Vent about food allergies

[Hunter's Moon]

I'm sick of people trying to "fix" my food allergies for me. Until you live with a severe food allergy, you'll never know how nerve wracking it is so please stop telling me how to deal with my own life or death situations.

 

I went to a birthday yesterday and of course, the store bought cake had no ingredients listed on it. And mind you, this is a major super market, not a privately owned bakery.

 

"Well, can't you just try a little bit?" Of course I can't try "a little bit"!! My antibodies don't know the difference between a little bit and a lot and I'm not willing to risk getting stabbed in the leg with any epi-pen for a piece of flippin' cake!

 

And when I say dairy upsets my stomach right now, please don't keep offering me things before you think if dairy is present. I cannot even count how many times someone asked if I could have "X" when dairy was very obviously present in it.

 

I'm sick of being constantly "left out" where food is involved. I'm sick of being my own advocate. I just want to eat something without looking at the ingredients first or triple checking with the cook what is being cooked. I hate eating out because I'm always that person at the table asking the waiter what is in their food items, and of course they don't know the details all the time. So many people don't realize I am entrusting them with my life and they just take it so casually and I'm just being picky and difficult.

 

:rant: Okay, I feel a little better :tongue_smilie:

[coffeefreak]

:grouphug:

As the mother of a dd with severe food allergies, I know EXACTLY what you mean. It's hard to remember they mean well, and it's hard to remember that they have no clue what it's like. I have made it a policy to always send my dd with her own food so she is not pressured like this. That's the only suggestion I can make. If you're going to a party, take your own cupcakes (freeze the rest), if you know what they're having for dinner, bring the same food that you can eat. If they ask, "Can't you try a little XYZ," say, with a smile, "Not if I want to stay out of the hospital today."

 

Blessings!

Dorinda

[Lacie]

My son has food allergies. And it can be very frustrating trying to keep him safe, but not having him feel left out or different.

 

Luckly, we have many friends that make a special effort to bring something that they know is safe for him to eat.

 

When you are eating out, don't talk to the waiter about food allergies... they don't usually know enough. Ask to speak to the manager. I talk to the manager any time we go out to eat. They have always been very caring and understanding. They have more knowledge and power than the waiter to make sure that you get the food that you need.

 

So sorry that you have to deal with this. :grouphug:

[laundrycrisis]

I think people who have not lived with it or been really close to it cannot understand....that you are not being picky...that your body cannot "get used to it" by "having just a little once in a while" (the opposite will happen)...that you are not being a "rude guest" by bringing your own food and refusing theirs....that "just this once" is not okay. :grouphug:

 

The words I ended up using with a few persistent people were, "This is not optional. It is not a choice. "

[Dana]

:grouphug:

[ChristineW]

:grouphug:

[CariS]

I feel for you. I've had the same issue since I was a kid. I've got a number of food allergies. My biggest gripe is when someone has homemade baked goods and won't tell you what is in the **** muffin because they "just want you to try it, and are sure you will like it." When I was a teenager I was not so nice in the way I dealt with it. I used to explain in detail how they could save me from dying by slicing my throat and stabbing a tube into my airway. That was before I had an epipen.

 

As far as eating out, if you know where you are going ahead of time you can see if they list their menu and ingredients online. A lot of the bigger chain places do, or at least they will list the big allergens.

 

:grouphug:

 

~Cari

[starwarsmomma]

I had two foster kids with SEVERE allergies to onions, or anything in the onion family. I had no idea how many things had onion or onion seasoning in them until I got those girls. UUGH. It was torture trying to figure it out! And to figure out meals that were "safe" for everyone. I feel for ya!

[RahRah]

I feel your pain - DS has a severe allergy to fish and shellfish and people don't quite "get" that that means he can't just not have fish/shellfish, but that he can't have anything cooked near fish or shellfish (ie. in oil, on a grill, touched by utensils that have cut something with fish/shellfish) and that he cannot be in the same room as either as he's had air-exposure reactions to just walking by cooking fish on a grill 20-feet away!

 

It makes eating out difficult and in some restaurants, impossible, especially those with with open air kitchens or heavy with fish on the menu.

 

It makes it hard to explain to restaurant staff that they *must* be sure that utensils are clean, not simply rinsed off or swished in water, before touching his food. That rather than try to clean the grill, simply put a sheet of aluminum foil down and cook his food on that instead of risking the grill not being free from the proteins. Or that if the cook is handling other food and that food is fish, they must wash their hands before turning back to DS's food and touching it. This whole litney of things really just makes it that we simply don't eat out much anymore - it's way too risky!

 

We've had family members not understand that, no he can't even be in the room while you cook it in the oven, or really, not even when you have it out on the counter next to other food due to cross-contamination risks.

 

We've had family members and friends roll their eyes when, if they've ordered fish while we're eating out, and we ask the waitstaff to keep his plate on a separate tray, then we move DS to the other end of the table and then they roll them again when he asks them to wash their hands and rinse their mouth when they're done.

 

Too many just think we're being "over-protective" despite having lived through reactions due to easily prevented cross-contamination and/or exposure via touch, or a simple kiss on the cheek. But they're not the ones carrying the benedryl, epi-pen and when traveling always scoping out where the nearest hospital is, just in case.

[Hunter's Moon]

Thank you, everyone. I'm glad to know others feel my pain. It seems like everyone I'm around simply doesn't understand.

 

Just recently I've had some issues where people were bringing peanuts/peanut butter cookies/tree nuts into the Pharmacy where I volunteer. I haven't had issues with air contaminants (yet!) but my doctor strongly advised I not be around anyone eating those things. I don't really want to make a fuss because I don't even work there and am only there 6 hours/week, but I'll probably contact the volunteer supervisor and ask her to be anonymous about it. I can't carry my epi-pen with me in the Pharmacy, and I shouldn't have to.

 

I have to bring my own plates/utensils/cups to peoples' homes because I can't trust that the water was hot enough or they completely washed it and not just rinsed. Peanut residue can stay on a surface for up to 6 hours after being bleached. That's crazy, and I need to be extra cautious. I can't even touch peanut butter without breaking into full body hives. My throat hasn't closed when just touching it, but I don't want to keep testing it out.

