Imperfectly Free

Here's an example of how the non-big-8 segment of the food anaphylaxis community is underserved: a product release announcement from a startup firm whose market focus is the allergy community:

“This summer, we’re putting the fun back in the freezers of millions of food allergy sufferers with a delicious frozen dessert that consumers can enjoy scoop after scoop,” said Kevin Murphy, CEO of Incredible Foods. 'Finally, food allergy sufferers can stop taking a back seat to ice cream lovers by enjoying a frozen dessert of their own, one developed specifically with their dietary requirements in mind.' ”

It's a fine idea and the press release looks like they're trying to cover everything: gluten free, vegan, non-GMO.

The people who suffer anaphylaxis from non-big-8 foods have to stay alert for something else, though. Let's look at the ingredient list on one of the Perfectly Free products.

What type of modified starch is this? Is it corn starch? Potato starch? Tapioca?

What are these natural flavors?

This business is cutting itself off from ten percent of its target market because it fails to disclose a complete list of ingredients. It seems to be very well intentioned but the leading food allergy charities simply aren't raising awareness that people who are anaphylactic to corn or potatoes need to know specifically which type of starch a product contains.

People who are anaphylactic to anything other than big 8 food allergens avoid products with vague additives statements such as "natural flavors" because there is no way of knowing whether the product will trigger an anaphylactic reaction. Even if we write to the company for a complete list of ingredients, the governing law on food additives allows the manufacturer to change formulas at any time without notifying the public. The only way to stay reasonably safe is to avoid the product.

I don't care whether something is non-GMO or vegan. I care whether it could send me to the emergency room. Wrote to the PR firm last week to share these concerns; haven't received a response yet. Here's hoping the message gets through. We aren't demanding that every allergen known to medicine gets removed from this type of product. We're willing to read the fine print--we just need fine print that's comprehensive enough that we can tell whether a product contains our allergens.

Communion and Allergies

A recent BBC pieces entitled "Vatican outlaws gluten-free bread for Holy Communion" is a bit misleading: this is not a new teaching. The BBC report fails to note that the doctrine does not prevent people with celiac disease or wheat allergy from taking communion.

A 2012 statement from the United States Conference of Bishops affirms that Catholic doctrine prevents complete removal of gluten from communion wafers, but permits priests to accommodate health problems by administering communion in the form of wine only, omitting the bread. The statement includes guidance on avoiding cross-contamination and also covers alcohol intolerance, which can be accommodated by letting alcohol evaporate from communion wine (which would normally be 1% alcohol).

No guidance is offered for accommodating people who are anaphylactic to grapes.

5 Ways to Counter Bad Advice about Food Allergies

All of us in the food anaphylaxis patient community have dealt with the relative, the friend, or the coworker who thinks they understand our safety needs better than we do.

Never mind that this person has no medical training, they're going to set us straight.

Riiight...

This post isn't about the first conversation. You've already explained anaphylaxis, you've answered their questions, and you're asking for as little accommodation as feasible. Yet eating is a social activity and because of that you sometimes have to raise the topic of safety. It's the only way you can attend the conference or agree on a restaurant.

This post is about the person who has forgotten nine-tenths of what you already told them, the one who mistakes your plainspoken description of medical need and pretends they received a request for advice.

During my early twenties sometimes the exasperation showed. A man I had been dating suggested we go to a vegetarian bakery. We had already held the full conversation about anaphylaxis on several occasions. I had questions about this bakery because some vegetarian places substitute fruit juice extracts for sugar; he stonewalled. When I repeated the questions he took a patronizing tone. "You don't understand," he insisted. "It's healthy!"

To be told that I didn't understand my own health was a bridge too far. This time I shot back, "No, YOU don't understand. I have a rare medical disorder. What's healthy for you could send me to the emergency room. You're not a doctor and you don't know what you're talking about."

It should come as no surprise that we stopped dating soon afterward.

Responding to such a person is easy. The challenge is to get the point across without an outburst.

That happened a quarter century ago. Since then time has taught a few things.

1. They may not comprehend this is medical necessity.

We live in a world where lying about a food allergy is socially acceptable. My opinion of people who fake food allergies is on par with my opinion of people who steal handicapped parking spaces. Yet liars do exist and those of us who have the real thing get mistaken for fibbers, especially if our anaphylaxis gets caused by an unusual allergen.

