I'm sure you guys are probably all familiar with my PA background, but I'll recap before I ask my question.
I'm 23 now, at age 3 I had an anaphylaxis reaction to a peanut butter candy. My parents brought me to the hospital and I was okay. Second anaphylaxis reaction was when I was 4 - mom gave me one of those candy coins, not realizing that since the 70's they had started making some with peanuts. That one nearly killed me because she called my doctor, who told her to bring me to his office rather than call an ambulance. Idiot. But I digress.
Since then, I have had only one reaction: last year, a huge hive to my peanut SPT. My RAST had come back .52 (or .53, not much difference), so I got tested since I thought I may have outgrown. I apparently haven't.
Until I found this site (late 2003, didn't register right away after I found it) and all the new "may contain" warnings came out, if it didn't say "peanut", I ate it. Kitkats, 3 Musketeers, SnoCaps, pretzels, etc. Never reacted to anything, including some "may contains" that I ate every single day.
I ate off my desk during school, without washing it first. I didn't have a peanut-free anything. My mother sent wetwipes with me but I never used them. I played touch tag during recess with children who had just finished eating their PB&J's. Never reacted.
I still eat store-bought baked goods, and baked goods my college cafeteria served, even when something with peanut butter was in the next case over and they had 20 year olds doing the serving. I also eat homemade food at relatives houses who keep peanuts in their house, and who have made dishes with peanuts for whatever party we're at. Never reacted.
I eat at restaurants that serve peanut items. Sometimes I even pick up something and eat it without washing my hands first, even if I'd been touching a grocery cart. Never reacted.
I've used Aquafresh (albeit not the Kids version) every single day of my life since I've had teeth to brush. Never reacted.
Of course, I keep my epis, benedryl, and 911 capable cellphone with me everywhere I go.
So I'm wondering, with all the evidence that has been building toward SLIT being a feasible way of raising tolerance levels, if I perhaps did this on my own.
It seems to me that most adults on the board who have grown up with it seem to not have as high a sensitivity than some of the children on this board. We grew up without any knowledge of cross-contamination. I recall one man (who doesn't appear to be posting anymore, I believe his name was Tom) seemed to have the comfort zone I did, until his step-children moved in and he started reacting to PB proteins from the dishwasher. I know Erik feels okay eating ice cream that has been run on shared (but cleaned) lines (as do I), whereas some of the children here have had reactions to items with a very very small risk of x-contamination.
What I'm wondering is if peanut-allergic individuals are actually doing themselves a service when they avoid items with slight risks of cross-contamination, like US KitKat bars where they're made in the same facility as Reeses but a football field away. Could we be decreasing our own tolerance levels by doing this?
I mean, [i]of course there are going to be all levels of sensitivity, and those who do react to traces should definately avoid[/i], but what about those of us who don't react? I've heard tons of stories, both at school and on here, where someone has lived with a pet (typically cats), gone away for a while, come back, and were suddenly allergic or their allergy to the cat worsened without the exposure. The rates of asthma and allergies for children who grow up on farms is significantly and substantually lower than those who grow up in clean suburban/urban environments.
Is there proof that exposure increases sensitivity and that total avoidance helps outgrowing (for PA or TNA, since others like egg/milk are so commonly outgrown)? Or could we be condemning ourselves to ever-increasing sensitivity and no hope of outgrowing by avoiding peanuts so carefully? I know large exposures will most definately increase sensitivity, but what about occasional traces?
Now, I'm not saying to go out and buy brownies covered in peanuts, pick off the peanuts, and feed the brownies to your PA children. Nor am I condoning any changes in comfort zone. In other words, no advice [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] I'm just really curious if perhaps the rise in people with PA and the large number of them who are sensitive to minute traces and contact/airborne has a positive correlation with the advent of "may contain" labelling and better understanding of cross-contamination.
![http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]](http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]){kind=link}
I've had the same thoughts starlight, and like you I grew up without good labeling, no peanut bans in schools, etc. I probably had my share of may contains and slight traces due to manufacturing procedures. My only anaphylactic reactions were from ingesting a blantantly obvious peanut product.
So, some 10 years ago now...when the labeling became better, and has since gotten much better...I don't eat anything that is shared equipment and no may contains. Since then, I've become peanut-smell/dust sensitive and have had more "mystery spot hives", most likely from residue left on things. I got a blood test and I'm Class V...won't do the SPT for fear of full blown reaction.
I'll say though, I don't think I react to traces...b/c I haven't a full-blown reaction in so long (over 15 years now).
There are 2 people I know who carry epi's for peanut reactions, but their last reaction was when they were 2 and 4. Both these kids (teens now) eat may contains without any caution, bakery items, etc. and state that they need to actually have blatant peanut something to trigger a reaction, and at that it's just bad hives...however they carry epi's b/c they know their allergy could go anaph. in the future. Their comfort zones are obviously different than mine and many people on here. But - they also have a different experience.
