Saturday, February 2, 2013

How Much of a Food Allergen is Too Much?

There's a new survey the FARE people would like you to take. It's about food allergy thresholds: the minimum amount of a allergenic protein that should be allowed in a manufactured food without cautionary or overt labeling.

Most of the questions are designed to gauge general literacy about labeling laws. However, there was a question at the very end that gave me pause:
"Would you purchase a food that contains the allergen(s) you are avoiding if you could be assured that the amount of that allergen present in the food is only capable of triggering a mild allergic reaction, such as tingly lips or an itchy throat?"
The wording of the question carries a good bit of emotional baggage. Many of us know the stories of kids who died after determining a food was safe because they touched it to their tongue and didn't feel the tingle. It's a terrible and very dangerous way to gauge the allergic content of a food.

So why was it asked in this way? I have a (cynical) theory about it.

Across the table from FARE in these hearings will be the food industry. Anything that adds expense or time to the manufacturing process is going to make these people very, very nervous. If the law suddenly requires them to guarantee a maximum amount of allergen, it introduces a whole new level of product liability. After all, if they say a food contains <1 mg of a protein and a family of a child who has suffered a reaction can prove otherwise, they're suddenly on the hook legally. (If you remember the story of Joshua Ramirez, you know there are basically no legal protections for allergic consumers at all right now, even when foods are contaminated and unlabeled.)

So what's the poor, put-upon food industry to do to stop this from happening? "Hey! Let's just prove that food-allergic individuals don't really want/won't really use this kind of labeling anyway!" 

It's probably true that the vast majority of allergic people will use this new labeling to eliminate foods from their diet (including foods they or their child have successfully been eating). Most people have no clue what their or their child's threshold is for an allergen. Plus, we know thresholds can change with time, and with other environmental factors like pollen load, puberty, exercise or illness. Given all that, it can seem like a crap shoot to determine a "safe" level of an allergen.

The problem is that the food industry may use "no safe level" type comments we make in this survey and elsewhere to argue that the food-allergy community is unreasonably fearful and that labeling foods more clearly would actually cause harm: harm to consumers (eliminating foods they're currently eating successfully) and harm to the industry (lost business from fearful allergic consumers, lost money/time to implement the new rules). If they can show people are unlikely to use the new information and that there's actual harm in providing it, it will be easier to kill.

My guess is that initial discussions have already occurred between FARE and the food manufacturer lobbyists, and that food lobbyists may have influenced the (emotionally loaded) wording of the survey. From what I've seen in on-line discussions about the survey, some people are leaving outraged comments...which will likely delight the food lobbyists, as it's "evidence" the new rules are really not needed or wanted by food-allergic individuals.

All I'm asking is that you not overreact as you take the survey. Consider whether the knowledge about the quantifiable allergenic content of a food (imperfect though it may be) would be helpful. Don't get caught up in the emotions of the badly-worded question, but read it at face value: would you purchase a food...if you could be assured that the amount of that allergen present in the food is only capable of triggering a mild allergic reaction. Of course you would. I would too...if I were totally certain the reaction would be limited.

This legislation has the potential to help everyone in the food community. Quantifying allergen levels will suddenly expose the habitually-contaminated foods our children have been eating. Whether you choose to continue with those foods, or eliminate them, is up to you. More important, though, quantifying allergen levels gives us legal protections we don't have today. Don't lose sight of that objective because of a badly-worded question.

Any other theories on why this survey question was so weird? Add them to the comments please! 


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48 comments:

  1. I would not purchase a product that would cause even a mild allergic reaction for my child, but I do agree that labeling laws need to change. It really upsets me that companies do not have to label for cross contamination, or allergens that are not top 8 like strawberry in "natural flavors".

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  2. Agreed--I would not purchase a product that could cause even a mild allergic reaction either. When my son was diagnosed at age 4, we started buying "peanut-free" only foods. We refused to purchase salmon in a case that was placed next to salmon marinating in soy sauce that was processed in a facility containing peanuts--perhaps made on shared equipment. If there were any possibility of cross-contamination, we skipped it. No food is ever worth his life. We became expert bakers and what we couldn't make safely, we didn't want or need. We require our son remain alive and well. There is no "safe" level of allergen for those with anaphylaxis. Fare dropped the name so who knows if they are representing those of us with a "true" allergy or those with OAS and intolerances? Even when a person has tested negative to high-risk proteins of an allergen, any other protein to which they have tested positive, has the potential of causing a life-threatening reaction. Anaphylaxis is a game of Russian-roulette. You never know what you'll get or what it will take to control it--if you can? Why would we ever risk it? It's much easier to select food from the perimeters of the grocery store than crack the codes of the food manufacturers. And since there is no way to guarantee that a reaction will be mild, it's all quite moot.

