Wednesday, June 20, 2012

Re-Branding Food Allergies

So Monday's post got off into the absurd...probably because I got depressed while writing it. It started out as a serious post about polarizing issues and how they relate to food allergies, and veered into science fiction.

It's easier to talk about ray guns than solutions. I did do a little reading about de-polarizing hot topics, just to see what the experts say. All of them tend to start with the same point:

Acknowledge the concerns of the other
side and admit where they are right


It's pretty easy to sum up the thing that the disapproving, polarized 50% say about the food allergy community:

"Most of them make up allergies"

This is where things get hot, and where I really earn my bitch title because...for the most part...I agree.

I am frankly tired of making the rounds of the chat boards and seeing mothers say things like "my Susie gets a stomach ache and the sniffles every time she drinks milk. How do I get a ban at my school?" And I'm tired of reading the laundry lists of allergies diagnosed by test only, handed to the mother who eliminates milk, soy, peanut, eggs, wheat, corn and rice without a blink.

One interesting thing I've realized about my blog: because I don't make money, I really can say whatever I want. Too many allergy magazines and chat boards have an ulterior motive: separate the frightened from their dollars, either through readership or direct product purchases. That means they have no interest in telling people their children really don't have food allergies. The more the merrier, and often the moms who are the most over the top are also the most likely to want all the bells and whistles (the magazine subscription, the medication bracelet) that come with a real diagnosis. 

Which brings me to re-brandingRe-branding is a wonderful strategy, employed by businesses that get into hot water. (The Enron name has too much baggage? Just rename it AEI!).  

My proposal is that we simply re-brand food allergies. Too many people have glommed on to the term to the point that it's the object of ridicule. 

Where before I might have said "my son has food allergies", I need to start saying something different from now on, like:

"My son has an immune disorder" 


"My son has protein-induced anaphylaxis"


"My son has a hyperimmune reaction that
causes swelling and wheezing"

Any of those work for you? I like the last one a lot because it's not as easy to appropriate by the moms who really do make this stuff up. Swelling and wheezing are a lot harder to fake than sniffles and phantom stomach pain.

I understand why food allergies are polarizing. A lot of people are asking a great deal of others (food bans, restricted activities, etc.) without any proof that their allergy is serious...or even real

The Emperors are clearly out there.

I honestly think the only hope we have of ever being taken seriously depends on dealing with the 23% of the population who believe they have a food allergy but who DON'T. 

Perhaps component testing will finally provide a way to tell people they're not wearing any clothes. 

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  1. I like the alternatives to saying "my kid has food allergies!!!" They might have been useful yesterday when we took food into a theme park that doesn't allow any outside food to be brought in! I think it is important to distinguish that food allergies can be mild to life-threatening so yes, a stomachache can still be an allergy, just not a life-threatening one. Food allergies may only cause bowel problems to behavior problems but not anaphylaxis and still be very much true allergies.

  2. But isn't that the problem?

    Allergists have a very narrow definition for a food allergy. Bowel problems that are not immediate onset with other symptoms and behavior problems are definitely NOT food allergies.

    That doesn't mean they're not serious, debilitating, annoying, scary...but they're NOT food allergies.

    When I say "allergy" to people I want them to think 1) hives/flushing, 2) swelling, 3) vomiting, 4) wheezing, and (hopefully not, but) 5) cardiovascular symptoms and/or shock.

    The problem is that other people say allergy and want them to think...behavior problems? WTF?

    On another note, I'm surprised about the theme park. Most that we've visited have a policy for allergies. You might try asking if they have a health center manager you can talk with next time.

    And I fully believe in name 'em and shame 'em, so tell us where you were! :)

  3. I think that part of the problem is that not all allergists to have the same narrow definition of "allergy". Some use that term only to refer to patients with a history IgE mediated allergic reactions. Others don't. Some use the term allergy to refer to any immune system response to proteins to encompass cell mediated reactions and problems like eosinophilic disorders.

