So, after suspected potato reaction number two, I have been researching like mad and wonder if all my reactions boil down to some sort of extremely severe anaphylactic OAS.
Just looking at:
http://www.inspection.gc.ca/food/information-for-consumers/fact-sheets/food-allergies/oral-allergy-syndrome/eng/1332351950134/1332352076501 (http://www.inspection.gc.ca/food/information-for-consumers/fact-sheets/food-allergies/oral-allergy-syndrome/eng/1332351950134/1332352076501)
The only thing I showed extremely positive to on my SPT was birch, and that wheal was ~40mm, which I think quack allergist said was class V (or maybe IV++). (I have no idea if that is relatively big or small.) I don't normally have seasonal allergies at all, though this spring I have been a bit snotty which is unusual. Birch isn't on our pollen counts because it isn't common here, though aspen and poplar are high right now. Hazelnut tree pollen is low. (I didn't know hazelnut trees were common here?) Aspen and birch are pretty close in botanical structure, cousins if you will.
Definite reaction anaphylaxis history to hazelnut, walnut, almond, peanut, and potato and possibly mild reaction to tomato (both cooked) -- all cross-reactive with birch. I have had severe reactions in the middle of winter, however.
What do you guys think? Can someone have extremely low threshold anaphylaxis reactions due to OAS alone? Just trying to figure this puzzle out so I have something to go with until my allergist appointment, whenever that will be.
Wellllllll--
understand that among persons with anaphylactic CLASSIC food allergy, the "rules" with OAS seem to be quite a bit different than for everyone else who has "allergies."
That is, someone like my neighbor who has pollen allergies might have birch or grass pollen OAS, and be able to eat those things safely, but for annoyance, or but for during that few weeks of the year when that pollen cup is full.
There might be little-to-no danger in eating them.
Someone who has demonstrated ability to anaphylax, particularly from ingested allergens, on the other hand-- what I've gotten out of the literature, textbook references, and anecdote over the years is that people with anaphylactic food allergies tend to have the ability to have OAS become anaphylactic as well.
There's no bright line dividing "OAS" from "food allergy" if you already have IgE-mediated food allergy, in other words. Oh, sure, it might start out that way, and maybe even be stable for some people-- but not for everyone.
It doesn't seem THAT rare to me among people on the end of the food allergy distribution to have an OAS trigger go wild and suddely jump ship to become a food allergen that is capable of causing systemic reactions. Some of them can still get away with heat-denatured allergen, and some cannot.
DD has apparently had this happen to her now with apples. DH has had it with melons and apples both. I have it with oranges (well, really ALL citrus fruit).
What is potato even cross-reactive with, though? Isn't it grass? ???
I'm not one of the scientific minds here so I'll share what I know based on our experience. Everybody is different.
According to our allergist OAS and Anaphylaxis, while both a kind of allergic reaction, are not the same thing. OAS is not life threatening and it's symptoms are related to the mouth. Accidental exposure is not pleasant but is considered OK. Having said that, a food that has caused OAS in the past can become a food that causes anaphylaxis.
My DD has OAS to fruits related to birch trees (she is highly allergic to all tree pollens). Basically anything with a pit and pears. She tests positive to apples, but she eats those often. She can eat the canned/jarred version of all of these fruits.
My DD has anaphylaxis to all melons which are related to ragweed (which she is mildly allergic to). She can not have any form of these fruits.
My DD has anaphylaxis to pineapple which is related to latex (which DD is not allergic to) and she does not like raw banana but loves banana bread (makes me think she is OAS to banana) and yet she eats kiwi almost every day.
Weird huh?
Allergies are so not easy to decipher!
Hope you can see your allergist soon!
My allergist seems to think that this was probably how my food allergies started. I'm allergic to nearly all of the environmental allergens, and massively allergic to birch.
20 years ago, if I ate an apple, my mouth, throat, and ears would itch and tingle. Eventually it just kept getting worse. Now I react to fully cooked and processed apples, and have had anaphylaxis from contact ingestion. Season does not matter for these and most of my other fruit allergies.
