Saturday, February 23, 2013

Harmful Things Food Allergy Advocates Say

If you've read my blog for any length of time, you know I have mixed feelings about advocacy and support groups. I do think there's just no other way to really learn the nuances you need to know to keep a food-allergic child safe. However, I also believe they spread fear, misinformation, ultra-conservative thinking...and, even at times, do outright harm. Let me give you some specific examples of where I think advocacy groups have crossed the line.

1. Peanuts are Poison.

This is like telling your child when their pet dies that it has "gone to sleep." It's a dangerous misrepresentation of the situation that is likely to lead to future problems.

In all likelihood, your child will need to undergo a food challenge at some point. It's possible (likely, in the case of milk and egg) that they will outgrow their allergy. (Remember that as many as 20% of children do spontaneously outgrow even a peanut allergy.)

What's going to happen with the child who's been told, over and over, that peanuts are "poison?" My guess is that they're going to have a very hard time adjusting their thinking and going through a challenge. That's how we end up with kids who refuse challenges, even when their doctor thinks the time is right, and who continue to avoid foods even when they've passed a challenge.

Don't do this to your kids. And, when you see advocates promoting this, don't put up with it. It's both technically wrong (an antigen response is nothing like the body's response to a toxin) and psychologically harmful.

2. Vaccines cause food allergies.

I don't know why I was so surprised to see this one come up in my Twitter feed. As I told that Tweeter, we have literally been having this conversation about the link between adjuvants and food allergies for 15 years. (The link above is to my community's old home. The story of why we left there is an instructive one in the abuses of advocacy groups...but probably better left for another day, although I will say that many of us are still disappointed the dedicated ice cream factory never came to fruition...)

This is an excellent poster if you want to be an excellent poster.
Here's the thing: anything that causes mothers not to vaccinate their children needs to have more scientific evidence behind it than "well, it seems like it might be true, so let's post about it." There is real potential for harm here. I have very strong feelings about this because I know a family who lost a baby to pertussis. Their baby was too young to be vaccinated. The neighboring family was anti-vaccine and their children came down with pertussis. They were fine; the baby died.

I'm not going to get into the overall debate about vaccines. However, the idea that peanut oil in vaccines is somehow magically sensitizing children to allergies has no basis in reality. First off, the adjuvant that's most often referenced in all this is a Merck product that was developed in the 1960s, well before the onset of the wave of food allergies. (An adjuvant is an ingredient, most often a metal or  mineral salt, that's added to vaccines as either a preservative or as a "booster" to enhance immune reaction.) Second, any peanut oil used in these situations would be in a highly-purified form that would be extraordinarily unlikely to contain peanut protein residue. Third, a quick perusal of vaccine inserts (I did this years ago, but did it again now just to make sure) does not turn up Merck 65-4 adjuvant or peanut oil in any form that I could find.

There is a philosophical concept called Russell's Teapot: if I want to believe that there is a china teapot orbiting the Earth, the onus is on me to prove my theory. Expressing a theory is not proof. To date, there has been no epidemiological or research link between adjuvants and food allergies. Remember, folks: many of these doctors and researchers are interested in food allergies in the first place because they have a child with food allergies. There is no reason to believe in a grand conspiracy here.

Advocates: before you start spreading this next round of hysteria on your sites, remember that there's a potential negative outcome here. There are babies that will die as a result of people's choices about whether to vaccinate. If you spread it, you own it.

3. Zero tolerance. Strict Avoidance

I am really sick of the conversation about food thresholds. But, I saw this one on an advocate board the other day and it ticked me off all over again.

I worked in the world of medical device during the time latex allergies became prevalent. The FDA at that time attempted a "zero tolerance" initiative for latex. Basically, every component of every machine — even if the components never had potential to come in contact with patients or medical staff — had to be declared. If even one O-ring contained latex, the entire machine was marked "contains latex."

Is this what we want? Do we want products marked for peanut, even if there's no detectable peanut protein? From a practical perspective, that would mean that any food that is ever done in a factory shared at any time with any other peanut products would be suspect. Since the vast majority of lines are shared, that would essentially mean just about everything would be labeled, other than the largest dedicated factories or those who are already catering to us.

