Recovering from Stay with Clueless Relatives--Questions re: Exposure

[SwayGirl]

We went to visit relatives last week, and just returned a couple of days ago. It was my first trip since being diagnosed TNA--specifically almonds and walnuts, with minor positives to cashews and pecans. We've visited this family several times a year for many years, and so feel quite comfortable there. But this trip really was a challenge for me. I learned SO MANY lessons though, mostly on what not to do. For instance, what was I thinking that I didn't tell them in advance about my allergies? This is relatively new (since June) and we don't necessarily speak often in between visits, so I knew they did not know about the dx. But I just thought I would tell them when I got there. Except I walked in and was immediately met with homemade zucchini bread filled with...walnuts, of course. I dodged the offered bread, and chuckled with DH about how ridiculous it was, and what was I thinking that I hadn't called and told them before we got there? But no big deal, stood across the room hoping that Food Allergies for Dummies doctor was right and that it was all perfectly fine....

But then one after another it almost became comical how the allergenic assaults kept coming. Because just after the zucchini bread incident I realized, they have a wood shop on their property, filled with walnut wood. I mean, besides the sawdust that is surely everywhere, they have a kiln where the burn wood. So then I'm wondering about that, until I get distracted by realizing they have planted an orchard of walnut, pecan, and cherry trees!

As soon as I could I did tell them about my diagnosis and the history I have of ana. reactions to very small amounts of allergen, such as cross-contaminated lines and contact rxns. After several conversations and lots of questions from them, I really thought they got it. These are pretty smart people with several advanced degrees between them.  And then, the night before we left, they had friends over for a previously scheduled group meeting, and they cooked up a huge spread. I walk into the living room about 2 hours before the people are supposed to arrive, and everywhere I look, on every table and countertop, bowls of mixed nuts, at least 5 of them. I just couldn't believe it.

I kept telling myself not to get anxious, it was fine. DH and I were taking our kids and theirs to the movies to avoid being in the way for the mtg, so we were leaving anyway. But I couldn't get comfortable for a second after that, wondering how often the dozens of people eating those nuts wiped their nutty hands on the couch, the table...

Sooo, what is really the deal with that kind of exposure? I know I've seen some here who say that it should be fine to be in the same room. And in the Dummies book the author makes that point repeatedly. But I have had many instances where airborne or contact particles caused me to react. In fact, I did not feel great as our trip went on, just felt "off," breathing heavy and hard, itchy, congested, swollen, just not good. It took two days at home to recover to feeling like my normal self. But now I am wondering if it was just anxiety, since everyone says that kind of exposure should not be a cause for concern. (Although for sure some symptoms were pretty clear, like my eyes grew quite puffy and swollen and didn't return to normal until today, our third day home.)

Thoughts from you more experienced folks? Overreaction? Panic? All in my head? Or valid situations in which to remove yourself?

Not so much looking forward to navigating the holidays at my in-laws now...

Swaygirl
Tree nuts, strawberries

[maeve]

My daughter sees the doctor who wrote Food Allergies for Dummies.  He's considered one of the best allergists in his field and he knows his stuff.  I trust his advice implicitly.  BTW, he's also severely allergic to peanuts, so he lives with these considerations daily (he is around his allergen when food challenges are performed at his clinic). 

[hezzier]

First trip since diagnosis, eating at some else's house and tree nut orchards...these would be huge anxiety triggers in my world.  DS is only 8 so I don't know how much of the anxiety he actually feels, but mine would be great.  DS would definitely have been freaked out by bowls of nuts and the orchards, but he is not contact reactive.

For example, DH and I have been at odds with each other this week...reason=school started Wednesday.  My anxiety was through the roof with a new teacher and no permanent nurse hired.  He had no idea.


Came back to add:
I am not trying to discount your experience as a reaction.  Only you can know how/what you felt.  The one thing I can say is that I have learned not to discount my son when he says he's having a reaction.  If your gut says reaction, then you've got to treat it as if it is.

[rebekahc]

I don't care what "conventional wisdom" says or even the experiences of an allergic doctor.  I know that I have airborne reactions.  It's been proven time and time again over the past 40 years. 

My airborne reactions sound very similar to yours - wheezy, tight chest, itchy skin (especially on face around eyes and forehead), sneezing, red & swollen eyes, itchy throat - are all common when I've had airborne-only exposure.  Basically, I feel like a cat sat on my face.  I've also experienced hives and rash on exposed skin (arms), but only a couple of times.

