Ready to lose my mind!!!!!!

[jenavy21]

I know I have been a bit quiet lately, but was really busy with my sons lego party.  I have been as strict as you can be when it comes to eating and doing significantly better!!  Which is great!!   I have been able to come off the daily allergy pill with little incident and already finished the course of prednisone.  So I started trying to reduce the prevacid that they had me on to block H2 and as soon as I stopped the night dose (was still taking morning) I started getting hives at night.  I have been getting horribly itchy bumps on my scalp and on my back, take benadryl and they get better,  Well one on my arm started to get really sore so I went to primary, put me on an antibiotic and he saw the rash as well and suggested I put a call back into the allergist to see if anything has come back where they can point me in right direction.   So they call back today and evidently they have had results back for quite some time.  This is where the FUN starts!!!

Quick background...
-anaphylactic reaction and hospital trip was on Jan 23rd around 3Pm given Epi, put on prednisone and prevacid and daily meds. neb inhaler etc
-Primary Dr draws RAST panel morning of 24th about 15 hrs after initial reaction
-Allergist draws panel on Jan 29th still on prednisone and everything else and several bad reactions at this point.

Today.....
Nurse tells me all foods negative on RAST except pineapple (is funny)
I ask her specifically about peanut since that is my biggest problem.  She tells me peanut is negative and according to panel no reason I shouldn't be able to eat it.  I tell her if I was to get a snickers and take a bite i would be at the hospital before I could even chew it.  She responds then don't eat it.  So I ask her what I am supposed to do with results and she says up to me if I want to come see him (implies appointment is pointless and that I have no food allergies).  I ask her why the RAST done by primary right after reaction would show it positive and theirs would be negative, can't answer and tells me that basically their test is saying no allergy...

So I call back ask dr to call me.  He does and I explain what has been going on.  He says night reactions sound not food related and I agree.  He says sound like you are not having a problem with food anymore then.  I explain to him that is only because of how strict I am with what is being prepared and the things we are talking about I am avoiding at all cost.   I tell him about the other blood test and he says to bring with me so he can compare and he can explain then what he is thinking.   He reiterated environmental allergies off the chart.  I laughed and told him we already knew that and told him that (I have had 2 sinus surgeries), but at first appt he told me that it didn't seem like environmental allergies playing a role.   Now saying stay on all meds until I see him and we can go from there.   I asked him then if the meds and reaction being within a week could affect testing and he said not unless reaction was wide spread hives etc...... 

BUT my throat had closed, wouldn't that cause same problem?? 

I am so FRUSTRATED!!!!   He took 17 vials of blood......    And now testing basically means nothing!!!  We know peanut is a problem and that has been diagnosed and proven by doctors before him (board certified).  I know environmental might be playing a role but I also know what happens if I eat those things I am avoiding.........   He doesn't understand our environment where we are living.  When I say birds I don't mean one or two I mean breeders when I say horses I mean close to 20.  We are on 5 acres of land and animals are everywhere!!!  On top of that they never even tested for birds or horses, but cats and dogs are off the chart (already knew that!!!).

So now I am having to drive to another far office to listen to him tell me what he is thinking now which based on our phone conversation I can already guess it.  I am no where close to figuring out an answer and MISERABLE!!!!

All I can think of doing is taking pictures of this place to show him with bringing results.  I am half tempted to bring a reese's cup with me and say if you are saying this is safe then watch what will happen.  I am ready to scream and just don't know how much more I can take of this!!!!!!

[CMdeux]

I agree-- keep your food journal, if you have a tablet that you can bring with you that you can SHOW him pictures of what you're living with-- do that.

And ask him to offer you challenges if he's that sure that your results are truly negative (and not just bizarre).

{hugs}  I'm really really bummed that all of this trouble and time haven't given you a better roadmap. 

DO be willing to explore seeing a different allergist if this one is going to BOTH blow you off and tell you that this is all in your head without even conducting challenges. 

If you're OPEN to doing some challenges for things that you think are "probably" okay, but which you've been avoiding?  I'd say that.  But make it clear that you are not okay doing this as a DIY project.  No way, no how-- not after that reaction in Jan.

[CMdeux]

As for blood draws for RAST within days of a major anaphylaxis event, if anything, it should elevate IgE values temporarily (weeks, usually), but nobody is completely sure on that score.  That's mostly based on anecdote. 

There are quite a few people, though, whose RAST scores to anaphylaxis triggers are low-- low enough that in the absence of that history, they'd be considered "not possibly allergic."

But RAST levels have, like skin prick testing, a small but known rate of producing falsely NEGATIVE results.  My DD skin tested negative for milk, when we could PROVE she was reactive within 20 minutes of ingestion-- with facial hives and lip swelling.  He just had to shrug-- it was very clear that he didn't know, any more than we did. 