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  3. I would not buy anything that would cause me to have a mild reaction; its just not worth it, in my opinion. I'm sure there are some people who might crave a food or snack so much that they don't mind a mild reaction, but for me, if there is any trace of peanut or soy protein or certain tree nuts to create what they term 'a mild reaction' I won't bother.

    Allergies are mysterious and can go from mild to extreme 'just because' so avoidance of the food completely is the only way to avoid a reaction of any kind.

    Who wants to suffer a 'mild reaction' that cumulates and is likely to cause hives, intense itching, stomach and digestive problems or even gynecological problems due to lowered immune system? Not me!

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  4. You guys are just emphasizing my point, you know...

    You *do* understand that you are eating foods with peanut (or other allergens) in them TODAY without being aware of it?

    It will be a huge shame if this legislation gets killed simply because a bunch of us get caught up in a debate over whether there can be a safe level of a protein in food.

    That's like saying "I would never eat food with insect parts in it! For heaven's sake, let's not create legislation to label the insect parts!"

    ww.sixwise.com/newsletters/05/06/29/how_many_insect_parts_and_rodent_hairs_are_allowed_in_your_food.htm

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  5. I would love an increase in the detail of risk information on labeling -- I think more information is always better, and I would so welcome an increase in discussion/thinking about tolerance thresholds in the FA community. Yes, folks with OAS type FAs have a pretty high tolerance, but even those of us who manage FAs with risk for anaphylaxis can really vary in thresholds.

    So . . . I think it would be awesome if a product could say something like, "May contain traces of peanuts not to exceed 1 mg per serving." My kiddo is Ara h2 positive, but probably not in the "exquisitely sensitive" category, so she could probably tolerate that, and I would feel comfortable letting her eat such products regularly under parental supervision, though I might not want her to eat such products in a situation where she is less likely to get help should she have a serious reaction, say, at a brand new friend's house. Or maybe not on a day when her immune system is under siege from a virus or excessive pollen. Not sure. But it would be cool to have more info.

    *However,* the wording of the question they're asking is really lame: "Would you purchase a food that contains the allergen(s) you are avoiding if you could be assured that the amount of that allergen present in the food is only capable of triggering a mild allergic reaction, such as tingly lips or an itchy throat?" WTH is that supposed to mean? Who decides what the itchy throat threshold is when -- duh -- it varies widely for FA folk and can even vary for an individual?

    Let's say for a moment that a Big Food Manufacturer could magically know what THE threshold for itchy throats is (implausible premise since it varies widely), and let's say for a moment that they could control contamination levels to get to that X mg level per serving (another implausible premise). Would I give my kid a serving of that food? That's like saying, "Here, kiddo . . . eat this cookie. It will give you an itchy throat, but it will be delicious and won't kill you. Mmm, mmm." An itchy throat isn't horrible, but who signs up for one on purpose?

    So . . . yeah . . . the question they're asking (the way it's phrased) is idiotic.

    It would make more sense for the labeling to cite a potential maximum level of contamination, expressed in mg per serving.

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  6. I'm glad someone else also sees that question as inexplicably weird (and more than a little disturbing). So you gotta ask yourself...why in the world did they ask it that way? I can think of the following:

    1) The food industry influenced it (which I wrote about above).

    2) FARE believes that there is a safe level of allergen that will cause only a tingly mouth and believes they can educate consumers to also believe this.

    3) FARE doesn't believe this...but wants to see which of us believe it. Sometimes surveys have these outlier questions to gauge false beliefs...

    4) Some intern wrote the survey and didn't really get why this question was weird.

    Maybe FARE will tell us someday what they were after here. Anyone care to just ask on their Facebook page?

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  7. Which part of anaphylaxis do they not understand. We will not purchase ANYTHING with peanuts. No means no.

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  8. To quote liseeta, "No food is ever worth his life." Period.
    Our boy reacts to trace amounts of dairy (soy yogurt bacteria cultivated in milk before being used in soy... the casein-based glue used in many-as-yet-unlabeled cardboard paper-towel tubes...) So if it doesn't say "Dairy free" but also does not list what I perceive to be a dairy ingredient, I call the manufacturer to ask.

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  9. PS. Itchy throat and tingly lips WERE NOT the reactions our boy experienced before going into anaphylaxis...

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  10. I feel like I am literally beating my head against the wall...

    Scrapalish, I understand your frustration. BUT...if you use manufactured foods, the likelihood is that you ARE buying foods contaminated with some level of peanut today. Study after study have shown hidden levels of contamination in unlabeled foods.

    Allergic consumers today have virtually no protections at all when it comes to cross contamination. We don't know what's in the foods we buy. If we ask the manufacturers, they don't have to tell us. "May contain" type labels are completely voluntary.

    I think it's the food allergy community who does not understand what is going on here. This world of complete uncertainty is the world we live in today. If this bothers you, I urge you to read up on the current situation and consider how this type of legislation might actually help things.

