- Welcome to Food Allergy Support.
Posted by GoingNuts
- May 13, 2015, 12:09:04 PMWow, if you only had that on video. Worthy of submitting to your state's medical board. 
Holy Cow, what a jerk. I hope you can get in to seethe other one, ASAP.
Holy Cow, what a jerk. I hope you can get in to seethe other one, ASAP.
Posted by ninjaroll
- May 13, 2015, 10:37:11 AMWow. Seems too many forget the spirit of the Hippocratic Oath. If you haven't done so already can you start a food log? A spreadsheet would be good but a $1 notebook would do just as well. I'll see if I can dig up supporting documentation, in a sense I'll take up that jerk's suggestion and 'Google' for some peer reviewed research in scholar. In the meantime a short article might be a start. http://allergicliving.com/2013/10/29/does-alcohol-make-food-reactions-worse/
Did you go through AAAAI.org to locate the allergist? It's not a mistake if you did not I'd recommend it, though.
Did you go through AAAAI.org to locate the allergist? It's not a mistake if you did not I'd recommend it, though.
Posted by CMdeux
- May 12, 2015, 08:55:22 PMWow-- I've heard (and even experienced, on one occasion) some doozies of doctor's appointments.. but that one is up there on the wall of shame, for sure.
Glad that you have another option-- and that you're already pursuing it.
Glad that you have another option-- and that you're already pursuing it.
Posted by LinksEtc
- May 12, 2015, 05:14:18 PMI'm sorry that you were treated that way by the allergist blujen & that you didn't get the help that you needed. 
It sounds like a good idea to try the other allergist.
I don't really want to guess the cause of your rxns, but I'd suggest avoiding things that might be an issue until you see the other doc & to continue to carry epinephrine & I'd also suggest carrying a FAAP/ECP (ex - http://www.foodallergy.org/document.doc?id=234 ).
It sounds like a good idea to try the other allergist.
I don't really want to guess the cause of your rxns, but I'd suggest avoiding things that might be an issue until you see the other doc & to continue to carry epinephrine & I'd also suggest carrying a FAAP/ECP (ex - http://www.foodallergy.org/document.doc?id=234 ).
Posted by blujen
- May 12, 2015, 04:31:13 PMSorry i haven't come with an update - I did go see my allergist. He is one of only two board-certified allergists in my area, and i'm working on the paperwork to go visit the other one. As I mentioned this guy is new, i've only been seeing him since January, this was my third visit. I'm going to do my best not to return.
I described the events to him as I have to you, and he essentially thought it was a joke. He was seriously laughing in his office and suggested that maybe I shouldn't drink anymore. He joked around a bunch, then suggested I try DGL Licorice, and see if I get sick again after drinking some vodka. If I do, I should then try Cytotec and some vodka. If neither of those things worked, I should do some google "research" and bring it in to him to discuss, he "doesn't have time to do that sort of thing".
I've honestly never left a doctor's office this upset in my life. Needless to say, I wont' be trying his suggestions. Working to get into the other doctors.
I described the events to him as I have to you, and he essentially thought it was a joke. He was seriously laughing in his office and suggested that maybe I shouldn't drink anymore. He joked around a bunch, then suggested I try DGL Licorice, and see if I get sick again after drinking some vodka. If I do, I should then try Cytotec and some vodka. If neither of those things worked, I should do some google "research" and bring it in to him to discuss, he "doesn't have time to do that sort of thing".
I've honestly never left a doctor's office this upset in my life. Needless to say, I wont' be trying his suggestions. Working to get into the other doctors.
Posted by CMdeux
- April 17, 2015, 01:42:52 PMThat's exactly what I was thinking, Rebekah-- that a food allergen that is ordinarily tolerated may not be when you add together a bunch of influencing factors, add alcohol, and stir.
So, other factors influencing this might be:
a) major life stresses, b) immunological stresses (hormones can do this for the ladies, too), c) pollen/environmental allergen load, and d) exercise.
Pick any three from the list, and your "allergy cup" just got way more full.
I'm guessing it isn't the alcohol itself-- because it's all different types. That is why I tend to think that it's the alcohol potentiating something already going on.
That said, my DH is virulently intolerant of a particular variety of hops, of all things. Has made him sicker than a dog every stinking time since he was in his late 20's. While he simply doesn't drink any alcohol at all now, he certainly had to be careful when he was still sampling craft brews, and still has to watch for N. American brands that might use the particular type of hops. European hops are not a problem, for whatever reason-- he can drink German lagers (non-alcoholic at this point) without a problem.
