My sense-- and I could be wrong-- is that there are an increasing number of allergists who are growing concerned that there is an emerging, but as yet anecdotal, set of narratives involving... well,
weird things. With peanut allergy in particular.
Given the rise in study participation and the level of oversight offered in those studies, the things that patients and members of communities like this one have known for some time-- that is, that there seems to be a subset of people who
cannot be desensitized, there seem to be people for whom increasing tolerance is difficult, and that there ARE instances in which the allergy recurs in spite of patient compliance with ongoing consumption.
SO. There
isn't certainty to start with regarding what it means to be "not allergic" versus "tolerant" versus "allergic" to start with. All of those categories may well be artificial constructs.
Also emerging is that OIT may not work the way it is supposed to... and that
reactions during challenges don't always, EITHER. Delayed/biphasic reactions are becoming a BIG worry with many challenges.
It's also becoming clear (which is something that I wondered about when it first appeared) that the parameters and meaning associated with component testing isn't as clear cut as it was first assumed, either.
The bottom line is that the entire field has tried to take what is "mostly" true for patients with food allergy and apply it to EVERYONE with food allergy-- and it doesn't work. It's just now becoming evident, because up until recently most of the outliers weren't eligible for studies to begin with, so researchers never had a chance to come face to face with this stuff in a way that they couldn't rationalize some other way.
KWIM?
The mechanistic stuff still isn't well understood. Until it is, there are going to be patients that fall through the cracks because they don't 'fit' the general rules.
But those who closely follow the research seem to be distressed because they are
worried that applying "one size fits all" and "it'll be FINE, really" to everyone is eventually going to result in one or more fatalities as more regular clinicians become more aggressive with OIT and challenges.
I know that is what our allergist is thinking. He has implied that it is also what some folks like Burks and Sampson are thinking.
I'm sorry that this has been so emotionally hard, Hopechapel. I don't find your concerns about the social aspects of the allergy petty AT ALL. It is a real set of concerns, and it's your primary one because of your son's apparently high threshold. That doesn't make it less real or important.