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  11. I understand the contamination allowance for roaches in chocolate, but aren't food allergen labels now mandatory if there is any risk of any percentage of the allergen in the food? I don't eat many manufactured items, but the ones I do cannot contain soy or peanuts in any form, even oils or I will know.
    http://www.fda.gov/food/labelingnutrition/FoodAllergensLabeling/GuidanceComplianceRegulatoryInformation/ucm106187.htmhttp://www.fda.gov/food/labelingnutrition/FoodAllergensLabeling/GuidanceComplianceRegulatoryInformation/ucm106187.htm

    Back before the Labeling Act was in place, I had severe reactions all the time and went to the hospital for a couple of 'mysterious' reactions which are likely attributed to no labeling enforced at the time.

    What do you mean there are traces of peanut in manufactured goods? Due to the labeling now, wouldn't that be illegal if it were the case?

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  12. Here's an article that summarizes the unlabeled cross-contamination issues with the foods we're already eating:

    http://health.usnews.com/health-news/family-health/allergy-and-asthma/articles/2009/03/16/food-allergy-labeling-not-always-accurate

    Here's a summary from a food mfr. industry journal:

    http://www.tandfonline.com/doi/full/10.1080/19440040903317513

    Another article on that site said as much as 60% of dark chocolate is contaminated with levels of milk protein sufficient to cause an allergic reaction (which we have experienced first-hand).

    Our world today is very, very far from "zero peanut." Don't shoot the messenger!

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  13. That would have to be the dumbest question a manufacturer could ask to rate how much they should need to label their food. The people determining that decision obviously do not have children or a loved one with food allergies. That would be like saying to my son "now lie on the driveway and im going to run you over. Dont worry im only going to drive slowly so u shouldnt get too many injuries." So why would i feed him the food that makes him sick or worse, die!?!? My son has 13 food allergies and we already live a very challenging life without adding ignorant human beings into it that want to save money

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  14. Here's my take on this question: There are some people who don't worry about cross-contamination or traces, I know several and am related to a few of them! And they are not just "living dangerously," some are following their doctor's advice. One example is my niece, who was diagnosed as potentially peanut allergic due to a slight rash and some SPT results. We share an allergist and he recommended she avoid eating peanuts to be on the safe side, but he didn't prescribe an epi-pen, nor did he recommend extreme avoidance measures because her situation simply didn't require it. By the time she was 7 she no longer had SPT results or rashes and now eats peanuts. Obviously, he doesn't recommend the same approach for my daughter who experienced anaphylaxis to several allergens. Not everyone with an allergy has experienced anaphylaxis, nor does everyone with a food allergy follow strict guidelines--and I'm sure there are many who "should" avoid better and I'm not going to comment on that or say it's okay, it's just how it is. I'm also starting to feel hopeful that maybe my child's thresholds may change 'for the better" and would absolutely love to be able to lighten up a bit on, say milk cross-contamination worries, even if staying vigilant on wheat or nuts, you know?

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  15. "More important, though, quantifying allergen levels gives us legal protections we don't have today."

    Explain please.

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  16. "would you purchase a food...if you could be assured that the amount of that allergen present in the food is only capable of triggering a mild allergic reaction. Of course you would. I would too...if I were totally certain the reaction would be limited."

    Please clarify why you would buy food that could knowingly cause any reaction?

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  17. NoNuts, you didn't do what I asked you to do: read the statement *literally* as they wrote it.

    IF I could be assured a reaction would stop at an itchy mouth(IF), I would buy the food. There are many spices that make my mouth itch or burn a little and I have no allergies. It certainly wouldn't be a reason to avoid food IF I COULD BE ASSURED IT WAS HARMLESS AND THE REACTION WOULD ALWAYS STOP THERE (which is what the question actually says).

    The whole point of my article is that we CAN'T be assured it would stop there. I said that several times, and that using this method is a bad method. However, getting hung up on that question and overreacting is exactly what the food industry wants from us IMO. We are all very predictable when it comes to this.

    They push the emotional buttons, we send in our indignant comments, they use those comments against us. Understand?

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  18. NoNuts, regarding legal protections...please read the link to the legal case for Joshua Ramirez. Because there's no measurement of allergens today in foods, there is an assumption in the courts that food-allergic people are on their own when it comes to protecting themselves from cross-contamination. Even if (when) a food is found to be cross-contaminated and a person dies from eating it, we STILL can't win a lawsuit.

    Having manufacturers certify the maximum amount of protein in a food provides a more enforceable legal contract, a better basis for lawsuits. Make sense?

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  19. Laura, it's very important (and sorry for these being out of order -- I'm working backward on comments) to recognize that there are many different levels of allergy. Even with peanut, there are people who are working with a doctor and who do not avoid all peanut protein. As you guys know, WE are now in this category. I have clearance after our clinical trial to give my son "may contain" products.

