Just curious. I have had a few anaphylactic episodes in the last year when I accidentally had lobster and dairy (throat closing, tongue swelling). Allergist says it's not allergy - more likely reflux - but I need to always carry an Epi-Pen and never eat the offending foods again (dairy and shellfish). I'm not sure how to move forward. My first reaction is to throw all my newly acquired Epi-Pens in a drawer and forget about it all. Hubby is not happy about that idea. I pride myself on being independent, managing my own health problems through diet and exercise and the idea of having to carry around a syringe feels over the top, especially when the skin test was negative and the allergist thinks I would be just dandy if I drank all the milk I wanted.
Do any of you have food allergies (anaphylaxis)?
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Humboldt-explorer
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Get a experienced acupuncture
Get a experienced acupuncture doctor. One that has a good reputation. Your body is out of balance, and acupuncture can help restore that. If your willing to follow the acupuncturist advice. This is the most natural way to resolve these types of things.
I'm been having skin rashes on my neck. I've been doing acupuncture for years. A few weeks ago I asked him about my rash. Witht he simple muscle testing they do he determined I was not tolerating wheat, and soy very well. I was eating alot of wheat as it is part of the igredients of many products. I have reduced my wheat intake, and the skin rash is dramitacally reduced. Not completely though since I have not eliminated wheat 100% yet.
Acupuncture works if you have the desire to follow their directions. Of course ya need the money for the visits as well. The ones that are good at it are amazing.
Get a experienced acupuncture doctor. One that has a good reputation. Your body is out of balance, and acupuncture can help restore that. If your willing to follow the acupuncturist advice. This is the most natural way to resolve these types of things.
I'm been having skin rashes on my neck. I've been doing acupuncture for years. A few weeks ago I asked him about my rash. Witht he simple muscle testing they do he determined I was not tolerating wheat, and soy very well. I was eating alot of wheat as it is part of the igredients of many products. I have reduced my wheat intake, and the skin rash is dramitacally reduced. Not completely though since I have not eliminated wheat 100% yet.
Acupuncture works if you have the desire to follow their directions. Of course ya need the money for the visits as well. The ones that are good at it are amazing.
Acupuncture is a really good
Acupuncture is a really good idea. I have no issues with never eating certain foods again - I have already eliminated all grains, dairy and most "crap" from my diet. I think you're right about this meaning my body is out of balance - I do think it's an allergy and not reflux (that "happens" to occur only when I accidentally eat shellfish or dairy) but I refuse to accept that an allergy is just a lifelong thing that is going to hang over my head.
We have a community acupuncture clinic in our neighborhood and I've had it before (I think it saved my life when I was prengant with my second - I was unable to eat or drink due to severe nausea until I got acupunture treatment). Since it's a community clinic it's very inexpensive (sliding scale).
Acupuncture is a really good idea. I have no issues with never eating certain foods again - I have already eliminated all grains, dairy and most "crap" from my diet. I think you're right about this meaning my body is out of balance - I do think it's an allergy and not reflux (that "happens" to occur only when I accidentally eat shellfish or dairy) but I refuse to accept that an allergy is just a lifelong thing that is going to hang over my head.
We have a community acupuncture clinic in our neighborhood and I've had it before (I think it saved my life when I was prengant with my second - I was unable to eat or drink due to severe nausea until I got acupunture treatment). Since it's a community clinic it's very inexpensive (sliding scale).
Consider a naturopath or
Consider a naturopath or homeopath. A complete workup might help clear up or minimize the cause of the reaction if your allergist is correct that it isn't an allergy (hard to believe it isn't though). A good friend of mine ate a salad that had been prepared in the same kitchen area as some shrimp had been cut up. She almost didn't make it.
I agree completely with you, the thought of carrying around a hypo goes against everything I believe in about taking care of myself. You could look at it this way though: if your husband had the reaction would you want him to carry the epi's?
Here's to no more anaphylactic shocks!
Sara
Consider a naturopath or homeopath. A complete workup might help clear up or minimize the cause of the reaction if your allergist is correct that it isn't an allergy (hard to believe it isn't though). A good friend of mine ate a salad that had been prepared in the same kitchen area as some shrimp had been cut up. She almost didn't make it.
