So I was explaining PA and how easily it can cause a reaction, and used the example of a shared keyboard with PB oils on it. The response was, "Yes, we need to be more sensitive everyone with all kinds of food allergies". I didn't get the sense that a PA issue was addressed after that statement so in an effort to press the PA issue, I said something to the effect of, " Well, take milk allergies for example. While just was dangerous on ingestion, PA has a higher chance exposure due to amount of PA products eaten by hand, as snacks. Oils are just so very likely to get transferred"
Then I realized I had absolutely no basis for that statement. So what I am curious about is how difficult "normal" day-to-day activities are for those who have FA instead of or in addition to PA? I am not looking for "My allergy is more severe than yours" debate. I'm truly trying to learn. A potential opportunity exists for helping a community become educated about what it is like to live with PA. However, if I know more about other FA, I'd rather broaden my message.
I know PA. We have the "peanut radar", which turns on any time we're in a place without an easy escape (bus, elevator, movie theater, college classroom). With PB discovered nearby, we watch seats, buttons, arm rests, desks/keyboards, respectively, for example.
Do you with other FA go through the same thing? Do you have a FA-specific radar?
What is the most difficult part of your allergy experience that you wish others understood?
[modified to add]
If you could answer the question....
Life would be easier for my FA loved one if people did/did not____________________.
Me? I wish people handled PB like they do raw chicken. Put knives directly in dishwaser. Use plates. Wash hands after touching. Eat candy bars like a banana, peeling the wrapper as the go. Enjoy it to their hearts content, but carefully.
I have the generally rare experience of having a non-top 8 allergy with ridiculous sensitivity and relatively severe reactions. I've reacted to trace amounts of residue from juice. I've had a contact reaction that sent me to the ER and this summer started having asthma flares from airborne exposure. (Which I actually wouldn't have believed myself, except that it happened twice, and each time was a blind exposure - I didn't know that large amounts of apples were being cooked until after I reacted.)
I generally try not to touch much of anything in public. I try to wear a sweatshirt most of the time so that I can open doors, push carts, and pick up things with my sleeve instead of my bare hands. I'm super careful with placement of products in the grocery store. Obviously I never purchase prepared fruit or veggies from the store.
Apples are in WAY more things than you would expect. The popular thing to do now is to try to make your product sound healthier by sweetening it with fruit juice concentrate instead of corn syrup. This is usually apple juice (or another fruit that I'm allergic to). It is not uncommon to find apple in potato chips or meat products.
I think that in general, life is pretty similar for anyone who has a severe food allergy with a low reaction threshold and serious reactions.
I do think that one of the benefits of PA as opposed to non-top 8 is that there is generally good labelling for nuts. With non-top 8, you have to make a lot of decisions about what to trust and what to skip, since they don't have to be on the ingredients list.
The point is you caught and saved yourself from your own solipsism. No harm, no foul, KWIM?
That speaker who ignored the important points you were attempting to transmit... different ish.
As far as allergens, I'm agnostic. Janelle covered the important factors: threshold, severity and history.
My child has MFAs including peanut. Peanut and seeds like sesame in general can cause reactions from a far smaller amount than most other allergens (and nuts are close to peanuts and seeds). That is according to the Peanut Allergy Answer Book. However, there are people who have ana from contact ingestion from other allergens, too.
My son had contact ingestion reactions many times including times when we should have given the epi and a time he ended up in the ER even though he didn't eat anything.
I don't want to get into a my child has it worse than yours or any thing like that and am rushing right now but do want to say that I appreciate your asking this. I get turned off by peanut only focus I see sometimes. It seems so blind to me as though other FAs don't exist or only peanut is important which as you know is not the case. So, I really appreciate you asking this.
DS was contact ingestion sensitive to seemingly all his allergens so we treated them all the same. Recently he doesn't seem to be contact ingestion sensitive anymore or not very sensitive and it is a wonderful thing to not worry about every little thing he touches.
In preschool, a child developed total body hives from contact with spilled milk, and it was just droplets of a droplet. He was not wet by the spill, as he was deliberately already placed away from children with milk.
When we also had egg allergy, and we still deal with raw egg allergy, I find mayo to be a pretty high risk for cross contact. I worry about knives at out sub shop, which is otherwise safe, and hands that may hve put mayo on another sandwich. So, again, the handle it like raw chicken would be good there. I do not deal with milk allergy, but i think cheese and milk products are more prevalent than PB, especially now that many schools are educated and reducing peanuts and nuts in schools. Cheese on tacos and nachos, cheese on burgers, pizza, milk itself, yogurt and yogurt parfaits assembled in the cafeteria. I would be very concerned if my child had milk allergy.