On a practical level, one way to minimize confusion is to keep conversations about food preferences completely separate from food allergies. When someone begins to blur that distinction with a segue about food fads, halt the conversation to emphasize that the paleo diet is a choice--anaphylaxis isn't.

Suggested phrasings:
"I don't get to take a day off from this."
"If I cut corners I end up in an ambulance."

2. They probably don't understand the seriousness.

A surprising number of people mistake epinephrine for routine maintenance medication: take a shot, wait an hour--as if it were no big deal. If you get anaphylaxis to a non-big-8 allergen they might imagine it exists in some nebulous middle realm, an imaginary anaphylaxis lite.

These impressions often come from learning something about anaphylaxis that was either out of date, incomplete, or misremembered. The most effective way to shut down someone who thinks they know more than they do is to jump even further down the rabbit hole and talk their ears off.

Suggested wonkery:
Regale them about biphasic reactions.
Delve into the rising rate of hospital admissions after emergency treatment for anaphylaxis.
Explain that the severity of prior anaphylactic episodes does not predict the chance of a fatal reaction.
Discuss the rising cost of epinephrine auto-injectors.

Then ask how much they are willing to chip in toward your insurance deductible on an ambulance ride, ER treatment, and replacement auto-injectors.

3. They don't grok cross-contamination.
People give us odd looks and sometimes challenge us when we explain that trace residues on counter tops and serving utensils are hazardous.

When it comes to primary school settings one way to get agreement is to frame this in terms of the difficulty of getting children to wash their hands. Every parent knows that problem.

Among adults it is usually effective to describe firsthand experiences with cross-contamination reactions. A few individuals will still be dubious about cross-contamination as a phenomenon; citing sources persuades the ones who are willing to look at evidence.

Suggested solutions:
Reference the UK Food Standards Agency guidelines regarding cross-contamination precautions.
This Irish guide to safe allergen management in the catering industry includes a useful breakdown of cross-contamination risks from contact with contaminated equipment, with unwashed hands, and from direct contact between allergens and other foods, see page 19.
Explain a case study in the medical literature where the physician concluded that trace exposure from contaminated serving utensils caused a near-fatal allergic reaction.

4. The five stages of grief might explain their irrational behavior.
Other food allergy bloggers have discussed this as a way of understanding their own responses to getting diagnosed with anaphylactic allergies. It may seem strange to apply this framework to allergies, but an orthopedic surgeon who used to treat me remarked how he often saw his patients work through those stages in response to hand and wrist fractures.

Briefly, these are the stages:
Denial
Anger
Negotiation
Depression
Acceptance

Those first three--denial, anger, and negotiation--describe most of the social friction that surrounds anaphylactic food allergies. It is intriguing to speculate that this could be a natural sequence of human response to unwelcome news; maybe it offers a clue to understanding people who push back against requests for accommodation.

On the one hand, this framework humanizes people who behave in difficult ways. Yet I am not going to risk the equivalent of Russian roulette to accommodate someone else's feelings. That's out of the question. Nor is it reasonable to put the burden of someone else's emotional response on me: anaphylactic food allergies are a recognized disability under the ADA. I've got to manage this condition probably for the rest of my life. That makes me the wrong individual to offer support. No matter how polite a face I put on, inwardly I'm thinking, so it bothers you that much to accommodate this at one event--here's the world's smallest violin.

This framework has been useful is in recognizing that someone's grating conduct isn't necessarily personal. It does me no good to take offense; righteous indignation is counterproductive. Their head has gone to a bad place. Maybe they will unstick their head from that place--that's their journey. In the meantime the framework offers me a way to disengage from them and refocus on tangible priorities.

Suggested solutions:
In places where the ADA applies people with anaphylactic allergies have rights; there are ways to exercise those rights. Within educational and workplace settings that usually involves creating a 504 plan.
The nonprofit groups FARE and FAACT offer advocacy resources for people who have food allergies.
Within informal social and family settings it often helps to identify the problem such as responding to attempts at negotiation with, "This is not a negotiation." If the person doubles down after being shown reliable sources, then the only two feasible options are to enlist the support of advocates or to curtail the difficult individual's ability to cause problems.