We need to live in the real world. We need to understand the nuances of food manufacturing and the limits of testing. Most important, we need to project a willingness to discuss the issues, not just make a declaration, stomp our feet and leave. Why should food manufacturers work with us if we won't work with them, especially when we punish the manufacturers who are honest (and use "may contain" labels) and purchase foods from the manufacturers who don't?

Are there others that bug you? Add them to the comments! 


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33 comments:

  1. Yes, yes, YES!!! Another one that makes me want to scream is when someone says that their child's food allergy is anaphylactic - not based on the child having had an anaphylactic reaction, but because they had a large wheal/flare or high number from ImmunoCAP testing. The reality is that a larger response to allergy testing means greater confidence that it's a true positive. That's it!

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    1. Well . . . sometimes people say the allergy is "anaphylactic" because their doc has told them there's risk for anaphylaxis and has prescribed epinephrine (and bear in mind that there are different ways of defining anaphylaxis -- even the medical community doesn't use the term consistently). By some definitions, a kid who has had a non-local reaction (even if not life-threatening) has had anaphylaxis. But, anyway, on a related note, I wish we could stop overdramatizing RAST numbers like you mention. I'm sorry to say that I know plenty of FA-educated folk who should know better but still play the "my kid's RAST numbers could beat up your kid's RAST numbers" game. Of course high numbers will never feel auspicious, but they don't predict severity of reaction, just likelihood of reaction.

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  2. While I appreciate your post, the vaccines issue is very complicated. You can't simply say that they do or do not cause food allergies. There are studies that link a delay in DPT (delaying all 3 doses) with a decrease in childhood asthma. Asthma, in many cases is TH2 leaning immune system. Vaccines have been found in studies to push the immune system into Th2 direction. Food allergy is Th2 issue. So while there may not be a 1 to 1 relation proven in vaccines causing food allergy. It is quite possible that they do contribute. Saying they don't cause food allergy can be just as flawed as saying they do.

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  3. Denise, there is clear evidence that skipping vaccines can result in the death of children. Before advocates start promoting that people should skip vaccine, there needs to be at least equal evidence the other way.

    If you have clear evidence the other way (peer-reviewed, well-constructed study that's been validated by others), please post it. I'd personally love to see the study you're citing.

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    1. If this is second post - disregard. I hit publish and nothing happened.

      At any rate - here is link
      Delay in diphtheria, pertussis, tetanus vaccination is associated with a reduced risk of childhood asthma.
      http://www.ncbi.nlm.nih.gov/pubmed/18207561

      Plus vaccines go into the body without going in through a mucus membrane - there is study that discussed children encountering food first through skin (especially eczematic skin) generating allergic sensitization versus first encountering said food through mouth, throat, stomach route... It is in book Epidemic of Absence (must read in my mind for anyone in allergy circles)

      I would ask the same of you - can you provide links to peer-reviewed, well constructed study that's been validated by others that proves that skipping vaccines can (probably better word is does) lead to death.

      I am always open to learning. I am not doctor or med professional - only arm chair scientist. Are you a medical professional? How do you discern whether or not the study is well constructed and valid? I am curious.

      This is a complicated discussion that polarizes people on both sides. I am always open to learning. In my opinion, vaccines should be evaluated on an individual basis.
      Thanks
      Denise

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    2. Nope. Not getting lured into the vaccine debate. I read four years of vaccine research when my kids were little.

      The only thing I will say is that I thought of you today when I read this Slate article:

      http://www.slate.com/articles/technology/future_tense/2013/02/will_computers_eventually_make_scientific_discoveries_we_can_t_comprehend.html

      “[W]hen people thought the Earth was flat, they were wrong. When people thought the Earth was spherical, they were wrong. But if you think that thinking the Earth is spherical is just as wrong as thinking the Earth is flat, then your view is wronger than both of them put together.”

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    3. P.S. This is a cohort study that was done a year later than the one you cited. Far more comprehensive; totally different conclusion:

      http://www.ncbi.nlm.nih.gov/pubmed/19255024

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    4. Not into a debate, just food for thought.

