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Topic summary

Posted by femb0t
 - December 22, 2011, 12:13:49 PM
I'm finally getting blood tests done this coming Tuesday (after two months going completely undiagnosed, but having reactions to a number of different foods).  It's either adult onset food allergies/anaphylaxis or perhaps there is an underlying cause... who knows, but I'm being tested for everything, allergens included.

So far, my favorite comment has been: "Sounds to me like you're just having panic attacks when you eat."  Because apparently adult-onset food allergies are impossible.  Clearly they are.   :insane:

Once this is actually confirmed -- whatever it may be that I have -- I'll be sure to start waving results in the faces of the people who think I'm crazy.
Posted by suevv
 - December 14, 2011, 12:02:45 PM
Love the poker strategy.  (Humming Kenny Rogers song right now).  That's my new mantra and it's already coming in handy.  See my post a couple minutes ago!

Sue
Posted by YouKnowWho
 - December 12, 2011, 09:45:44 AM
The problem with Celiac is that "glutening" may not be immediate.  Some may have a reaction within a few hours or that yuck feeling for days after.  Some don't react with trace amounts, the way those with allergies might.  It's a challenge because "glutening" may result in later in life issues including cancer.

So yes, I understand why you think this is a clueless person but they are probably going by what "allergy training" they received or how many others handle allergies.  Many of us are here because our children or ourselves have reacted seriously in the past - look at our membership numbers, even combined with other allergy boards and look at the percentage of us compared to the numbers of those who are diagnosed.  I am guessing allergy board members only make up about 10% of those with allergies and I feel like I am being generous with that percentage. 

You said it yourself - you were in there because your allergic child was not with you.  And yes, maybe his answer seemed callous to you but I am constantly faced with those dealing with allergies that think doing what he said was enough.  And yes, I am also faced with parents who try to convince me that my child is not allergic as yours because we don't need an epi (though in many cases they clearly do).  I have learned to nod and say "If you need an allergist, I have a great one" and go about my day.  You might find that callous as well but I try to save my breath on fights I can win and for prayers for those who clearly need them.

Top comments that irritate me?

"Oh but he can have white bread" upon hearing my son is allergic to wheat  :banghead:

"Oh, but at least he is not allergic to peanuts or nuts!"  (As in, he can't die from his allergies to wheat, rye and barley or egg which he has had ana rxns to in the past).

"Oh I could never do that" - when I explain the numerous allergies we are avoiding in the house (gluten, egg, certain spices, banana, eggplant, peanuts and tree nuts).  Yeah, you would sit there and let your child starve to death because they are not worth it.  ~)

I've learned to discount the "Oh he has Celiac" comments mainly because it's becoming more common.  Depending on the situation, I don't even correct them anymore.  I did correct DS1's teacher though because she understands Celiac from the sense that her niece's have it but I need her to understand that DS1's reactions are immediate and severe.

Posted by Carefulmom
 - December 11, 2011, 09:56:18 PM
I used to try and educate people like that figuring if I didn`t say anything and later they rinsed the scoop for a pa person and assured them that the ice cream was safe, and the pa person reacted, then it was partly my fault for not having said anything.  I used to always try to help people.  But after dozens and dozens of times that I have tried that and been told things like my kid is not that allergic, he only gets wheezing when he eats it, or he can tell when he is reacting so he can just stop eating it if he starts to react and so he doesn`t need to carry epi, and I respond and get nowhere, I stopped saying anything.  It really is not my responsibility.  But a month or two ago, I saw a mom in See`s about to get her nut allergic child a chocolate that did not have blatant nuts in it thinking that meant it was safe, I had to say something.  Child was 12 years old, and this mom was teaching entirely the wrong message to get her 12 year old candy at See`s that was almost certainly cross contaminated with nuts.  Even the employee at See`s said something, and pointed to the sign saying that all their chocolates are cross contaminated with nuts.  The mom said her child was "not that severe", so then I spoke up.  Dd was not with me.  I accomplished nothing.  At least the girl had epi on her (I asked).
Posted by CMdeux
 - December 11, 2011, 08:55:45 PM
Oh, I'm over a decade in and I still have those days.


Where I later look back and just think:

:bonking: :dunce: :rant: :footinmouth:



It does worry me that someone so stupidly confident in their ignorance might well cause a fatal reaction in someone who, as you say, is too new (or unlucky) to know better than she does. 

Posted by tigerlily
 - December 11, 2011, 08:09:14 PM
FA child counseling? I'm asked quite frequently if he'll outgrow. As we have the fish allergy too, there's a great research study showing 7% will outgrow....if there aren't multiple food allergies. And the reactions are not anaphylactic. And it's a leap year. For 7%. Not holding my breath for 7%.