5. Some people won't see reason.
"There are people that if they don't know, you can't tell them." - Louis Armstrong

Last autumn a Washington Post advice column ran a letter from a worker who found peanut butter smeared underneath their desk after they asked a colleague to accommodate their allergy needs. A month later the column ran a follow-up: the perpetrator confessed when the possibility came up of getting the police involved. Management fired that perpetrator immediately.

An even more serious instance in the UK led to a manslaughter conviction and a six year prison term for a restaurant owner who violated numerous food safety regulations and continued misrepresenting ingredients after a customer was hospitalized, until a second customer died from an allergic reaction and law enforcement intervened.

Education is a wonderful thing, but people do exist who fail to improve with education. One of the hard facts about food anaphlaxis is that--even within families--some people never adapt and it drives the family apart.

No, I can't have just a little bit.
No, I can't make an exception. 

Yes, it's that serious.

Nobody likes to repeat themselves endlessly, especially about essential medical precautions. When someone else fails to accept the basics after fair efforts at communication, eventually the only solution is to regard that individual as unsafe and prevent them from causing real harm.

A News Error and How to Correct it

You may have seen a warning on social media today that two new Starbucks beverages have been mistakenly billed as dairy-free. A local CBS affiliate ran the mistaken headline Starbucks releases 2 new dairy free drinks! Which as of this writing looks like this on the station's website:

This has spread rapidly with some pages on Facebook attributing the error to advertising. Starbucks is not to blame as far as I can tell; their website discloses ingredients on both products. It appears that this was a well-intentioned error on the part of a CBS station.

Quoting the Starbucks website on both products, boldface added for emphasis:

Iced Coconutmilk Mocha Macchiato:
White Chocolate Mocha Sauce [Sugar, Condensed Skim Milk, Coconut Oil, Cocoa Butter, Natural Flavor, Salt, Potassium Sorbate, Monoglycerides], Caramel Sauce [Corn Syrup, High Fructose Corn Syrup, Sugar, Butter, Heavy Cream, Water, Nonfat Dry Milk, Natural Flavor, Salt, Distilled Monoglycerides, Soy Lecithin, Caramel Color]

Iced Cinnamon Almondmilk Macchiato:

Caramel Sauce [Corn Syrup, High Fructose Corn Syrup, Sugar, Butter, Heavy Cream, Water, Nonfat Dry Milk, Natural Flavor, Salt, Distilled Monoglycerides, Soy Lecithin, Caramel Color], Cinnamon Dolce Topping [Sugar, Cinnamon, Salt, Extractives Of Butter (Milk) And Other Natural Flavor].

This type of thing is confusing and frustrating but it is also not too difficult to correct. After confirming the error I looked up the station's telephone number, informed a staffer at their news desk of the error, and sent an email with the reference links. The CBS staffer (who was not the author of the article) was professional and welcomed the correction.

It took about five minutes to check the sources, place the call, and follow up by email. Have requested a correction to the piece, citing health concerns if people who suffer dairy allergies get misinformed by the original headline.

Recent as in 4 Years Ago

Recent is becoming a red flag on the Internet. This morning I sat down with coffee to check the Google News alerts--like many people I've set up a few specific interests--and one prominent headline published yesterday by the Cleveland Clinic looked interesting: Is Your Child Being Bullied Because of Food Allergies? 5 Tips.

Notice how the piece frames this as a growing problem and presents recent evidence from a respected scientific journal:

"Bullying around food allergies is a growing problem, Dr. Hong says. A recent study published in the journal Pediatrics found about one-third of children with food allergies experienced bullying because of their medical condition."

Except that's misleading. Click in on that linked study and read the date.

The Cleveland Clinic presents no other evidence. So if you have followed the topic for a few years and were worried about bullying nearly half a decade ago, you can come away from this piece thinking that all the awareness and outreach of recent years has been worse than useless.

If that were the most recent science available on the topic of allergies and school bullying it might be easier to excuse. I would love to learn about this piece published in the journal Pediatric Allergy, Immunology, and Pulmonology in March 2016--but unfortunately I don't have the subscriptions to access it. Another interesting study is this review article also from 2016, but Elsevier is the publisher so all I can access is the abstract. A similar dilemma surrounds this other research from 2015.