 

I wish food allergies were treated like any other disability. It's a hidden disability, and those with this disability are even included in The Americans with Disabilities Act. I don't understand why it is so hard for others to understand.

 

:glare:

[sbgrace]

:grouphug:

 

Honestly, if you are anaphylactic to tree nuts (am I understanding correctly) nothing in a bakery is safe for you. The ingredients don't matter because of cross contamination.

 

Why can't you have an epi pen on your person in the pharmacy? I suppose they have epi pens back there. Yikes. That does not sound safe.

 

I'm sorry. Food allergies, especially the life threatening ones, are very limiting. I never realized how pervasive food is in our culture until my son's anaphylaxis. It does affect social stuff. In our case my son just doesn't eat at places. "No thank you. I ate before I came." works best for us.

 

:grouphug:

[amo_mea_filiis.]

I can't carry my epi-pen with me in the Pharmacy, and I shouldn't have to.

 

 

Why can't you carry your epi? It is life saving medication and obviously time sensitive.

[Lisa R.]

I'm not sure how to say this best, but I'll try.

 

Oftentimes, I've been around people with a hidden physical issue, in that it's hidden to outside observers, but I've been made aware of it. It often seems very important to them that everyone around know about this and give due sympathy. In other words, they are perceived to make a big deal out of it. It's been my observation that when people have an expectation of sympathy, they are likely to be disappointed.

 

On the other hand, I've known people that have significant issues and try their best not to show it. They are accommodating in situations and would never expect others to be inconvenienced because of their problem. *These* are the people who tend to be shown more respect and sympathy.

 

Ironically, it is the people who are least demanding of sympathy who are likely to get more of it.

 

I realize this is a large issue in your life. Really, though, it isn't an issue in the lives of those around you. They're *not* going to understand. Explaining your health/risks/reactions/medical needs is not going to cause most people to be understanding. If anything, it sounds like pleas for sympathy and will probably not be received well.

 

My advice? Don't talk about it. At all. If you don't talk about your food allergies, people aren't going to be insistent that you "just try" a certain food. At your home you can control what is served. At other places, you may not be able to attend functions where food is served is you are so sensitive that medical intervention may be necessary if you're exposed to the wrong foods. At restaurants, talking privately to a restaurant manager is necessary but making sure everyone at the table knows you're doing so is not. If you cannot sit near someone eating a certain food, no restaurant is safe because you cannot control what those at the next table are eating.

 

I'm not unsympathetic to your situation, but trying to talking more about a hidden health issue usually doesn't help.

 

Bottom line: be low-maintenance. You may feel tense, but put on a show of nonchalance. You will receive more respect for doing so.

[Hunter's Moon]

I CAN carry the epi-pen, as in, it isn't against the rules, but I run around constantly and I don't have a fanny pack or anything I can carry that wouldn't be a pain. There shouldn't be food in the Pharmacy anyways, that was my point.

 

I understand what you're saying, Lisa R. I don't announce my food allergies to everyone though. The party I was at yesterday have been friends of mine for 6 years so they obviously know, they just don't understand how scary it is to the one with the allergy. I don't go out of my way to bring up my food allergy. But sometimes, there is no way around it. I don't want sympathy, I want an understanding of some sort. I'm not being picky, I'm not being rude or mean and it isn't a choice. It's like if you offered someone who was Diabetic a cupcake and they turned you down. No one would push a Diabetic (or, at least I hope not) to try a little bite. They are well aware of what they should and should not eat. So am I, but somehow because I refuse your food it's like I'm spitting in your face.

 

I have brought foods to others home and yesterday I made my own food because there was chance of cross contamination. I'm not asking anyone to accommodate me, but to understand. When someone brings my allergen into the Pharmacy though, that effects me. I don't feel comfortable standing near them and what if they touch something I'm going to? Should I wear gloves where food shouldn't be allowed?

 

I'm just asking to be understood.

[Peela]

Sounds like you need to develop a little thicker skin. Let it flow of like water off a duck's back. Maybe they will never understand you. Since being gluten free (which is nothing like what you are experiencing, I realise) I have just learned to say no, can't eat that, I am not eating gluten, thankyou, and move on. I don't expect anyone to understand- I just take care of myself and how they respond is their problem. In your case, I would say it is even more important to develop an attitude that just dismisses people if they try to influence you. Perhaps your age works against you but you are never too young to try. Just be matter of fact and in your power, rather than hoping people will understand. They may never understand.

[Omma]

I don't think people understand how much food is a part of our gatherings. This is what makes it so hard. If we didn't have to always eat, it would be a lot easier! :tongue_smilie:

 

Brenda

[RahRah]

 

I'm just asking to be understood.

 

:iagree:

 

I totally agree - it isn't at all about garnering sympathy, it's about understanding that the person with the allergy cannot have it, even in miniscule amounts.

 

I have had family members *tell* me DS can be around fish that's cooking, that I was *crazy* and way too *over-protective* when I have said we'd need to leave because there was air-borne proteins in the steam while they cooked.

 

And ya know what? There is no reason anyone should do that to another person - I learned my lesson, the day I shrugged my shoulders and thought maybe they're right, maybe the allergist was making me a bit paranoid and I was way too crazy with it - we stayed in the kitchen while fish was cooking.....and yup, full on hives, trouble breathing and projectile vomiting within just five minutes of DS playing across the room! He hadn't touched the fish, eaten it, nor been touched by anyone who ate it or touched it - his allergy is a 4+, the worst level.....I no longer mess around with it - if someone can't respect that I'm vigilant to protect him, we leave, end of story....that, in my mind is better than a trip to the ER.

 

I've had friends make foods and when I ask what's in it, asking specifics, tell me not to worry, there is no fish in it, only to realize, as DS hives up and pukes, that yup, they goofed and added worcheshire sauce (anchovies), despire having a list of foods and ingredients that he can't have, but didn't mention it because was *just a teaspoon* in the whole pan! They just don't GET that even that small an amount, what amounts to mg's in a serving, is enough for DS to react to the allergens. Rather than say, oh there is a teaspoon of worcheshire in it and I know it was on the list, but it seemed like a small amount and leave it to me to decide if it's worth the risk, they decided it was not relevant to disclose to me when specifically asked! That's just wrong. Period.