Do give your allergist a little slack here-- he DOES probably encounter a lot of people that think they have severe food or drug allergies and do not when he tests (and/or challenges) them.  Given the data at hand, he's right to be confused.  He's just wrong if he abandons you or blows you off in his frustration.



Is it possible that what you experienced was a reaction triggering by oral allergy syndrome cross-reactivity?  Of course it is-- there's no bright dividing line between "harmless OAS" and "systemic reaction to a food that my immune system thought was an (evil) pollen."

Might be something to tuck into your back pocket and ASK about anyway.

[jenavy21]

My husband told me to start looking around in the morning for a second opinion, but to give him this appt on Thursday to see what he says.  The nurse today is what blew my mind when she told me that there was no reason to avoid peanuts.   What I don't think they understand is I LOVE peanut butter and miss what I remember it tasting like.  But have no desire to eat it.  I would give anything to be able to eat a regular chocolate bar.......   I don't think he was expecting the other test to be different from his and it sounded like that threw him a bit.

I think where he is going with it is the oral allergy syndrome line.....  Which I am open to any possibility.  The only thing I can tell you without a doubt is that I have had severe reactions to peanuts that were unknown to me with and without ingesting.  Neighbors were deep frying turkey in peanut oil (couple years ago).  We didn't know.  Opened door to let dog out and opened again to let him back in and started reacting.  Found out after they were frying the turkey.  My daughter drank off my water bottle and had a granola bar with peanut butter
that she was given from school and when I took a sip throat closed again a couple years ago. 

[jenavy21]

And I am very willing to do food challenges if needed.  Although it kind of feels like it is being done to prove a point in a sense.  I hate the unknown and hate not getting immediate answers.  The constant waiting game is not one that I like to play I really would like to know what the problem is so I can make sure it is avoided 100%. 

[lakeswimr]

I would get very clear on what your questions are and what you want of the next allergist you see.  From reading your post I am not sure what your questions are at this point.  I think what you are wondering is what is causing your current symptoms.  Is there anything else in particular you are wanting to know?  The clearer I am with what I want to know from my son's allergist the better things go.

What is a dairy allergy pill?

Hives at night could be from body temp.  Are you warmer or colder at night than in the day?  Are the hives all over or only on part of your body?

As others said, testing is not 100% accurate.  It is about 90% accurate for negative results meaning you can test negative and be allergic.  If you know you react to peanuts you should avoid.  I would convince the allergist about this by describing past reactions.  Are there for sure reactions you can describe?  Reaction history is a big part of diagnosing food allergies. 

What did you eat in the two hours before the January anaphylaxis?  What did you eat in the 2 hours before the other reactions you had since then?  What were your symptoms in the other reactions?   Depending on the symptoms and timing you can figure out if these were likely caused by food or not. 

I have very severe allergies to some animals and many of the symptoms I have cross over to food allergy symptoms but I don't have food allergies.  In people like my son who have both it can be tricky to figure out what is the cause sometimes.  A good allergist will help you do this, though.

Are you worried that you still have some yet undiagnosed food allergies?  That is a real concern the allergist should take seriously. 

[SilverLining]

What is a dairy allergy pill?

Daily, not dairy.

[Janelle205]

I don't know if this is helpful, because it is purely anecdotal, but thought I would share.

I have had crazy environmental allergies pretty much my entire life.  React to almost everything on an environmental test since I was small.  Over 7 years of allergy shots, during which my maintenance dose (which obviously never really got to 'maintenance') had to constantly change because of scary reactions where my blood pressure would drop.

I did not have much of a problem with food allergies aside from OAS until I was older.  Most of my food allergies happened after I started working with birds (specifically birds of prey, in my case) occupationally.  At the time I started working with them, I was not allergic to birds (I am now).  I also did not have as many food allergy problems.  There was a ton of irritant involved in this work (which I loved), and I can't help but sometimes think that maybe that was the tipping point - feathers, dust, exposure to rodents (for feeding), cleaning out the large cages and travel cages, driving for hours with an owl on a perch strapped in to the front seat of my car.

[LinksEtc]

Nurse tells me all foods negative on RAST except pineapple (is funny)
I ask her specifically about peanut since that is my biggest problem.  She tells me peanut is negative and according to panel no reason I shouldn't be able to eat it.  I tell her if I was to get a snickers and take a bite i would be at the hospital before I could even chew it.  She responds then don't eat it.  So I ask her what I am supposed to do with results and she says up to me if I want to come see him (implies appointment is pointless and that I have no food allergies).  I ask her why the RAST done by primary right after reaction would show it positive and theirs would be negative, can't answer and tells me that basically their test is saying no allergy...