I mention that because it sounds radically different from your experience.
So, other factors influencing this might be:
a) major life stresses, b) immunological stresses (hormones can do this for the ladies, too), c) pollen/environmental allergen load, and d) exercise.
Pick any three from the list, and your "allergy cup" just got way more full.
I'm guessing it isn't the alcohol itself-- because it's all different types. That is why I tend to think that it's the alcohol potentiating something already going on.
That said, my DH is virulently intolerant of a particular variety of hops, of all things. Has made him sicker than a dog every stinking time since he was in his late 20's. While he simply doesn't drink any alcohol at all now, he certainly had to be careful when he was still sampling craft brews, and still has to watch for N. American brands that might use the particular type of hops. European hops are not a problem, for whatever reason-- he can drink German lagers (non-alcoholic at this point) without a problem.
I mention that because it sounds radically different from your experience.
Posted by rebekahc
- April 16, 2015, 03:56:00 PMI wonder if it's a combo with wheat and alcohol since you do have reactions to touching wheat. Looking at your list, it seems wheat may have also been a common denominator in your recent reactions. There is a type of reaction where a person has anaphylaxis when combining a certain food (often wheat) and exercise. Maybe alcohol has a similar mechanism - dilating the vessels, etc. - as exercise would?
Posted by blujen
- April 16, 2015, 01:19:24 PMFirst off - thank you all so much, it's so nice to be able to talk to other people with allergy issues, who don't look at me like I have 2 heads for being nearly 40 and not having "grown out" of those kid stuff allergies.
Yes, If it had been on my radar that a reaction so different from my previous reactions might still be allergic, I would definitely have used Epi. That is the plan. I carry an emergency pouch with my epi, inhaler, and benadryl everywhere I go, and have spare epi at home in an easily accessible location in case my pouch isn't easy for someone else to find. Thanks for the affirmation that my plan to "stab first and ask questions later" until I can talk to my allergist is the right plan for now.
I have read here that blood tests are the way to go for food allergies now. When I was first having issues, they either weren't available or my Dr thought they weren't reliable enough to bother with, and over the last 10-15 years my reactions been so reliably the same that we haven't bothered re-testing. My Dr of 25 years retired in September and I have a new Dr who is on the other side of the fence entirely, and did a baseline style blood test the day I came to his office (not sure exactly what it was but it wasn't the food specific tests) and did the new skin tests.
It was a relief because the last set of skin tests I had was 144 allergens, and I was just exhausted for days afterward. 8 years of 3 weekly injections did nothing to effect the results of the tests I had in January incidentally, all the same as previous tests except cat was ever so slightly lower, brome grass was actually worse.
All that is to say that i'm positive when I tell the new Dr the story he's going to order whatever tests are the newest / best advised tests. Should I expect just another blood draw, or a food challenge of some sort? I haven't done one of those since I was pretty young, but it was an awful experience =/.
Alcohol exacerbating a different reaction would be both a relief and not a relief. Good that if we sort out the alternate I can still possibly have the occasional glass of wine. Bad in that it means I have another food I should probably be avoiding. Or maybe it's just the alcohol that I should avoid. Giving up beer and hard liquor would be a snap, but giving up a good fruit wine is going to be a tearjerker for me.
Again, thank you SO much for being here, and for being so welcoming.
ETA - it was an iGe test that he did.
Yes, If it had been on my radar that a reaction so different from my previous reactions might still be allergic, I would definitely have used Epi. That is the plan. I carry an emergency pouch with my epi, inhaler, and benadryl everywhere I go, and have spare epi at home in an easily accessible location in case my pouch isn't easy for someone else to find. Thanks for the affirmation that my plan to "stab first and ask questions later" until I can talk to my allergist is the right plan for now.
I have read here that blood tests are the way to go for food allergies now. When I was first having issues, they either weren't available or my Dr thought they weren't reliable enough to bother with, and over the last 10-15 years my reactions been so reliably the same that we haven't bothered re-testing. My Dr of 25 years retired in September and I have a new Dr who is on the other side of the fence entirely, and did a baseline style blood test the day I came to his office (not sure exactly what it was but it wasn't the food specific tests) and did the new skin tests.
It was a relief because the last set of skin tests I had was 144 allergens, and I was just exhausted for days afterward. 8 years of 3 weekly injections did nothing to effect the results of the tests I had in January incidentally, all the same as previous tests except cat was ever so slightly lower, brome grass was actually worse.