I have to avoid most of the cross reactive foods, though I don't have a problem with potatoes - I eat them and peel them with no issues. Most non-tropical fruit is out for me, except for berries. I can eat bananas only in the winter.
My OAS isn't mouth only. An apple eaten during ragweed season caused my nose to gush like a faucet on full blast. My throat was really irritated, and I couldn't stop coughing long enough to say anything. Ears got really tingly as well. I took Benadryl and was OK soon.
Qualified yes. The specific food(s) must be related to a particular culprit pollen for that perfect storm.
So I guess I am pulling at straws trying to find an answer. Your answers all seem like what I though initially, before I got so desperate for answers. This seemed almost too easy to blame, though I realized most OAS is merely irritating, not life-threatening. They do say it is possible, but what is mentioned here reinforces that it would be very unlikely.
My nut allergies started in high school, maybe before, with itchy mouth, itchy ears, and sometimes irritated throat we just wrote off as my 'normal' or asthma attacks. Could that have been OAS back then, who knows. No history of hay fever, ever though...
About a year ago I started getting stomach aches and diarrhea after eating. No mouth/throat/systemic symptoms then. My GP and I figured was due to a new food intolerance we narrowed down to potatoes and tomatoes. I wonder if that was the start of this new allergy too. I asked if it could be a new allergy and my GP said it was unlikely but we had many doses of Epi just in case it turned out that way.
Potato and tomato are linked to birch allergy, as well as a long list of other foods including all my current allergens. Birch was the only positive on my SPT, and spectacularly so, despite no hay fever. Everything else I am allergic to tests negative in blood work and SPT. You can see how easy I could connect those dots with OAS, even as a primer way back when before the food allergies turned so severe.
For now, I guess we shall avoid potato until we see the allergist. We are going to test cooked then raw tomatoes at home later this month to see if they are problematic as well. I guess if the allergist doesn't think of the connection I can always ask about it then. I should get a call with my allergist appointment time on Tuesday.
Thanks everyone for chiming in.
I would expect that if it were an OAS issue, you would also have issues with some of the fruits that are more strongly correlated with birch pollen issues, like apples and stone fruit.
And I would agree with the assessment that it's pretty rare. I got my first epi when the doc thought that it was 'just OAS' but he admitted that he wouldn't normally prescribe it for that, but more wanted me to carry because of severe asthma issues and living in the middle of nowhere. They are definitely 'real' allergies now, but the doc has stressed to me that is awfully rare, and doesn't think that my family members with OAS need to worry about it becoming severe.
DD has OAS to cucumber and cantaloupe. Her allergist at Hopkins (well regarded) has said it can develop into a true food allergy. We still have had her try either again; though we have been told we can try. Neither is essential to her diet. She is able to eat honeydew (though admittedly doesn't like it) and watermelon.
My reaction to tomato wasn't tomato at all. It was what I was always eating with tomato. It wasn't allergic either but it usually LOOKED exactly like that.
How do you know when it has crossed from OAS to true allergy? I wonder if that's happened with me to apples.
I'm guessing that is different for all. For DD, hers have changed when the symptoms go past her throat and suddenly include "chest squeezing".
The difference is local versus non-contacted locations/systems.
So mouth swelling-- even hives on the face-- could still just be super-bad OAS.
On the other hand, hives on your arm, or watering eyes-- probably not. Asthma? DEFINITELY not.
I got tingly throat, uncomfortable feeling in ears, nose dripping like a gushing faucet, coughing so much I couldn't talk. I can't remember exactly if lips swelled some. I know they did for something, but I can't remember if it was due to apple. It resolved with Benadryl and Allegra.
Does that sound like OAS or true allergy? Either way, I avoid it. Not avoiding cross-contamination, just actual apples.
I should add I am fine with granny smith apples.
Mookie, our allergist tells DD not to eat the part of the apple near the stem. She said that is where the pollen/protein is concentrated in the fruit, where it hangs from the tree. So when DD eats an apple, she avoid the top part.
Mookie, I would interpret that as crossing over. That's definitely more than one body system. You've got lungs, throat, and nose going.
The one who had a baby last night--she has an apple allergy--has had anaphylaxis from it, if you need support for this allergy at some point.