I agree completely with you, the thought of carrying around a hypo goes against everything I believe in about taking care of myself. You could look at it this way though: if your husband had the reaction would you want him to carry the epi's?
Here's to no more anaphylactic shocks!
Sara
Oh Jschwab, why take a risk
Oh Jschwab, why take a risk until you know for sure? As you undoubtedly already know, the danger of anaphalaxis is that the blood pressure may drop severely enough to cause shock/death. By carrying the pen you are managing your health. It's just a new normal, sucky though it is.
Years ago, I was rushed to the ER in an ambulance after the medics couldn't find a pulse & I was losing consciousness following a 5k race. That was a very scary and expensive ride and I would have gladly stuck myself if it had been available at the time.
Be well.
Oh Jschwab, why take a risk until you know for sure? As you undoubtedly already know, the danger of anaphalaxis is that the blood pressure may drop severely enough to cause shock/death. By carrying the pen you are managing your health. It's just a new normal, sucky though it is.
Years ago, I was rushed to the ER in an ambulance after the medics couldn't find a pulse & I was losing consciousness following a 5k race. That was a very scary and expensive ride and I would have gladly stuck myself if it had been available at the time.
Be well.
Twinkletoes, what the heck
Twinkletoes, what the heck happened at that 5K? So scary! Do you exercise-induced anaphylaxis?
ajb, I get what you are saying, but the doc is saying there is no way in hell that I have a life-threatening allergy. I don't even know if I could continue to get Epi-Pens once the ones I have expire? The allergist trumps my primary, I think. I just feel like I have no way of ascertaining the risk of, say, getting coffee after a ten mile run or grabbing something at a place in the middle of a 14 miler where they serve shrimp. Doc is saying there is zero risk, so I feel dumb carrying around a pen and harrassing waiters, KWIM? I also feel like the pen itself poses some risk to my kids. I wish I knew someone else with a similar issue - the negative diagnosis all seems to hinge on absence of skin rash or hives and negative skin test. Everyone I know had very clear hivey reactions and positive skin tests. What the allergist was saying is even if I have throat closing and tongue swelling, that is not an allergy, so if I keep having just those same symptoms like if I did a food challenge, I'll never know for sure what Im dealing with. He is saying he does know for sure, 100% positive there is no risk. I do know I never, ever want to feel that way again, but if it doesn't warrant emergency treatment (Epi carries its own risks), it feels stupid to have it. I don't drive and I run alot to get places, so remembering to carry around the pen or finding a place for it is a nightmare.
Janine
ETA: Sorry for the long post, this thing is making me crazy.
Twinkletoes, what the heck happened at that 5K? So scary! Do you exercise-induced anaphylaxis?
ajb, I get what you are saying, but the doc is saying there is no way in hell that I have a life-threatening allergy. I don't even know if I could continue to get Epi-Pens once the ones I have expire? The allergist trumps my primary, I think. I just feel like I have no way of ascertaining the risk of, say, getting coffee after a ten mile run or grabbing something at a place in the middle of a 14 miler where they serve shrimp. Doc is saying there is zero risk, so I feel dumb carrying around a pen and harrassing waiters, KWIM? I also feel like the pen itself poses some risk to my kids. I wish I knew someone else with a similar issue - the negative diagnosis all seems to hinge on absence of skin rash or hives and negative skin test. Everyone I know had very clear hivey reactions and positive skin tests. What the allergist was saying is even if I have throat closing and tongue swelling, that is not an allergy, so if I keep having just those same symptoms like if I did a food challenge, I'll never know for sure what Im dealing with. He is saying he does know for sure, 100% positive there is no risk. I do know I never, ever want to feel that way again, but if it doesn't warrant emergency treatment (Epi carries its own risks), it feels stupid to have it. I don't drive and I run alot to get places, so remembering to carry around the pen or finding a place for it is a nightmare.
Janine
ETA: Sorry for the long post, this thing is making me crazy.
What about going and getting
What about going and getting a second opinion from a different allergist just to be sure?
I had a friend once who was told as a child she couldn't have any wheat or soy due to severe allergies and avoided it until her 20s. A different allergist ran a different set of tests told her the previous one was wrong and she could eat all of it that she wanted. She did and has been fine.