All that is to say that i'm positive when I tell the new Dr the story he's going to order whatever tests are the newest / best advised tests. Should I expect just another blood draw, or a food challenge of some sort? I haven't done one of those since I was pretty young, but it was an awful experience =/.
Alcohol exacerbating a different reaction would be both a relief and not a relief. Good that if we sort out the alternate I can still possibly have the occasional glass of wine. Bad in that it means I have another food I should probably be avoiding. Or maybe it's just the alcohol that I should avoid. Giving up beer and hard liquor would be a snap, but giving up a good fruit wine is going to be a tearjerker for me.
Again, thank you SO much for being here, and for being so welcoming.
ETA - it was an iGe test that he did.
Posted by momma2boys
- April 16, 2015, 07:13:05 AMI agree with what everyone else said, just wanted to add that I would think the risk of mushroom contaminating the pizza sauce would be high. I worked at a pizza place as a teen and all the toppings are lined up and it was common for them to fall in the other containers. Good luck!
Posted by GoingNuts
- April 16, 2015, 06:50:55 AMQuote from: Macabre on April 15, 2015, 09:26:41 PM
First of all you should know that alcohol can exacerbate reactions.
This is what I was coming on to say.
A friend of mine had anaphylaxis back in the dark ages of the 1970's, and alcohol was always the common denominator. Didn't have FA's per se, but when she combined food with alcohol bad things happened. And back then, nobody really understood WTH was going on with her.
Glad to hear you're seeing an allergist next week.
Posted by Macabre
- April 15, 2015, 09:27:53 PMOh--looking back I see you have Auvis. Great.
Posted by Macabre
- April 15, 2015, 09:26:41 PMFirst of all you should know that alcohol can exacerbate reactions. My allergist told me this after I had anaphylaxis after putting some lotion on my hands at a store in the mall--after sharing a bottle of wine tigh DH and eating a red sauce (which probably didn't help things). Within 20 minutes of trying the Everything Nice lotion at Origins, my hands began to swell up, my nose started running like a faucet, and my tongue swelled. I wasn't Dx with allergirs, but did have my toddler son's epis and liquid Benadryl in my purse. I used the liquid Benadryl, bating my tongue in it, and I lucked out.
The culprit? Chamomile.
No one has said yet, but everyone in this thread is thinking that we need to tell you that skin prick tests are very unreliable for food allergies. They have a high false positive rate. Once you narrow your suspicions down, get an ImmunoCAP test, but even that can have false positives and negatives. Your reaction history is the most reliable. But the tests can be helpful.
Do you have an EpiPen? If you have two or more body system symptoms OR only one symptom and it's throat closing youbshoukd use an Epi and call 911 for transport to the ER. Do not go by car. Also--if you have bad GI like that again, Epi could be called for. Gi symptoms are associated with a sudden decrease in blood pressure.
An epipen will not hurt you (unless you have a pretty rare heart issue) and it can save your life. Use it sooner rather than later, becUse there can be a point of no return when even Epi can't save you. Also, if you aren't better in 5 mins a second Epi is generally called for. Also, stay at the hospital for four hours. Biphasic reactions are common. I have had one (second Epi in the ER) and DS had one after 8 hours.
We are very glad you posted. Stay safe.
The culprit? Chamomile.
No one has said yet, but everyone in this thread is thinking that we need to tell you that skin prick tests are very unreliable for food allergies. They have a high false positive rate. Once you narrow your suspicions down, get an ImmunoCAP test, but even that can have false positives and negatives. Your reaction history is the most reliable. But the tests can be helpful.
Do you have an EpiPen? If you have two or more body system symptoms OR only one symptom and it's throat closing youbshoukd use an Epi and call 911 for transport to the ER. Do not go by car. Also--if you have bad GI like that again, Epi could be called for. Gi symptoms are associated with a sudden decrease in blood pressure.
An epipen will not hurt you (unless you have a pretty rare heart issue) and it can save your life. Use it sooner rather than later, becUse there can be a point of no return when even Epi can't save you. Also, if you aren't better in 5 mins a second Epi is generally called for. Also, stay at the hospital for four hours. Biphasic reactions are common. I have had one (second Epi in the ER) and DS had one after 8 hours.
We are very glad you posted. Stay safe.
Posted by blujen
- April 14, 2015, 12:50:07 PMYou're right eating wheat has not triggered allergies although I test positive to it. Skin contact to uncooked wheat, in fields or ground into flour does trigger hives within minutes, and I have horrible respiratory reaction to all grass pollens, and wheat pollen season I can count on being sick during the high week.
