Need insight on peanut allergy severity

[Hurra]

Hi all

First time poster. I do not have any food allergies but my spouse does. She is allergic to chocolate, any and all types of seafood, and peanuts. When I met her 10 years ago, her peanut allergy was not severe. One had to have a peanut product right in her nose for her to even have a reaction. But apparently, over the years, it became severe to the point that she will have a reaction if she is in the same room with peanuts or peanut products. She has EpiPens provided by her doctor given the severity.

Recently I discovered my wife had lied or deceived me regarding some things that involve our marriage. In the course of discovering these things, I discovered she eats chocolate bars when I'm not around. I know some people grow out of their allergies but she has stated to her friends and family it has gotten worse. She has been extremely cautious with any food containing peanuts, even with food I eat. At restaurants she ensures there are no peanuts around and there is no cross contamination of fish being cooked.

So one of the bars she ate has a warning on the packaging, 'may contain peanuts' and another bar she had that has an ingredient of 'kosher gelatin'. This shocks me. She has stated she can't eat gelatin and obviously eating something that 'may contain' peanuts has to be taking extremely high risks of a potential reaction.

I don't fully understand the variety of severity or what these warning messages mean. For you folks with a severe peanut allergy, is 'may contain peanuts' just a legal disclaimer by the manufacturer just in case there is a slim chance there could be peanuts in their product? Or do you guys take these allergy statements seriously and totally avoid those products.

I know she has been eating chocolate for a fact, perhaps for over a year but definitely within the past 2 months. So now I question the other allergies. She has used her allergies in the past as a way to avoid certain events / social gatherings and create family tension so I really want to get to the bottom of this.

Thanks

[CMdeux]

Okay--

"may" contain means just that-- usually.  The exceptions are when a manufacturer (and this is common in confectionery) use "rework" to make products.  Meaning that coating chocolate which is used on nut-containing products is then collected and remelted to coat OTHER products.  This is how things like M&M's are made, btw.  The other exception is when a manufacturer has decided that dealing with tracking or answering questions is just a PITA, and they slap the disclaimer on it so that people with allergies just quit bugging them about it.  That is unfortunately somewhat common as well.

So.

Being UNcharitable, yes, it's possible that there has been exaggeration, maybe even fabrication.  Honestly, it sounds (from your descriptions) as though at least some of this could be because of other mental health issues...  BUT--

it's also possible that the product in question is one in the category of "I trust this and have for years, but I can't explain it very well to others and I'm sick of trying."  Also possible that this is something that your spouse has vetted with the manufacturer, and feels that her threshold dose (that is, the amount of protein needed for a reaction) is high enough to get away with it.

I can't really speak to whether or not this is a case of fabrication-- chocolate would be an unusual allergy, certainly-- and it sounds as though that is NOT an allergy if she is eating the allergen in question, but-- again, the caveat-- so much chocolate is contaminated that it's often easier to just tell others that you're allergic to chocolate than to try to explain cross-contact, manufacturing practices, etc.  with respect to nuts.  Their eyes glaze, quite frankly.

I, too, avoid a lot of family/social gatherings which are about food.  I just do.  I've learned that my family in particular is not to be trusted, no matter what kind of noises they make-- they just don't (can't?) get it.  I'm happier not doing that stuff. 

My advice to you is twofold:

a) marital counseling-- you clearly have trust issues, and I'm guessing that she does as well (or certainly WOULD if she knew you were questioning her allergies... if she has epipens, they can probably kill her... and wow, does that ever mean "trust" is a thing with your partner)

b) go together to her allergist-- and if she doesn't HAVE one-- make it a point to FIND one.  Her life sounds fairly restrictive, and maybe it doesn't need to be quite that restrictive anymore.

THEN, you'll both be on the same page.  Better overall. 