 

No, I don't want sympathy - what I do want is that when I find myself faced with a real risk to DS, simply respect I know what I'm doing and protecting my child's life is my priority, not your (general your) feelings. Don't assume that small amounts can't possibly be deadly - they can be. And that yes, sometimes foods that don't appear to have fish in them can indeed have fish in them - case in point, kosher marshmallows (the gelatin is made from fish bones).

 

Whether someone gets it or not, when another says they can't have something (or are simply polite and say no thanks to whatever), just be okay with that, that's all....no one should have to justify or defend why they're saying no to something, they simply said no, end of story....but you wind up having to explain more than you would when you're faced with question after question, or the just one bite hassles.

Edited July 15, 2011 by RahRah

[Lisa R.]

It's like if you offered someone who was Diabetic a cupcake and they turned you down. No one would push a Diabetic (or, at least I hope not) to try a little bite. They are well aware of what they should and should not eat. So am I, but somehow because I refuse your food it's like I'm spitting in your face.

 

 

 

I'm just asking to be understood.

 

People turn down food for all sorts of reasons: trying to lose weight, food intolerance, food allergies, not hungry, etc. If you cheerfully say, "No, thank you!" they will hardly think anything of it.

 

I guess I'm trying to tell you that you won't be understood. Well, a few close to you will understand, but most people won't. They have their own problems too. Problems that you and I can't see either. I know it is a basic human need to be understood. Try and feel content that a few close to you (dh, maybe a best friend) understand and leave it at that.

 

The ironic thing is this: if you stop trying or caring that others don't understand, you may find out they eventually do. You'll garner much more understanding in the long run by not explaining your situation. It comes across as a demand, even though you're trying to be sensitive and gentle about it.

 

I'm not saying this to be insensitive. I just wished someone had explained this to me years ago. (It's a story not worth going into right now...)

:grouphug:

[Wyndie]

Thank you, everyone. I'm glad to know others feel my pain. It seems like everyone I'm around simply doesn't understand.

 

*snip*

 

I wish food allergies were treated like any other disability. It's a hidden disability, and those with this disability are even included in The Americans with Disabilities Act. I don't understand why it is so hard for others to understand.

 

:glare:

 

People really don't understand. I STILL (9 years later) have a relative who thinks I'm making it up when I said my dd9 goes into anaphylactic shock from smelling peanuts. Seriously, she compares my kids life and death situation to a sniffly nose... it's maddening!!

 

 

I'm just asking to be understood.

 

I understand you. :grouphug: It stinks to have your feelings minimized and to feel insignificant b/c your problems aren't something others can see.

 

If we didn't have to always eat, it would be a lot easier! :tongue_smilie:

 

Brenda

 

LOL I agree!!

[coffeefreak]

People turn down food for all sorts of reasons: trying to lose weight, food intolerance, food allergies, not hungry, etc. If you cheerfully say, "No, thank you!" they will hardly think anything of it.

 

I guess I'm trying to tell you that you won't be understood. Well, a few close to you will understand, but most people won't. They have their own problems too. Problems that you and I can't see either. I know it is a basic human need to be understood. Try and feel content that a few close to you (dh, maybe a best friend) understand and leave it at that.

:

 

I have to disagree. We are CONSTANTLY grilled on why dd can't eat what's being served, and how they KNOW she'll be fine because they made it from scratch etc. etc. I agree with a pp that so much of our society is centered around food. People are actually offended when you won't eat with them. It is about learning to have a thicker skin, and realizing no one will understand, but people need to be educated too. I don't think it's good to be silent.

Blessings!

Dorinda

[Wyndie]

 

The ironic thing is this: if you stop trying or caring that others don't understand, you may find out they eventually do. You'll garner much more understanding in the long run by not explaining your situation. It comes across as a demand, even though you're trying to be sensitive and gentle about it.

 

 

Not trying to be argumentative but I don't agree. For a person who's allergic to smelling or touching certain food, they have to tell others. She needs to let people know that they can't touch her, give her a hug and kiss, etc without washing up first. I have had to stick my children with epipens far too often b/c at the beginning, I DID try not to say anything and people didn't know so they inadvertently hurt my children. All b/c I didn't speak up. When you have a life and death disability such as this, you have to speak up. You don't have to yell from the rooftops that you want some consideration, but you do have to verbalize your needs to those around you.

[Haiku]

I'm just asking to be understood.

 

You probably won't be, however, and if you keep up that expectation, you will be continually disappointed. *I* understand severe food allergies, although no one in m family has them (my dd is intolerant to casein but it is not life-threatening). But we have friends whose son has anaphylactic reactions to several things. I would never dream of downplaying it. I get it.

 

But ... most people don't. It's not on their radar, they don't understand, and, frankly, they don't want to be bothered.

 

We are vegan and, as I said, my dd is intolerant to casein. I have found "No, thank you" to be very effective.

 

Would you like some egg salad?

No, thank you. :)

I know you're vegan but these are from free-range chickens.

No, thank you. :)

Are you sure? It's really good.

No, thank you. :)

 

Eventually they get embarrassed and stop pushing.

 

Tara

[amyable]

More :grouphug::grouphug::grouphug: from me. 3 of my children have anaphylactic food allergies (to several different things). I know where you're coming from, at least from the perspective of listening to a "well meaning" person not take no for an answer (repeatedly), while I'm just trying to keep my child from dying thankyouverymuch. :banghead:

 

I'm never asking for sympathy... but seriously Mrs. Acquaintance At a Party, I politely said NO in 5 different ways, and I just need you to BACK OFF. Because honestly, my dd DOES want that cake she can't have even though I brought her a goofy "safe cupcake." She wants to do what everyone else is doing so stop rubbing it in her face.

 

Sorry, rant over. I'm sorry you are dealing with this too. :grouphug:

[mommaduck]

:grouphug:

[sbgrace]

I have to disagree. We are CONSTANTLY grilled on why dd can't eat what's being served, and how they KNOW she'll be fine because they made it from scratch etc. etc. I agree with a pp that so much of our society is centered around food. People are actually offended when you won't eat with them. It is about learning to have a thicker skin, and realizing no one will understand, but people need to be educated too. I don't think it's good to be silent.

Blessings!