      There were also doctors recommending smoking in the mid 1900s, and I'm sure opponents of that were hit with "the earth was flat."

      At any rate, all I'm saying is that it is more complex. And the areas with low vaccination rates have low to no allergies & asthma. Just makes you wonder. I'm sure it's part of a spectrum of modern things that add up into askew immunity.

      Also, look at infant mortality rates across the globe - significant portion of them are not from the things we vaccinate for. I did.

      Food for thought.

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  4. I personally do not think that we need to have a new study that shows that skipping vaccines leads to death. We need only look at our history and the many, many people who did die of diseases for which we now have vaccines (and a lower death toll) and look into the world to areas with lower vaccination rates (and higher death tolls).

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  5. to each their own.

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  6. I don't agree with that when there's potential for harm to others.

    We don't just shrug and say "to each their own" when we're talking about drunk drivers...or smokers...or guns in public places...

    Texas excluded, of course. ;)

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  7. Denise has some good points. Keep in mind new vaccines are evaluated for safety one by one: for example, comparing those who got 90 vaccines to those who got 91. So far no one has bothered to look for aggregate effects, aside from isolated population comparisons (Amish). It wouldn't be too hard to at least pull some data from companies like Kaiser where a significant percentage of parents from otherwise similar lifestyles and environments choose alternate schedules, but there is no momentum.

    My point- instead of demonizing people for simply asking the question, why not try to get them an answer? The best way to shut this talk down is to take away the need for speculation by providing some analysis.

    Finally, foodallergybitch is making the huge assumption that the only response is not to vaccinate. Personally, I vaccinated my kids for everything on time except hep B (i mean, c'mon), but I simply chose to avoid giving them allergenic foods in the few days after a vaccine. That's not such an irrational response to this theory, is it?

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  8. As I've said now several times, there is HARM is promoting the idea that vaccines are harmful. Less parents choose to vaccinate, KIDS ACTUALLY DIE. I knew one. If you pass vaccine skepticism around without better evidence than "well, it *might* be true", then you are culpable in those deaths.

    I did four years of reading on this when my kids were little. I highly recommend that others do the same before they conclude "there are no studies."

    Forming an opinion on the basis of emotion and then finding a few web sites that support it is not research -- it's just polarization. We have way too much of that in our world already.

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  9. Did you ever read:
    Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders by Kenneth Bock M.D.
    or
    The Unhealthy Truth: One Mother's Shocking Investigation into the Dangers of America's Food Supply-- and What Every Family Can Do to Protect Itself by Robyn O'Brien

    I do believe (after reading the facts in these two books) that Food Allergies are caused by the combination of toxins (BPA baby toys, toxic household cleaners, triclosan in soaps/toothpaste) GMO food and (gasp) possibly vaccines ! (the combination )

    Since we got rid of the toxic toothpaste, soaps, and started eating Organic food, my Son grew out of 7 of his 12 food allergies, he is only allergic to 5 things now. Strict Avoidance is what we have been doing. And eliminating as many toxic things as we can.

    I guess I would do the immunotherapy if I was guaranteed that the milk used in the "baked milk" challenge was RGBH-Free and Organic. Or that the peanut dust was Organic, because the problem is in the GMO food to begin with -- if my Son grows out of the last 5 of his food allergies, I don't think I would ever be happy about him being able to eat GMO food freely in a restaurant...

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  10. Anonymous...you summed up basically everything I fight against tooth and nail in this column:

    1) unproven science, particularly vaccines and GMOs

    2) overprotection and parental control games in the name of food allergies

    3) strict avoidance

    4) people like Robyn O'Brien, who make money off of vulnerable parents

    I'm sorry if that sounds mean. It's a big part of why I'm just not writing right now. No matter what I say, people make it into what they want to hear.

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  11. 1.) There are independent studies (not funded by Monsanto) linking Allergies to GMOs

    2.) You call it "overprotection" I call it Advocacy

    3.) Strict avoidance worked for my Son, his immune system is not your Son's immune system

    4.) I took both books out of my local library, so Robyn O'Brien and Kenneth Bock didn't make any money off of me

    It doesn't sound mean, it sounds like you are upset that a kid you knew died from not having a vaccine -- You didn't say whether or not you read the other book...