So I call back ask dr to call me.  He does and I explain what has been going on.  He says night reactions sound not food related and I agree.  He says sound like you are not having a problem with food anymore then.  I explain to him that is only because of how strict I am with what is being prepared and the things we are talking about I am avoiding at all cost.   I tell him about the other blood test and he says to bring with me so he can compare and he can explain then what he is thinking.   He reiterated environmental allergies off the chart.  I laughed and told him we already knew that and told him that (I have had 2 sinus surgeries), but at first appt he told me that it didn't seem like environmental allergies playing a role.   Now saying stay on all meds until I see him and we can go from there.   I asked him then if the meds and reaction being within a week could affect testing and he said not unless reaction was wide spread hives etc...... 

BUT my throat had closed, wouldn't that cause same problem?? 

I am so FRUSTRATED!!!!   He took 17 vials of blood......    And now testing basically means nothing!!!  We know peanut is a problem and that has been diagnosed and proven by doctors before him (board certified).  I know environmental might be playing a role but I also know what happens if I eat those things I am avoiding.........   He doesn't understand our environment where we are living.  When I say birds I don't mean one or two I mean breeders when I say horses I mean close to 20.  We are on 5 acres of land and animals are everywhere!!!  On top of that they never even tested for birds or horses, but cats and dogs are off the chart (already knew that!!!).

So now I am having to drive to another far office to listen to him tell me what he is thinking now which based on our phone conversation I can already guess it.  I am no where close to figuring out an answer and MISERABLE!!!!

All I can think of doing is taking pictures of this place to show him with bringing results.  I am half tempted to bring a reese's cup with me and say if you are saying this is safe then watch what will happen.  I am ready to scream and just don't know how much more I can take of this!!!!!!

I'm sorry that you are going through all of this ... sounds like a very stressful situation.

Having the allergist's office tell you that you should be able to eat peanut based on the blood test makes me very uneasy.  As others have mentioned, there are false negative RAST results.  Whether you react to the food when eaten trumps all allergy tests.  For a long time, my dd had negative RASTs while having hugely positive SPTs (along with rxn history) ... several very good allergists would not even do a food challenge for her because they felt that it was too risky.  It sounds like you are going to continue to avoid which seems wise.

My husband told me to start looking around in the morning for a second opinion, but to give him this appt on Thursday to see what he says.  The nurse today is what blew my mind when she told me that there was no reason to avoid peanuts.   

I am inclined to agree with your dh.  If you do decide to get a second opinion, we might be able to make some suggestions.

I would think that after the Thursday appt, you will have a better idea of what to do.

[jenavy21]

Thanks everyone!!  I am just so frustrated.

Silver, the 1 January reaction has us stumped as I had not eaten anything all day,actions have been itchy and tingling in mouth, tight throat, tight chest, barky cough, then feel like can't cough, tons of pressure in head and dizziness and can't think straight, voice gets very hoarse and depending on if reaction doesn't stop I lose it with swelling in throat.   The rest of the bad reactions could be narrowed down to exposures.  All re  But I had gone out by the animals where there is peanuts and soy.  I guess my biggest question is why reactions have picked up so much, which I am fairly certain has to do with where we live and how I can help prevent it.  Every reaction I have had while eating has happened within the first few bites so about 5 to 10 minutes depending on if I am talking to someone (I am pretty social). 

Janelle, that is very interesting!!  Things have gotten much worse since coming here and being around all of the birds!!

Links, Thursday will tell me a lot, but it really feels like it is a waist of my time.  And I just don't have a lot of it. 

[lakeswimr]

The reaction you describe with the itchy, tingling mouth, tight throat, tight chest, barky cough, pressure in chest, can't think straight, and horse voice is almost a list of all the symptoms of anaphylaxis and absolutely a reason to epi yourself. 

People can die from reactions like that.  I'm very sorry.  I'm not trying to scare you but I want you to take those reactions very seriously.

You are saying those happened when you did not eat anything all day but had gone by the animals where there are peanuts and soy.  So, it could be that the animal feed got airborne from being stepped on and eaten by the animals and you inhaled enough to cause a reaction.  Can you steer clear of the animal area? 

Reactions depend on exposure and the amount of exposure.  So, if you eliminate exposure you eliminate reactions. 

I think you said you are going to move in the future.  I hope you are able to move soon.  Is there a place you could stay temporarily? 

Are people in your home walking through the animal area and perhaps getting animal feed on their shoes and tracking this inside the house?  Are they able to temporarily (until you move) switch to a different type of peanut-free feed?

Did the allergist tell you were were not allergic to peanuts based on test results or the nurse?  If it was just the nurse that's quite different.  It shouldn't be but it isn't that unusual for nurses to not be as up on things as allergists.  good luck at the appointment.