Actually all Cleveland Clinic has done is recycled an old study and posted a few quotes from one of their own staff physicians--identifying her by her professional title but, again, leaving the reader to to the legwork in discovering that there might be a tiny conflict of interest. And the study they cite happens to be the most recent thing where the full text is available for free online (which raises doubts how many journal subscriptions they maintain).

To be fair, the clinic itself is probably fine and bullying probably hasn't disappeared. I'm challenging their social media strategy, not their competence. Every organization likes to get into Google News.

But telling people their problems have worsened and massaging the evidence to support the claim isn't the best thing to do. Especially when the target audience has plenty of well-founded worries and sometimes deals with complaints that call them over-cautious.

In the old Disney film Snow White there's a scene where the dwarfs want to eat a pie, and when they're asked how long it's been since they washed their hands they try to evade scrutiny by saying "Recently!"

The hands, when checked, are quite dirty.

This hasn't been the only occasion this month where I've seen website claim something was recent as a way of fudging so long ago that it may have lost relevance. The other time had nothing to do with healthcare, though.

I hope that bullying has been on the decline with better awareness and response strategies. But until sites disclose specific dates I'm going to make it a habit of clicking links to check how recent? One expects that sort of evasion in cartoon comedy. It's a disappointment when this happens in settings that aspire to be more serious.

6 Tips to Communicate Rare Food Anaphylaxis

"Tell them you're allergic to Kool-Aid."

- Kona Lowell, in Don't Pet the Sharks: Advice, Observations & Snark from the Big Island, Hawaii

As bad as a peanut allergy.

The advice in that quote about faking an allergy to Kool-Aid is part of a list of tactics to repel door-to-door religious solicitation, in between a suggestion to light fire to their handouts and pretending to vomit pea soup. On the one hand it's a sarcastic reference to a real tragedy and on the other hand it's absurd: who in the world is allergic to Kool-Aid?

I am. 

This isn't easy to communicate. Even if you head over to the Kraft website to look up a product it hardly helps. Up there, top of the right hand column, is a prominent allergen statement. The problem is that really refers to the most common allergens that receive special protection under law. Yet it doesn't state "big 8 allergens" or even "major allergens." It just says "Allergens: None."

Which leaves me looking as absurd as the woman who sets fire to a religious tract.

As you have probably heard, 90% of serious food allergies occur to one of eight foods. But what about the rest of us? We have to read down in the fine print. Our allergens might not even get listed by name. 

So here's this additive statement mentioning natural flavors. What sort of flavors would that be in Kool-Aid?

It shouldn't be hard to guess Kool-Aid flavors. Just in case it is, here's the front of the packaging: Kool Aid Tropical Punch. I happen to be anaphylactic to both cherries and grapes. Anaphylaxis is the most severe type of allergic reaction--it's the same medical emergency that other people get to penicillin or bee stings or peanuts. So while most people view this as perfectly safe, to someone with my immune disorder it's more like Russian roulette in a sugary powder.

Of course hardly anyone realizes fruit allergies can be this dangerous unless they've gone to medical school. The author of that comedy book can be excused for not not knowing--here's wishing Kraft made its website more clear--maybe someday awareness will improve.

In the meantime we have to make ourselves heard and believed over the din of jokesters, food faddists, and allergy fakers. It's a signal-to-noise ratio problem. There isn't any cure on the horizon for Oral Allergy Syndrome anaphylaxis (or for the other less common types of food anaphylaxis) and the only way to manage it other than ambulance rides and epinephrine injections is to avoid the allergens completely.

So here are my tips for communication. To be clear, I'm not a healthcare professional--I'm a patient who has lived with OAS anaphylaxis for 29 years. That's enough time to hone a few strategies.

1. Rebranding

Everyone knows that liars say I'm allergic to XYZ. People look out for that phrasing; it raises suspicions. It also creates confusion about the severity of an allergy. For example Oral Allergy Syndrome causes mild reactions in the vast majority of patients. Only 1% to 2% of OAS cases escalate to anaphylaxis, so even when someone believes me they may think nothing worse can happen than a little itch or a rash.

So here are other ways to start the conversation:
I have a rare medical condition.
I have a rare immune disorder.

