Food Allergen Labeling: Using "common sense" when assessing safety

[LinksEtc]

"Flavorings and Spice Are Not Always Nice"

http://www.amazingandatopic.com/2012/01/flavorings-and-spice-are-not-always.html

My poor little girl was holding the bathroom trash can, and she was asking me, "Mommy, Mommy, why is my tummy hurting?

I wrote to the company to see if their "flavoring and spices" did, indeed, contain mustard, or maybe even sesame.

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"Why I Always Contact Food Manufacturers"
http://www.amazingandatopic.com/2014/09/why-i-always-contact-food-manufacturers.html

SEPTEMBER 18, 2014

I would like to take a moment to explain a bit about how I reached the point where I email/call every single company to vet each new product that my daughter eats. I no longer go by what I see on the label, alone.

[LinksEtc]

"Reading Labels for Food Allergies"

http://thrivingwithallergies.blogspot.com/2013/09/reading-labels-for-food-allergies.html

At this point, all companies that make these convenient and fun kids yogurts have called back with the news that yes, all do have strawberry in the "natural flavors", even the unhealthy looking bright blue cotton candy flavored ones. Some companies will not share what is in their "natural flavors" unless a signed letter from your allergist goes along with your request, or you can get your allergist to call them for you.

[LinksEtc]

http://allergy.hyperboards.com/action/view_topic/topic_id/12093/post_id/237342#237342

Boo - 9/4/2009
ConAgra

If you have any allergen concerns outside of the Top 8 Food Allergens, we recommend you do not consume the product and consult your physician.

YKW - 9/6/2009
Heinz & their &#%* proprietary info.



CM   

Can you just imagine that conversation?



"Hi, Dr. Smith. We're here for our appointment. Good to see you again."


"Nice to see you, too. What are we seeing you for today?"


"Well, since {DD} has a sesame allergy, Conagra told me that we should."

<pauses>

"Huh?"

"No, really. Here, I printed out their directions from the e-mail they sent us when I asked about microwave popcorn {or whatever product}"

<reads>

<Thud.... thud... thud...> <--- that would be the allergist pounding his head on the desk in the exam room.

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2013

http://asthmaallergieschildren.com/2013/02/24/ingredient-secrets/

Our contributor Susan Weissman told me that her friend Rose Ann Miller recently called Heinz customer service to ask whether mustard, to which her child is allergic, is one of the ingredients included under the entries “natural flavorings” and “spice” on the label.

we are not able to disclose whether it is in the recipe and, therefore, suggest that you avoid using this product

 

[LinksEtc]

SURPRISE!  Unusual or Unexpected Peanut/Nut Sources

Foods / Companies to Watch or Avoid: due to soy (surprise sources)

Unusual and Unexpected Sources for egg/egg protein:

Hidden sources for Fish/Shellfish: do you know of any?



What especially bothers me about the Mount Sinai "lollipop" example is that I seem to remember a story of someone reacting to hidden peanut flavor in something like a lollipop ... I tried to find the story, but I couldn't .... but it stuck with me because the lesson was "who would have thought that a manufacturer would put peanut as a hidden flavor in that product" ... it was just such an unexpected place to find peanut protein.

[LinksEtc]

The risk/benefit considerations of how to deal with inadequate labeling are going to depend on lots of different factors.  For example, a child with asthma, very low allergen threshold, & history of severe ana is a much different situation than somebody who has gone through OIT or who has a very high threshold with mild rxn history. 

Just my non-professional mom opinion.

[LinksEtc]

If you are dealing with a non-top8 allergy, I'd suggest talking with your allergist about the inadequate labeling issue. 

This is something that is not always acknowledged, but not all allergists know a lot about non-top8 labeling ... it's important to have an allergist that is knowledgeable in this area so that they can give you good advice.


If it's ok with SL, I'm going to include her quote from another thread:
Let's talk about anxiety

Pfft!  The allergist I was seeing said "those peanut parents" were all over-reacting when they talked about cross contamination.  Obviously he was no help.  I never saw a mental health professional.  I was able to get myself to a place I 'm comfortable with.

The last thing you need is an allergist that doesn't understand the true risks of inadequate labeling.

Enough people will think you are crazy when you try to explain labeling limitations ... they will think a quick look at the label is all that is needed to determine if a product is safe ... they will think you are over-cautious & over-protective & anxious for "unnecessarily" limiting food choices.

You need a knowledgeable, empathetic allergist.

[LinksEtc]

Re: Living with Food Allergies, FEB 2013

This is definitely minor, but...

I HATE it when companies label their alternative food products as 'Allergen Free'.  People can be allergic to pretty much anything.  People can be severely allergic to pretty much anything.  'Allergy friendly' is fine with me.  I understand that I don't exactly have the most common allergens.

Your apple flour is NOT allergen free.  The eight epi-pens in my house say otherwise, thanks.