I'd push for a clear written plan of when to epi and explain the recent reactions.

[momma2boys]

I don't blame you for being frustrated!  I would NOT listen to the nurse about eating peanuts. Hopefully you get some answers Thursday.

[jenavy21]

Lakes,

I know what you are saying about reactions, I have had many tell me the same thing and have really tried to get over fear of using Epi pen.  I know in past I have lucked out too many times. 

My parents have actually changed seed for the birds in their house (macaw and 2 african greys that are pets) to avoid peanut.  I have also been staying out of their house, we are in the pool house.  It's a hard property to explain.  lol   We are pretty certain what happened that day absolutely has to do with their feed.  Not sure what the allergist is thinking, but that is what we are all assuming.  It makes the most sense and really fits with everything.  I am no longer giving horses cookies etc, or helping to feed any of them.  My kids like to play outside by horses etc.  BUT we have them in a routine now to take shoes off and keep in one spot when they come in.  I am also being extremely careful with food preparations and things are improving drastically on the ingested food reaction side.  We also have 4 hepa filters on in the house that help tremendously.  I do believe when hives are happening that it has to do with what is in the air around me.  I am going to take pictures with me so he understand what I am trying to explain in hopes he gets the whole picture.  We will see what happens on Thursday.  But I have had many recommendations for another clinic so they will be my second opinion if needed. 

It seems like the food stuff is semi under control by how I am eating and avoiding environmental exposure.  I take pepcid twice a day for Histamine 2 blockers and was taking zyrtec daily for histamine 1 blocker and benadryl as needed.  I am off the Zyrtec and manage with slight irritation and itchy skin etc during the day.  Typically I feel much better not on the property, but even when I am here I am ok.  When I try to reduce the pepcid to once a day, I just can't do it then the itchiness becomes rash and hives. 

The nurse is the one who made the comment that said there is no indication I should avoid any foods.  When I asked about peanut she said it was negative with zero reaction and based on that didn't need to be avoided.  When I made the comment about what would happen if I tried then she retracted and said then don't do it. 

Allergist said he wants to see the other lab test to compare it and then we can go from there.  But followed it with that he thinks I am describing environmental problems and food reactions have stopped.  That is when I said that is because I am not eating any of it or having and possible contamination because of ......   blah blah blah.  Then he said when I come in on Thursday he will let me know what he is thinking.  He did say in the office the first time that inhaled peanut reactions were not common and he thought something else could be playing a role.  I explained to him then that I have had easily a half dozen or so reactions that were in fact inhaled peanut and that they were not all things that I smelled and recognized the smell as nuts.  He didn't say much.    I am starting to think that he deals primarily with environmental allergies even though they say he deals with both. 

I guess Thursday will let us know what to do. 

[CMdeux]

The kind of sensitivity that results in reactions to aerosolized pn is unusual-- so he's not terribly off-target there.

I agree with the others to ignore the nurse for now-- she may just not know.  If the allergist is properly concerned about the severity of your reactions, etc. then that is still a good sign.  One can anaphylax from any allergy trigger, not just food, so it's possible that this IS a matter of completely over-the-top sensitivity generated by a recent anaphylactic reaction.

Is the purpose of getting off the Zyrtec so that you can (eventually) schedule to do skin tests?

If that doesn't look feasible, can your doc keep you on the zyrtec?  Or maybe even switch you over to allegra?  Both of those have pretty good efficacy against chronic hives, and it's possible that you need the supportive therapy to keep things under control-- for now.

[lakeswimr]

It is very rare to have an airborne reaction to food.  However, it can happen in airplanes when a plane load of people open those little bags of nuts at roughly the same time and the air is circulated in the cabin.  It won't happen to every peanut allergic person but to some in that situation.  It can happen when allergens are heated.  It can also happen when allergens are agitated.  If a what allergic person is around a bag of flour being opened, enough flour can get into the air to cause a reaction.  I imagine in a place like where you live, animal feed could get agitated and airborne and be a problem.  I think you will have to describe the environment to the allergist so he can understand how you are possibly getting exposed. 

Also, I wonder if people were previously taking off their shoes.  If not, then you were in homes that were getting coated in animal feed dust all over.  People sit on the floor sometimes, put bags on the floor and later on a chair maybe or even a counter, etc.  Touch something on the floor and then touch a door or a counter, etc.  So, you could have had loads of peanut dust all over your parents home and yours.  There is no safe bird seed as far as I know.  Even if a bird seed doesn't actually contain peanuts, most may have xcontam with them.

If you read more about anaphylaxis you will become less scared of the epi and more afraid of NOT using it.  It is not a scary thing.  It relieves symptoms right away for most people.  It worked in a few seconds on my son.  Amazing drug. 

Best wishes.