Dorinda

 

 

This is true.

 

Lisa, I know you're trying to be helpful but it's my experience that people often react strangely--pushing the person to have some or seeming to take offense even. They want an explanation. And it feels awkward honestly to turn down offered food without an explanation with some people and situations. Food is just a big part of social stuff with all kinds of connotations. Finally, if what I'm eating might kill a friend or their child sharing a table with me I want to know, don't you?

 

OP, It's a tough thing these food allergies. I really think you're probably better off not eating anything anywhere that you didn't bring yourself. You're physically much safer and it takes the aspect of asking what's in it and having people push this or that on you out. That seems to work best for my son. He just eats before he goes anywhere. Eating out is harder. If you can figure out ahead of time what places and items are safe maybe that would make it easier? :grouphug:

Edited July 15, 2011 by sbgrace

[cuckoomamma]

It's so lonely to have food allergies. It seems as if we got the raw end of the deal by having them and then it's made even worse by all the ignorant reactions around us.

 

Both our daughters and I have food allergies and dh has a couple, as well. We've had similar experiences to what everyone has mentioned already. Yes, there have been times where someone was offended when we didn't eat something or insisted the food was safe and it really wasn't, etc. However, like another pp said, if you truly feel your strength and are not defensive about it when you say no, in my experience, they back right off.

 

It's like anything else. People have an uncanny ability to sense when you're vulnerable and try to take advantage of you. I'm no longer open to discussion about the girls possibly eating something, and people can sense that. We don't eat anything anywhere. We bring absolutely all of our own food everywhere. Everywhere. It doesn't mean we're hiding our allergies, doesn't mean we aren't educating. It's just not something that's open for discussion. We're not even looking for any type of accomodation, even sympathy. We go to an event to experience it in our own way and we have to be okay with that.

 

Birthday parties can be a real drag for the girls because of the pizza and cake. The only treat they can have is maple candy. I bring their drink, their candy and something to snack on that isn't remotely like what the other kids have because they can eat such a limited amount of foods. However, every time they make the decision on if they want to go or not. There's just zero expectation that anyone will accomodate them in any way. It stinks that others aren't more empathetic, but they have their own lives to try to juggle and are tapped out with their own concerns.

 

I think you're in the early stages of just being so disappointed in people. I urge you to try to move past that and see that this is a call for you to be an advocate for yourself in every way - to take care of yourself in every way. And that means that sometimes you will choose to give something up for a new way of life because others won't accomodate you.

 

Initially it seemed very unfair that my girls couldn't really celebrate Halloween because of what was given out for trick or treating. We've had a Halloween party one year in order to celebrate, and now are thinking that maybe it isn't so important anyway. We celebrate enough other times throughout the year with different things that other people don't celebrate. Is it fair? No. Do I wish everyone gave out non-edibles for trick or treat? Yes. Is it realistic? Not even close. We just need to make our own new normal. Maybe volunteering at the pharmacy isn't the right fit. Maybe you've outgrown those friends. Just encouraging you to look at things in a positive way. Having allergies is extremely tough.

[Tess in the Burbs]

:grouphug:

 

yep, my parents think my son's allergies aren't real :001_huh: :confused:

 

they don't think about shelling peanuts in his presence(like beside him) or buying ice cream they know has several of his allergens. He had food allergies as a baby(!) and outgrew them only to develop new ones a few years ago. They think the Dr/tests are wrong and we should just feed him anyway with anything.

 

They are frustrated by my advocating. I am frustrated by their lack of compassion and ignorance. I wouldn't choose this path. My ds would probably give up an arm or leg to be able to eat anything again.

 

When I find myself most frustrated with all this I try to focus on the things I can have. I bake so much...so I just go make something we can have and really enjoy it. Or find a new recipe and convert it to our foods we can have so we don't feel left out. :grouphug:

[prairiewindmomma]

I think the other point the OP is making is that people who eat in the pharmacy can be transferring their peanut "germs" to everything else in the pharmacy. The OP could accidentally pick up residue on say, the phone, or a bottle of meds and have a reaction.

[1bassoon]

Thanks for this thread - it's been really helpful to me.

 

I have to confess - I "get" that people can't eat certain things. But I don't "get" that even smelling or being in the same room can cause reactions.

 

I do now.

 

But - here's the deal - I think the reason that *I* don't/didn't understand such severe reactions? I don't want to. Don't want to admit that there are people whose lives are made very, very complicated by food allergies. I'd rather bury my head in the sand, insist that no, now, it can't be THAT bad, can it? B/c if it's not my reality, then it's not true. And if it's not true, then I won't have to ever deal with it - not in the lives of my children, or potential grandchildren, and so on.

 

Does that make any sense? I tend to have somewhat of a Pollyanna outlook on life (which is RAPIDLY being shattered by our family's recent experience), and often deny any problems that exist. But that's just me.

 

I will tell you, though, that I CERTAINLY will never push someone to eat something, if they say that can't! That is the height of rudeness. . . . . really.

 

Don't know if my ramblings make any sense, but Stephanie (and others) - you've really opened my eyes.

 

Thanks.

[Wyndie]

It's so lonely to have food allergies. It seems as if we got the raw end of the deal by having them and then it's made even worse by all the ignorant reactions around us.

 

Both our daughters and I have food allergies and dh has a couple, as well. We've had similar experiences to what everyone has mentioned already. Yes, there have been times where someone was offended when we didn't eat something or insisted the food was safe and it really wasn't, etc. However, like another pp said, if you truly feel your strength and are not defensive about it when you say no, in my experience, they back right off.

 

It's like anything else. People have an uncanny ability to sense when you're vulnerable and try to take advantage of you. I'm no longer open to discussion about the girls possibly eating something, and people can sense that. We don't eat anything anywhere. We bring absolutely all of our own food everywhere. Everywhere. It doesn't mean we're hiding our allergies, doesn't mean we aren't educating. It's just not something that's open for discussion. We're not even looking for any type of accomodation, even sympathy. We go to an event to experience it in our own way and we have to be okay with that.