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  12. Because it worked for your son, its solid science? I don't think you understand.

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  13. Because *what* worked for my son?

    Geez...if you're going to troll me, at least be specific!

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  14. This comment has been removed by a blog administrator.

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    1. Because I don't share sources that are propaganda with no scientific basis.

      Do you even READ my blog?

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    2. No scientific basis?
      Could you please refute any of the peer reviewed published references I provided? Here's one more:
      Kuno-Sakai H, Kimura M. Removal of gelatin from live vaccines and DTaP-an ultimate solution for vaccine-related gelatin allergy.Biologicals 2003;31:245-9.

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    3. No.

      Again, I wonder if you even read my blog. If you do, you'll have read about confirmation bias. If I debate you, you will simply double down on your current beliefs (even though I have no idea what you think a gelatin allergy has to do with the broader question of vaccine safety).

      You want to believe what you believe. You NEED to believe it for some reason. Trolling me helps you to feel good about your beliefs.

      I need to go make dinner now.

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    4. The fact that you ignore evidence only confirms your bias.

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  15. As has been pointed out, there are two debates.

    1) Vaccine vs. no vaccine.
    2) Safe vaccines vs. unsafe vaccines.

    The benefits of vaccines are well known.
    Let's therefore focus on (2).

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  16. I can confirm that my son has a DtaP vaccine induced gelatin allergy. There is no doubt about it. His pediatrician and allergy doctor agree. Why are you denying this? It is not helpful at all. It is actually outrageous.

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  17. You are a liar. Your child is a faker. You made up the conversation with your pediatrician and allergist. You are unintelligence. A laughing stock. Ignorant. A bad person.

    YOU ARE TERRIBLEHORRIBLEOUTRAGEOUS EVERYONEAGREESWHYAREYOUDENYINGTHIS?

    Did I get your "fight or flight" reflex to kick in?

    Now we *could* do the full-out attack on each other, thereby reinforcing everything we already believe. Isn't this how these conversations always go?

    Or, we could agree that the internet is a mirror and that by attempting to convince strangers of what we believe, we're actually attempting to convince ourselves.

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  18. I really wish I could convince myself either way… The sad truth is that this is what caused my son's allergy. He has been fully vaccinated, according to the US schedule of vaccines. I am not advocating against vaccines, but I am informing you of something that did indeed happen. I do not need to convince you but I can state my opinion. There are studies that prove the DTaP - gelatin allergy connection and after the increase in number of gelatin allergies in children in the years 2003 and 2004, the DTaP vaccine is no longer made with gelatin. Interesting. Some kids do not react. I have another child, also fully vaccinated, who had no reaction. Each child's system is different and for some, vaccinations, trigger allergic reactions to components their systems at just a few weeks of age (my son was unfortunately only six weeks when he got that batch) cannot handle. I have no agenda but I do not see why I would not share our experience, backed up by the same science you support.

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  19. Because I believe you are probably wrong and your evidence has not convinced me.

    And it's my blog.

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  20. http://www.ncbi.nlm.nih.gov/pubmed/9949325
    In case you would like to update your research.

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  21. I have found a number of studies linking vaccines and atopy. This article contains links to multiple pubmed studies linking certain vaccines with asthma and anaphylaxis:


    http://vran.org/health-risks/anaphylaxis-allergies-and-asthma/can-vaccines-cause-immune-dysfunction-resulting-in-allergies-asthma-and-anaphylaxis/

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  22. I am curious if the link for allergies and vaccinations isn't in the actual vaccines themselves, but the actual timeline vaccines are given? I actually took the time and wrote down when I was given vaccines as a child, and when my own kids were vaccinated. It was amazing to me. I was given the same number of vaccines as my 3 year old- BUT my vaccine schedule was spaced out over 18 months to 5 years old. My daughters? She got 6 vaccines within her first 6 months! The difference, she has food allergies and I don't. Even crazier, my older daughter was given the same amount of vaccines, except hers were spread out over 12 months. She has seasonal allergies, but no food allergies. I'm curious if there's been any research into the timeline of vaccines? Anyone have any knowledge on that?

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