PurpleCat, that's not my issue. I had my problem with the first bite I took into a whole apple. Thanks, though.
Mac or anyone else, do you think I have to do anything different than I do now? I eat granny smith apples fine, and that's all I will eat. However, I haven't seen a need to check crosscontamination. I don't have an epipen, either.
From the research I did about this, OAS may include mild seasonal allergy type symptoms as well as itchy mouth. Mookie, you may want to ask an allergist about your reactions. I would think they are borderline: could be OAS or true allergy. If I were you, I would want to know which since the latter would require Epi.
I agree. Better to know.
Some people find peeling fruit before eating helpful.
I have OAS to too many fruits and veggies to even list - the only one's that don't bother me raw are berries, citrus, cukes and peppers. If I'm off my daily Claritin, I can't even eat lettuce. My choice of raw fruits and veggies expands when I use Claritin, but during allergy season all bets are off. I joke that I'm better off on a Devil Dog or Ring Ding diet. ;)
Last summer I really goofed - I forgot my Claritin the night before and ate a plum. Not good - intense itching, mouth and throat swelling, super clogged ears. Won't make that mistake again.
Well guess what, my food allergies aren't food allergies at all, they are secondary allergies due to OAS -- and they must be some bizarre weirdo type of OAS because everything I have read echoes what you guys have said here about it mostly involving fruits, vegetables, and mostly during pollen season. And rarely to the level of grade 4-5 anaphylaxis I've had multiple times. And those reactions happening long before ever having any symptoms of grass/pollen allergies. ??? The allergist was convinced, and he was nice and knew his stuff, so I have to believe him. The CFIA website has similar details too, which is why I suspected OAS earlier.
At least this time some things showed up on the SPT: a few trees and grasses. Apparently my nose is inflamed, so I do have some seasonal allergies this year, though in the mild-moderate category. But, since my OAS food allergies so severe (anaphylaxis), I am at high risk of developing new OAS food allergies without warning (just bam, here you go, anaphylaxis to potatoes, have fun). Joy. ~)
None of the options sound fun: do nothing and have mild-moderate seasonal allergies and a high risk of developing more food allergies (can I even call them food allergies if they are OAS?), take allergy meds daily and be at moderate-high risk of developing more food allergies, or take allergy shots for 5+ years and hope that I will get relief from seasonal allergies (which aren't very bothersome) and possibly be able to eat potato again, and slow/stop the development of more food allergies (but for how long if allergy shots only last two or three years?) It's likely PN/TN will forever be forbidden due to their long reaction history. Ugh, the first two options sound awful (who would risk more food allergies?) and the second one just doesn't seem worth it (5+ years of weekly/monthly shots for temporary relief? Then what? 5+ more years of shots? Lifetime?). I need to do more research on this. So confused. And depressed. :'( Sorry for the rant.
But there you have it: OAS can get funky weird without any major/bothersome seasonal allergy symptoms.
That's how I found out about apple, just -- WHAM. Right before it happened I did that thing I do tempting fate wondering how people become allergic apples.
spacecanada-- I have two immediate family members who have done immunotherapy-- and DH is still reaping the benefits of having done it THIRTY years ago.
(Not kidding)
He has never had to repeat that immunotherapy. He very definitely had bad OAS before he did it, and was rapidly developing more food cross-reactivity as a result of his pollen allergies. Bam-- stopped that in its tracks.
Now, then, there is DD.
DD did six years of immunotherapy for pollens-- and at the end of it, she got some fruits back that she'd lost. Her allergy symptom control was GREAT-- and her asthma was easier to control, etc. etc.
Now, her OAS was never as severe as DH's had been (his was systemic), but it came BACK after about 4 years off of immunotherapy. Boo, hiss.
So we are trying it again. Might as well, since we're trying molds and pet allergens this time, too.
I don't know-- but if you get to a maintenance dose that allows you to live without fear of ramping up additional food allergies, even if it means a monthly injection, I honestly might count that as worth it. DD stayed on a maintenance dose a long, long time (2+ years, in the hopes that the therapy would "hold" better)-- so I don't know if she will ever be stable off of immunotherapy the way that her dad is. Oh well.