So, I do not and have never thought the peanut/tree nut allergy was worse or more difficult to contain. Threshold matters as well. That is highly individual.
My own child with a PA does quite well around others eating PB, granola, etc... with no reactions. we have never had any accommodation addressing shared keyboards at school. She is going for allergy testing today (environmental issues)and interestingly, she says she feels best at school! I am guessing they have decent hepa filters and are pretty closed off to outside allergens. and keep it clean. It always seems very clean to me, given there are 2000 students there everyday, plus the faculty to teach them. But, clearly the presence of PN/TN in lunches or snacks does not bother her. But, that does not give me any ground to stand on in suggesting it does not bother another student. It very well may be a challenge for others with very low thresholds.
So, I have always had some issue with singling out the PN/TN as the most important or dangerous one to address in schools, or the one most easily spread around. I think milk is also quite a high risk for those allergic to it.
Please dont thank me for the question. Want to make sure im understood though because I have been actually a HUGE supporter of all FAs. The issue at had was teacher passing out PB candy in post-secondary classroom. Because of experiences past, I actually expected a "sure, lets babysit every possible celiac, PA, TN, milk, soy, watermelon, etc allergy person AND teach your kids. Do you teach them to take any responsibility". That was unfair on my part and I jumped in defense trying to explain that not all allergens pose the same risks, emphasizing opportunity, if you will. But i didnt like my blanket thought.
So im trying to gather info to be able in prep formthis educational opportunity.
Thank you all for the input. Let me ask a different way though....
If you could answer the question....
Life would be easier for my FA loved one if people did/did not____________________.
im going to modify the original post and add this question bcuz it more to the point of what im looking for.
Life would be easier for my FA loved one if people did/did not____________________.
The usual response. If people did not always give food/candy for rewards, incentives in the classroom and'or school environment.
And, if people did not react with disdain when I need more information about the food or preparation of it.
Oh goodness. A person with dairy or wheat allergy would have such a time at our house. And treenuts. And egg, but we are more careful with that. I woukdn't worry about egg protein being on my couch. But dairy? We eat a lot of cheese.
What I don't know is the persistence of other proteins. A study was (finally) done about the persistence of peanut protein and the same study states that Lysol/Clorox wipes effectively remove it.
But we don't know how long milk protein stays on a surface and if wipes eliminate it. I would assume based on no real knowledge that egg protein would not break down so easily but that dairy might. But I don't know.
Life would be easier for my FA loved one if people did/did not____________________.
If people did treat sesame like they treat peanut.
My reactions to sesame are much worse than my reactions to peanut. And people don't always "get" that. Sesame seeds are healthy. People put them in salads and somehow assume that makes them safe. :insane:
And while a lot of companies are labelling for cross contamination with peanut....not so much with sesame seeds.
What is your day like with non-PA FA?
It's MFA. The "mf" is a nice double meaning there for us. Seriously, I can't do the non-PA, PA thing. :dunno:
Lol
Life would be easier if people realized that dairy is not just milk. Can't tell you how many times people have said oh dairy allergy, your kids can have butter right?
Mary - LOL! When DD was in preschool I always got....but it's a brownie/cupcake/cookie/whatever....it's not an egg!!! She's not allergic to brownies is she????
Really, people in the general public are a bit more educated these days and I do hear less of that silliness.
I chime in with it's MFA. They are all life threatening. There are many risks of exposure.
Now in HS, DD is her own advocate, but she has come home with more weird contact reactions in HS than ever before. I no longer have to argue with her to cover the back of her legs! She is happy it is cool enough for long sleeves too.
Our life would be easier if people didn't eat everywhere, all the time.
If people washed their hands compulsively, the way they do when they are afraid of ebola. ~)
The other thing is that no exposure is really "free" exposure when you're someone like DD, or Janelle, or one of our other members who live with that evil trio of non-PA, low-threshold, severe reaction history...
so even exposures that you kinda get away with fill that cup up, and make "the big one" that much more likely from a different exposure. We're currently living that one, too, with DD in post-secondary.
I'm starting to understand how it is that a student could find him/herself spiraling out of control in a post-secondary setting, honestly-- the lack of control over one's surroundings is really a-- a-- well, okay-- MFA, indeed. The residue is SERIOUSLY pervasive, and it's a constant barrage of low-level exposure. DD's allergy cup is so full that she really has almost no buffer for the occasional exposure via a more concentrated environmental source.
A single reaction that is more major, recall, ALSO leaves one primed for weeks or months afterwards, too-- so this is a major worry for us right now. :hiding: It's probably inevitable. But I sure don't find myself being very happy about it.