    I am aware that very few people in our community would be comfortable with this (I'm certainly not - it's a struggle every day). However, making laws is not about making ourselves comfortable. It's about making the world better, for at least some people, and not making it worse for others.

    I truly believe having protein content of foods would make it better for everyone, whether people use it to avoid more foods or include more foods. Right now, we're all operating in the dark!

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  20. We avoid foods for my son based on a couple things - his allergies (ANA to milk, allergic to several other foods); and his diagnosis of Eosinophilic Esophagitis (EoE - he has internal reactions, the only way to keep tabs on that are by endoscopy & biopsy). He has added 7 allergens over the past year, so the list of his allergens is growing (dx at 9 mos with 3 FA's, outgrew 1 at age 3, then added 7 at age 6). We have to avoid anything containing his allergens (and we don't know if there is a "safe" level of a food for EoE, so we would still completely avoid all).

    The thing that worries me about a "mild" reaction is - what if it progresses? What if we get our kids used to the "mild" reaction and they are so accustomed to it that they don't take notice when, one day, it's the start of an ANA reaction? We teach our kids (and ourselves!) that those symptoms are early warning signs to pay attention to. Do we just expect that it will be mild and miss an ANA reaction before it's too late to reverse it?

    I've also found my son has EoE symptoms even when completely avoiding all of his allergens (and he's had allergy reactions when it seems he has only had safe foods). I often consider if something was not labeled. Having a clear label would be great, but I would be avoiding those foods (even if he eats them now, seemingly without incident, because it might explain or contribute to some of the symptoms we see).

    Another, for some children, their food allergy list grows over the years. From how it was described to me - some can have a mild reaction to a food, but your body can reach its tolerance and the next reaction could be more severe. One of the quotes I remember reading is "past reactions are not always indicative of what future reactions will be". An individual's tolerance, or threshold, can change with time, new allergies can be added.

    Consider all the labeling recalls now, do we trust the information will be accurate? (We kind of 'have' to, but we've probably all experienced times of having our child complain or react to a seemingly safe food.)

    We have a right to know what is in our foods and make our own decisions based on that. And, while I'm on a rant, I also feels that labels shouldn't just say "spice" (tell me what spices!), or "natural flavors" (tell me what those are derived from)....mfg's are only required to tell you what is in those if it's a Top 8 Allergen (and for those of us dealing with allergens beyond the top 8, we struggle with getting the answers we need and have to avoid any food that has "spice" or "natural flavors"). Most mfg's are not very helpful in sharing that information (even if it's just a "yes or no" on if it contain a food from my personal list to know if we can safely serve it!).

    I'm for clear labeling, with all ingredients disclosed. If they want to put thresholds on it, fine....but we'll be avoiding all that contain our allergens unless our GI/Allergist advise us that it's time to pursue a trial on a particular food. All in all, it would be good to have more information available!

    -Kim (son is ANA to milk, outgrew peanut allergy, also allergic to egg, beef, pork, turkey, cod, celery, carrot, cabbage)

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  21. FAB, I agree with you, I think, that if it were possible to establish consistency in labeling for allergen protein content, we'd not only have some protection, but also some valuable data. I have no idea about thresholds with my daughter. Her severe reactions have always been delayed--and after a failed challenge we don't know if it was the last dose, the one from an hour ago, or the consolidation of several hours worth of dosing that caused her to react (and I think this may be why she doesn't qualify to participate in studies, too).

    I think my biggest concern, like with the standard "may contains," is that CYA legal wording will become standard and possibly water down the helpful nature of the labeling, making it just as meaningless for some of us as "may contain" or "good manufacturing processes used" types of labeling currently is. I imagine manufacturers just automatically labeling over the threshold amount across the board so they don't have to provide any assurances or do regular testing.

    Ultimately the allergy community will still depend upon those manufacturers who decide to cater to us--and right now they are the ones who already bend over backwards and do things like batch testing.

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  22. If all of you who have such strong responses would actually DO the survey, you can make sure your opinions are included.

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  23. LOL!! Yes, please DO THE SURVEY!

    Laura, nothing is perfect. And yes, some manufacturers will certainly work to circumvent the system. But perfect cannot be the enemy of done.

    I'm thrilled the FDA included food allergies at all in the food safety initiative. I just hope we don't all shoot ourselves in the foot by misunderstanding what's really at stake here.

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  24. so, would you mind eating rat poison as long as the amount of rat poison is below the level sufficient to kill you?

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  25. 1 is a number.
    2 is a number.
    1 = 2.

    Anonymous, the whole "peanuts are poison" thing breaks my rule of being respectful, not reverent, about allergies.

    Peanuts are just peanuts. Talking about them as "poison" gives them way too much power.