 

Birthday parties can be a real drag for the girls because of the pizza and cake. The only treat they can have is maple candy. I bring their drink, their candy and something to snack on that isn't remotely like what the other kids have because they can eat such a limited amount of foods. However, every time they make the decision on if they want to go or not. There's just zero expectation that anyone will accomodate them in any way. It stinks that others aren't more empathetic, but they have their own lives to try to juggle and are tapped out with their own concerns.

 

I think you're in the early stages of just being so disappointed in people. I urge you to try to move past that and see that this is a call for you to be an advocate for yourself in every way - to take care of yourself in every way. And that means that sometimes you will choose to give something up for a new way of life because others won't accomodate you.

 

Initially it seemed very unfair that my girls couldn't really celebrate Halloween because of what was given out for trick or treating. We've had a Halloween party one year in order to celebrate, and now are thinking that maybe it isn't so important anyway. We celebrate enough other times throughout the year with different things that other people don't celebrate. Is it fair? No. Do I wish everyone gave out non-edibles for trick or treat? Yes. Is it realistic? Not even close. We just need to make our own new normal. Maybe volunteering at the pharmacy isn't the right fit. Maybe you've outgrown those friends. Just encouraging you to look at things in a positive way. Having allergies is extremely tough.

 

This is a beautiful post. Thank you for sharing your perspective!

 

I think the other point the OP is making is that people who eat in the pharmacy can be transferring their peanut "germs" to everything else in the pharmacy. The OP could accidentally pick up residue on say, the phone, or a bottle of meds and have a reaction.

 

This is the problem with not speaking up. People NEED to know that by eating a peanut and then handling the phone, they are jeopardizing the OP's life. I don't know anyone who would knowingly WANT to hurt others with food, but ignorance and lack of willingness to listen, believe and work toward a solution is beyond frustrating, it's dangerous.

[Guest bigreys5]

:iagree::grouphug: I totally understand what you are saying and what a lot of people have already said about how difficult it is to deal, day in and day out, with the seriousness of food allergies. My son is allergic to peanuts, tree nuts, and shellfish. We live in southern Louisiana, and at certain times of the year we can not even take him grocery shopping at certain stores because they boil crawfish in the store daily. People just do not understand how someone can have reactions without actually eating the food, or how they can have a reaction if they just "eat a little bit." My own mother is constantly pushing us to "just let him try some," although she knows in detail about his reactions and about the risk involved.

 

Some people just will not get it no matter how many times you explain it to them. Unless it is happening in their life, they are oblivious. We go to my neice's birthday party every year. We bring my son home made cupcakes since he can not eat the cake they serve, no matter how safe they insist it is. Every year, the same people are there and we explain the same things to them about his allergies. We do explain it to them every time, hoping that eventually it will stick, though.

 

You just have to be safe and do what you have to do for yourself no matter what people say. You know what you can or can not have. Tell them you can not have it and why. Make sure you have something you can eat with you to eat that is safe and that it is something you like. Then when they ask you, they can see that you are not "missing out" on whatever it is they are offering. You actually have what you want. ;)

[Sandra in FL]

My allergic ds does not eat anything cooked by someone other than me. That way, he is safe and I am not stressed out. I don't let other people bother me since before ds, I didn't even know what an allergy was. I thought it was just sniffles. That ignorance on my part makes me a little more tolerant of anybody who is kinda "weird."

 

BTW, this does not apply to processed food. I have to trust that when the bag of rice cakes says "organic brown rice," it's so.

 

I have recently started bagging all fruits at the supermarket since the person in front of me had a broken egg. The man bagging the groceries totally ignored me when I asked him if he could please wash his hands as my son is allergic to eggs. Can't help that so now, papayas, cantaloupes, etc. are bagged. Unfortunately, they don't have bags big enough for watermelons.

[Spryte]

I understand, too. It's hard to live with these types of allergies. My DS is anaphylactic to peanuts, tree nuts, sesame, banana and coconut. He has more allergies, as well, but those are the biggies.

 

We were once leaving the indoor pool, and there was a circle of kids sitting next to the elevator, having an impromptu picnic. They were pouring cashews into bowls and passing them around. DS saw, and took a step back. I did not want to make a big deal out of it, and whispered, "We'll just stand back here, and jump on the elevator quickly, it'll be okay." Famous last words. By the time we made it to the car, DS had hives and breathing difficulties. In that case, we should have taken the stairs. I would not have said anything to the kids, but could have opted for a different route out of the pool area. (Although, at the time, I did not know that DS would have a reaction to airborne particles, and at least now I know!) ...Another time, we almost had to use the epi in a store that was passing out peanut laden samples... Benadryl and the inhaler worked that time...

 

We discuss allergies with family, and with close friends. It is a necessity, and according to our allergist, it's not a very good option for us to avoid the discussion. Life and death, right? It's not a matter of a stomachache or a case of eczema if someone convinces my 7 year old that it's okay to just try a little bit, it won't hurt you. A little can hurt! A lot.

 

We take all food to parties and outings. If I can, I gently ask in advance about whether there will be certain ingredients present, not so that we know if DS can eat the foods, but so we know whether kids will be smearing crumbs or sticky allergens on items DS might touch. If I were to find that someone were serving something that outright contained his allergens, I would probably decline the invitation politely. That may change as DS grows older and can recognize dangers and early symptoms quicker.

 

We eat at a few restaurants, and each time discuss everything with the manager. It would be nice to be discreet, and go into another room with the manager, but that's not possible because we have to specifically request that our table be wiped down with a clean rag - not one that has been used at another table first - before we sit. Sometimes we have DS bring his own food to the restaurant, if it's one whose kitchen we don't trust, but we always call first to okay this with the manager.

 

...And, oh, the production of going to a movie theater! The wiping down of seats, the asking ahead to bring our own popcorn! Sometimes I catch other parents looking, and I know they must be thinking I am a germaphobe. :)

 

All of this to say... you are not alone. And learning to navigate the world with your allergies is part of your path. I hope that my son will someday learn to advocate and speak up for himself as you are doing!

[RahRah]

We live in southern Louisiana, and at certain times of the year we can not even take him grocery shopping at certain stores because they boil crawfish in the store daily. People just do not understand how someone can have reactions without actually eating the food, or how they can have a reaction if they just "eat a little bit."

