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

     and 

More allergic kid = need for stricter avoidance of foods

     then 

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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