From your spouse's perspective, if you're doubting her allergies, she shouldn't trust you.  Sorry-- but I have life-threatening allergies, and anyone that doubts that is a risk to me if I'm in direct contact with them, sharing food or kitchen space with them.  The doubt alone is enough to tempt them to do dumb stuff, or to 'test' my allergies.  BTDT.  NO bueno. 


Good luck.   

[Hurra]

Thanks CM

The bar was a Twix bar if that matters. But there is evidence there has been a wide variety of bars.

I can understand not wanting to explain the cross-contamination etc but to lie about it to her husband and her parents who she is close with? they go out of their way to provide her allergy-free meals.

I also understand wanting to avoid social situations like that with family/friends who say they get it but obviously don't when they overlook some ingredient in something.

I asked her about the chocolate but she denied it. I did suggest we see her doctor on another matter but she said she was not comfortable with that idea for various reasons (which made me suspicious)

Anyway, I appreciate the post but I just wanted to get a better understanding of what such messages mean to others with severe peanut allergies.

Thanks again.

p.s. I also wanted to say I have learned to be very careful about what I eat, and what I buy for food. Sometimes I've been the one to catch an allergen in a food she is about to eat. And I would never take a chance with some secret way to test her allergies.

[devnull]

Marital issues aside, whatever they may be.  FALCPA covers the labeling laws.  The rest is manufacturing process and voluntary disclosures that have no consistency or requirements to contain specific language or be uniform in any way.

That's a lot of empty wrappers to rescue out of the trash with surprisingly intact labels.

[SilverLining]

Thanks CM

The bar was a Twix bar if that matters.

Considered safe in some countries but not others.  I think they are safe in the UK.  My husband occasionally buys me imported candy that is not safe here, but is safe in the UK.  (I don't particularly care for Twix, but there are other candies.)

p.s. I also wanted to say I have learned to be very careful about what I eat, and what I buy for food. Sometimes I've been the one to catch an allergen in a food she is about to eat.

I've missed my allergen in a list of ingredients too.  Fortunately my husband or son saw it before I ate.

And I would never take a chance with some secret way to test her allergies.

Good.  Because, no matter what you suspect, if you intentionally feed someone a food they have told you they have a life-threatening allergy to....that is attempted murder. 

I concur with CM. It sounds like marriage counselling may be in order.

[CMdeux]

Oh, I also left out the other category of explanation-- which would explain how consumption didn't lead to some kind of overt or life-threatening reaction.


"I'm sick of this, F*** THIS, I'll eat what I damned well please today"


This is-- perhaps not surprisingly-- much more common in adolescents and adults when they are under a lot of other pressures (marital/family tensions definitely tend to push ME to risk-taking behaviors, I'll say that much).

Okay, so how is it that she has been "getting away with it" for so long?

Wellllll...

eating "may contains" that really DO mean what they say means maybe they DO contain, and maybe they don't, and so any 100 samples of that particular foodstuff might have just 10... or 40... or 5... that DO contain the allergen.  Depending upon threshold, maybe only 50% of those contain enough protein to cause a reaction on the best possible day... and maybe 75% of them do on the worst kind of day, in terms of how much one's "allergy cup" will hold without overflowing (causing a reaction).  That allergy cup thing, by the way, is something that physicians often use to describe what life is like with severe atopic conditions.  If your immune system is already stressed because of hormones, illness, etc. etc. then the cup is "fuller" to begin with, and you have less margin for error.

So could my peanut-allergic DD eat a Twix and get away with it?

Maybe.  If she got very very lucky, I mean.  I sincerely hope that she would never feel the need to do something so dangerous, personally.    For reference, she has experienced anaphylaxis from amounts of her nut-allergens that are small enough that we've NEVER been able to figure out how some of them occurred.  So she's extremely sensitive, with a low dose needed to elicit very severe reactions. 

