Sunday, February 17, 2013

Why Food Allergy Parents Won't Use Thresholds

So apparently I woke the Tiger Allergy Moms with the "peanut is probably already in your food" blog post.

As I said in my follow-up post about food allergy cross contamination, I really didn't even realize this was controversial...or not common knowledge. After all, the study I cited (that showed 5% contamination with may-contain products and 2% contamination with products that had no label at all) was sponsored by FAAN (now FARE), overseen by Dr. Sicherer and carried out by FAARP, all cornerstones in our little food allergy castle.

However, poke a Tiger Allergy Mom and you're likely to get scratched. The blog post vaulted into my Top 5 for traffic and generated the longest comments exchange yet. I've puzzled over why this is and the conclusion that I've reached is that I unintentionally took away the Blue Ribbon for Total Avoidance. By saying that people were eating peanut they didn't know about, I was somehow apparently also saying their child's food allergy was not as serious. Here's the logic that I think is at work:

If lower threshold = more allergic


More allergic kid = need for stricter avoidance of foods


Not strictly avoiding foods means, by extension, that a child's allergy is less serious

I do understand this logic to a degree, since lower thresholds are often associated with more severe reactions. But — since most of us don't have any idea what our child's threshold is, we use our level of avoidance of allergenic foods to signal to others the severity of our child's allergy. After all, if your child is really allergic, super allergic, most allergic, truly allergic, then it's really important to avoid everything. Even microscopic exposures. Right? And if you haven't been avoiding those exposures (due to mislabeled foods), then your child is probably not as allergic...and you're somehow not as good a mom. Blue ribbon denied.

I didn't actually mean to stir this all up with my post, but it points out an important issue here: the logical approach of FARE and the FDA is in direct conflict with the emotional approach of FA parents.

The unintentional consequence of FALPCA was more food labeling, but not necessarily more helpful food labeling. I have commented before on our post-FALPCA experience of having roughly a quarter of all the processed foods we used suddenly sprout new warning labels. These were foods we had used for years in many cases (and called about in most cases). When we called again to talk to manufacturers, we were told that the food formulas had not been changed at all, but that warning labels had been added to give the most information possible.(In many cases, we suspected it was simply CYA, as some companies put the same, comprehensive warning labels on every food they made.) What were we to do? We dropped the foods, and our son's options were instantly far more restricted.

This is the concern manufacturers have with putting quantitative allergen levels on manufactured foods. If they start labeling, we will start avoiding, even if those foods have been safely eaten up until this point. Why would they willingly restrict their consumer base, especially when these foods are being (for the most part) safely consumed today? Why rock the boat?

FARE and the FDA have been studying the issue of food thresholds to see if there's a better way to report out the amount of allergen in foods than cautionary labels. There is also a lot of work going on right now to determine the distribution of thresholds using both direct research and probabilistic methods. Researchers know that there is a distribution of dose responses to allergens, and that only about 10% of allergic consumers (called the ED10 in industry speak) will react to levels at or below 12 mg, or about 1/25th of a peanut.

There's another important concept that doctors and researchers accept: dose response. The concept here is that there is the start of a reaction where mild symptoms occur and a tipping point where more serious symptoms occur. The ED10 is higher for reactions that cause objective symptoms — things a doctor can actually see happening — vs. those funny sensations in the mouth or throat, or a stomachache. (Hence, the question on the survey about "would you eat a food that would cause only mild symptoms.")

The bottom line, though, is that all this new labeling and data will be useless if food-allergic consumers refuse to use it. Since the last missing piece of the puzzle is a food challenge to determine a child's actual threshold level, and the vast majority of parents will not want to have their child undergo a food challenge, there's going to be limited value to measuring allergens. Without that actual, objective data, food-allergic kids can all continue to be like the children of Lake Wobegon where every child is above average (or, in this case, highly allergic due to a microscopic threshold).