    Please: consider talking to a health professional about the anxiety that's underlying that statement.

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  26. I should clarify a couple things. I did take the survey (even before I posted a comment here), so my voice was heard. :) And, I in my comment, I shouldn't have said if they "want" to include thresholds - basically, most mfg's don't "want" to tell us any more than they legally HAVE to. I've talked to some mfg's who have flat out said they don't know what's in their foods (when asking about spices or natural flavors). Simply put, consumers should have the right to know exactly what is in our food - full (accurate!) disclosure on all of the ingredients.

    I've also learned the scare tactics do nothing but make people think FA parents are too extreme, and kind of crazy. It's best to be factual and be reasonable, to help educate others, and to teach our children how to become the best self advocates. We need to give them the space and confidence to be able to handle certain situations (it's awesome to start young in supervised/aware situations). Praise them for their good decisions, encourage them and help offer solutions for those difficult situations!

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  27. Maybe the companies are hoping that they can prove they would loose customers by stating "may contain", "made in the same factory, or line" etc for the top 8 allergens, and so will fight harder not to legally be bound to adding those warnings etc.

    I would love to know who wrote the questions, and why they were worded that way.

    I agree that no food should be vilified over all others. While peanuts/tree-nuts are responsible for the majority of anaphylactic food related deaths. Try to put yourself in the shoes of a parent whose child is deathly allergic to dairy, fruits etc.

    Your child's peanut free treats, may be another child's "poison". They may look at a goldfish, or strawberry the way you look at a PBJ...

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  28. Anonymous, WHO are you talking to when you say "try to put yourself in the shoes"...

    I am baffled. You do realize I have a child with anaphylactic food allergies, including cow's milk? It's right over on the side, in the "About Me" section.

    I still vehemently say that thinking about allergenic foods as poisons is unnecessary and emotionally harmful. People who look at the peanut industry as evil, or are unwilling to even touch a (closed) jar of peanut butter have crossed a line into phobia.

    Live with the allergy; don't let it control your life.

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  29. Different anonymous here. Agree with you 100% that we need as much labeling information as possible and as much legal protection as possible. Then we are armed with more information and more protection before we decide whether or not our individual children can safety consume these items. Thanks so much for posting.

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  30. Sorry, I was agreeing with you about peanuts not being a poison... I guess my point did not come across well.

    I was trying to point out that one child's allergen is another child's safe food. And that it helps to put yourself in the other parent's shoes to understand that.

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  31. Ah, o.k...sorry. I guess I feel a little embattled in this particular comments exchange because there's been a bit of "blame the messenger" going on. :)

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  32. Maybe you should consider talking to a health professional about your need to always be right.

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  33. Wow... That was not me. I guessed that you were feeling ganged up on.

    I love your blog, and I am following your son's progress with SLIT. Sending you some positive vibes! I think you are very brave to put your story, opinions, and d feelings online, and I really appreciate it.

    I love your blog, as I feel like you have a healthy perspective about it all. Especially when it comes to the fear and misconceptions around food allergies.

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  34. Thank you, Anon #2. This is a mostly thankless job.

    There's a great (though very sad) story that I've never forgotten:

    http://fictionaut.com/stories/amy-hempel/in-the-cemetery-where-al-jolson-is-buried

    One of the main themes of the story is that anger is always stronger than fear. That's why in California, some schools have the kids go out and stomp on the ground after an earthquake and shout "BAD EARTH!"

    Everyone needs a "bad earth" at times, but it's hard when "bad earth" is my blog. It's much easier to blame the messenger than look at our own fears.

    (And Anon #1...I am very aware I have my own issues. But my advice to you was not driven by anger, but by compassion. Don't discount the idea of a health professional.)

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  35. OMG! Totally laughed when I saw this one after the comments on this post:

    http://www.theonion.com/video/report-peanut-butter-contains-traces-of-rat-feces,31177/

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  36. FAB,

    I think the studies you are citing regarding peanut in foods are out of date. I have read more recent studies that show that about zero percent of foods labeled as 'may contain peanut' and other such warnings (particularly for peanut and I believe tree nut as well) had a very low chance of peanut or tree nut in them. Foods without any warning had about a zero chance of having peanut or tree nut in them. I think this is because of FDA efforts to educate manufacturers and greatly increased awareness of peanut and tree nut allergies and how serious they can be. Other allergens like milk had a higher % of xcontam but still lower than in the very large 2009 study. So, I think your argument that everyone is already eating peanuts and putting our heads in the sand is based on outdated info. The fact is that most are NOT eating peanuts at all because apparently manufacturers are doing a good job preventing xcontam.