If the allergist is telling you that you can eat or drink all the dairy/shellfish you want would he be willing to let you bring in a glass of milk and some shellfish sit down in his office and ingest it? That would be the real test of if you should completely avoid it and the would be able to treat you right away so the danger is minimized.
What about going and getting a second opinion from a different allergist just to be sure?
I had a friend once who was told as a child she couldn't have any wheat or soy due to severe allergies and avoided it until her 20s. A different allergist ran a different set of tests told her the previous one was wrong and she could eat all of it that she wanted. She did and has been fine.
If the allergist is telling you that you can eat or drink all the dairy/shellfish you want would he be willing to let you bring in a glass of milk and some shellfish sit down in his office and ingest it? That would be the real test of if you should completely avoid it and the would be able to treat you right away so the danger is minimized.
You "accidentally" ate
You "accidentally" ate lobster?!?! Were you in Maine or something?
Yes, jschwab - you can get a renewal on the Epi-Pen.
I have anaphylaxis from kiwi. I ate a dozen when I was about 4 months pregnant, and went into anaphylactic shock. It was awful, awful, awful.
You "accidentally" ate lobster?!?! Were you in Maine or something?
Yes, jschwab - you can get a renewal on the Epi-Pen.
I have anaphylaxis from kiwi. I ate a dozen when I was about 4 months pregnant, and went into anaphylactic shock. It was awful, awful, awful.
Insurance only pays for
Insurance only pays for second opinions for things like surgery - it seems to be standard medical advice that if the skin test is negative, there is no allergy, so I'm not sure another allergist would have another explanation. I can do a food challenge at his office, or I can do one myself which I plan to do at home - no sense wasting insurance dollars just to eat in a doctor's office.
I accidentally
ate the lobster because, while I had reacted to shrimp twice (and managed my reaction with Benadryl - the second time was totally because I was in denial), I figured I was probably just allergic to shrimp. I ate a lobster tail and ten minutes later, I could barely breathe, but with none of the other anaphylaxis symptoms except flushing. It passed quickly and I took Benadryl. I have not had any shellfish since. I gave up dairy because I was getting stomach cramping. A few months after, I accidentally sampled gelato that I thought was sorbetto and the same thing happened as with the lobster. It's never progressed to being really bad like ER-bad, just scary. I've reacted twice in restaurants where I suspected dairy cross contamination - that's why I visited the doctor, to see if dairy was definitely a problem. And he said neither were a problem and it must be something else.
Insurance only pays for second opinions for things like surgery - it seems to be standard medical advice that if the skin test is negative, there is no allergy, so I'm not sure another allergist would have another explanation. I can do a food challenge at his office, or I can do one myself which I plan to do at home - no sense wasting insurance dollars just to eat in a doctor's office.
I accidentally
ate the lobster because, while I had reacted to shrimp twice (and managed my reaction with Benadryl - the second time was totally because I was in denial), I figured I was probably just allergic to shrimp. I ate a lobster tail and ten minutes later, I could barely breathe, but with none of the other anaphylaxis symptoms except flushing. It passed quickly and I took Benadryl. I have not had any shellfish since. I gave up dairy because I was getting stomach cramping. A few months after, I accidentally sampled gelato that I thought was sorbetto and the same thing happened as with the lobster. It's never progressed to being really bad like ER-bad, just scary. I've reacted twice in restaurants where I suspected dairy cross contamination - that's why I visited the doctor, to see if dairy was definitely a problem. And he said neither were a problem and it must be something else.I accidentally ate the whole
I accidentally ate the whole container of gelato. I musta fallen mouth-first into the freezer.
I never had the prick-test for the kiwi anaphylaxis. Sorry I can't be of more help on that. I carried the epi-pen around for a while, but let it expire. The kiwis sing to me from the supermarket aisle, but I don't listen. I haven't had any kiwi accidents that I'm aware of, and I've never had hives and breathing difficulties again.
I accidentally ate the whole container of gelato. I musta fallen mouth-first into the freezer.
