UPDATE (original post)

[jenavy21]

UPDATE!!

I met the new allergist today.  He seems nice.  Asked questions and listened.  A couple of times he skipped ahead and then when he would ask new question and I would answer he would bring it back to fill in the gaps.  Had me do a bunch of blood work since I need to be off antihistamines for skin test.  Said he will see me back in 4 weeks to go over blood results and wants me to write everything down in the mean time.  At that point he is hoping I can be off allergy meds for long enough to do skin testing if needed.   They took 16 very large vials.  Tested 55 food items and all the environmental and animals for this area. 

Told me to make the cll when it comes to epi.  That it is a fine line and that better to be safe than sorry, but to also try to stay calm during reaction to make sure that if I am panicking I don't make it worse.  Said more than likely it is the same food allergens possibly being complicated by environmental changes or irritants.  And to just remember and to reassure myself that it is not normal to all of a sudden to react to what seems like everything.  So on Mar 5th, I ill get results and we will see what happens in the mean time.  Until then I am supposed to avoid as much as I can. 

[CMdeux]

Take copies of:


Emergency Action plan-- and get help from your doc to fill one out that meets your needs

Anaphylaxis Grading Chart-- this is sometimes a useful tool to discuss past reactions, and to decide what your decision tree/flow-chart/protocol looks like for your action plan.



1.  What should you be avoiding right now?

2.  Is there any benefit in doing a MUCH more limited elimination diet and slowly reintroducing foods once you have your reactivity under control again?  No? Maybe?

3.  Any special instructions re: emergency treatment that YOU should be aware of (and insist that ER staff follow)?  For example-- waiting 4h even if you have to do it in the ER waiting room after a discharge?

4.  Which allergens seem to be MOST probable in light of your reaction history at this point?

5.  How many doses of epi should you be carrying?

6.  How often should you be seen during follow-up?

7.  Anything that you need to know or seem to be missing?

[CMdeux]

The nurse sounds like a real keeper-- very kind.    You might want to consider a medic-alert bracelet even though you can't (yet) specify allergens with a lot of certainty.  Might be another thing to discuss.

Oh-- maintenance meds.  That would be another thing.  What and when, and forever?  Or how long?

[jenavy21]

Thanks!!   My husband and I had been talking about med bracelet a while ago with original peanut, sesame, and soy.  But at the time it seemed like if I was really good at avoiding we would be ok.  Now not so much.  I am printing that stuff out now to go with reaction history. 
Thanks again!!

[momma2boys]

I hope you get some answers! Allergies suck. 

[LinksEtc]

I would discuss what to do if you have coughing/wheezing after eating or having a possible contact exposure.

I noticed in this thread that you used an inhaler & Benadryl, but it is important to give epinephrine if those symptoms are due to anaphylaxis.
Looking for some Help and guidance!!

Here is an example of an allergy plan you can print:
http://www.foodallergy.org/document.doc?id=234

If you do have a sesame allergy, maybe the allergist can go over the labeling rules a little more with you.  (We can also help you with that.)

I hope the appointment goes well.

[Janelle205]

If I remember correctly, you have asthma?  I would ask the doc for some advice on determining what is asthma and what is a potential allergic reaction.  On a positive note, epi will treat both, but if you are having frequent asthma flares, you don't want to be using that all the time.

[jenavy21]

Thanks!!  I am working on getting over the Epi fear.   They gave it at the hospital last Thursday.  And the last 5 days or so have been HELL.   I know I should have gone back to hospital and used the Epi again at least twice, but I am still scared to give the injection to myself and to need it so often.  Which means we really need to figure out the trigger so we can eliminate it.  After my mom so reaction last Thursday she has been pushing for me to go back to hospital as well, but it is hard to do with 3 kids.   Don't really have time to be sick.  I am sure it sounds really stupid.  And I have been reading and listening to the Benadryl can't save you, but I am still afraid that I am going to use it too soon or when not needed and put myself in cardiac arrest.   

I am hoping Dr can give me clear cut answer to make me feel better about having to use it.  So I am looking for a clear cut answer to if this then do this.  Hoping he can give that.  But more importantly I am hoping we can figure out what the trigger is to get rid of it.  I do know that I am physically drained right now and can't keep going reaction after reaction.   

I was told back in October 2011 (when they gave me the Epi) that I have Sesame, soy, and peanut allergies.  I thought I was doing well reading the labels, but now not so sure.  When we were in New York, a lot of labels had sesame mentioned, because a lot of the things we ate either came from canada or where smaller companies that sent things to Canada and Canada labels for sesame.  I didn't realize that the US did not and now that we are in AZ I hardly see anything labeled for trace amounts of sesame.  I have it narrowed down to a few things:  either something has changed and new allergies, environmental allergies complicating things, or those 3 allergies have gotten significantly worse. 

As far as I have seen.   My reactions occur fairly instantly.   Even contact in the air at the store is happening within minutes.  If I eat something I normally know within a bite or two that it was a mistake. 

[jenavy21]

I will ask about determining difference between asthma and reaction.   That is something I feel stupid to say that I don't realize.  It feels like my throat is tightening and last Thursday that is what did happen, but it started out feeling more like asthma.  I am having a hard time explaining it.   Because I get very dizzy and lot's of pressure in my head with the tightness in chest and throat.  I guess I have been trying to use my throat as determining factor on epi.  Last Thursday my voice got very hoarse and at hospital when they checked throat and everything said it was swollen so gave epi.   Since that day although my throat has gotten tight it hasn't gotten that hoarse.   I am not sure if that is a good determining factor or not but that is what I have been using.