 

One of our local grocery stores recently started doing a lot of cooking instore and also offering dinners to go....I nearly cried the day we were walking through the store and unbeknownst to me they were doing a New England Crab Boil in the butcher department! I had no clue walking in and was totally scratching my head trying to figure out why DS was getting hives on his face and his eyes were closing, they were swelling so badly.

 

I pumped some benedryl in him (oral liquid) and as we rounded one aisle for the next to go back down the next to leave, I saw the pot and the sign....OMG....we high tailed it out of the store!

 

The good news - I stopped in a day later, asked for the manager and politely explained the situation I faced the day before, and explained how some food allergies can be triggered by steam and cooking and asked that in the future, if they're doing a fish fry or another crab boil or bake, or some other cooking in an area of the store with allergens (nuts, peanuts, etc.), could they have a sign on the entrace to alert shoppers who may need to come back another time. He apologized for not realizing there should be some warning for those with allergies and since then, they always have a sign posted on the entrance doors letting patrons know what's cooking inside along aisles or in departments! The signs usually say something like "Fish Fry in progress in the Deli area" or "Shrimp Salad samples offered in aisle 9" or "Crackers with our new Natural Peanut Butter in the organic market, aisle 5".....it's great because when I see the signs I can opt to return later or the next day, or avoid the area where the food is if what I need isn't near that area.

Edited July 16, 2011 by RahRah

[ktgrok]

so sorry. We have friends with an almost 2 year old that is allergic to eggs, dairy, and peanuts. She just had a second child and I always bring food to new moms. After thinking about it, and realizing that even if I am careful my house does have peanut products in it that could cross contaminate, and I don't know HOW allergic he is, and besides, she doesn't have a way of KNOWING I'm careful, so I decided it was better to do something else, lol. I made up a little care package in a tote, and included some Luna Bars that didn't have peanut in them, figuring even if it is for her, not the boy, she may not want that stuff in the house. Better safe than sorry. She was grateful to not have to worry about it.

[ktgrok]

One of our local grocery stores recently started doing a lot of cooking instore and also offering dinners to go....I nearly cried the day we were walking through the store and unbeknownst to me they were doing a New England Crab Boil in the butcher department! I had no clue walking in and was totally scratching my head trying to figure out why DS was getting hives on his face and his eyes were closing, they were swelling so badly.

 

I pumped some benedryl in him (oral liquid) and as we rounded one aisle for the next to go back down the next to leave, I saw the pot and the sign....OMG....we high tailed it out of the store!

 

 

 

OMG, I didn't know this! I'm slightly allergic to shellfish, I used to be much more so. I remember as a kid I would get icky feeling, and a stomach ache, if my parents were boiling shrimp in the house. They acted like it was all in my head. Now I know it isn't! Wow!!!!!

[ktgrok]

I think it IS important to tell those around you. Otherwise they could accidentally kill someone! After reading this I was thinking about how I often eat peanuts in the car, when I need a snack. I'm sure there are peanut particles flying around in there. Now, I'm not going to stop eating peanuts in my own car. But now I'm aware enough to make sure to warn my friend, who has a peanut allergic child. I don't know how severe his allergy is. And if I didn't know about all this, and offered her a ride, her child could have a reaction or even die! So yeah, I'm glad I know he has an allergy! If I didn't I would never think to mention it to her, and honestly, I doubt she would think to ask if I eat tons of peanuts in my van, lol. (they are a protein rich snack that I can get at gas stations in a pinch)

[Cricket]

I don't think people understand how much food is a part of our gatherings. This is what makes it so hard. If we didn't have to always eat, it would be a lot easier! :tongue_smilie:

 

Brenda

 

:iagree: We have a neighbor who often grills and will bring some over to us. I don't get to taste it. Before I developed food allergies, I did eat it and it is always soooooo good! I'm left out of potlucks at church. Sure, I can bring my own food but everyone asks why I'm not eating what is being served. My in-laws come to visit and their favorite thing to do is go out to eat. Most of the time I have to sit there while everyone else is enjoying food and then someone gets upset because I brought a book or crossword puzzle. Have you noticed what the conversation is when you are at a restaurant? 90% of the talk is about the food, how wonderful it is, people trading bites, etc. It doesn't feel that great to be excluded. Whenever friends want to meet up, it is at a restaurant. Every once in awhile I will have a full-blown pity-party over my food allergies and then I move on.

 

So to the OP, I understand the rant!

[KatDilan]

I know I am blessed not to have to struggle with food allergies in my family. I cannot imagine how difficult that must be on a day to day EVERY day level. :grouphug:

 

I just wanted to share that a friend and I were talking about the seeming uselessness of a standard science curriculum at our children's ages (early elementary). So we decided to do a co-op together for science next year. We're creating an Alton Brown inspired Kitchen Chemistry curriculum where the kids will learn the science behind cooking that they will then get to apply (and thus, hopefully, retain). But the relevant point in all this, is we plan to do a whole section on cooking to special dietary needs (gluten free, dairy free, etc), including creative and effective replacements for various ingredients. Maybe a similar idea for friends and family would be a creative and friendly way to educate them on the REAL DANGER you face and how to accommodate those needs?

[Angjune]

I think the OP just wanted to vent and there's nothing wrong with that. It doesn't mean that she has unreasonable expectations. All of us need to vent at one time or another. My daughter has (minor) food intolerances and that alone can be tiresome, but to have to deal with severe food allergies, probably makes one feel lonely - as another person already mentioned.

 

MTV aired a show recently where they followed two teenagers with severe allergies and the viewer got to see what these kids have to deal with on a daily basis. The boy only had a handful of foods he could eat so had to supplement his diet with a specific formula. Every week or so he would wait to see if he could introduce a new food in his diet.

[Guest bigreys5]

The good news - I stopped in a day later, asked for the manager and politely explained the situation I faced the day before, and explained how some food allergies can be triggered by steam and cooking and asked that in the future, if they're doing a fish fry or another crab boil or bake, or some other cooking in an area of the store with allergens (nuts, peanuts, etc.), could they have a sign on the entrace to alert shoppers who may need to come back another time. He apologized for not realizing there should be some warning for those with allergies and since then, they always have a sign posted on the entrance doors letting patrons know what's cooking inside along aisles or in departments! The signs usually say something like "Fish Fry in progress in the Deli area" or "Shrimp Salad samples offered in aisle 9" or "Crackers with our new Natural Peanut Butter in the organic market, aisle 5".....it's great because when I see the signs I can opt to return later or the next day, or avoid the area where the food is if what I need isn't near that area.

