UPDATE (original post)

[CMdeux]

Excellent!

I'm really, really glad that you have an allergist who is willing to take a lot of time with you.   I sincerely hope that blood testing doesn't give you as many questions as answers-- it can, sometimes.  But it sounds like your allergist is a good fit for your needs right now.

[twinturbo]

I am relieved for you. Hopefully this is the first step towards getting settled.

[LinksEtc]

Tested 55 food items and all the environmental and animals for this area. 

Wow, that's a lot.  Are there that many foods that are suspect based on reaction history?

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. 

Did he give you a written "food allergy action plan" aka "emergency care plan"?

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.

That's a long time to avoid as much as you can.  Did he give you more guidance on what kind of diet to follow?

Until you get the reactions under control, you might try (if ok with your allergist) sticking to very simple ingredients and cooking things from scratch.  Not a lot of processed food.  A lot of whole foods ... fresh fruits & veggies, items with 1 ingredient on the food label, meat without added ingredients like injected solutions, etc.  Keep a food diary of everything you're eating and write the details of any reactions.  If you react to something, don't eat it again unless the allergist tells you otherwise.
Bring the food diary with you to your next appointment.

[jenavy21]

Yeah it was a lot of blood too!!   My reaction history is firm with peanut, sesame, and soy.  I think he is looking to see if some of the fruits and vegetables coordinate with environmental allergies.  For example: strawberries and avocados have started causing problems within a few minutes of eating them.  But I was eating them constantly for over a week straight with no issues, then one day BAM.   That is how original Sesame, soy, and peanut were for me.  So that is scary for me to want to eat anything, when I start eating something for a while and then have problems all of a sudden.  He stressed to me that, that is not typical of allergies at onset.  So he is pretty certain there would be something else.  And if there are reactions to those "new" foods, he thinks it would be caused mainly be cross pollen contamination and not lead to anaphylaxis like the others do. 

Originally the testing I had done was specific to environment and what I had eaten for original reaction.   He really wanted to do skin testing, but decided best not to take me off all the meds just yet.  I have also been getting red on arms, chest, and face that burn badly.  He said that prednisone can also cause that so he wants to see if I get off of that for a couple weeks if that improves or gets worse.  I think he picked 4 weeks to make sure all lab results were back and to give me the greatest chance of being off antihistamines for at least a week so he can scratch test what he wants at that time.  And so I can have detailed daily information for him, for over a long period of time.

I have been cooking things from scratch since 10/2011.  That normally means bread and stuff too.  Even normally make own sorbets etc.   With moving I have not been as good and have made stupid mistakes like the pita bread, which I won't be repeating.   So back to everything from scratch, and everything simple.  For at least next few weeks and also no shopping in craft stores.  =(  And to be very careful with grocery stores etc or any other location.   He said he doesn't want me to live in a bubble but for the next few weeks to basically live in bubble so we can figure this out. 

We talked about Epi plan for both asthma and reaction.  He didn't give me anything written.  But we went over it a few times.  And he said to trust my instinct and for me to make the call.  That it is a fine line on whether you need to use Epi.  And unfortunately if you don't take it at that time, then it can be too late.  On the flip side he really doesn't want me to have to use epi every day like how these reactions have been hitting.  That it is more important to get rid of the trigger by staying away from as much as possible so that can be eliminated.  Also stressed that he knows reactions can be scary, but to remember to try and stay calm.  And by doing so that will help me know whether or not I should use Epi.

[CMdeux]

He sounds like a good and very thorough allergist.  I think you may have found yourself a keeper.   

[lakeswimr]

I was struck by the very same quotes Links posted.  I hear what you are saying in your reply and see that your allergist is very thoughtful.