I never had the prick-test for the kiwi anaphylaxis. Sorry I can't be of more help on that. I carried the epi-pen around for a while, but let it expire. The kiwis sing to me from the supermarket aisle, but I don't listen. I haven't had any kiwi accidents that I'm aware of, and I've never had hives and breathing difficulties again.
SillyC wrote:I accidentally
A dozen kiwis? Wow. The dairy freaks me out - it was literally a smidge, just one of those little plastic sample spoons. I'll be plowing into the sorbetto later tonight.
SillyC said:I accidentally ate the whole container of gelato. I musta fallen mouth-first into the freezer.
I never had the prick-test for the kiwi anaphylaxis. Sorry I can't be of more help on that. I carried the epi-pen around for a while, but let it expire. The kiwis sing to me from the supermarket aisle, but I don't listen. I haven't had any kiwi accidents that I'm aware of, and I've never had hives and breathing difficulties again.
A dozen kiwis? Wow. The dairy freaks me out - it was literally a smidge, just one of those little plastic sample spoons. I'll be plowing into the sorbetto later tonight.
Peanut
Guest
Jscwhab - I worked as a
Jscwhab -
I worked as a paramedic and worked in the ER for a number of years. I have personally had to intubate, inject and start lines on people with severe allergic reactions. It's not a pretty site and it is horrid for them and their family to go through. Some have not been lucky enough to live to tell about it.
I will say what others have said, CARRY THE EPI PEN and MAKE SURE THOSE YOU ARE WITH KNOW WHERE IT IS AND THAT YOU HAVE IT ON YOU . It's no good to you if some one can't find it and you are unable to speak to tell them
GET A MEDICAL EMERGENCY BRACELET. This is another item that speaks for you when you cannot speak for yourself.
If at some time you find the reaction was not due to the food - make sure you DO find out what caused it. Until then
YOUR LIFE IS FAR TO PRECIOUS to not carry something that will save it. Your family will thank you.
Also, if you don't have issues with benedryl carry that, too!
Remember that everytime you have a severe reaction like this the next has the probability of being more severe.
I am not telling you all this to scare the crap out of you but out of respect for your life and your family.
Sending you blessing, Peanut
Jscwhab -
I worked as a paramedic and worked in the ER for a number of years. I have personally had to intubate, inject and start lines on people with severe allergic reactions. It's not a pretty site and it is horrid for them and their family to go through. Some have not been lucky enough to live to tell about it.
I will say what others have said, CARRY THE EPI PEN and MAKE SURE THOSE YOU ARE WITH KNOW WHERE IT IS AND THAT YOU HAVE IT ON YOU . It's no good to you if some one can't find it and you are unable to speak to tell them
GET A MEDICAL EMERGENCY BRACELET. This is another item that speaks for you when you cannot speak for yourself.
If at some time you find the reaction was not due to the food - make sure you DO find out what caused it. Until then
YOUR LIFE IS FAR TO PRECIOUS to not carry something that will save it. Your family will thank you.
Also, if you don't have issues with benedryl carry that, too!
Remember that everytime you have a severe reaction like this the next has the probability of being more severe.
I am not telling you all this to scare the crap out of you but out of respect for your life and your family.
Sending you blessing, Peanut
Awww, Peanut, I thought you
Awww, Peanut, I thought you of all people would have some mystical advice about how to overcome this another way besides panicking. I keep reading and I can't tell from my readings - between that and what the doc told me- if this is even an allergy at all. I can't imagine what else it would be but I can't find anything that would tell me if I have to be ridicuously careful or not. If it's not IgE mediated (true allergy) as the skin test indicated it wasn't, then it seems there is just about zero risk of actual sudden death even if I don't carry around the pen and am exposed? I guess I just need more information so I can assess the real risk - I just can't find anything reliable. The way the doctor told it, a reaction in the absence of skin hives is not a reaction at all. It seems clear to me now that my chance of getting hit by a truck is about 50,000x more likely than dying of anaphylactic shock. That would change if I had different information, but what I know now points to very low risk.