[CMdeux]

One more thing to ask--

-- if this IS a new allergen, what is it most likely to be?  Another seed?  A legume?  Or a treenut?  (Could be any one, given the statistics and the existing allergies-- allergist's opinion on this one-- assuming a great allergist-- would be quite helpful).

Any advice for "safe" foods to begin Operation Reaction-Free would probably be quite helpful, too.  We can certainly help you here, of course, but it would be good to hear a good allergist's ideas there, too. 

So-- many allergists like the analogy of a teacup-- that is, overflow of the "cup" being a reaction or allergy symptoms.  Everything allergen exposure adds a bit to that "cup" and gives you less chance to "empty" it in time.  Ergo, it takes LESS to push you into overflow.  Any chance that something in your new housing situation is "filling up" your allergy cup close to overflow and making you WAY more reactive?  Pets?  molds?  Dust? Pollen?  (It's already tree pollen season in places out here in the west-- particularly the southern part of the west).

[LinksEtc]

Thanks!!  I am working on getting over the Epi fear.   

And I have been reading and listening to the Benadryl can't save you, but I am still afraid that I am going to use it too soon or when not needed and put myself in cardiac arrest.   

Have you read this blog post?  I really like it.
http://www.asthmaallergieschildren.com/2012/12/09/food-allergies-prescribed-injectable-epinephrine-know-practice-carry-use/

Hopefully, the allergist will be successful in working with you to figure out your allergens.  That, along with some improved food label reading skills, should hopefully reduce the number of reactions you are having.  Having said that, if you are experiencing anaphylaxis, you really should use epi & call 911. 


http://www.foodallergy.org/treating-an-allergic-reaction

Epinephrine is a safe drug, with the risks of anaphylaxis outweighing any risks of administering the medication. Extra caution is only needed for elderly patients or those with known heart disease where an increased heart rate could be problematic. Nonetheless, epinephrine should be used to treat anaphylaxis in these individuals.

[CMdeux]

Right-- properly administered (intramuscularly) EPI is really, REALLY low-risk for all but a tiny handful of people with specific cardiac abnormalities.

If you happen to BE a person who is taking promethizine, or has a vulnerability to aortic dissection or a known aneurism risk, then by all means worry and discuss with your doc-- but otherwise, know that your risks are WAY lower in unnecessarily using epi than from NOT using it if you're wrong and it is needed.

Really-- LOW risk.  No worse than a sudden fight-or-flight response on the body.    So if you watch horror movies okay, you're good.   

[LinksEtc]

I didn't realize that the US did not and now that we are in AZ I hardly see anything labeled for trace amounts of sesame.

All advisory warnings (ex. - "made on the same equipment", "made in the same facility", "may contain", etc.) are voluntary for all allergens, even for ones like peanut.  Not seeing a warning does not mean that the food is safe.

With sesame, sometimes there is horrible cross-contamination, but sometimes manufacturers don't really care or label for it because sesame is not considered a "major food allergen".

Plus, sesame can be an actual ingredient in the food, but "hide" under terms such as "flavor" or "spice".

Don't forget to also consider non-food products like makeup.

There is a lot of good label info here:
http://www.kidswithfoodallergies.org/resourcetopic.php?topic=pfood-safety-labeling

With sesame, you have to be a bit of a detective ... which is what this thread is about  .
What do companies tell you about their labeling practices for sesame?

Here is some more info on sesame:
http://www.sch.edu.au/health/factsheets/joint/?sesame_free_diet.htm

[jenavy21]

LinksEtc,
Thank you for that blog.   I had not read it before.  I don't know why I am so afraid of it.  But when not having a reaction I can tell you when I should.  Then when reaction starts there is always this part of me that just freezes a bit and doubts everything.  That feeling of I am going to make it worse.   I will definitely talk to doctor about it tomorrow.

I will check those threads out too!  I know a couple years ago I learned about the sesame in things like lip gloss.   My lips were so chapped and kept getting worse and worse and worse until bleeding and I was having some wheezing.  Turns out the lip stuff I was using by Burt's Bees I believe had sesame.   

CMdeux,
I like the tea cup analogy.  I can see where that might be playing a part right now.  Because it just seems I am way too sensitive right now.   I will ask what he things about possible new allergies and what he suggests for safe foods.   I know allergies here are already pretty bad and most of my environmental allergies that are off the chart are allergens in AZ.  Will environmental allergies affect food reactions that way?  I know that is one question I have.  We also have pet questions, even though we only have a bunny inside, he seems to be really bothering me with his litter (we use cat litter) and seems to have strong ammonia smell.  But also want to be checked for parrots, dogs, horses (was mildly before, but 20 on property), chickens, cows etc    As those are the animals on property.   Also with parrots their seed has peanuts, sesame sticks, etc.  So need to figure out how sensitive I am to the ones outdoors and although my parents have a very large house, is it a problem inside their house (they have a macaw and african grey).

I can watch horror movies ok and don't have conditions mentioned.  I know I have to get over it!!!  I am working on it.   

[jenavy21]

Put update in original post.