A few thoughts that may or may not be off base from me after reading what you wrote are that sesame is a food that doesn't have to be listed on food labels based on FDA rules so maybe some of your reactions are actually to unlisted sesame.  The only way to know if a food has sesame is to call companies.  It is essential to do this for anything with any ambiguous wording like, 'spice' or 'natural flavor' but my child has had reactions to foods even when there wasn't any ambiguous wording in the ingredients.  This is because many foods are produced on the same lines with sesame and not cleaned the way they would be for things like peanuts and 'Top 8' allergens.  So, I try to call companies about every product before giving a food to my son.  Once I call once and know their labeling practices I don't have to keep calling.  Nabsico/Kraft treat sesame as a 'Top 8' allergen so I know I can go by their label alone.  Other companies do not and so calling them is very important.

I also wonder about cross contamination of your foods.  I'm not sure how long you have been dealing with food allergies or how careful you are about what you eat and where you eat.  I hear you are making your own foods from scratch which is great as long as the ingredients you use are allergen-free.  I have found even some basic ingredients like some flours, oils, etc can have cross contamination with allergens so it doesn't hurt to look at those things as well.

It is certainly possible to develop food allergies at any time.  It is not that likely to suddenly develop a bunch of them.  I tend to always suspect a reaction was to a known allergen that somehow got DS's food xcontamed than that a new food allergy developed, although my son has developed new food allergies past the time he had his original set. 

I think you should have a clear, written emergency plan of when to epi.  Going by your best guess alone doesn't sound like enough of a plan to me.

Here is a link to a sample plan.

http://www.foodallergy.org/document.doc?id=234

It is a bit different than my son's plan.  I know what your allergist is saying but I still think he should give you a clear, written plan so things are objective as to whether you should epi or not or as objective as they can be.

[CMdeux]

Well, but our allergist has never "given us" an emergency action plan in writing, either-- simply gone over the anaphylaxis grading chart, discussed which symptoms merit immediate epi, which ones merit wait-and-see-- assuming NO known exposure, I mean.

With known exposure we epi either way.


I do think that fully vetting all of your basic ingredients with some phone calls to manufacturers is a good idea.  If you post brands/sizes in Manufacturers here, others may be able to help you (or confirm what CSR's tell you with separate phone inquiries).

[twinturbo]

I understand the message to be, from doctor to patient I can tell you the clinical but ultimately trust your judgment because her threshold to inject might be stronger (and more correct) on intuition for this initial miasma of unknown rather than be a complete slave to the flowchart.

They're going to get there together but he's only met her once, believes her and will help with the labs, interpretation and advice over time. OP is in a tough spot and I suspect doc knows it.

But that's my take on interpreting second hand reporting via a post. I could be way off.

[LinksEtc]

This is no secret  - I am a big fan of the written plan (a nice little rhyme there  )

I agree with TT about not being a complete slave to a flowchart, and that there is a place for judgment, but I just see so much value in good written plans. 

A copy of dd's FA plan is with her epi's that I carry.  I am pretty comfortable with FA stuff at this point, but if she has a rxn, I want that objective plan there that I can look at (especially since if she were to have a significant reaction, I might not be thinking as clearly as usual). 

So many people talk themselves out of giving epi when it really should have been given ... with a written plan, it reminds people that some symptoms are "epi symptoms", it shows/reminds what the doc recommends based on objective guidelines, etc.

Plus, it can help with credibility issues (ex - with EMT) ... "I was just following the plan that my allergist gave me." 

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

Have your doctor create a written Food Allergy & Anaphylaxis Emergency Care Plan so that you and others will know what to do in the event of a reaction.

Not passing judgment ... written or not, the most important thing is that you understand the symptoms of anaphylaxis and know how to treat it.   

[twinturbo]

^co-sign the above as a gold standard. OP, I think, presents early on in this relationship with her doc at a somewhat anomalous position. I got the sense they're going to get there together and for now this first time meeting he doesn't want to mess with her mojo since he knows for a fact she will self-inject. On the other hand that's a buttload of inference on my part.