I couldn't help but wonder about "self-immunotherapy" like you describe as I talked to this camper's mom on Wed morning, sending him off to a 10-day camping trip, with PB as a lunch staple (getting everywhere), may contain granola bars and Krustez pancake mix...without an epipen. He eats may contains, just nothing with peanut as the main ingredient. Much different than my comfort level...though I felt slightly better since 1 child was bringing a duo-Epi pack for bee stings. Honestly, the nightmare would be that this slightly-PA kid's allergy would "change" while he was out camping...but the mom didn't seem concerned, and there is only so much I could do. The camp leader/First Aid/Wildlife guy seemed ok with it...so off they went.
Anyhoot - starlight, I think you bring up a good point, however, knowing the climate of this board sometimes and other people's (parents in particular) comfort zones...I'm expecting an onslaught of worrisome/critical/'how could you think that way' comments. Not that I mean to stereotype....
There was an adult on here a ways back who said he ate plain M&Ms all the time...did he desensitize himself to traces??
BTW - I called on the US Kit Kats...the building has peanut candy making areas, but they are not in the same area at the plain Kit Kats...so I still eat them too [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Adrienne
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30-something survivor of severe peanut/tree nut allergy
Same thoughts here, Starlight. Of course, I would ever give my son trace amounts on purpose (that's what the research trials are for!). He has eaton 3 Musketeers, Milky Way, Snocaps, KitKats, Little Debbie Cakes, bakery cakes, etc. Before the "warnings" and before I "knew better". We now avoid all "may contains" and most "manufactured on". We ask more questions at restaurants, etc.
He has never sat at a "peanut free" table or been segregated from others. He just did not eat obvious peanut products. He did attend a small private school where all lunches were sent by parents. If another kid had a PB sandwich, he chose not to sit next to that kid because he did not want to smell it.
He has never had a "mystery" reaction. Each reaction was worse than his previous reaction. Each reaction was directly related back to something peanut.
I've never called a manufacturer or cleaned playground equipment or shopping carts.
My PA exchange student (age 17) had an even more relaxed comfort zone. Actually biting into a few peanut things and simply spit them out and rinsed his mouth with no reaction. I honestly feel if Shane bit into the same thing we would have had to run to the ER.
PA is sooooo different for everyone. I hope I have taught Shane to not get comfortable simply because he has been reaction free for several years. Way way too many cases of people dying because they didn't think they were "that" allergic.
Would LOVE for him to participate in one of those trials to built up tolerance. Hopefully research will come up with a safe treatment plan for the masses...
Stay safe and have a blessed day,
Bridget
I am one of those parents with a tighter comfort zone but looser than most.
I think the fact that you never had a reaction was just the luck of the draw. may contains means just that, it may or may not. I call food companies and bakeries and interigate them about their warnings and decide if its warranted or not. Companies now are worried about being sued so they would rather slap a warning on a product like kitkats,3musketeers, or ice cream, better safe than sorry. I would just guess that most of the warnings are not warranted but just cya.
And that is exactly my reason for not allowing my child to eat may contains or manufactured in items. Its not worth risking it when there are other options. We do not eat foods cooked in peanut oil even though the protein is removed from to process oil, its not worth the risk. He sits at a table at school with his class but there is a buffer for anyone with pb and the cafeteria doesnt serve pb, again why risk it when it can be avoided.
As for aquafresh, I dont think my sons tummy ache came from that. But it could? I do think that the product should have the warning on it even if it is just cya like all the others. Then its left up to me as the parent or allergic person to decide to use it or not. Many people like yourself would still use it and eat manufatured in and other things, but it should be left to each individual to decide.
I dont agree with your comfort zone, because its your comfort zone, not mine.
I hope I am not part of the worrisome critical stereotype.
This is an area that confuses me. When DD first got PA, everything I read talked about strict avoidance, but now the 'new research' is all about building up tolerance. When I first looked into everything, all the research said that was a myth...but now it looks like they may be heading in that direction again. The pendulum seems to be going that way.
My comfort zone is less than many here, probably since we found out about PA before any reaction. But I don't let her have any may contains, manufactured with, etc. She is only two, can't necessarily communicate that she is having a reaction (Hard for her to explain that her throat is tingly). Depending on what the newest research tells us, I may loosen up (or tighten up) as she gets older.
I figure since she needs mommy to protect her I'm going to go with what most research says...and keep informed about the new info.
When she is older she can develop her own comfort zone.
Quote:Originally posted by qdebbie1:
[b]I think the fact that you never had a reaction was just the luck of the draw. may contains means just that, it may or may not. [/b]
Yeah, I've thought a lot about that, but frankly, I'm not that lucky. I mean, I've had cancer already (which came back 4 times, 3 times I only had surgery for it and the 4th I had chemo) and I'm only 23. I managed to somehow get exposed to tuberculosis and had to take meds for it for a year. If it's a medical problem, chances are I've already had it or I'm gonna have it sometime in the near future. Considering the rate for traces in a "manufactured in a facility" is 1 in 12 and the sheer quantity I ate combined with my luck...I'm not saying it's definately NOT luck, but it's pretty unlikely. hmm, maybe the reason I've never reacted to traces is because my body is so busy flipping out about all its other problems...never thought about that...