CM - that is pretty much what the allergist said: allergy shots work for some better than others. Some see no relief at all. It takes approximately 1.5-2 years to see results for seasonal allergy relief and three years to get any sort of lasting results. He also said those with severe food allergies due to OAS need a significantly longer time to see reduced reactivity for their OAS foods, thus the 5+ years. (He said 5-7 years.) He said we could challenge potato after 4-5 years, and peanuts/nuts after 5-7 years if I want, but cautioned that peanuts and nuts will very likely be life-long and severe due to my reaction history.
I would love to hear others' experiences with OAS and allergy shots if they have them. PM me if you prefer. Or post links here.
I guess the fear lies in adding more food allergies if I don't do anything. I really don't want that to happen. Life is difficult enough with three major allergens and dairy intolerance. Cannot start allergy shots until October, so I have plenty of time to ponder this. In the meantime, we are avoiding all foods with anaphylaxis reaction history (pn, tn, potato) and dairy (intolerance) and carrying on per usual.
DS just finished his weekly allergy shots (2 in each arm). We are moving onto every two weeks for 3 visits and then onto monthly. As far a I know, DS does not have OAS, but I have my suspicions...he will not eat melons (and maybe he just doesn't like them). It's taken years for him to eat watermelon. I will make him try them again this summer.
The main reason we did the allergy shots was to halt the "allergy march". Last time DS was tested in IL (testing was maybe 2 yrs ago), he was not allergic to molds. When he was tested here, the big surprise was that mold was now positive, along with grass, trees, weeds, dust mites...but not dog (bummer, I would have had a valid reason for re-homing the hairy beasts, oh well) and cat.
The allergist was wondering at our last appt if his tree nut allergy was really just bad OAS. I'm not convinced, but then again, I don't have an M.D. after my name. We have a follow up next week. Don't know if there is any testing planned yet, will have to call.
Sorry, SC, I guess I never finished that thought!! What I meant to say was that I know a few people who are on SCIT maintenance for-- well, basically just about forever.
That is, they'll go in for a monthly maintenance dose every 3-4 weeks and have been doing so for 4, 6, 8 years or more... but it's because (like poor DD, I guess) trying a "course" of therapy just didn't work long term, and they lost ground when off of therapy entirely.
I will say that DD saw some relief about 2y into things. By 4y, we had really good impact.
Our reasoning was the same as Hezzier's-- to stop the allergic march and hopefully prevent airway remodeling via allergic asthma over a lifetime. It definitely has worked out that way for her dad, who never went on to develop asthma in spite of being Atopic with a capital A.
If she had to stay on maintenance for a decade or more-- well, there are worse things. (Like developing allergies to every kind of fruit, which is kinda in progress at the moment).
I did allergy shots from about 15-21. I still had OAS symptoms after I stopped getting the shots, and my allergies increased in severity and number starting at around 24.
Honestly, allergy shots didn't seem to do much, if anything for my allergies, but it was worth trying, given the severity of my asthma. I think that there may be some sort of genetic component in my case - both my Mom and my brother have done shots as well, and they did not have success either.
Anther question that dawned on me whilst laying in bed last night: If I have an extremely low threshold to my 'faux' food allergies because my immune system is thinking they're pollens or grasses or whatever, isn't injecting those 'real' allergens pretty risky? I mean, traces of traces here = anaphylaxis. Contact ingestion = anaphylaxis. And those are with proteins that are only similar to the ones I'm actually allergies to. I'm not ready to start injecting myself with even more potent allergens, kwim? The thought terrifies me.
(The documentation on allergy shots the allergist gave me is useless because it is exclusively about severe seasonal allergies. There's a warning that some people get anaphylaxis from the shots too.) :-/
That's why they start with a low concentration and a low dose and you have to wait for a minimum of 30 minutes before you can leave.
Our allergist office has a specific area to sit after shots and they are quick to investigate any cough or sneeze. I, of course, seem to always have a tickle in the back of my throat the days DS gets shots.
Well, yeah-- I won't lie to you, DD has had epinephrine drawn for her more than once.
