Another Update.

[jenavy21]

Thanks everyone.....   I am really not sure how to take my last appt which is why I have not updated anything.   The first thing is that the lab we used for his results based positives in .35 or greater scale.   Of course their categories were also different for levels between 1, 2, 3 and so on.   The lab my primary used had levels at .08 and above again with different category ranges.  We went over the environment I am living in and he said that can play a part, but not overly convinced of it.   Said it is a lot of open air so that should also help but said avoidance is key. 

He said blood labs can vary with time between the labs.  And that he would expect if the reactions were being caused by food like peanuts I would be testing extremely high for them with blood for reaction to be so severe.   Originally he thought it was best to keep on allergy meds and wait for skin testing for foods for more time to pass.   I expressed concern with possibly moving to Japan and he said made sense and we would do it now.  I have to be off all meds for at least a week and ideally longer.  I go in on the 5th t 730 for skin testing.     I stopped Pepcid about 48 hours ago and I am miserable......   But also seem to have the flu now. 

We did say last skin test that was done my negative control was 1 by 1, which he pointed out the peanut, sesame, soy, and almonds all reacted to 1 by 1.  With all other nuts and foods 0.  Of course 1 by 1 is negative still and he said he would have guessed that if peanuts were causing issues my reaction would be much more severe.  One thing I did not know at the time is anti nausea meds like phenergan are supposed to be stopped.  At the time of the last skin testing I was on that a lot as I was passing multiple kidney stones.   So who knows if that test is accurate.

I did ask him if the skin testing is negative if I can eat peanuts in front of him or anything soy sesame etc.   My reactions happen within minutes from exposure, even when I have mistakenly thought something was safe.  He said after skin testing we will go ahead with challenging whichever foods we need to doing one at a time.  I just don't understand how there is not a clear answer for all of this.   I know what happens when I eat certain things....  And I know what has happened when I believe something is safe and it turns out not to be.   

I just find it all so confusing and am at a loss.  It really feels like I am losing my mind.   He is still telling me to keep Epi pen and avoid things, but I am not sure he is really understanding how these reactions have gone and what has occurred.  He seems stuck on numbers from the blood test, which contradicts what he said last time about reservations to doing blood test to begin with.  So who knows.......

He said sometimes people react to the processing of foods, so he finds it best for me to continue to prepare foods the way I am.  And it is healthier anyways.  But sometimes it would be nice to be able to go out to a restaurant and not worry about any of this.   Or have a candy of ANY kind that I used to be able to eat.   I just don't even know what to do anymore.........

[rebekahc]

I'm sorry you still don't have definitive answers, but I'm really glad he's not completely blowing you off and is willing to do in office food challenges. Might I suggest devising a way for the challenges to be blind (for you) so there's no opening for him to try and blame anxiety/psychosomatic/whatever when you do react?

Hope you feel better from the flu soon, too!

[CMdeux]

 


EXACTLY what Rebekah said.

Hang in there!!!   

[jenavy21]

I already thought about that. lol  Hubby and I agree to go ahead with skin testing with him, because it is quickest.   But after that will probably seek second opinion.  I have been given the same clinic name from about 3 dozen people all highly recommending them.  And no one recommends this guy.  lol  I looked up clinics in advance, but really didn't know what to look for.  Like my husband said we don't believe the blood work to environmental is accurate let alone the rest of it.   

He asked what meds I was taking daily still and I told him I had gotten off Zyrtec and was managing and still on Pepcid.  His response at that point was you are doing pretty well then.  Keep in mind that while on the Pepcid on the visit that day, my back was covered in hives and same on scalp.  Hardly seems like I am managing it very well.   Also I am asthmatic.  And first visit he did breathing test and said I did great with it.  Now keep in mind that I was on prednisone, inhaler, and neb treatments at that visit.  lol  So said no need to check at second visit.

I am praying skin test gives us answers.  But regardless for management I need another clinic.  We know it is not psychosomatic or anxiety driven and anyone else that knows me personally would tell you the same.  I cannot tell you how many times it has happened when I truly believed it wouldn't because what I was eating was safe.  On the flip side I would love for this to all be in my head or a bad dream that I could wake up from and move on.  =)