My guess is that in your instance, it was a combination of airborne and contact exposure.  I would assume that multiple bowls of nuts out in the rooms are a common occurrence, so most likely everything you touched had years worth of residue on it - kind of like what would happen to a cat or dog allergic person spending several days in a house with indoor pets even if the pets are not in the room while there. 

[CMdeux]

I agree with Rebekah.

This is exactly how my DD always felt when staying at my mom's house.  Always.

It was not anxiety in her case-- it was the fact that the allergen was just everywhere. 

Now, do most people have to worry about this kind of thing?  Absolutely not.

This is why most conventional wisdom says that it "cannot" be a problem.  Because for about 95% of people-- it isn't.  So those statements are great by way of reassuring most people that a FA diagnosis doesn't have to mean a major freak-out and avoidance of everywhere that anyone else is eating their allergen at any possible time ever...  That's good, I think anyone can see.   Most people with FA should not have to live with that kind of anxiety.

BUT.


The problem with those kinds of blanket statements, however, is that they create instant experts who then violate the boundaries and needs of people who really are in that other 5%... because they obnoxiously tell those highly sensitive allergic people that they "cannot" be right about their own management and allergy.  That's rude, dangerous and downright TOXIC when it comes from family and friends.  It's highly presumptuous when it comes from a physician or nurse that doesn't live with high sensitivity, as well.

It is possible to be "around" one's allergen safely, as I think Dr. Wood shows.  However-- a clinical setting performing food challenges is way different than an uncontrolled setting where most people encounter their allergens.  In such an uncontrolled setting, the ubiquitous contamination of surfaces is a HUGE problem-- and that can easily become an aerosol when it's carpeting being walked on, or a hard surface being "brushed/swept" off.  We've found that aerosol exposures are much more problematic than contact ones.  Contact is no big deal-- unless/until it becomes INGESTION.  Aerosol exposures tend to produce systemic effects for my DD (and myself with shellfish).  Contact is just local and can be dealt with via washing affected skin.

FWIW, my DD has had three separate, severe anaphylactic reactions from occult exposures to her allergens.  One of those resulted in a loss of consciousness with almost no other major symptoms.  I think you're right to be highly concerned.


But not about walnut WOOD.  The wood contains none of the seed-storage proteins present in the nuts.  Just because you're allergic to chickens doesn't mean you can't eat eggs, if you KWIM, adn people who are allergic to milk don't need to avoid beef.

One practical suggestion?  LIMIT your time in this kind of environment, and maintain a safe retreat.  We have done this by staying in a hotel rather than with family.

[maeve]

Sorry but cannot help but feel like I'm being attacked.  BTW, Dr. Wood (whom you'll remember had a reaction himself to unseen trace amount of peanut on a spatula that require 5 shots of epinepherine) also goes to baseball games and is around his allergen in uncontrolled settings.  I was just trying to assure the OP, that Dr. Wood is certainly a source that one can trust.

I agree that there are those who will react in the setting the OP was in and in that setting contact reaction is highly likely.  However, I don't think you can discount anxiety playing a role (especially the fear of being around the wood of the walnut tree when it is the protein in the fruit of the tree that carries the allergenic protein).

Bottom line is for the allergic person to listen to their body and not what anyone else says.  It's better to remove yourself from the situation as the OP did, than to risk teasing out whether it's nerves or a reaction.

[rebekahc]

Maeve, I'm so sorry you feel attacked   

I know I've seen some here who say that it should be fine to be in the same room. And in the Dummies book the author makes that point repeatedly.

I was in no way attacking you - my intent was to refute this statement and Dr. Wood's stance on the issue as mentioned in the original post.

[PurpleCat]

My DD can not shop in stores that have those nut crushing machines like Whole Foods - nuts to nut butters.  I use to forget and bring her and then we'd be in the car with her inhaler and bendryl.  It took a few times and then I got the message.

She'd be grabbing her chest and mouth before we were ever near the aisle.

Not everyone has airborne and yes can be around their allergen in the air.  My DD can not.

[maeve]

Maeve, I'm so sorry you feel attacked   

I know I've seen some here who say that it should be fine to be in the same room. And in the Dummies book the author makes that point repeatedly.

I was in no way attacking you - my intent was to refute this statement and Dr. Wood's stance on the issue as mentioned in the original post.

Thanks RebekahC.  I also did not in anyway want to dismiss the poster's concerns or the experiences of others. 

I think CMDeux made a good point that Dr. Wood's advice is probably applicable to a very good percentage of the FA but there will always be outliers.  I think the advice given to the OP to remove themselves from the situation and to limit time spent in those situations is good.

