Looking for some Help and guidance!!

[jenavy21]

Hi Everyone,
I am new to this board and trying to wrap my head around everything still.  Quick back ground.....

Roughly 3 years ago while eating asian cuisine (had same meal from same place 3 days prior) I broke out around my mouth, chest tightened, started wheezing, and throat tightened.  Took children's liquid Benadryl and all was better.

Went to Primary care tested me for several things that came back positive on blood.  At that time it was just soy and sesame.  Then craved peanut butter for 6 days straight eating daily, 7th day throat starts tightening etc...

Found out by blood positive for peanuts.  Given epi from allergist.  Since then I have had tons of reactions.  Many of which prob should have used epi but I am afraid of it, as silly as it sounds.  Then after having my infant son he was around 8 months they did skin test.  All environmental allergens (have some bad ones) positive, all food negative.  Allergist told me you have to be reaction free for greater than 6 weeks or results aren't accurate.  THat doesn't happen for me, always having smaller reactions....  Also said because son was still so young and I was nursing could interfere with the tests.

Fast forward...  Son is now 14 months (nurses at night trying to ween him).   About 6 days ago, my mom of all people got into my car with a small handful of these asian crackers.  I started feeling off....  Slightly confused start getting the bronchitis like cough and throat tightens.   Turns out her snack was filled with sesame peanuts and soy, even though she never touched me and finished within a couple minutes from getting in my car.  Benadryl was able to stop it although had to repeat dose 4 hours later. 

Today.....   Hubby makes sandwiches in pita pockets.  I had previously tried them and they do not contain allergens, but did notice after the fact have warming for shared equipment for peanuts and soy....  Ate half of one and couldn't finish...  Start feeling very ill...  tight throat tight chest wheezing then unable to make productive cough and VERY out of it....  Take benadryl and use inhaler...  Took a good 45 mins or so to an hour to kick in but it did....  Roughly 4 hours later when benadryl is wearing off start coming back.  tight throat, tight chest, very confused and out of it, weeping.  Take 2 more benadryl and use inhaler.....  Other than first time I have no hives.   If I use soap or shampoo then I will get hives (with soy), but not from eating. 

I read that anaphylaxis causes a decrease in blood pressure.  BUT when symptoms initially come on for me (like second half of reaction today) my pulse sky rockets at first and blood pressure skyrockets....  I am very frustrated because I am a have to see it kind of person and the skin test was negative.....  So it tempts me to trying to eat something with a little soy lechitn or oil etc and then I feel sick.  In past have been able to take benadryl to subside quickly.  It seems as if benadryl is not nearly as affective as it once was. And I am really sick of this.  After reaction is over THEN I get very emotional and upset.  Obviously that has stopped and today's reaction was an accident.

Any insight that anyone has would be appreciated....  Do you have to wait so long after a reaction for valid results?  What about after pregnancy?  I went years being able to eat what I want, and now just feel like I am slowly going crazy.  We did just move from NY to AZ so I am hoping to get a referral to get to new allergist.  Just not really sure what to do and when to use epi....  I am mostly scared because I am afraid it is going to make my pulse go up even more and then will be dealing with cardiac arrest. 
I just don't know what to make of all of this and what to do anymore!!

[jenavy21]

Forgot to add almost all start with scratchy throat.  Maybe some tingling in the face as well....  Almost like I am swelling from inside nut not out.   Today's reaction was different since back of throat was very itchy, and back of ears (connect in back of throat) itchy and when second wave of reaction hit I have had popping in them ever sense. 

[CMdeux]

Your reactions are almost a textbook description of non-cutaneous, non-GI anaphylaxis.

Now, I don't want to scare you-- but I do want you to not become a news item, let's just say--  these are the kinds of reactions, more than ANY other, that tend to KILL people with food allergies.

They are hard for bystanders to recognize, they are hard for first responders to recognize-- until you are actively IN ARREST.

YOU know.  But nobody who can help you does. 

Does that make sense??

I read that anaphylaxis causes a decrease in blood pressure.  BUT when symptoms initially come on for me (like second half of reaction today) my pulse sky rockets at first and blood pressure skyrockets....  I am very frustrated because I am a have to see it kind of person and the skin test was negative.....