Life would be easier if people took other allergens as seriously as peanut.
Short and simple and to the point.
There were guidelines in school in regards to my PA kid (who has never had a known reaction, but tests positive) that I thought were overkill for him but I knew others who had PA children appreciated so I was quiet because ultimately it would cause him no harm but if I was to confuse the issue, it could bring harm to those who do need those precautions, kwim?
There were no precautions for my wheat, rye, barley and egg allergic child and it was the whole attitude that this is totally on him and not on us attitude that pissed me off.
So my child who has had no known reactions gets a better grade of care than my child who has suffered from anaphylaxis because well, it's just easier.
Yes, after all these years, this is a hot button topic for me.
Quote from: YouKnowWho on November 06, 2014, 12:46:38 PM
Life would be easier if people took other allergens as seriously as peanut.
True dat!
When DS started school, I was at the office discussing his allergy. The woman I was speaking to went on so proudly about the school banning peanuts, yadda-yadda-yadda. I let her finish and said something like "I'm sure that's very comforting for parents who's children are allergic to peanut. But that's not what my son is allergic to." And she said "if he's not allergic to peanut, what's he go an epi-pen for." :crazy:
I think maybe they were not completely to blame. There were so many kids with allergies, but the parents referred to them as "not serious". One mother who said "oh, it's not deadly like peanut, she's just a little allergic to milk".
Life would have been easier when DS was just a little bit younger and his life up to that point (when he became not so contact sensitive) if people didn't eat all over the place all the time as society now does and if they washed or wiped their hands after, if they understood that all FAs are potentially life threatening, not just peanut, if they had to label for all foods, not just the top 8. I had to call every company to find out of their foods had sesame in them because it is as potent as peanut but does not have to be listed on food labels. That's a heck of an allergy to deal with. Corn and other lesser known and not required to be labeled allergens are also really super difficult to avoid.
Having people tell me, 'at least it's not peanut' about DS's other FAs and having to tell them DS has peanut AND other FAs and have them not understand has been a given throughout all this.
So, from my perspective, I dislike when people with just peanut allergy minimize other FAs. However, peanuts and seeds are more potent than other allergens in general and I dislike when that gets dismissed by some as well. Both can be true.
Someone here said it is all about individual threshold. My child has had ana at events where he hadn't eaten anything for hours before or during due to contact ingestion. So, my child needed handwashing, needed to skip various events, and needed various accommodations at school. the fact that other kids have FAs and don't need these accommodations means nothing in terms of what my child needed. I would focus on your child's needs, your child's reaction history and I'd try to get a letter from any doctor of your child's backing this up and recommending the school do the things you child needs in order to be safe.
Good luck!
Quote from: MaryM on November 06, 2014, 09:33:21 AM
Life would be easier if people realized that dairy is not just milk. Can't tell you how many times people have said oh dairy allergy, your kids can have butter right?
QFT and we in our home don't even have to deal with dairy allergy!
Once upon a time I was horrified by comments such as "just avoid peanut butter" for your PA kid.
But now that I've aged a bit (um, 15 years since that kid's ana reax) . . . I am stupefied by the comments I hear and read as to dairy allergy and the "just avoid milk" crap.
Sometimes I wonder if people are REALLY that uneducated? But that might be a topic for discussion in another thread!
Lauren's Mom -- GREAT TOPIC and discussion!! Thank you!
Wanted to add that when this board as a group split from way-over-there, one of the things debated was the name and what we were to "be" . . . we became a FOOD ALLERGY support group rather than a PEANUT ALLERGY support group . . .
there was always a sense of need for inclusion. :grouphug:
Among other things.
When dd was 1st diagnosed, awareness/understanding of sesame allergy seemed pretty low & food labeling was not good which made things difficult.
With sesame allergy, some kids are actually able to tolerate small amounts, and it seems that (at least currently) my dd falls into this category. Just a reminder that sesame-allergic people should strictly avoid ALL sesame unless their allergist advises something different. This has taken the edge off of allergy management for us ... yeah, we still avoid most sesame & carry an epi, but I no longer have to worry about every.stray.seed.
Sometimes, I feel that I have turned into one of "those" moms .... you know, the "my child is allergic (to sesame, kinda to egg :P, and oh yes - the maybe OAS stuff) ... but she can have a little". Most of the time, I don't even bother trying to explain it to people. I just tell others not to give her sesame & dd knows to go easy on the egg.
Links, I worry about being one of 'those people' as well. There are the things that I can't have at all, OAS foods that always cause a reaction, OAS foods that only cause a reaction when my environmental allergen load is high, I can eat baked eggs but not straight egg or raw egg, and soy oil and lecithin is fine (unless it is a ton of soy oil), but soy protein is not ok at all...