    I think you are trying to make your point as best you can but you are stretching things by siting things such as, 'Another article on that site said as much as 60% of dark chocolate is contaminated with levels of milk protein sufficient to cause an allergic reaction.' Chocolate is a total off limits food for those with deal with peanut, tree nut, milk and often times egg and soy allergies due to the super high xcontam rate of those foods. That is very basic info. Comparing the rate of one of the highest xcontam foods that FAAN and all other FA groups say, 'avoid eating' in even the most basic intro pamphlets for newbies to the average risk for a processed food is very misleading. The fact that bakery foods are off limits for those with peanuts and tree nut allergies and have a high chance of xcontam says nothing of the risk of eating, say, Chips ahoy if one is doing baked milk (original only as the others have non-baked milk!)

    If you really are interested in what all this means, Lynda at KWFA posted about this topic and seems to have more details about what it all means. I think we are being asked for feedback merely out of politeness and without much interest in what any of us have to say on the subject. I think they are looking for actual real research on the subject and trying to make a policy that is backed by scientific research. I don't think our feedback counts for much at all and don't think it will impact decisions.

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  37. I am the last anon who posted and have posted before as garden girl but don't remember my password. I did not post anything but the post that is directly above this one.

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  38. I don't see how being complacent and not expecting food manufacturers to divulge ALL information about the ingredients in their products is in any way helpful or warranted. Why would we want or expect LESS information about the food that we are eating? Regardless of allergens, these manufacturers shouldn't be afraid to tell consumers EXACTLY what is in their food.

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  39. This entire comments section has been like herding cats...

    Current labeling SUCKS. The FDA doesn't enforce any standards until/unless there is a problem. That's the situation today.

    There are so many mothers who seem to be stomping their little feet and saying "but they HAVE to do it." Well, no. They don't. They aren't.

    Gardengirl, I'm glad you don't believe foods are peanut-contaminated, because that means you haven't had a problem. Maybe you're right and food manufacturers have all gotten magically better in the last 5 years. Maybe you/your child just has a high threshold...or good luck.

    I just wish we could work together better as a community. Half of us don't seem to know what to wish for, and the other half seem to be actively working against things that could actually help.

    It just doesn't do a bit of good to stamp our feet and ignore the current situation. We need to make it BETTER. Let's start there, instead of insisting on perfect and throwing an opportunity out the window.

    (And hey - Lynda at KWFA gets paid for her time, so I would hope she's better informed on all this. My blog has always been just my little opinion - not advocacy, not fee-for-service information.)

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  40. FAB,

    I do not have links to the articles I have read but I have read more than one (as in at least several if not more) articles talking about more recent research on x-contam that what you are citing here. So, my opinion does not come from whether or not my child has had a problem with what he eats but from reading research that is more current and that states that peanut xcontam is almost zero in foods that are not labeled as 'may contain' or any other warning and is pretty darn close to non-existent in even foods that do have allergen warnings. The theory on why this is so is that peanut and nut allergies are becoming more well-known by the industry and in general the industry is taking much more care to prevent xcontam with peanuts and nuts (and to a lesser extent other allergens) than they did in the past, even in 2009. So, your argument that we are all already eating peanuts is less and less true than it was in the past and in 2009. That was my point.

    We are very careful which companies we buy from. I contact all companies before purchasing foods as we also deal with non-top 8 so have no choice really.

    I think if you want to talk about the current situation you might want to read more current research on the topic. And if you want to talk about the current situation you might want to read Lynda's recent post because she does have more inside info than the rest of us get. If you are interested in this topic I recommend it.

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  41. And I think you may be cherry-picking the opinion that you feel best about...

    But that's just me.

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  42. How is that? That is pretty much reverse of what I see. Why did you use the 60% of chocolate xcontamed stat to make your point? That really took away from what you were trying to say. I think you could have argued this better than you did but I'm telling you that the 2009 FDA report is out of date and if you look there is better info out there that shows in all likelihood people are not eating much of any xcontam peanuts in today's USA processed foods. With milk and other allergens there is a higher chance of that but still much lower than before. That's not cherry picking. That's true. If you looked you would find articles on this topic more recent that 2009 that say what I'm saying.

    And you may want to read what Lynda wrote because I get the feeling after reading it that our opinions and what we write to the FDA are not going to play any role or any significant role in what happens. I think they are going to make their decisions based on whatever research exists on this topic. So, I do not think you have much to worry about with regard to people who do not think the way you do on this topic voicing their opinions to the FDA.

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  43. Gardengirl, I *have* looked. There is nothing further after the FAARP study in the food allergy world that I could find, so I went to industry testing journals. The 60% stat is from one of those journals.

    I don't like to say this publicly (I try to keep my identity private for my son's sake), but I have spend 22 years now in the industrial lab testing business. I have some knowledge in the area.

    If there is comprehensive research I'm missing, PLEASE do us all the favor of posting the links instead of just talking about it.

    Regarding this making a difference...I already said in the blog post I thought it was all an industry set-up. That doesn't take away from the fact that we mothers cannot work together on even the smallest FA issue.