 

I have done this several times at the stores, but the did not do this for me. Another store that was previously safe for us to shop at because they did not boil seafood in, one day started boiling seafood with no warning. I have a good nose for it and can smell it every time. As soon as we walkied in, I asked for the manager and asked if they had started boiling shellfish. She smiled and said yes, we are. I politely told her how disappointed we were since this was one of the only "safe" grocery stores we could go to during crawfish season and explained the severity of my son's reactions and the possibility of a reaction from just smelling the proteins in the air. She did appologize and assured me that they would post a sign from now on. I did see the sign for about a week, but never since then. Yes, they do still boil crawfish. :glare:

 

I was thinking about this post last night and it is so sad that our culture is so focused on food, that it has to be everywhere. We can't even go to our local homeachool group at the library because they insist on having parties where they bring all sorts of unsafe foods. I have tried to explein to the parents numerous times about my son's allergies, but they say we can just bring our own food :001_huh:

[4wildberrys]

I'm sick of people trying to "fix" my food allergies for me. Until you live with a severe food allergy, you'll never know how nerve wracking it is so please stop telling me how to deal with my own life or death situations.

 

I went to a birthday yesterday and of course, the store bought cake had no ingredients listed on it. And mind you, this is a major super market, not a privately owned bakery.

 

"Well, can't you just try a little bit?" Of course I can't try "a little bit"!! My antibodies don't know the difference between a little bit and a lot and I'm not willing to risk getting stabbed in the leg with any epi-pen for a piece of flippin' cake!

 

And when I say dairy upsets my stomach right now, please don't keep offering me things before you think if dairy is present. I cannot even count how many times someone asked if I could have "X" when dairy was very obviously present in it.

 

I'm sick of being constantly "left out" where food is involved. I'm sick of being my own advocate. I just want to eat something without looking at the ingredients first or triple checking with the cook what is being cooked. I hate eating out because I'm always that person at the table asking the waiter what is in their food items, and of course they don't know the details all the time. So many people don't realize I am entrusting them with my life and they just take it so casually and I'm just being picky and difficult.

 

:rant: Okay, I feel a little better :tongue_smilie:

:grouphug: Vent away! It is very frustrating and with my whole family of 2 kids, myself AND husband who deal with food allergies/celiac---I completely, 100% understand the frustration. But...um...get used to it ;) At least that's what I tell my own kids.

 

Like others have said, until someone has walked in your shoes for even 10 minutes with food sensitivities---they can never know how awful it is!! :glare:

 

Just to make you feel better I'll share my recent frustrating story: A person who was a close friend from high school up until April of this year, is no longer my friend because she told me that I am a hypochondriac and have manifested my 'Celiac' and gluten issues and because I am such a Food Nazi---she says I have my entire family believing they have issues with food too. Even suggesting that the reason my kids are skinny is because I starve them, deny them food when they are hungry and have them brainwashed into thinking they have Celiac. :001_huh: Good thing for her not only that she lives 1000 miles away from me----but also that my dd is 19, ds 16 and they were appalled when they heard this, as getting our diagnosis of Celiac and going GF HAVE been undeniably hard---but the health payoffs have been amazing ;) Never mind that the reason my dd is graduating basically a year late is because of her health issues-----missing massive amounts of school due to illness when she was in k-2 public school, writhing on the floor every.single.day with stomachaches, headaches, 'wavy eyes' when we started homeschooling......etc. etc. Her abusive comments are basically what we have put up with from ALL family and any close friends. Why people doubt when you have food issues, I have no idea, but they seem to think they can fix it by having you eat it :confused:

[Soror]

We have intolerances and Celiac but no allergies here. We do have friends that are that severe though and I am paranoid everytime they are around. I know that often others don't get it or don't want to get it, ds was getting sick from cc from the pb jar at Granny's house. I know a lot of family thinks we are crazy but generally we have been lucky that most people genreally listen to us

[grace'smom]

:grouphug::grouphug: Food allergies ARE hard. People DON'T understand. Even people who think they understand really don't understand unless they've dealt with it themselves. They can try, but it's difficult to fathom how entirely food allergies change one's life.

 

There is a period of mourning with food allergies. You are losing part of your life. You're losing part of your culture- a culture you can watch carried on around you but you can't participate in... That makes it even more painful. There will be days of sadness, anger, frustration that only someone else who has been there can understand.

 

Every year when we go to my daughter's allergy testing appointment I pray so hard that this year we'll have progress (they say a lot of kids outgrow food allergies). Every year so far the foods just change around- what was good isn't good anymore. There's more changes, another elimination diet to contend with, another way of cooking to learn, and a bunch of expensive food to throw out that has been found to be the reason for the random hives and/or stomach aches/diarhea my DD experiences. So I go home, I drag out all my cookbooks and start again. There will be several weeks of inedible dinners and disappointing meals before I find a few recipes that work. There will be tears from my DD over foods that were taken away. She'll says she doesn't care about chronic stomach aches and diarhea and she doesn't care if she won't get taller, she just wants the popcorn, LOL. I'll force the changes and for six months things will be better, then they will slowly start to decline until we're pretty much back at square one by October (although I will continue to hope it's in my head and her testing will all be normal).

 

Food allergies change your entire lifestyle. Everyone has things that trigger their frustration about their allergies and spark a bit of pity party. Mine is watching other families do fun activities that we can't participate in, not even because of the food factor, but because I can't pick up a pizza on the way home like other overbooked moms. They have a backup. I get upset that my only backup is what I made and froze myself. It bugs me that there's no drive thru for us. I'm not organized enough to be without a drive thru, and yet I am. No one's fault, no one did it to us, can't be helped, but that's the thing that bugs me. Stupid, I know, but it's there all the same. But I was raised in a culture where moms got those prepackaged family meals at the grocery store on the way home from work. I thought cooking meant opening a box and adding oil and an egg. That culture is one I cannot participate in now, and it bugs me, and it bugs my mom and my dad and everyone else in our family who wants to open a can of yams and call it Christmas without excluding someone.