Awww, Peanut, I thought you of all people would have some mystical advice about how to overcome this another way besides panicking
. I keep reading and I can't tell from my readings - between that and what the doc told me- if this is even an allergy at all. I can't imagine what else it would be but I can't find anything that would tell me if I have to be ridicuously careful or not. If it's not IgE mediated (true allergy) as the skin test indicated it wasn't, then it seems there is just about zero risk of actual sudden death even if I don't carry around the pen and am exposed? I guess I just need more information so I can assess the real risk - I just can't find anything reliable. The way the doctor told it, a reaction in the absence of skin hives is not a reaction at all. It seems clear to me now that my chance of getting hit by a truck is about 50,000x more likely than dying of anaphylactic shock. That would change if I had different information, but what I know now points to very low risk.low risk, maybe, but such a
low risk, maybe, but such a high cost... so I have to echo all the calls to carry the Epi.
I do think that for something of this magnitude, it is worth the hassle to nag doctors until you find out everything you can about what's going on. Did the allergist do a skin test for other possible allergens, or just the ones you suspected? Is it possible to be allergic to a metabolite of dairy or seafood (one of the chemical substances the body breaks it down into)? I mean, could you have the IgE response when you eat something, but not when it's skin-tested?
Peanut's suggestion of an emergency ID bracelet is a good one (I think everyone should have something like RoadID, and a homemade version is practically free).
low risk, maybe, but such a high cost... so I have to echo all the calls to carry the Epi.
I do think that for something of this magnitude, it is worth the hassle to nag doctors until you find out everything you can about what's going on. Did the allergist do a skin test for other possible allergens, or just the ones you suspected? Is it possible to be allergic to a metabolite of dairy or seafood (one of the chemical substances the body breaks it down into)? I mean, could you have the IgE response when you eat something, but not when it's skin-tested?
Peanut's suggestion of an emergency ID bracelet is a good one (I think everyone should have something like RoadID, and a homemade version is practically free).
That's what everyone says -
That's what everyone says - just carry it. And they also say just because on the skin it doesn't show doesn't mean it doesn't create a response in your body but I have not found anything that says there is anything but a very low rate for false negatives with the skin testing. I don't think blood testing would be useful since I have not eaten either (knowingly) in months. I think the absence of hives is what it seems to hang on - without hives it is not considered a dangerous reaction and likely something else. Everyone I know who is allergic and keeps an Epi-Pen has a skin reaction - I haven't encountered anyone with just the throat closing.
That's what everyone says - just carry it. And they also say just because on the skin it doesn't show doesn't mean it doesn't create a response in your body but I have not found anything that says there is anything but a very low rate for false negatives with the skin testing. I don't think blood testing would be useful since I have not eaten either (knowingly) in months. I think the absence of hives is what it seems to hang on - without hives it is not considered a dangerous reaction and likely something else. Everyone I know who is allergic and keeps an Epi-Pen has a skin reaction - I haven't encountered anyone with just the throat closing.
Peanut
Guest
Well, I am truly HONORED
Well, I am truly HONORED that you thought I would be purely mystical. Gee, gosh thanks.
I am truly that but I do work to be energetically balanced so I certainly have my practical side, too.
If there were a Yin Tang smiley I would place one here! giggle.
I believe we are on this earth plane to learn and sometimes those lessons hit us smack between the eyes ( or swell right up in our throats, if you will).
My husband says that the Universe is kind of like a great big vending machine. You look at all the things you want and put your money in. But, if you close your eyes and push any random button you might not get what you want.
So, the thought is = pay attention to what the Universe presents and act accordingly.
May you and your family be blessed with peace, love and true wisdom in this lifetime. That's my wish for us all really.
I send you the blessing of Reiki energy.
Peanut
Well, I am truly HONORED that you thought I would be purely mystical. Gee, gosh thanks.
I am truly that but I do work to be energetically balanced so I certainly have my practical side, too.
If there were a Yin Tang smiley I would place one here! giggle.
I believe we are on this earth plane to learn and sometimes those lessons hit us smack between the eyes ( or swell right up in our throats, if you will).
My husband says that the Universe is kind of like a great big vending machine. You look at all the things you want and put your money in. But, if you close your eyes and push any random button you might not get what you want.
So, the thought is = pay attention to what the Universe presents and act accordingly.
May you and your family be blessed with peace, love and true wisdom in this lifetime. That's my wish for us all really.
