New here and frustrated with testing

Posted on: Fri, 05/29/2009 - 9:28am
mytwogirls's picture
Joined: 05/29/2009 - 16:18

I'm new here but not new to peanut allergies. I found out in 2003 that I have peanut and tree nut allergies(already knew about those). I have always avoided both but haven't been strict about it with my kids since they never had any reactions.

Now, for the past year or so, my 8 year old daughter has refused anything with peanut butter (sandwiches, candy etc) but never said why. I thought she just didn't like it. Recently she mentioned that it makes her throat itchy and tongue tingly. She had an allergy skin test at age 5 and all was negative although over the years we have doctors continue to tell us she has seasonal allergies based on symptoms.

After hearing from the Dr. that there can be false negatives on skin tests for foods, I took her back today to test for peanuts and tree nuts. Again, no reaction on the skin tests. Again, based on symptoms and exam, Dr. says she has seasonal allergies and recommends retesting for that since only nuts were done today.

As for the possible peanut allergy, she said it could be a couple of things...

1. Oral allergy syndrome-she reacts because peanuts are similar to other plants/trees she is allergic to but we don't know for sure since we didn't do the full allergy panel today.

2. Skin tests can be false negative. Dr. recommended a blood test but also said that they sometimes give false negatives too. If it does come back negative we will need to do an oral challenge.

Until we figure it out she needs to avoid peanuts and carry an epipen. Not life changing since we already avoid nuts because of my allergies. I am just frustrated with the fact that this is so complicated to identify.

Has anyone else had a similar experience?

Posted on: Sun, 05/31/2009 - 12:21am
BestAllergySites's picture
Joined: 03/15/2009 - 21:46

So sorry you are going through all of this!! I can feel your concern and frustration.
Testing is a very funny world. There are false positives-but we always fail to mention or think about the false "negatives". And they do happen as well.
I will say that based on what you wrote here, it sounds as if you have a great allergist-giving you good advice.
I have OAS to melons which is a cross reaction with pollens. I have pollen allergies. I too get an itchy tongue and throat and an upset stomach with just one bite. I just avoid the food much in the same way your daughter was avoiding pnuts.
I never went in for allergy testing for it-but have read in detail what OAS (oral allergy syndrome)is...and am pretty sure that's what it is.
Other than that I have not had any experience with false neg only what we think are false pos tests.
I would say that if you are up for it you could consider the oral challenge-just for peace of mind. It could also be that your daughter is mildly allergic but it just doesn't show up on the tests.
Lastly-and I'm sure this isn't it but so you know-some people have what they perceive as reactions when other family members or ones they love have allergies OR when they outgrow an allergy but are so nervous they "think" they are still allergic.
I'm definitely not saying that is the case with your daughter-but wanted to throw out there that sometimes mild reactions "can" be psychological.
Unfortunately you may never get to the bottom of this and will just have to avoid peanuts and carry an epi-just in case. I know it would feel better to know "for sure", but sometimes that's just the way it is in the allergy world.
Good luck with the rast/blood if you go through with it and let us know what happens.

Posted on: Mon, 06/22/2009 - 8:22am
mytwogirls's picture
Joined: 05/29/2009 - 16:18

Just an update on the testing...
I got the blood test results back today and she was negative for all nuts. The person who called with the results said that the Dr. is out of town this week and to absolutely not re-introduce peanuts until we speak with her.
I guess the next step is either to do the oral challenge or do the full allergy testing to see if this could be an oral allergy caused by pollen etc. Until then, I'll just keep doing what I have been doing and hope we get it figured out soon.

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