did I tell the server of my severe allergies to nuts and fish. My purse held a few antihistamines and my asthma rescue inhaler, but no emergency epinephrine auto-injector. It was the roll of the dice approach to food allergy management – and it didn’t pay off.

I ordered the plain pancakes. An inviting triple stack arrived, dusted with powdered sugar and a sprinkle of something quite unexpected. Pistachios had been artfully arranged on the plate and tucked between each layer. Immediately I flagged down the server, telling him I was allergic to nuts and couldn’t eat the pancakes. He whisked the plate away, returning it seconds later.

How did they remake an order of pancakes that fast? They didn’t. Peering under the top pancake, the pistachios were still there. The server had just scraped off the garnish and top layer. I flagged him down again: “I cannot eat this. No pistachios – anywhere,” I intoned, as my friends happily ate.

The same pancakes arrived a third time; between the second and third pancakes was still a sprinkle of pistachios. It was like the movie Groundhog Day: I kept getting the same wrong order over and over. The scene ended when the server stopped approaching our table. Instead, he glared at me, the “crazy” customer, from the safety of the bar.

I hailed the manager, who halfheartedly offered to make a fresh batch of nut-free pancakes. I declined. By now I didn’t trust the management, staff or kitchen to serve me anything safe. I left feeling demoralized, distrusting, upset with them, upset with myself and hungry. I never went back.

That was then; this is now. Recently, out with friends, we settled on a restaurant that I know takes the needs of the allergic diner seriously. The online menu had at least three dishes that appeared safe; this was easy to confirm by phone with the restaurant manager. The manager assured me the chef would gladly handle my food allergic needs, and they would be happy to welcome me.

Next Page: Changes in the way allergies are approached

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

By Gwen Smith and Dory Cerny
Allergic Living magazine

If you have a child with peanut allergies, other parents will say to you: “Nobody was allergic to peanut butter when I was a kid.” If a cat swishing through a room starts you wheezing, you’ll get asked: “How come so many people have asthma?” Both are reasonable questions, variants on the broader million-dollar one: “Why do so many people have allergies today?”

If you want an easy answer, allergy experts will simply say they don’t know. But what they mean is – they don’t know entirely. The fact is that scientists understand a lot more about allergic disease than they did a decade ago. There are still gaping holes in their knowledge, but as they continue to fill in the pieces to the puzzle, what they are finding is fascinating and often surprising. In the following investigation, Allergic Living examines what science knows so far about why allergies occur.

In the Beginning

When a baby is born, its immune system is a work in progress. “You’re born with a naïve, allergic-skewed immune system,” explains Dr. Michael Cyr, an allergist and immunologist at McMaster University in Hamilton, Ontario. This is what scientists call the Th2 mode.

During the first days, weeks and months of life, as the baby comes into contact with various germs, bacteria, viruses and infection, the system is supposed to start learning to distinguish between what is harmful and what is benign.

Some allergists liken the emerging immune system to a toggle switch or a reset button: we’re all born in that Th2 mode and then that first bout of sniffles at eight weeks or the ear infection at four months begins to “switch” the immune system over from Th2 to Th1 mode or fighting bacterial infection mode.

But in the person with a genetic inclination to allergy, something misfires and the switchover doesn’t happen properly. Cyr, who’s a researcher with AllerGen (the Allergy, Genes and Environment Network), says that why this process happens easily for some people but not for others remains unclear, and may depend on a confluence of factors.

The young child who doesn’t get switched over is now atopic – predisposed to developing an allergic response to a trigger such as cat dander or ragweed pollen or peanuts. After breathing in or consuming one of those, the child’s immune system creates allergy antibodies – specifically Immunoglobulin E or IgE antibodies – to guard against offending trigger. The next time the immune system encounters it, the IgE will go on the defensive, setting off a cascade of allergic symptoms.

Though genetics are a large contributing factor to whether a person becomes allergic, scientists haven’t found one specific allergy gene. “It’s becoming clear that it’s not a gene, it’s a whole series of genes,” says Cyr. Something has changed to increase the number of us who are developing allergies, says Dr. Dennis Ownby, a professor of pediatrics and the head of allergy and immunology at the Medical College of Georgia in Augusta.

“What seems to have happened over the last three decades, at least in developed countries, is that genetic ability [to be allergic] has become more prominent,” he says.

Just how much have allergies and asthma grown? Figures from the World Allergy Organization reveal the global prevalence of asthma has increased by an astounding 50 per cent every decade for the past 40 years. In North America today, leading allergy organizations estimate that about three million Canadians and 20 million Americans have asthma.

In the past decade alone, the prevalence of food allergy, once an uncommon condition, has skyrocketed. The Food Allergy & Anaphylaxis Network, the U.S. education group, estimates that about 12 million Americans – 4 per cent of the population – now contend with the disease. The Canadian rate of food allergy is estimated to be comparable. Peanut allergy alone has doubled in young American kids.

In our modern world, allergy has spread like wildfire. Scientists are certain that genes alone can’t be the whole reason why. “The genetic pool does not dramatically change over decades,” notes Cyr. “So it’s obvious there’s something else going on.” And that something appears to be our environment.

Getting to the Dirt

While references to asthma date back to ancient Chinese medical texts, the real story of our modern understanding of allergy begins in earnest in 1989. It was a heady year, with the fall of Berlin Wall and the beginning of the opening up of the former East bloc. A team of German scientists decided this presented a great opportunity to compare the prevalence of asthma in Leipzig (former East Germany) and Munich (former West Germany).

Here were two highly similar gene pools of people who had been living in very different societies and conditions. “At that stage, everyone, including us, believed that air pollution was causing asthma and allergies,” says Dr. Erika von Mutius, who was then a young pediatrician and team leader, and who today is a professor and head of the asthma and allergy department of Munich University’s Children’s Hospital.

When the findings began coming back showing that there was considerably more asthma in modern, Western, hygienic Munich than among the study group living in Leipzig with its billowing factory smokestacks, the researchers were incredulous.

“It was so opposite what we’d anticipated,” recalls von Mutius on the phone from Munich. “We didn’t believe it, so we thought it was a mistake in data entry and re-entered all the data.” But the data were right, and the results were published in 1992.