    I do recognize that sometimes a stomach ache isn't just a stomach ache. For example with a child with an eosinophilic disorder whose immune system is causing inflammation of the lining of the digestive tract which can cause long term damaage (and if in the esophogus a chocking risk).

    Don't get me wrong. I do think the claim of "allergies" is used sloppily and inaccurately by people who actually have something like lactose intolerance.

    And I don't particularly support the push for peanut-free this, that and the other or the perception that peanut allergies are necessarly worse than others.

    Our son's most severe reaction to ingestion was to chicken. And his contact reactions have been to egg. And it would be inappropriate to prohibit all of the other children in his preschool for give up all of his allergens.

    And there are circumstances when I find it more helpful to be specific when refusing someone's offer of food to him. Oh, no thank you for that candy. Peanut butter gives him hives.

  4. Brave post! I have recently stopped going to a popular allergy board for the same reason - tired of trying to be supportive of those who obviously are not dealing with true allergies. SO many truly believe behavioural problems are caused by allergies, and I'm sick of them muddying the waters. I blame the bogus tests that you highlighted in your Bitchie awards and Jenny McCarthy who popularized the wheat-free-casein-free cure-all-your-kids-behaviour / learning / sleep / yeast / vaccine-injured children diet. Many times over the years I've dealt with people blaming milk for behaviour problems, and it has caused me to start re-branding my son's allergy as "a milk allergy that is like a peanut allergy, and here's his Epipen" so people at least understand it's a real issue.

  5. Connie, I have used the words "like what happens with a bee sting", because that seems to help people understand. It also helps to say "he's gotten a shot and gone to the hospital several times because he's had trouble breathing."

    It's so sad that we have to justify and quantify our children's reactions...but that's what you do when the waters are so muddy.

    How about "anaphylaxis with edema and dyspnea", or AED? Acronyms and medical terms always seem to help people take disorders more seriously...

  6. As an Allergist, I do use the term "food allergy" to apply to more than just IgE-mediated reactions. FPIES, for example, is a very serious, potentially life-threatening gastrointestinal reaction that presents in a delayed fashion, and does not include the urticaria/angioedema commonly associated with immediate hypersensitivity. Eosinophilic esophagitis, as mentioned above, is another immune-mediated food hypersensitivity reaction with significant consequences. I understand the frustration with folks claiming allergies to foods without any evidence of immune hypersensitivity. However, I think it's important to recognize that the involvement of the skin and respiratory tract are not necessary components of serious allergic reactions. In fact, some of the most frustrating allergic reactions to foods are purely gastrointestinal in nature, because these are the situations most likely to be misdiagnosed in the emergency department as "a bug" or "intolerance".

  7. Sakina, I certainly don't begrudge the FPIES or EoE kids a place at the food allergy table! But frankly, kids with EoE or FPIES are better off socially than my kid because they have a medical-sounding phrase (with an acronym!) to use when describing what's wrong with them.

    I think (hope) it was pretty clear that this article was about the ~23% of the populace out there who describes themselves or their child as "allergic" on the basis of vague, crazy symptoms that are more about control issues than any medical diagnosis. When my kid says "food allergy", he's lumped in with all of them. He knows now that there's a social stigma so he talks about his food allergies as little as possible, which is not always a good decision safety-wise.

    As a physician, you probably don't get to experience the eye-rolling and snide comments that go with telling someone your child has a food allergy. Your medical degree ensures they'll take you seriously. Unfortunately, the rest of us don't have an instant badge of credibility.

    1. Umm...your blog kicks some serious food allergy ass. Just sayin'.

      I love it when I tell someone my child has food allergies, one being to dairy and I get hit with "Oh, I'm lactose intolerant too!!"

      Lord help us all.

    2. Thanks, DeBi! No higher complement in my book than "kicking ass." :)

  8. I'll sometimes lump them under "immune issues, which include severe food allergies," which I can get away with because I have other autoimmune stuff going on. I've found that helps a lot, especially when I'm trying to explain or account for some of that other stuff at the same time; it seems to be easier for people to accept and tolerate multiple issues if they can fit under one umbrella category.


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