In fact, I was very heartened by our school meeting today when all the staff present told DD that she should never hesitate to remove herself from a situation where she feels unsafe because of her allergies.

SwayGirl, please trust your instincts.  I'm still learning after 11 years how to manage my DD's allergy and how to pass on what I learned.  One thing I have learned is to be vigilant and trust your instincts.  If you don't sense that the people around you get it, then get away from them even it if means leaving a restaurant or party.  Don't hesitate to speak up for yourself.  We recently removed peanuts that were set out at my nephew's graduation and put them away somewhere before DD had a chance to see them.  Thankfully, there were outside on a patio but we still watched her.  (Though to be honest her exposure to the two cats and the dog in the house were as just as great a concern).

[CMdeux]

Maeve, I'm glad that you understood that my comment was basically that such statements are good general advice.... but may simultaneously be bad particular advice for an individual, depending upon circumstances and history.

Learning to trust one's own instincts in managing food allergies is a real high wire act at first.  It does get easier to do that with time, Swaygirl.   

[GoingNuts]

You've gotten good advice Swaygirl.

One thing I'm going to add, is not to discount the presence of an unknown allergen when you're in a different environment.  For example, I have no idea what the heck blooms down in the D.C. area, but unless it's the dead of winter both younger DS and I react horribly to something there.  The true FA I have to is cantaloupe; he's the one with multiple FA's. 

We always stay with my MIL when we visit, but after our last visit with DS (over 2 years ago) we decided that if he was with us we would stay in a hotel from now on.  It's just too exhausting dealing with the constant FA reminders. 

[maeve]

GN, I live in the DC area and I have to say that even in the dead of winter, there's something that sets me off.  There's really something weird about this area allergy-wise.

[SweetandSour]

I don't care what "conventional wisdom" says or even the experiences of an allergic doctor.  I know that I have airborne reactions.  It's been proven time and time again over the past 40 years. 

My airborne reactions sound very similar to yours - wheezy, tight chest, itchy skin (especially on face around eyes and forehead), sneezing, red & swollen eyes, itchy throat - are all common when I've had airborne-only exposure.  Basically, I feel like a cat sat on my face.  I've also experienced hives and rash on exposed skin (arms), but only a couple of times.

My guess is that in your instance, it was a combination of airborne and contact exposure.  I would assume that multiple bowls of nuts out in the rooms are a common occurrence, so most likely everything you touched had years worth of residue on it - kind of like what would happen to a cat or dog allergic person spending several days in a house with indoor pets even if the pets are not in the room while there.

I agree. I too have had airborne reactions. One of them was pretty nasty.

[SwayGirl]

First trip since diagnosis, eating at some else's house and tree nut orchards...these would be huge anxiety triggers in my world.  DS is only 8 so I don't know how much of the anxiety he actually feels, but mine would be great.  DS would definitely have been freaked out by bowls of nuts and the orchards, but he is not contact reactive.

For example, DH and I have been at odds with each other this week...reason=school started Wednesday.  My anxiety was through the roof with a new teacher and no permanent nurse hired.  He had no idea.


Came back to add:
I am not trying to discount your experience as a reaction.  Only you can know how/what you felt.  The one thing I can say is that I have learned not to discount my son when he says he's having a reaction.  If your gut says reaction, then you've got to treat it as if it is.

Yes, I think in the end it was a fun cocktail of anxiety at a new and stressful situation combined with actual trace exposures that eventually left me feeling pretty crummy all the way around. I hope the school has hired a nurse, or at least a competent temp. I can only imagine that would be incredibly stressful!

Thanks for your thoughts!
Swaygirl

[SwayGirl]

I don't care what "conventional wisdom" says or even the experiences of an allergic doctor.  I know that I have airborne reactions.  It's been proven time and time again over the past 40 years. 

My airborne reactions sound very similar to yours - wheezy, tight chest, itchy skin (especially on face around eyes and forehead), sneezing, red & swollen eyes, itchy throat - are all common when I've had airborne-only exposure.  Basically, I feel like a cat sat on my face.  I've also experienced hives and rash on exposed skin (arms), but only a couple of times.

My guess is that in your instance, it was a combination of airborne and contact exposure.  I would assume that multiple bowls of nuts out in the rooms are a common occurrence, so most likely everything you touched had years worth of residue on it - kind of like what would happen to a cat or dog allergic person spending several days in a house with indoor pets even if the pets are not in the room while there.

Oh, that makes me feel so much better to know that someone else has a similar reaction (although I'm sorry you have to experience it too). That's a really good point about the years of residue. Thanks for making me feel a little less crazy!

Swaygirl