Both of these statements are true. They also start off the conversation on a better foot because they open the chance for back and forth before any of the prejudices about allergies intervene.

2. Describing
This is a tricky part because people who disbelieve food allergies often mistake us for drama mongering attention seekers. So a description of the symptoms at this early stage sometimes backfires.

Depending on the listener's vocabulary I'll say either of these:
The medical term for it is anaphylaxis.
You know what peanuts do to some people? I get the same thing, except it's [name the food].

3. Reinforcing
Return to information the listener already knows. Then supplement it.

A particularly effective phrasing has been:
You know how 8 allergens cause 90% of deadly food allergies? I'm part of that other 10%.

At this point yes I do say "allergy." The word has to come into the conversation at some point. The important thing is to lay the groundwork before introducing it so that people are prepped to recognize that this isn't the typical allergy conversation.

Often followed by:
Yeah, I have to carry an Epi-Pen. And I end up in an ambulance if things go wrong.

4. Humanizing
You may notice a pause, a double take, or a look of surprise. A lot of people are still getting used to the idea that there are 8 common food allergens rather than just peanuts. Now here we are--the other 10%--something new to worry about. This can't be welcome news.

Apologizing would be a tactical mistake. An apology could give the impression we have a choice about this, which we don't. By all means use your best manners. Yet the usual followup to I'm sorry is It won't happen again. I can't make that promise. What I can do is humanize the dilemma.

Everyone winds up unlucky in something. Be firm about your boundaries but make the best of it.

A slight grimace, a tilt of the head, and an affable tone usually goes over well:
I didn't ask for this.
That's the hand life dealt me.

5. Educating
The rare causes of anaphylaxis aren't standard curriculum outside of medical schools. So be prepared for basic questions even if you're having this conversation with a registered nurse or a graduate of a distinguished cooking school.

Advance preparation makes all the difference here because the information you need to communicate might not be in the obvious places. As you can see from the earlier example, a manufacturer website might undermine your credibility. As of this writing the leading nonprofit groups FARE and FAACT do not specify anywhere on their websites that Oral Allergy Syndrome can progress to anaphylaxis. So instead I bookmark a page at the American College of Allergy, Asthma, and Immunology and scroll down to this paragraph:

The ACAAI usually offers plain English descriptions for rare causes of anaphylaxis, such as their page for beef and pork anaphylaxis and the lone star tick. Whatever best explains your condition, know where to go before the conversation begins and make sure it's a reputable site.

Also be ready to explain the specifics of what you need to be safe. People are creatures of habit; even if they're trained in protocols for peanuts and the other common allergens it rarely sinks in that cross-contamination and trace exposures are dangerous for us too unless we tell them.

At this stage, feel free to specify the gory details if you have to. I don't steer the conversation in this direction, yet when someone still asks "Can't you just have a little?" sometimes the only remaining option is to be blunt:
What's likely to happen is I'll end up in the emergency room. The worst case scenario is I die within minutes right in front of your eyes.

At this point any normal person nods and agrees "It's not worth it." Gauge the reaction, though: a few individuals never wrap their heads around this. Be alert to the possibility of meeting someone who has to be worked around.

6. Offering
It helps to be proactive whenever possible. Providing my own food is the best way to be safe, although I've learned from experience that safe foods often need to be tightly controlled. Cross-contamination can happen in seconds. At events where foods are provided for attendees it's reasonable to contact the organizers during the planning stages and request compensation for bringing one's own food; offer a budget in advance and save the receipts. Be sure to raise this topic early! The organizers may be relieved to have one less thing to worry about when the proposal gets made in advance, but no one wants to be surprised with a request for money on the day of the event.

This is a great approach when it's feasible because it reinforces credibility and earns buy-in. In a better world I wouldn't need to differentiate myself from food allergy fakers, but the one thing the fakers don't do is put forth extra effort. Once people see that I actually make my own marmalade they know cross-contamination is a real problem. Then the times when assistance is needed they're more willing to step forward.

Proactive offers might not always work for any number of reasons. The Americans with Disabilities Act does recognize anaphylactic food allergies as a disability because it affects a major life activity. So you have rights in schools, workplaces, and public accommodations. That legal protection does not apply to parties at private homes, family gatherings, or neighborhood potlucks. Good communication helps to navigate those situations.