I send you the blessing of Reiki energy.
Peanut
jscwab, what your going
jscwab,
what your going through sucks. i can't relate at all. i don't eat dairy unless it's a snickers or something. i don't react, i just get mucusy.
if i were you i would try some deep inner cleanses before you attempted to eat those foods again. there are many effective ways you can do them. one cheap way i know is using baking soda which i've posted about before.
mike
oh yes, happy new year
jscwab,
what your going through sucks. i can't relate at all. i don't eat dairy unless it's a snickers or something. i don't react, i just get mucusy.
if i were you i would try some deep inner cleanses before you attempted to eat those foods again. there are many effective ways you can do them. one cheap way i know is using baking soda which i've posted about before.
mike
oh yes, happy new year
A few things to add... 1) I
A few things to add...
1) I had a serious allergy-like reaction years ago to fish (swollen face and eye). Negative skin test at the allergist. I carried an epi-pen for a few years, just in case, but continued to eat fish without a problem. I've since learned that some toxins that can be found in fish can produce an allergic-like reaction, though it is not a true allergy (histamine response) and I suspect that's what happened to me. After a few years without a problem I quit carrying the pen, but it was worth having it with me just in case.
2) My daughter (age 9) has a confirmed serious peanut allergy and she used to have an egg allergy to which she once had an anaphylactic reaction but eventually outgrew (thank goodness!). We always carry an epi-pen for her. Yesterday we went to Busch Gardens and for the first time I put the burden of carrying her epi-pen at the park on her (DH and I have always carried one with us). I put the pen, a dose of fast-melt benadryl and emergency contact info in my amphipod expandable waist pouch and had her wear it. She found it so comfortable to wear that she easily forgot it was there. It might be something for you to consider as a convenient carry option.
http://www.rei.com/product/798346
Best Wishes!
Peace,
Karen
A few things to add...
1) I had a serious allergy-like reaction years ago to fish (swollen face and eye). Negative skin test at the allergist. I carried an epi-pen for a few years, just in case, but continued to eat fish without a problem. I've since learned that some toxins that can be found in fish can produce an allergic-like reaction, though it is not a true allergy (histamine response) and I suspect that's what happened to me. After a few years without a problem I quit carrying the pen, but it was worth having it with me just in case.
2) My daughter (age 9) has a confirmed serious peanut allergy and she used to have an egg allergy to which she once had an anaphylactic reaction but eventually outgrew (thank goodness!). We always carry an epi-pen for her. Yesterday we went to Busch Gardens and for the first time I put the burden of carrying her epi-pen at the park on her (DH and I have always carried one with us). I put the pen, a dose of fast-melt benadryl and emergency contact info in my amphipod expandable waist pouch and had her wear it. She found it so comfortable to wear that she easily forgot it was there. It might be something for you to consider as a convenient carry option.
http://www.rei.com/product/798346
Best Wishes!
Peace,
Karen
I've heard of that fish thing
I've heard of that fish thing - good that you were able to continue to eat fish. Good for your daughter for carrying her own pen! I don't intend to ever try eating these things again (except for my challenge which I need to work up the nerve for). Shellfish I feel comfoartable with just avoidance, but dairy is harder. I had a bad reaction after having food cooked together (same spatula) with my kids food that had cheese on it. That is why I am so intent on really knowing. I can't carry and Epi-Pen everywhere, but I need to know how careful I have to be. I think it's crazy that the allergist is saying there is zero chance I have an allergy biut I should carry an Epi at all times - dosn't he realize that it's critical to really know?
I've heard of that fish thing - good that you were able to continue to eat fish. Good for your daughter for carrying her own pen! I don't intend to ever try eating these things again (except for my challenge which I need to work up the nerve for). Shellfish I feel comfoartable with just avoidance, but dairy is harder. I had a bad reaction after having food cooked together (same spatula) with my kids food that had cheese on it. That is why I am so intent on really knowing. I can't carry and Epi-Pen everywhere, but I need to know how careful I have to be. I think it's crazy that the allergist is saying there is zero chance I have an allergy biut I should carry an Epi at all times - dosn't he realize that it's critical to really know?