I don't think that this is minor at all ... it's a great point.  If somebody new to allergies (with a non-top8) sees & believes that "allergen free" stuff, they could have a rxn.

[LinksEtc]

I think that there is something to the saying "ignorance is bliss".

After this thread, feel free to visit The Anxiety Thread


 

[LinksEtc]

Homa gave me permission to quote her here.


Re: CSPI Sesame Petition filed!!!

I'll try to reply without referencing anything specific in case you do delete what you shared, but the idea that allergists are willing to tell us "Avoid, Avoid, Avoid" but then when I approach them about labeling issues they tell me they either don't discuss them with patients or patients don't come to them with the concerns and it makes me wonder, you know?  It took us three tries to find an allergist that wasn't casual about the idea of anaphylaxis, they had this notion that if you have the epi you'll be fine but I kept saying "I don't wan't my child to react in the first place."  Recently there was an article on Asthma Allergies Children where they talked about a child being exposed to an allergen and the parent finding out that way that the blood test had been inaccurate - it reminded me of meeting with our allergist and having him say that I was "too good of a mom" when it came to avoidance because most families discover false positives through accidental exposure so we should have found out about the allergies E did outgrow, sooner.  There's no winning, is there? 

I added the bold/blue to Homa's quote.


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Re: Docs helping patients to surf the internet

Tweeted by @pash22

"Can patients get and use the information they need?"
http://www.kpmg.com/global/en/issuesandinsights/articlespublications/what-works/creating-new-value-with-patients/articles/pages/can-patients-get-and-use-information.aspx?utm_medium=social‐media&utm_campaign=2014-hc-what-works&utm_source=twitter&utm_content=gbl+2014+jul+27&utm_term=info+tw+promo

Patients need information that is often very different from the information that doctors think they need.

Our research into patient groups across the world consistently showed that, what patients felt was crucial information was ignored by clinicians. In fact for some patients groups the biggest gap between what patients needed and what they got was information.

[LinksEtc]

I guess that I'm done with my not-so-little intro .... anybody have any thoughts/comments/opinions to add?

[CMdeux]

I love you.   


What I think is often conflated when applying "allergy common-sense" is that it is emphatically NOT NOT NOT the same thing (as in, not even related to it) as "common" sense.

ALLERGY common sense is actually a good thing to follow.  Why?

Well, because that kind of sense is the kind that asks the following questions....


Hmmm... a new product!  Heyyyyy.... label reads safe.....  hm.  Company trustworthy with labeling?  Unknown?     how many ingredients?  aimed at a market that eats a lot of {allergen} or for whom it'd be a selling point to have it in other related products?  {looks at shelves}  AHhhhhhhhh-- another product in the same basic package as this one-- only it very definitely contains the allergen.  I knew it.



or sometimes;

yeah, sure, it's "just fruit" but... I dunno.... something about this makes me uncomfortable eating it.  Sayyyy-- you didn't by any chance make something else while you were prepping this, did you?




And yes, that is roughly what my inner voice sounds like.  It is a real life-saver for people like DD who have a very low threshold, because for her, most of her allergens might as well be non-top 8, thanks to "voluntary" and meaningless advisory labels that have in most cases reverted to don't ask-don't tell.    Yes, I'm lookin' at YOU, Trader Joes.

I'm mostly very content to listen when that inner voice has stuff to say to me.  I'm always sorry when I don't.  ALWAYS.

[CMdeux]

I'm reminded of a favorite quote of mine:

Better to be occasionally cheated than perpetually suspicious. ...
by B. C. Forbes

Only here, with the wry addition that it is also even better to be perpetually suspicious than occasionally DEAD.

 

[LinksEtc]

CM, I love those quotes.

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Tweeted by @bethkracklauer

"Recipes That Take Tahini in New Directions"
http://online.wsj.com/articles/recipes-that-take-tahini-in-new-directions-1413560988?tesla=y

as chefs around the country are learning, pretty much anything goes

[CMdeux]

That's right up there with the cheery recruitment postcard sent by quirky Reed College to my then-senior in high school-- you know, the one with food allergies.

Every day is like a rolling Smorgasbord!

    

Right.  Because nobody expects The Spanish Inquisi--  THAT.  Some surprises really, really SUCK when you have food allergies.

[LinksEtc]

Tweeted by @MountSinaiNYC

“Don’t assume you know whether a piece of #candy is allergen-free or not” Dr. Scott Sicherer on what to know mshs.co/1xezFxi #allergy

"Yes, Your Kids Can Still Trick-or-Treat with a Food Allergy"
http://www.bonappetit.com/entertaining-style/holidays/article/food-allergy-halloween

“It may seem logical that there’d be no dairy in a sucker candy, but until you see it on the package, you don’t know for sure,” he says.

Ummmm ... no comment ... just