Well, find a new allergist-- and make it one that is willing to do whatever it takes to positively identify just WHAT it is that you are allergic to.  If it's sesame, know that while it's not in everything the way soy is-- it's also not required under labeling laws in the US the way that soy and peanut both are.

Find an allergist who is willing to conduct in-office-food-challenges.  Truly. You must find out which of those three allergens you are dealing with.  Peanut and sesame are about equally possible from what you've written-- soy, I'd assume you would simply feel lke crap ALL.the.time. because it is in so much.

If you suspect soy, the only way that you're going to be reaction free is to avoid almost any foodstuff that comes from a bag, box, or can.    Plain potatoes, plain rice, plain whole chickens, fresh vegetables that you cook yourself, butter or olive oil.  If you try that for a week and feel about 1000% better than you have in years, then soy is a definite suspect.

However, with that said-- what KIND of food do you generally eat?  Do you eat out a lot?  At what kinds of restaurants? 

[CMdeux]

Oh-- and that thing with the pulse...

COULD be a natural fight-or-flight response due to fear (naturally), but it's also possible that this relates to low blood pressure.  The cardiovascular system has a number of feedback loops which are mostly self-protective, and those can definitely cause a racing pulse like you describe.

They can also cause a SLOWING pulse, btw.  My DD has experienced both.

If you have not done so already-- I really encourage you to start with

the Anaphylaxis Grading Chart, which very helpfully lays out different kinds of symptoms, how SERIOUS those symptoms are, and gives you a starting point in talking with your allergist about epinephrine use.

Our allergist generally has advised that with symptoms on the right side of the table, sooner is better than later-- because emergency room physicians and paramedics don't necessarily think "allergic reaction" when they SEE those things in a person.  They may think "panic attack" or "substance-impaired" and maybe if you're quite fortunate, "asthma" but not usually "anaphylaxis."

What that means is that you need to be asserting yourself early on and ADMINISTERING EPINEPHRINE-- because nobody else has as good a picture of what is happening to you.

[CMdeux]

Once you have taken a look at that, please take a look at our threads about epinephrine and benadryl, respectively-- they are stickied in the top of the Reactions forum.

That should convince you to be more afraid of dying than of epinephrine. 

[jenavy21]

Thank you very much for your help.  We USED to eat a lot of sushi and oriental foods, things more processed.  After the first reaction happened we started making everything from scratch.  We were doing really well with that, until we moved.  My husband is very supportive of eating from scratch and helping we he can.  Of course he is in the military and often not home.  Our drive cross country was very hard and reactions occurred.  Once we got here I have been a bit "lazy" from making things from scratch.  Was always checking labels but when said things like possible shared equipment I wasn't as concerned about that, until this past week (Car inhaled reaction and yesterdays reaction).  I do not think that it is soy that takes the reaction so far, from past exposures to soy I do start wheezing and get tight every where, but that's about as far as it goes.  Of course I would stop eating it and take Benadryl at that point as well and never ate something like edamame or soy flour, soy protein.  So things containing soy oils or lecithn would cause that.  I do believe it to be peanuts as the main factor for bad reactions.  But I can see where sesame is possible as well.  Both of those I have had reactions from inhalants.  Sesame being early in discovery and someone was eating a hamburger covered in sesame seeds next to me and I reacted pretty strong, but didn't think you could do that to sesame.  Kind of started to think it was in my head.  Also 2 years ago went to baseball game and kid 2 seats over from was crushing peanuts and I reacted while pregnant with my youngest.  And then of course the car incident could be either one.  But the smell was repulsive, I asked my mom at that point if she was eating peanuts and she said asian rice crackers.  Checked ingredients and they were filled with 4 different types of peanuts, tons of soy, and tons of sesame.  Needless to say I was not too happy and unable to drive home.   