    If we could all actually AGREE on something, we might have more of a chance of making a difference together. But nope...the industry pushes our emotional triggers, we melt down, and nothing changes. Mothers are so very rattled by the idea that the industry has been secretly undoing their perfect no-peanut record that they simply can't think beyond it to policy.

    We have our own right-wing that wants to talk about poisons and zero tolerance and a bunch of other stupid ideas that are not helpful or achievable -- just completely polarizing to the people who make our food.

    As I've said elsewhere in this very, very long comments exchange, we are playing right into their hands. It may not be possible to change the industry with just our voices, but we make it so very easy for them to just ignore us with our lack of a coherent position.

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  44. There is. I read it published by FAAN and other groups. There have been news stories saying that about zero % of foods without advisory labeling have any peanut in them and very close to zero with advisory labeling have peanut or nuts in them. The old FDA study was that 17% of things with advisory labeling did contain enough to cause a reaction but that is very out of date now. If you contact FAAN/FARE and ask I bet they would point you in the direction of this stuff. I have read it several places, probably in news story section at KWFA or the FAS board or both. I have read it multiple times over the past few years.

    The 60% of chocolate is not relevant to this discussion. Anyone who does even the most basic reading on food allergies reads that chocolate is a very high risk food. OF COURSE 60% if not more of chocolate is xcontamed. That is not a surprise. Chocolate manufacturers are known to not clean between types of chocolate since it is such a costly product to make. Whatever is sticking to equipment gets into the next batch of whatever they are making. To put that out as thought it represents the average risk of xcontam or means ANYTHING with regards to almost any other type of food is MISLEADING and that is what I am criticizing in your writing about it. You know that the average risk of xcontam in a food is far less than it is in something high risk like chocolate or items from a bakery, etc.

    I have to say that i agree it would be nice for us all to work together. I think part of that would be to listen to each other and not dismiss people who have differing opinions as simply over emotional people getting our strings jerked. Someone who only deals with peanuts and a high threshold will have a different need than someone who deals with non top 8 and a low threshold. They may have very different opinions when it comes to what they want from labeling and BOTH opinions may be equally valid. We are not necessarily going to agree. That can make working together tricky (think of people who have children who have contact ingestion ana and those who think bans are silly and unnecessary--those two groups might not work together all that well, for example.)

    I will see if i can find anything about this topic to show you but I"m pretty busy and shouldn't be on the internet as it is. :)

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  45. Here is a link to one article. It is NOT the ones I had in mind but it is on the topic and unlike the FDAs earlier often cited finding that "17% of foods that have may contain and other warnings do contain enough to cause a reaction" they found 5% contained (study didn't specify if it was enough to cause a reaction and I have no idea myself). That shows that xcontam is less common now than it was. http://www.reuters.com/article/2010/08/11/us-allergy-labels-idUSTRE67A4RP20100811

    'About 5 percent of foods with warning labels had traces of allergens, compared to 2 percent of foods without labels. In all, 5 out of 232 products the authors tested were contaminated with peanuts, 10 out of 193 with milk, and 4 out of 174 with eggs.'

    'About 5 percent of foods with warning labels had traces of allergens, compared to 2 percent of foods without labels. In all, 5 out of 232 products the authors tested were contaminated with peanuts, 10 out of 193 with milk, and 4 out of 174 with eggs.'

    I have seen other things that had lower rates listed. I think that xcontam rates are coming down as companies know more about FAs.

    Personally I can't go by food labels alone and need to contact companies to ask if foods contain my son's non-top 8 or may be xcontamed with any of my son's allergens. That has worked well for us for almost a decade. If whatever the FDA does gives me even more access to info I'm all for it. If it leaves me with less access to info (as FALCPA did in some cases for our allergy set--some companies refuse to give any info but that required by FALCPA and cite that they aren't required as the reason why) then I won't like it. I will have to wait and see what is coming. Hopefully it will be something actually helpful.

    I know how to deal with the current situation and what I do seems to be working. Before I started contacting companies DS had serious reactions. Since then he hasn't had even one xcontam reaction afai can remember.

    I like you, FAB. That doesn't mean I will agree with you on everything. I think I usually agree with you. That's good enough for me. :)

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  46. Gardengirl, I'm lost.

    The Reuters article you posted is from 2010. It references the exact same Mt. Sinai/FAARP study I referenced in my column. It says exactly what I said in the column I wrote the next day: 5% of "may contain" items were contaminated, and an additional 2% of items were contaminated and did not have even a cautionary labels.

    I'm not sure what your point is here. I hope you are right that things are getting better, but I have no reason to believe they are. There is a little more awareness over the last 5 years, perhaps, but ELISA swabbing is about the only testing going on and it's not mandatory for food manufacturers. There is virtually no testing of final food products being done (like was done in the FAARP study).