Three years ago, I used to get scores of folks telling me excitedly about NAET. How we just have to try it. That used to bother me. Now I realize that the person will just as likely tell me I can try desensitization--it's widely available, didn't I know?

The looser comfort zone and the assumption that if so-and-so will do it, and they just get a rash, or watery eyes, or their tongue tingles and they know to stop. I don't get that so much anymore.

I should have just walked away. I just felt she was criminally clueless. It's one thing to be clueless and another to be telling some newly diagnosed family that rinsing the scoop is enough. Plus, very tired and made the poor choice to respond.



Posted by kouturekat
 - December 11, 2011, 09:23:49 AM
I think the worst part is when clueless commenters attempt to counsel the FA child.

I remember Ryan coming home one day in 4th or 5th grade.  He was happily eating lunch at the PF table when his substitute teacher was talking to him about his peanut allergy.  She proceeds to tell him that he'll probably grow out of it (because I guess she knew a person or two who grew out of other food allergies.

He was kind of happy when he came home.  And I'm the one who had to nip it in the bud and tell him he probably will never grow out of his peanut allergy.  He'd need a miracle so don't even think it will be possible in his lifetime.  The best thing to hope for is some type of desensitization.

Really, don't give my kid hope unless you know what you're talking about.  There is a 99.9% chance he won't grow out of it.  I don't like trying to fix other people's errors when it pertains to my kid and his FA.  He's quite happy with life in general, his PA is not an issue for him, and don't feel sorry for him.  He's pretty darn happy and doesn't need sympathy. 
Posted by twinturbo
 - December 11, 2011, 06:37:56 AM
Poker strategy. Know when it's best to cut your losses and walk away from the table.
Posted by Janelle205
 - December 10, 2011, 07:22:47 PM
And part of the problem is other people with allergies who have MUCH looser comfort zones who would be a-ok with the folks at the ice cream parlor just rinsing the scoop off or getting a new one. 

And while I'm glad that they can afford to have a comfort zone that loose, it doesn't really make my life a much better place.  For some people, it is ok to 'just pick it off'.  And everyone seems to know one of those allergic people that are 'so much easier to accomodate' and 'don't make a big deal of it'. 
Posted by CMdeux
 - December 10, 2011, 07:18:19 PM
Ugh... well, yeah.. at this point, honestly?  I just figure "ahhhh yes.  We can't really fix "stupid" now, can we?" and I let it be.  Some people just really can't go there-- they lack the base wattage, if you see what I mean.

Yes, those people are a SERIOUS danger to people like DD.  I point that out to her, anytime the opportunity presents itself.

THESE are the people she's trusting with her life when she assumes that they are providing her with good information and taking her seriously...



<sigh>

The hardest part?

The fact of the matter is that what this server offered probably IS enough for about 90% of people with true food allergies.

It's probably enough for 99% of people about 95% of the time, even.

It makes it that much harder for people like this to understand when all of their efforts are simply inadequate at a fundamental level.... but only for a small minority of people.

     :disappointed:  Major bummer for us (and this probably includes most of us here at FAS).

But it's not much different from "Oh, it's SUGAR-FREE, so it should be fine for you since you're diabetic."   :dunce:
Posted by tigerlily
 - December 10, 2011, 07:08:06 PM
DS1 is away this weekend. DS2 has a free coupon for the local ice cream shop. No known allergies. It's a treat which we never do with DS1. First, I have to read all the flavors to DS2 as he can't read. He chooses a flavor. Then I have to explain about cone types as he hasn't had cones much to know the differences. Then I make the fatal flaw in explaining our delay, "Oh, we just never go to ice cream shops as DS1 as nut allergies".

Server: "Ooh, I can go get a clean scoop for you".

Me: "No, this guy doesn't have food allergies. ....But you do know that a clean scoop wouldn't help right? Were clean scoops used previously in that container? (tons of nutty flavors in the display case too) And you don't know in what order the flavors were made--did maple walnut get made first that day or pistachio before cotton candy?"

Server: "I know about food allergies. I have gluten allergy. Celiac. It is the worst thing ever. So I totally know about allergies."

Me: "We've been to the ER three times."

I don't go into describing his reactions. How if we didn't have a syringe he wouldn't be conscious for the paramedics. Maybe I should have said nothing at the clean scoop comment. Fuming later, I'd like to write the owner and inform him a server is quite confident in wrongly assuring the allergic on precautions.

At this moment, however, I would like to nominate her for my clueless allergy person of the year.