The old allergist wasn't wanting to do food challenge, because of they way reactions were.  She told me several times that epi should be administered at feeling of any internal swelling like throat etc and that it could save my life, where Benadryl won't.  I guess I am still trying to understand how I could eat these things for years and then all of a sudden nothing.  I used to love snickers butterfingers reeses peanut butter cups and now thought of them makes my skin crawl.  But the entire idea of epi just scares me. 

Now that we moved and these 2 have happened in last week, I am calling Monday to primary to talk about getting new referral.  Old allergist told me that hormones from baby can cause skin test to show false negatives.  And that reactions cause blood work to be inaccurate unless you have been reaction free for at least 6 weeks.  Have you heard of that before?

Thanks I will check those links out you suggested.

[momma2boys]

I used to eat bananas all the time then started gradually having worse and worse reactions. It does happen. There is nothing to be scared of as far as using Epipen. Much more to be scared of not using it. Your Dr is right, benedryl won't save your life. Hope you can get into a good allergist soon

[Macabre]

You should have used your epipen today. 

If two body systems are going, you need to epi. 

The reaction may not have actually had to do with peanut cross contact--it could have been sesame. According to current US labeling laws (if you're from the US), manufacturers do not have to label for shared equipment or facilities. And they don't have to label for the presence of sesame period.

I am allergic to sesame, and it is very difficult to find safe pita bread. Or safe any bread at the store. Pepperidge Farm labels for shared equipment with sesame, so I trust them. 

I've epid myself twice and my 15 year old son at least that many times.  I had to epi myself December 2012 because of sesame ingestion.  It was mentally something I had to talk myself into. There's always such self doubt--and fear. One of the things that has helped with deciding has been the anaphylaxis grading chart.  It's made it more of a mathematical equation.  2 body symptoms=epi.

I'm glad you found us! I hope it's a helpful place. 

[jenavy21]

Thank  you all for your help.  I am very glad I found this site and wish I would have known about it sooner.  For the most part I don't eat bread unless it is homemade, everything has soy.  I was so excited to find the pita bread that I did at costco.  They were having a demonstration and when I read the label it seemed safe.  I definitely didn't realize that sesame didn't need to be labeled.  The more I have been doing research today the more upsetting it is that everything doesn't need to be labeled. 

I think the one thing that has me confused about epi and benadryl.  If the reaction eventually passes by using Benadryl does that just mean it wasn't that bad of a reaction or is it just a matter of getting lucky?  Also is that why sometimes reaction feels like it comes back when meds wear off?

[Macabre]

Lucky. You never know where it's going to go.   It could cascade downward ion minutes.

You may be experiencing biphasic reactions. They come back. Or it may be that the Benadryl isn't enough to handle it. But you can have biphasic reactions with Epi. That's why it's important to call 911 after Epi for transport to the ER and to stay for four hours (though DS has has a biphasic reaction that took longer--and that was after getting the Epi and being at the ER. We went twice that day.)

In that December reaction, my symptoms started returning after I got to the ER. They gave me more epinephrine.

For both if my reactions, I had uterine contractions for days.

Also docs will often prescribe steroids and Zantac after anaphylaxis. Zantac blocks a different histamine receptor than Benadryl. (You can take it concurrently with Benadryl, but it is no sub for Epi.)

[twinturbo]

Are you living on base or off? Second question are you using base medical or private practice docs off base? Third, how often are you getting stationed in different places, how often do you move?

I'm a brat moved every 1-3 years, lived on/off bases, had a lifetime of changing docs hardly ever got the same doc or medical facility more than a year of my life at a time. Thinking you may need to structure smartly around that rotating care for long term stability.

[jenavy21]

We were in NY for over 4 years, but of course we didn't know about them when we got there.  So we dealt with it towards the end of our time.  A year of which I was pregnant so they didn't do much.  We are now in AZ (temporarily) and hubby is in CA....  long story short when we came up with this plan it sounded good because he would be gone the first year and half....   of course things change and now we are waiting to get into officer housing (we will be on base in CA) in miramar.  I am guessing we will be in AZ for about a year longer. 