    Calling about foods only works if they tell you the truth, which only works if they KNOW the truth. The people who answer the phones are given a script. Even when I've gone to the QA manager in the past, they are not always instructed to share information (and they are not legally obligated to do so).

    Food manufacturers seem to be taking the position that we are ALREADY eating trace amounts without knowing it and there's no problem, so why change things? If they start labeling, we will start avoiding. And, as I said in the next column, they may very well be right. You are demonstrating exactly what they are most afraid of. If they start labeling your "safe" foods, you will stop using them.

    We went through this after FALPCA. Probably 25% of what we thought was safe suddenly had a warning label on it, so we dropped those foods. (Many were foods I had called about in the past and not given the same information that was now on those labels.) Would we have been better off simply not knowing, since my son was not having a problem with them?

    I'm glad what you're doing is working. I can't agree with you that it's working because all your foods are pristine, but who knows -- maybe you really do get the blue ribbon for getting manufacturers to tell you the exact truth on everything they make.

    That still doesn't change the fact (and I believe it is fact) that at least some of our foods have contamination we do not know about. Having a clear-eyed understanding of this is the first step to changing it. If we all insist "no, no, NO, can't BE!" it will certainly never change.

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  47. I was wrong about it being a new study. But I have read articles that state that the chance of eating peanuts if you avoid precautionary labels is pretty much zero. That was my point. You said that there are peanuts in food now and my point is that, no, there pretty much are not peanuts in foods if people avoid precautionary labeling. The Oct/Nov 2010 FAAN Newsletter states that 'none of the products with no peanut allergy declaration contained peanuts.' 4.5% of foods that did contain a warning contained peanuts.

    In the case of milk, 10.2% of foods with a warning contained milk and 3% without warnings did.

    The chance of eating peanuts accidentally if one avoids foods with allergen warnings is quite low and seemingly getting lower and lower.

    There was a study that found 17% of may contains do contains, thus the often cited quote. But that is no longer the case. It is far lower than 17%. So, I wouldn't advise eating may contains but even that risk has come down.

    Additionally, another FAAN newsletter talked about relatively new legislation that requires manufacturers to have a plan to keep food free of allergens and other things in order to improve food safety. I'm not sure how fully that has been implemented yet but my feeling when I read that article was that food safety is improving in any case.

    I assume that pre FALCPA you went by label reading alone based on what you have written. And I also assume that that worked for you. In our case label reading alone DIDN'T work. My son had very serious reactions to minute amounts of foods that were xcontamed with a non-top 8 allergen that is quite potent. So, in your case maybe precautionary labeling is not so necessary as perhaps your child has a pretty high threshold. What works for one person may not work for another. So, in your case, maybe your focus is on all the foods your child could be eating but for CYA may contains statements whereas my focus is on avoiding another very bad experience we had from xcontam of factory foods.

    I do get a good sense of companies by talking with them. There are quite a lot I have to just cross off my list because they won't tell me anything and my son has allergens that don't have to be listed on labels. Since starting to call companies we have had close to 10 years of no problems so I'd say my system is working. I would not say that all the food is 'pristine'. I'm sure that some things he eats are xcontamed in some ways. But I avoid things made on shared equip/same facility with certain allergens and that reduces the chance of xcontam quite a bit. And the recent research shows that the chance of peanut xcontam in foods without warnings is pretty close to zero. That was my point. Not that all food without warnings is, 'pristine.' If your care is that we are missing out of lots of prepackaged foods, that isn't my care. I am not that big into processed foods in the first place and we use way more of them than i would if my child didn't have any food allergies just out of convenience and to make up for things he can't have, etc.

    If having thresholds listed makes things safer and gives people more info and choices I support that. I think you are assuming my opinion to be things it is not.

    I have read other more recent things that talk about this. I am not going to dig through all the stories at KWFA to find them. Maybe it is like the FAAN article and just more detail about the same study. But the detail that the risk of peanut xcontam is about zero is good to know.

    Best wishes, FAB.

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  48. Gardengirl, I think your interpretation of what I wrote was a careless read...but I can see that you're so polarized on this issue that there's little I can say that will make any difference.

    If you ever do find the studies, please come back and post them. I (and probably several others) would be very interested.

    In the interim, I have to base my opinion on the evidence I have.

    P.S. If you think we didn't call manufacturers before FALPCA, you don't understand the legislation. Before FALPCA, manufacturers were allowed to hide milk, soy, and other ingredients in "natural flavorings" without labeling. That meant we had to call on EVERY product we used (and re-call often on them).

    Be glad you live in a post-FALPCA world. I suspect Lynda at KWFA is probably commenting on how much better things have gotten since our children were young, pre-FALPCA, which is very true.

    Unfortunately, the studies I posted are post-FALPCA, so "better" does not mean "allergen free."

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