Finally, best wishes to you. This is my best attempt to write up the advice that I wish someone had handed me when this journey with anaphylaxis began. Here's hoping it serves you well.

Salad Days

If you have been following Canadian news lately, you are probably aware that the food allergy community is protesting a recent announcement from McDonald's Canada that the chain plans to include almonds in its salads. Here's an open letter that ran in the Toronto Globe & Mail. Afterward the CEO of McDonald's Canada agreed to meet with representatives from the food allergy community.

Nut is a confusing word because it refers to several things that are only distantly related. Peanuts grow on a little vine in the ground; those are a type of legume--closely related to peas and lentils. Almonds are a type of tree nut; tree nuts belong to several botanical families. Almonds are what McDonald's are planning to add to its Canadian salads. More about almonds later.

Now let's introduce a different element to this conversation--another allergy that isn't nuts. I know what it means to stop eating restaurant salads because my own allergies have forced me to stop eating salads too, not just at McDonald's but at all restaurants. No food allergy charity has been advocating on behalf of people who have my allergy even though it would be simple assist us. I am not allergic to any vegetable either; the problem is cross-contamination. A simple protocol that takes just one to two minutes using equipment already in any kitchen could make salads safe to eat again, but no one is training restaurant staff in this procedure.

I am not asking McDonald's or any other chain to take my allergens off its menu. Let's make this clear; this request is much more modest.

It would be useful to be able to contact Food Allergy Canada or FARE or FAACT and get a handout in their letterhead that I could hand to restaurant staff--or at the very least a guidance page on an official website for food service workers that spells out how to accommodate my needs. Any of the major charities could publish this. None does.

The procedure is straightforward: wash trace residues of fruit off the cutting surface and the implements that handle my food. Use soap and water. This isn't difficult but it is absolutely essential.

Can fruit allergies really be as severe as nut allergies? Yes they can. Don't take my word for it; here are two examples from the medical literature of patients who suffered anaphylactic shock because food service workers used contaminated implements. These cases happened seven years apart. Both patients were having dessert and, because they were responsible and careful about managing their condition, neither ordered a dish that contained their allergen--yet the implements used to handle their food contained trace allergen residue after serving other customers.

Read the results for yourself:

In May 2010, after an accidental ingestion of kiwi hidden in vanilla ice cream (it is most likely that a small amount of kiwi fruit was on a spoon used for scooping ice cream) the patient developed shortness of breath, swelling and numbness of tongue, hot flashes, dizziness and temporary loss of consciousness, involuntary urination and defecation... A small amount of the allergen left on an ice cream scooping spoon can result in a full-blown life-threatening anaphylactic shock.

A different case from 2003:

We present the case of a 29-year-old white woman who had several episodes of severe anaphylaxis after consumption of kiwi fruit, including 3 episodes of allergic shock with loss of consciousness and subsequent hospitalization. For the first 2 episodes, the symptoms started shortly after ingestion of pure fresh kiwi preparations without concomitant consumption of additional foods, pointing to the causative role of kiwi. Most remarkably, in a third episode anaphylaxis had been elicited by minute amounts of kiwi left on a knife that was subsequently used to prepare a strawberry dessert served to the patient in a restaurant. 

Both of these patients lost consciousness and one of them stopped breathing.

Subsequent medical testing confirmed the severity of their allergy and the cause; these cases appeared in peer reviewed scientific journals.

This is not a blame game. The food service workers are not in the wrong; it would not be fair to point fingers over not following a safety procedure they had never been taught. Those two patients are not at fault either--no organization has developed cross-contamination guidelines for anaphylactic fruit allergy patients. You have to be adept at searching the medical literature to locate these cases because the food allergy charities overlook anaphylaxis to fruit.

The "nothing found" search result in the image at the top of this post demonstrates how neglected this segment of the community is. Severe reactions to the foods in those medical journal case studies are usually diagnosed as anaphylactic cases of Oral Allergy Syndrome. A keyword search for "oral allergy syndrome anaphylaxis" turned up nothing at the Food Allergy Canada website.