Cross contamination IS possible, either in the beer or the pizza, though I've had both in the past with no issues, and the owner of the pizza shop knows me and makes my pizzas himself to be on the safe side.
The reason i'm suspecting alcohol is that it's the only recurring theme in the 4 reactions I've had lately. The first meal was hard cider and a home-cooked burger, - possibly the bread could have been contaminated but other buns from that package were fine. The second meal was just some sangria and a home made salad. I suppose the greens could have touched some mushrooms at the store?
Celiac is a possibility, though I don't generally have other symptoms i've read about. Thank you for the idea, I'll do more reading about that.
Other than these 4 incidents, I haven't had a MAJOR reaction in several years, once we got my meds and triggers figured out. I've had strong reactions to things other than mushrooms in the past (melons, celery, banana, shellfish), but i've been able to successfully avoid those, and over the last i'd say 5 years, only mushrooms have triggered it (which sucks because I have friends and family tell me that you CAN'T be allergic to mushrooms). Mushrooms are everywhere.
Thanks for reading and responding.
Cross contamination IS possible, either in the beer or the pizza, though I've had both in the past with no issues, and the owner of the pizza shop knows me and makes my pizzas himself to be on the safe side.
The reason i'm suspecting alcohol is that it's the only recurring theme in the 4 reactions I've had lately. The first meal was hard cider and a home-cooked burger, - possibly the bread could have been contaminated but other buns from that package were fine. The second meal was just some sangria and a home made salad. I suppose the greens could have touched some mushrooms at the store?
Celiac is a possibility, though I don't generally have other symptoms i've read about. Thank you for the idea, I'll do more reading about that.
Other than these 4 incidents, I haven't had a MAJOR reaction in several years, once we got my meds and triggers figured out. I've had strong reactions to things other than mushrooms in the past (melons, celery, banana, shellfish), but i've been able to successfully avoid those, and over the last i'd say 5 years, only mushrooms have triggered it (which sucks because I have friends and family tell me that you CAN'T be allergic to mushrooms). Mushrooms are everywhere.
Thanks for reading and responding.
Posted by ninjaroll
- April 14, 2015, 12:33:30 PMCooking doesn't alter wheat for IgE-mediated allergies. And yes, we live with wheat/barley anaphylaxis. I'm not sure what you mean by uncooked wheat causing a reaction. No one eats uncooked wheat but if you're in an area like a bakery that agitation in the air is usually enough to trigger people anaphylactic to wheat/barley because it is agitated and can be ingested via inhalation.
It sounds like you were diagnosed as allergic to wheat based on a skin test alone although you eat it all the time. That's separate from your history of anaphylaxis. You just lack a history of anaphylaxis to wheat which would trump your test results.
Therefore, based on what you wrote I'd suspect a trace or cross contact with something you have a history of anaphylaxis to.
I don't think the alcohol idea is crazy, FWIW, some people can't digest it and some wine has high histamine. I'm on the fence whether that's a closed case. I think you have to food journal and go through some in office oral challenges with your allergist.
Although... I'm seriously wondering celiac. I'm not celiac but for me that would be serious enough to get the right diagnosis. Unfortunately you can have anaphylaxis and celiac at the same time. But celiac can be very dangerous and you'd need to do more than just cut out gluten you need good supportive medical care.
It sounds like you were diagnosed as allergic to wheat based on a skin test alone although you eat it all the time. That's separate from your history of anaphylaxis. You just lack a history of anaphylaxis to wheat which would trump your test results.
Therefore, based on what you wrote I'd suspect a trace or cross contact with something you have a history of anaphylaxis to.
I don't think the alcohol idea is crazy, FWIW, some people can't digest it and some wine has high histamine. I'm on the fence whether that's a closed case. I think you have to food journal and go through some in office oral challenges with your allergist.
Although... I'm seriously wondering celiac. I'm not celiac but for me that would be serious enough to get the right diagnosis. Unfortunately you can have anaphylaxis and celiac at the same time. But celiac can be very dangerous and you'd need to do more than just cut out gluten you need good supportive medical care.
Posted by ajasfolks2
- April 14, 2015, 12:21:26 PMHi & welcome!
I'd be wondering about the beer's ingredients as being the culprit -- wheat? Barley? Especially if you are allergic to wheat.
I'd be wondering about the beer's ingredients as being the culprit -- wheat? Barley? Especially if you are allergic to wheat.