 

And this is all just my own personal pity party mess. It doesn't even count the pity I feel for my daughter watching her struggle with her own fall out from the whole thing. And we don't even have life threatening allergies. We just have "eventually your daughter will fail to grow if she has diarhea every day." My daughter has the ability to cheat if she really wants something. She can decide if something is worth a day of stomach aches and/or digestional distress. If my mom thinks something she made is OK for my daughter and she is wrong, nothing horrible happens unless it was peanuts (which you usually KNOW if you put peanuts in something). I can't imagine being someone who can't have a slip up.

 

This is all to say, OP, that you're not alone. We all have these days where we just wish so badly that things could be different, and maybe we just get mad in general about the way things are. It's natural, it's normal, it's part of the process. It won't change anything, but :grouphug::grouphug::grouphug:.

[Food4Thought]

To the OP: :grouphug::grouphug: Vent away. I try to keep a positive attitude about the whole thing, but sometimes I just want to vent too!

 

There is a period of mourning with food allergies. You are losing part of your life. You're losing part of your culture- a culture you can watch carried on around you but you can't participate in... That makes it even more painful. There will be days of sadness' date=' anger, frustration that only someone else who has been there can understand.

...

Food allergies change your entire lifestyle. Everyone has things that trigger their frustration about their allergies and spark a bit of pity party. Mine is watching other families do fun activities that we can't participate in, not even because of the food factor, but because I can't pick up a pizza on the way home like other overbooked moms. They have a backup. I get upset that my only backup is what I made and froze myself. It bugs me that there's no drive thru for us. I'm not organized enough to be without a drive thru, and yet I am. No one's fault, no one did it to us, can't be helped, but that's the thing that bugs me. Stupid, I know, but it's there all the same. But I was raised in a culture where moms got those prepackaged family meals at the grocery store on the way home from work. I thought cooking meant opening a box and adding oil and an egg. That culture is one I cannot participate in now, and it bugs me, and it bugs my mom and my dad and everyone else in our family who wants to open a can of yams and call it Christmas without excluding someone.

[/quote']

 

I feel this way too. I miss pizza, and Jack in the Box, and Wendy's, and french fries and ice cream and those wonderfully nasty Pot Pies in the freezer section. I make nearly everything from scratch. I laugh when I read the statistics about how the average American cooks for 30 minutes a day. I would love to only cook for 30 minutes. Food prep feels like a part-time job, at least - and we actually eat a lot of raw food.

 

My DS has an amazing attitude about it - he never takes food from anyone (he's learned the hard way), but I wonder what life will be like for him in the future. I hope I can give him a good attitude and the ability to take care of his own needs so it doesn't become such a burden.

[4wildberrys]

:grouphug::grouphug: Food allergies ARE hard. People DON'T understand. Even people who think they understand really don't understand unless they've dealt with it themselves. They can try' date=' but it's difficult to fathom how entirely food allergies change one's life.

 

There is a period of mourning with food allergies. You are losing part of your life. You're losing part of your culture- a culture you can watch carried on around you but you can't participate in... That makes it even more painful. There will be days of sadness, anger, frustration that only someone else who has been there can understand.

 

Every year when we go to my daughter's allergy testing appointment I pray so hard that this year we'll have progress (they say a lot of kids outgrow food allergies). Every year so far the foods just change around- what was good isn't good anymore. There's more changes, another elimination diet to contend with, another way of cooking to learn, and a bunch of expensive food to throw out that has been found to be the reason for the random hives and/or stomach aches/diarhea my DD experiences. So I go home, I drag out all my cookbooks and start again. There will be several weeks of inedible dinners and disappointing meals before I find a few recipes that work. There will be tears from my DD over foods that were taken away. She'll says she doesn't care about chronic stomach aches and diarhea and she doesn't care if she won't get taller, she just wants the popcorn, LOL. I'll force the changes and for six months things will be better, then they will slowly start to decline until we're pretty much back at square one by October (although I will continue to hope it's in my head and her testing will all be normal).

 

Food allergies change your entire lifestyle. Everyone has things that trigger their frustration about their allergies and spark a bit of pity party. Mine is watching other families do fun activities that we can't participate in, not even because of the food factor, but because I can't pick up a pizza on the way home like other overbooked moms. They have a backup. I get upset that my only backup is what I made and froze myself. It bugs me that there's no drive thru for us. I'm not organized enough to be without a drive thru, and yet I am. No one's fault, no one did it to us, can't be helped, but that's the thing that bugs me. Stupid, I know, but it's there all the same. But I was raised in a culture where moms got those prepackaged family meals at the grocery store on the way home from work. I thought cooking meant opening a box and adding oil and an egg. That culture is one I cannot participate in now, and it bugs me, and it bugs my mom and my dad and everyone else in our family who wants to open a can of yams and call it Christmas without excluding someone.

 

And this is all just my own personal pity party mess. It doesn't even count the pity I feel for my daughter watching her struggle with her own fall out from the whole thing. And we don't even have life threatening allergies. We just have "eventually your daughter will fail to grow if she has diarhea every day." My daughter has the ability to cheat if she really wants something. She can decide if something is worth a day of stomach aches and/or digestional distress. If my mom thinks something she made is OK for my daughter and she is wrong, nothing horrible happens unless it was peanuts (which you usually KNOW if you put peanuts in something). I can't imagine being someone who can't have a slip up.

 

This is all to say, OP, that you're not alone. We all have these days where we just wish so badly that things could be different, and maybe we just get mad in general about the way things are. It's natural, it's normal, it's part of the process. It won't change anything, but :grouphug::grouphug::grouphug:.[/quote']

 

 

Amen to this....Stated SO well and truthfully!

[Mama Geek]

:grouphug:

 

Gluten makes dh extremely sick. It is really hard when the people closest to you don't even try to make an effort. My MIL is that way. She will cook a meal and only have one thing that he can eat. I have often realized it a few minutes before dinner and offered to microwave a potato for dh. We only have a couple of places that we eat out at and I help cook pretty much any time we go to someone's house for dinner.

 

One of the worst things for dh is at work. There are often meetings with catered lunches. Or a group will go out. That is extremely hard and awkward for him.