Let's refine the search terms. Both of those two instances were reactions to kiwi, which is the best documented of the OAS anaphylaxis allergens. Kiwi is the allergen that caused both of those near fatal examples. Yet search for "kiwi anaphylaxis," no results again:

The best that further searches could scrounge from the Food Allergy Canada site was an incidental result for a "fruit anaphylaxis" search that turned up an unrelated page about sulfites.

The official Canadian government website for the Canadian Food Inspection Agency is only slightly more useful; it acknowledges that Oral Allergy Syndrome anaphylaxis exists. Compare that brief mention against the same agency's vigilance with nut allergies. To be fair to the public servants, nut allergies receive enhanced protection under Canadian food safety regulation; OAS does not.

Among general audience websites the absolute best summary I have managed to find is hosted by the American College of Allergy, Asthma, and Immunology, which devotes a full paragraph to anaphylactic cases at the end of its OAS page. That paragraph outlines symptoms to notify an allergist about a potentially worsening case, it cites statistics on the percentage of OAS cases that develop into anaphylaxis, and it cautions about carrying an epinephrine auto-injector.

Yet even at the best site of its type, not one word about cross contamination risks or preventive protocols.

Before this goes any further, a few words of reassurance: Oral Allergy Syndrome is a mild condition for most people. Only one to two percent of OAS cases progress to anaphylaxis. So nearly everyone who develops OAS experiences nothing worse than a little itching and swelling. So unless you happen to be in that small percentage of cases that go anaphylactic, you will not have the same set of risks and worries as a person who has peanut allergies.

The problem is that if you do fall into that small percentage whose OAS is as severe as nut allergies, no one tells you very much and nobody advocates for you.

I do not happen to be allergic to kiwis; I am allergic to apples. I am also anaphylactic to almost the entire Rosaceae botanical family. Birch pollen-Rosaceae cross-reactivity is one of the best known OAS manifestations. In biomedical jargon, OAS is an IgE-mediated allergy. That means any OAS allergen can cause anaphylaxis. So because my allergy is anaphylactic I run basically the same risk from contaminated serving implements that the patients in those case studies were running: that could happen to me--and although some individual cases are too severe for this precaution, a simple soap and water washing can make a knife safe to use on my food. This isn't just about myself, of course--there are thousands of other people with the same immune system malfunction.

It would not be too difficult to design flexible safety protocols for the less common allergens because for most of us those protocols are only slight variations on the protocols already used to prevent seafood or wheat contamination for those more allergies.

Yet the normative response to people like myself is to say "Carry an Epi-Pen," then shrug and walk away. That is not good enough; it makes no sense to manage a medical condition this dangerous on a crisis response basis. Avoiding foods that contain our allergens is only a first step. We are left to fend for ourselves in terms of discovering what cross-contamination is and how to prevent it through trial and error. This needs to change.

I eat salads at home. After all, I am not allergic to any vegetable. I stopped eating all restaurant salads after a severe reaction. The only safe assumption is that every professional kitchen is contaminated because nobody is teaching anyone how to prevent this risk.

People who have the more common types of food anaphylaxis often carry restaurant cards to alert staff how to accommodate them. That approach does not help people like myself because no one in the kitchen has been trained in what to do when they see my allergen list. The instructions have not been written.

This situation persists even though food anaphylaxis is covered under the Americans with Disabilities act in the United States and under disability protection laws in Canada.

Remember how I mentioned earlier that tree nuts belong to various botanical families? Here's the kicker: almonds are in the Rosaceae family. No other tree nut is in the Rosaceae family, which is mostly fruits and berries. As the ACAAI website linked above mentions, almonds are also a recognized OAS allergen. By pure chance I am not allergic to almonds. Every case of OAS has quirks of its own and almonds, along with strawberries, are the only two foods in the Rosaceae family I am able to eat.

So imagine sitting here watching this advocacy campaign to make McDonald's salads safe for allergy sufferers--the first time I've ever seen a campaign that touched on OAS anaphylaxis in any way. Except they aren't doing it because of the OAS; they're doing it because almonds are a tree nut. People who get either type of allergy can have an immune response to almonds.

Nearly ten percent of the food anaphylaxis community has a life threatening immune reaction to something that is not a common allergen. We constitute a significant portion of the community, yet we get overlooked.

I have had to avoid all restaurant salads since 1994. That's a long time to wait in silence while the charities advocate for other patients.