Quote:Originally posted by qdebbie1:
[b]I do think that the product should have the warning on it even if it is just cya like all the others. Then its left up to me as the parent or allergic person to decide to use it or not. Many people like yourself would still use it and eat manufatured in and other things, but it should be left to each individual to decide.
I dont agree with your comfort zone, because its your comfort zone, not mine.
I hope I am not part of the worrisome critical stereotype. [/b]
Of course. I do believe that the labels are critical because some people are so highly reactive. Even if research proves my theory right, I wouldn't start eating stuff with the peanut warning just because I tend to freak out when I do. For the next couple hours after eating I end up paying attention to every single breath wondering, "was that one more shallow than the last one?!" Although based on what Adrienne said, I may go back to adding KitKats to my diet. All this talk about them has given me a craving. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] And I don't think you're part of the critical sterotype. It's fine if you just tell what you do and your opinions, I think Adrienne was referring to responses like when someone told CSC that she should be reported to Children's Aid if she let her son to go to a bowling alley. Not cool to come down on people like that.
It sounds like all your bad luck came in other forms of cr@p so maybe your reaction free life is your good luck. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Probably not a fair trade but we dont get to choose our luck do we!!
My mom always kept the number to Childrens Services on the frig if my brother or I ever wanted to call.
I too have had the same thoughts about trace exposures and tolerance. For me, the more control I had over my environment and the less peanut exposure I had - the more sensitive I became. For example, in elementary school I sat near kids eating pb every day without airborne reactions. In junior high I was able to choose where I sat and never sat near kids eating pb - I then began to have airborne reactions. In high school I never even set foot in the cafeteria (we were able to leave campus for lunch) - I began to react to traces in the air hours after the pb had been there. If my mom ate pb for lunch, my throat would itch when I walked in the door after school even though it had been thoroughly cleaned up several hours before. As an adult where I had even more control over my environment and I maintained a completely peanut free home - I would have severe airborn reactions with hives on all exposed skin, swollen eyes, uncontrolable sneezing, wheezing. Now however I teach preschool. I go into the lunch room but sit as far as possible from any peanut eaters - I still have airborne reactions, but it's down to just itching on exposed skin.
Coincidence? Perhaps - who knows .
Rebekah
Starlight, thanks for this post. I've also been thinking this, and a week or two ago I posted a question to see if kids who outgrew had looser comfort zones than kids who didn't, but there were almost no replies.
When I was first introducing peanuts/PB to my DD, she would try some, not like it, and we'd go 6 months w/o trying it again. After 5 or 6 exposures with long lapses in between, she had her first reaction. Now I'm wondering if I had given it to her more frequently, whether we would have avoided the allergy.
I wonder how common it is to react to a may-contain, especially a factory may-contain. What I mean is that something from a bakery would be less controlled, so who knows how much peanut could get in, but in a factory, I would think things would be tightly controlled, so I would think the trace levels would be uniformly small. Does anyone know if there has been a thread on that?
Excellent observation, Starlight. Whether it is correct or not remains to be seen, but you might be onto something.
I have always felt that some are more sensitive than others, and just put it down to the individual. Some being more sensitive that others.
DS has only had the one reaction, when he was 1. Until school he was frequently around others eating PB, and until I found this site, I just figured if it wasn't peanut and didn't have a may-contain label, it was fine. (OK, I didn't let him have scooped ice cream at a shop either). In fact, I never even asked questions at restaurants.
The funny thing is his RAST when he was 3 was really high, it surprised the doctor it was so high. BUt he still didn't have any reactions.
So anyway, I just thought maybe there are two measures of allergy--the threshold amount to cause a reaction, and the severity of the reaction. And one can be high while the other is low. I don't know this, but it just makes sense in my head, from what I know of my son and from others. But I do like your theory. That also really makes sense to me.
Starlight- I also find your theroy very interesting. My DS had first and only reaction at 10 months. He tried DD PBJ sandwich. I wonder if it was due to his underdeveloped abilitiy to process the protein. He is now 23 months and we are doing strict avoidance for 3 years to see if he can out grow it. That being said I find myself slipping up and giving him things without checking first (ie pizza from a new place and not checking first if they use pn products) , He had popicles all last summer and I never thought to look at the lable, sure enough this year I did and it had a may contain warning. I have let him have soft serve ice cream I just ask that they take a cone out of the box, he eats McDonalds often and I don't wipe down play ground equipment etc. I have given him food that appears fine by the lable but have not called the manfact. to make sure it was pn free. I think if he still show the allergy at 5 I will give up hope of him out growing it & will tend to lean towards the looser comfort zone. But that's just how I feel now another reaction and that could all change too.
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