It's important, if you're a person with anaphylaxis Hx and that kind of threshold, to really, really follow directions well (DD takes a LOT of pharmacology to withstand her immunotherapy regimen, and she goes above and beyond to limit the late-phase reactions-- no hot baths/showers after for 12 hours, no exercise after, etc), and to do immunotherapy with someone who is something of an expert in the area. Her allergist tweaks her dose (or delays dosing) pretty much ANY time something seems off, the pollen counts are spiking, etc.
We have that going for us-- our allergist IS a guru in immunotherapy protocols, and he is also right next to the emergency room, and he trained at Mt. Sinai. He's easily one of the smartest MD's I've ever known, and he is also not one bit arrogant.
If any of that were missing, we might well have chosen differently. My one objection to him/his office is the amount of food in the waiting room. It's a problem, and it has BEEN a problem throughout the entire decade plus that we've seen him.
The more I look into this the more confused and frustrated I get. Most resources I read (including AAAI, PubMed, UpToDate, Medline, Mt. Sinai, among others) say immunotherapy is an inconclusive treatment for OAS (many studies have no effect at all, few show mild improvement to tolerance levels), less than 2% of people with OAS experience anaphylaxis, and most people can tolerate peeled and cooked foods that would otherwise be problematic, but cooked foods (including roasted nuts) may cause problems in a small portion of affected people.
(Yeah, I scrubbed, peeled, cooked, and rinsed those potatoes, just saying...) ~)
Immunotherapy seems to work really well for environmental allergies, from what I'm reading.
OAS is also known as pollen-food syndrome; a note worth mentioning here, as many legitimate resources mentioned it as such.
* I am just pooling notes in this thread for future reference and pondering. Mods can move/delete my pondering if they wish. *
A few resources:
https://books.google.ca/books?id=bTVPCAAAQBAJ&pg=PA145&lpg=PA145&dq=oas+immunotherapy&source=bl&ots=JeWifTVTip&sig=AdyXhaMknvASqb55sTdSleveXEM&hl=en&sa=X&ei=pX9fVZKSM4GFgwTxl4GoBQ&ved=0CFwQ6AEwCTgK#v=onepage&q=oas%20immunotherapy&f=false (https://books.google.ca/books?id=bTVPCAAAQBAJ&pg=PA145&lpg=PA145&dq=oas+immunotherapy&source=bl&ots=JeWifTVTip&sig=AdyXhaMknvASqb55sTdSleveXEM&hl=en&sa=X&ei=pX9fVZKSM4GFgwTxl4GoBQ&ved=0CFwQ6AEwCTgK#v=onepage&q=oas%20immunotherapy&f=false)
http://www.inspection.gc.ca/food/information-for-consumers/fact-sheets/food-allergies/oral-allergy-syndrome/eng/1332351950134/1332352076501 (http://www.inspection.gc.ca/food/information-for-consumers/fact-sheets/food-allergies/oral-allergy-syndrome/eng/1332351950134/1332352076501)
https://www.allergyuk.org/oral-allergy-syndrome/oral-allergy-syndrome (https://www.allergyuk.org/oral-allergy-syndrome/oral-allergy-syndrome)
Space, I really don't have any direct advice about immunotherapy and OAS; I did shots for several years and got great results for my seasonal allergies, but eventually had to stop due to anaphylaxis on 3 separate occasions. My allergist and I mutually decided after the third time that they were really not a viable option for me. I can't say that I saw any improvement in my OAS, but I might not have been doing them long enough.
I will say that after I finished the shots my seasonal allergies never went back to being as bad as they were before - particularly ragweed. I don't regret doing it at all.
Space, I understand where you're coming from. My allergists both said tha, since I can't take antihistamines, these shots will eliminate my reactions to food...but it could take years and may not work. I struggle to understand why I should undergo these shots when most of my environmental allergens rarely impact my life. (Dust being the exception, but as long as I don't breathe or touch dust I am usually fine. The only time I had to epi for grass was when someone stuffed my shirt with grass.) given my experiences, I worry that this procedure will either worsen or add to my allergies.
I hope that your allergist listens to your concerns and develops a response plan to address them before you begin this journey.