My threshold for oranges, on the other hand, is high enough that I sometimes gamble with just picking slices off of a garnished restaurant plate.  I wouldn't dare try that with shellfish, though.  My threshold is too low.  On the other hand, I do occasionally risk some fish-- even though I know that there is cross-contact risk there.  Sometimes, dammit, it's just worth some degree (low) of risk-- to me.  If I were having reactions from that choice, I'd change my mind, for sure.

The greater concern, it sounds like, is whether or not your spouse is choosing to control others by exerting UNNECESSARY control over their food choices.   I mean, if she's willing to EAT chocolate which is clearly labeled for cross-contamination risk, then yeah... asking others to make their kitchens nut-free for her on the off chance that they put her at risk during a holiday meal...  mmmmmmmm...


seems a bit much.  Naturally, I'm basing that statement on what you've shared here, and so I don't have all of the detail to say for sure what I think of that.  On the other hand, you're sounding as though you're suspicious due to other behavior unrelated to food allergy, too, and it's at least possible that there is a rational explanation that does NOT involve any degree of deliberate obfuscation or misdirection. 

[devnull]

I don't mean to pry, I mean REALLY not asking about your relationship there, OP.  But when you say you know what she's eating though she denies it I'm not imaginative enough to understand how this dietary outing is taking place. Or, why.

[CMdeux]

In conjunction with that-- the other possibility that I hinted at above, I'll state more openly-- for someone with life-threatening food allergy, if you get to a place in your own head where you are so low emotionally that you seriously just DO NOT CARE what happens to you, um-- risk-taking takes on a whole new meaning.

Could be a sign of depression and/or a cry for help, too.  As expressions of existential distress go, it seems pretty weird, I know-- but knowing what it is like to live with a food allergy, I can definitely see it going that way under some circumstances.

[devnull]

I can think of at least 20 different explanations and that would not even be exhaustive list.  I'm not sure what OP is asking advice about.

[Hurra]

I was looking for advice as to how serious someone with a severe peanut allergy takes one of these allergy statements on a food product. Is it a low risk to eat it or is it a high risk.

I don't think she is depressed or crying out. She seems mentally fine otherwise.

Thanks for the great replies, it helps.

[rebekahc]

Often people with PA are not educated as well as they should be about cross contamination, so they don't understand the risk of ignoring warning labels.  Others justify ignoring the labels as them being there just as CYA - especially since any warning labels are voluntary and not regulated or standardized in any way.  However, studies have shown that about 20% of 'may contains' do contain, so it's essentially playing Russian roulette to ignore those labels.  If your wife truly reacts to PN just being in the room with her, her threshold must be pretty low and eating contaminated items is quite risky because a low-level contamination that might not be enough to illicit a reaction in some allergic people would cause an extremely sensitive person to react.  Therefore, usually those who are very sensitive will avoid 'may contains'.

[Janelle205]

I'm not peanut allergic, my most severe food allergies are not things that you will find on a warning label.

That said, I sometimes really want something that is on the safe/unsafe line.  Like, want it enough to consider risking it.  Sometimes I'll look at things in the grocery store to see if the ingredients have magically changed or if the package says something different.

I can see where if my marriage was in trouble or there were other issues stressing me out, I might just do it.  Because it would 'probably maybe' be ok.  Allergy management can be exhausting.

And I can totally see putting the wrappers in the trash can or not telling the truth about it as well.  I kind of feel guilty and like a bad person for just posting here that I've thought about it, even though I haven't done it.

[CMdeux]

   Janelle- thank you.  That was exactly the mindset that I was getting at.

[Macabre]

We assume all chocolate is unsafe for my son with peanut allergy unless it's proven safe.  I've heard of a few people being allergic to chocolate, but I assume it's really peanuts--but I don't know.

I don't think this issue means you have problems with your marriage or that you need counseling. I think it's really hard to deal with this.

[SilverLining]

I don't think this issue means you have problems with your marriage or that you need counseling. I think it's really hard to deal with this.

My comment about that related not just to the allergy stuff, but other comments not related to allergies at all.