I think many of us parents really don't want to know, as we think quantifying our child's allergy will somehow create a stratification of "really allergic", "somewhat allergic", etc. It's the same resistance I perceived when I talked about the fear associated with component resolved food allergy testing.

I'm not saying this is easy, or cut and dried. But I do think more information is generally better. I hate to see a situation where both food manufacturers and parents of allergic kids really don't want to give – or get – more information. Is ignorance really bliss?

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  1. Garden Girl here,

    I actually like your point of the possibility of threshold challenges for food allergies. I would sign my child up for that. He is outgrowing milk and can eat baked and some minute amounts of non-baked and a LOVE that he is outgrowing milk and can eat 'may contains' and other things now. I think it is great. And it would be very cool to know his threshold for other allergens (but of course thresholds can and do change--still if it were something he was outgrowing the way he is dairy it would be very interesting and helpful). So, you are right about that.

    That said, your point that we are already eating peanuts is something I disagree with. The FAAN newsletter I quoted in my response to you in the other article said that ZERO samples that did not have peanut warnings were found to contain peanuts and only 5% of those that had warning labels. Most of us are NOT unknowingly eating peanuts. And your 40% stat about milk in chocolate to prove your point just made you less convincing. (The same way this does.) It used to be that 17% of advisory labeling food did contain. That % is much lower now with only 5% of peanut warning labels containing.

    I also had to call companies pre FALCPA and did not experience the 20% loss of foods that you experienced. not even close. That might be because we have non top 8 so I was calling companies and had a more restricted use of packaged foods that you did with your allergy set. My son had reacted to a food several times that ended up putting warning labels on it. I don't remember much else. I didn't have to pull anything that we had been using until a few years later when we lost Tings but again, we lost those due to DS REACTING, not from a warning being added. So, my experience is quite different from yours.

    It has nothing to do with being competitive about how sensitive my child is. If I could get away with not heeding warning labels I would be all for it. If I could get away without calling companies I would enjoy it. That isn't going to happen any time soon if ever as we have a number of non-top 8 so we are pre-falcpa in how we live. DS's most sensitive allergens seem to be one of his non-top 8. he is starting to outgrow 2 top 8 and the most peanuts have caused him seems to be hives and some lip swelling. So, added info about those things may not do much for us with our allergy set. I would support anything that would make life easier for others with FAs, though.

    It would be great if this ends up helping others.

    My experience pre and post FALCPA was that it gave me some added info and it also TOOK AWAY some access to needed info (regarding non-top 8 and companies ended up refusing to give info about them that used to give this info). So, who knows what this might mean for us regarding access to info on non top 8.

    I do not feel you understand my concerns or what I was saying in my posts to you. I wonder if I understand you and your concerns.

  2. Food allergy Bitch. I am glad to see your blog. Please visit my site Moms are creating a march in July 4th to label GMOs, which I believe are the source of the stomach irritation and leaky guts which are creating the food allergies in the first place. And would love to partner with you. Please contact me with your thoughts and thank you for all you do. Anotehr boy died today from a cookie. Time do something now.

  3. Zen, I've done a lot of very technical reading about GMOs. I do support labeling, but I'm not at all convinced GMOs are the source of "leaky gut" as you call it. It's one of those too-easy correlations people seem to make on the basis of timing alone.

    Not saying it's not possible...but food allergies are just as prevalent in countries that have banned GMOs as they are in the U.S. If there is a causal relationship, it's very complicated. I'm betting on the more straightforward path.

    Good luck with your march, though! It's a worthy cause to demand to know what's in our food.

  4. Do you have an email contact? I would like to contact you privately off the blog site regarding this post. How can we reach you. I am an academic allergist who would just like to ask you a question regarding this excellent blog on thresholds.

  5. Booandbrimom at gmail dot com.

    If you could please let me know you saw this so I can delete it, I'd appreciate it. (Just trying to avoid the spambots!)


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