In AZ the kids and I are living in my parents guest house.....  On one hand nice to be close to family.....  On other hand....  My mom doesn't get it.... Hence the reaction I had in my car when she brought a handful of peanuts into the car.  She has this thing that if she can't visibly see hives, it can't be that bad.  And makes multiple comments about how she wouldn't use Epi.  She seems to think that if she is eating it isn't that big of deal.  Says she understands, but doesn't....  Has done things like gave my 2 kids (5 and 7) caramel apple covered in peanuts and peanut butter and cut it with me in kitchen....  My two know to wash hands and mouth after and when hubby reminded them of it she gave this look it wasn't a big deal.  Then gives (14 month old) anythings she wants.  I stopped the peanuts and she followed up with he has had peanut butter before ( I didn't know that).  He has pretty bad eczema and sometimes gets rashes around his mouth.  So I watch what he gets especially since he can't communicate when something goes wrong. 

Either way.....   She is a lot of my stress.  Sees reaction having to go in mouth and that's it.  My daughter had a bunny and we put him in a common area about a week ago, since then I am wheezing a ton.  Very possibly the allergies....  But I am checking his food today since she got it.  And afraid what I will find.....   

After we get to CA we are hoping to be there for a while, hubby wants to go back to back to stay there.  But might not happen.....  Possibility of moving to Japan and not sure how I can do there.....   If that happens it would be CA for a year, Japan for a year (if I can get cleared to go with) and who knows where after that for 2 or 3 years......

[twinturbo]

Well, one step at a time. I'll send a private message to one of the members who can maybe recommend an allergist in Arizona. What are your housing options at this point? Because I believe everything you're relating to us and it's about as bad is it's going to get.

Back when I used military insurance it was only having to show my dependent ID. I know it's Tricare now but I haven't mastered that system. There's a few military families here they might be able to help recommend a way to make sure your records transfer as you need them to and how to make sure you see an allergist in the years to come.

I think it's time to escalate to get to California out of the immediate constant danger presented by someone who is constantly feeding or eating your allergens and has stated she will not use epinephrine to rescue anyone. Really, it's clear. I know your plans but plans changed. If the officer housing isn't available now can you get some off base stipend? I forget what it's called. We used to live in a civilian neighborhood that was military owned or subsidized.

[jenavy21]

Family makes things so complicated.   But my husband and I are talking about it.  In AZ housing is not an option since he is not stationed here or AF.  We are up in the Phoenix/Anthem area and are Tricare Prime.  I know most places take Tricare, but not all take Prime.  So I have to get referral first and go from there.  I have kept copies of records to move with to help.  The area we want in San Diego has a 16 month wait lis.  So we made a very stupid decision to have our stuff shipped here.  And then we are responsible for taking from here to CA.  I would like to say that she means well, but she just doesn't think.  I know it isn't intentional, but she has to start thinking.   Part of her problem is that she doesn't understand how they can just develop.  Same problem I have had, but I have had to accept it and allergist in NY said sometimes it just does. 

Hubby and I are talking about it and trying to figure out what to do.  Part of us has this one more reaction attitude and then the rest of us is saying don't want that to be too bad to recover from.  So it's a lot of talking and texting and emailing as we try to sort this entire thing out. 

And to clarify.  I just reread Epi line....  She hasn't said she wouldn't use Epi to rescue someone.  Just keeps saying that she doesn't think it is needed and if it was her she would never use it.   

[twinturbo]

About when to use the epinephrine... it's amounting to the same thing. The best chance for survival of anaphylaxis is earlier than later. I hear you about your mother. Totally understood. But what she's saying is that she'd use it in her judgment when it's needed which by definition of her own words is most likely too late. Epinephrine and anaphylaxis isn't a sure thing. That is what is making this a dicey situation. Short of waving a magic wand I don't think there's anything we can do to change your mom. But, maybe your husband can get through to her? Do you have his full support on this? Can he talk to her to ask her to cooperate for family's sake even if she doesn't believe in any of it. Put her personal feelings aside

So a plan moving forward because my first inclination would be to get your support. That is tough about the waiting list on housing. You're in the situation with all the details. Are you seeing any other options that aren't obvious to the rest of us because we only have partial information? You've got a lot to live for and you're only human.