[jenavy21]

For the most part we do everything from scratch.  No seasonings at all.   The only herbs I use are fresh grown.  I do use salt on occasion and pepper.  We do use real butter and for the most part stay away from oils (olive oil on occasion) and there is a canola mayonnaise I have used before but not recently.  While we know the sesame is complicated, he really does believe the problem is more with nuts.  Some of these reactions are happening more on inhaled and they didn't before.   But because where we are living, there are nuts all over that it is possible I am just being over exposed and making problem worse, which could account for major increase in reactions.  Also since I am the one who does most of the cooking, we really have little room for cross contamination.  Our home is a nut free home.  And while my kids do eat cereal on occasion and other snacks, we make sure not to get anything with nuts etc in them. 

We will be able to compare blood levels to those drawn a couple years ago, so hopefully that will give us some insight as well.  He REALLY wants to do the skin test, but we are trying to figure out how to get me there.  My gut instinct says this is a nut issue.  And because they are everywhere around me it is just getting worse.  I could be wrong but I think the peanut is going to come back significantly elevated compared to before.  But we will find out.

When it comes to injecting.   I have had 3 reactions now in past week, not from eating anything.  I tried staying away from parents house to see if that helped some and didn't notice much.  So tried to eat dinner there last night and after being inside for about 30 mins, reaction started.  I took the liquid children's benadryl and pepcid as soon as I felt anything and my throat and chest relaxed.   I did get barky cough and have palpitations after and very funny feeling in chest.  But I didn't use Epi because the other symptoms relaxed.  I am thinking that I was dehydrated from blood draw earlier and that led to some of it.  But in a case like that would you use Epi?   The grading chart doesn't help me much at that point because I am not feeling tightness anymore.   And that is why I am kind of stuck.  Yes there are birds in their house, but they are also outside my house.  So really hard to get completely away.

[twinturbo]

Qualified yes. On paper those are 2 systems, and with respiratory with known history that's an automatic. Yet it doesn't make sense that you'd have to do it this often.

[jenavy21]

That's the trigger we are trying to find.  If it is in fact nuts.  And I have gotten that sensitive from over exposure.  It explains a lot.  If it is not then something is missing.  So in meantime I am just trying to avoid best I can and writing all down so he can see if he can help make the connection.  The breed parrots on their property and have TONS of other animals (horses, cows, chickens, etc etc etc)  Yes they have a lot of land, but for me where ever I go I am always around that stuff.  So in meantime Trying to determine the trigger.  If it is in fact nuts then we will have to figure something out.  He said yes people can be that sensitive, but not as common.  So it is possible that it is peanut and tree nut, which would make it even more stuff around me that shouldn't be.  You would have to see their property to understand.  It isn't a normal residential community.  They have a lot of land.  And this normal area for me to be as we have always lived in a residential community.   

[CMdeux]

Yes, I understand-- and it makes complete sense that he's leaving it more or less up to you to determine what to do in an individual kind of way, given the uniqueness of your situation.    Do study that anaphylaxis grading chart, though-- and kind of have a dividing line in YOUR mind that tallies with that-- some symptoms are in a grey area, for sure-- but the ones that impact blood pressure and breathing, not so much.

ANYTHING that is in that life-threatening zone, you really have to use epinephrine.     Yes, spontaneous recovery happens more often than not even with those-- but if you get it wrong, you're dead, and if you delay too long, same story-- you can be unrecoverable by that time.  KWIM?

Frequency makes it so hard emotionally to actually DO that, though.  I know.

[lakeswimr]

Well, but our allergist has never "given us" an emergency action plan in writing, either-- simply gone over the anaphylaxis grading chart, discussed which symptoms merit immediate epi, which ones merit wait-and-see-- assuming NO known exposure, I mean.

With known exposure we epi either way.


I do think that fully vetting all of your basic ingredients with some phone calls to manufacturers is a good idea.  If you post brands/sizes in Manufacturers here, others may be able to help you (or confirm what CSR's tell you with separate phone inquiries).

I think all allergist should give their patients a clear, written emergency plan.  If the grading chart works for you that's a written plan.  Giving nothing in writing and telling people to go with their gut is a red flag in my opinion or not the standard of care I would expect from a good allergist.