I've just gone with telling people the things that I can't be around at all and reading everything myself or just not eating. DH's family has finally gotten used to me coming to events and not eating.
Yes! Qualifiers make food allergies complex and when I listen to DD try to explain it to a waiter so she can have more options....I wonder if it is worth it. Her choices are so limited.
If egg is baked into something containing flour, it is ok, but without flour like a meringue, as a wash or actual egg it is not. And garlic powder is ok, but fresh, dehydrated, and paste are not!
I get the science of why and I have taught DD that.....but for someone who really could care less except for getting a good tip....it's too complicated.
Yes-- I just tell people what we NEED from them. Not the whole story.
So I never mention anything that hasn't caused life-threatening reactions in the past. This means that nobody around us is much aware of the fact that we avoid aloe, mango, apples and certain legumes other than peanuts for DD. Nobody is aware that her milk tolerance is still not normal... and thankfully, we are rapidly reaching this point with egg-- other than mayo, of course.
In a restaurant setting, we prioritize--
peanut=cashew=pistachio>shellfish>egg> other stuff that we manage without communicating with kitchen or waitstaff. Yes, some of the "other" is dangerous, but for reasons of our own, it's only going to muddy the waters with laypersons. Civilians, as DH calls them.
A big issue for DS1 is his allergies to wheat, rye and barley which essentially makes up gluten. But you have lots of places that assume this is a phase or some weird diet for him. Many places, like Domino's cater to the pseudo allergic so while they have a GF pizza, it is not safe for him as it is on shared lines and facility with gluten. Whereas other places like Uncle Maddios (owned by Moes) gets the difference between allergy and intolerance. And while I hate the shouting at Moes, it brings a smile to my face when I hear "It's an allergy pie" and everyone stops to change gloves, kwim?
I no longer trust Whole Foods 365 labeling because it's not worth a hoot - they cater to the pseudo allergic, not those who suffer with Celiac or true allergies and blow you off if you have a reaction. This is not a fad, this is a life or death diet.
I know others disagree with how we handle his allergy at home but we do have wheat containing products in the home (he was the oldest and was diagnosed just prior to becoming pregnant with DS2). But we have restrictions on those products. I cannot bake with wheat in the house because it causes airborne reactions for him. But I can bake something that is premade (like refrigerated biscuits). But pans that bake wheat or cook eggs are segregated and other precautions are in place such as parchment paper. Dinners are always free of allergens but lunches and breakfasts are not because they tend to be short order items. On pizza night, I do buy GF pizzas for him and my MIL (because they are roughly $6 for a pizza the size of a Totinos because his egg allergy) but make gluteny pizza for the rest of us.
My MIL developed issues to gluten about 3 years ago. She, IMO, falls into the fad diet category. Yes, gluten causes her an issue but she will survive if she peels her hamburger off her bun (something I did once early in the journey and regretted immediately) and can handle Whole Foods products whereas DS1 always reacted. If we shop at certain times in one grocery store, DS1 has to wear a mask in the produce department because they are mixing flour. It doesn't bother MIL at all.
Holidays are a pain unless we stay home because I cannot make people understand cross contamination at all which means that I have to cook an entire dinner for the kids and MIL to bring with. And then there is the panic if someone accidentally contaminates safe dishes. And while DS1 has come a long way in regards to anxiety - it freaks him out. I will say both boys are okay with different and I don't feel obligated to recreate the same in regards to treats. I think DS1 learned early on that was not in my repertoire.
My life with milk allergy would be easier if people would get a grip on the fact that milk allergy is not the same thing as lactose intolerance. No one dies from lactose intolerance. I cannot even count the number of times that I tell someone I am allergic to milk and they say "oh yeah, I have a friend who is lactose intolerant too". That really annoys me.
I tell people I am lactose intolerant and they assume it is a allergy! (oh and some will say, then you can't have egg either, it's dairy!)
People who don't live it don't understand.
Since having DD and learning to maneuver around the mine field of food allergies with dairy being one thing she can eat, I no longer try to explain my situation anymore.
1. I'm pissed.
2. What I would want people to know, what would make things safer if not necessarily easier, is to STOP referencing wheat and barley as an ALLERGEN if the reference is not to IgE-mediated allergy and anaphylaxis. STOP the conflation.
3. START realizing you can hurt someone by doing so.
4. Before I forget, buckwheat is not related to wheat. End of story.
Here's a day in my life. Just add the "casein" free lifestyle.
http://youtu.be/AdJFE1sp4Fw (http://youtu.be/AdJFE1sp4Fw)
HELL yeah.
What guess just said.