allergies come and go

magdusia

hi ladies! been a while since i've been here.. Super busy at work and with the kidos. My 11 month old has the gut of steel! My 3 y/o is such a mess with his food allergies.

I was curious if any of you experience your kids (or you) having allergies that come and go. For example, my DS was tested at 7 months negative for soy, than he was re-tested at 1 by a new allergist and he was positive for soy. A year later he was negative for soy and now we're 99% sure his soy allergy is back. What gives? He also gained tree nuts (on top of milk/eggs/peanuts) so he's constantly becoming allergic to new foods which is frightening.

Soy is not anaphylaxis like his other ones, it gives him a massive butt rash (but the rash is actually on his butt cheeks) and a rash under his eyes.  It looks very uncomfortable and he's been complaining his tummy hurts which is new to us.

He had blood drawn last night so we should have results back next week with what his levels are. I understand you can become allergic to something at any point in your life, but his is coming and going.  I'm starting to fear EoE, but i think the list of things would be much greater.

We also suspect an allergy to apples.  I think that's what gives him tummy ache. ugh -it's so frusturating!

 

EDIT - i was also thinking these could be false negatives / false positives, but when ever his results are negative, he eats the 'allergen' without any issues, but when it's positive, he does have issues eating the 'allergen'..

 

tnd81

I haven't experienced the coming and going (yet), that sounds like a nightmare and I can't even imagine how frustrating that must be to get the excitement of losing an allergy for it to come back. I read this online book on food allergy studies (can't remember the name but it was fascinating), but it said with the RAST tests there's a strong likelihood of false positives but very rarely do false negatives come up. So if you have a negative you can be confident it's accurate. 

I fear the false positives because I'd really hate to be avoiding something that isn't necessary. We've only done one food challenge with milk because her level was a low 2 - turns out she's anaphylactic. So that confirmed the "levels" mean nothing! GL 

magdusia

tnd81:

I haven't experienced the coming and going (yet), that sounds like a nightmare and I can't even imagine how frustrating that must be to get the excitement of losing an allergy for it to come back. I read this online book on food allergy studies (can't remember the name but it was fascinating), but it said with the RAST tests there's a strong likelihood of false positives but very rarely do false negatives come up. So if you have a negative you can be confident it's accurate. 

I fear the false positives because I'd really hate to be avoiding something that isn't necessary. We've only done one food challenge with milk because her level was a low 2 - turns out she's anaphylactic. So that confirmed the "levels" mean nothing! GL 

that's scarry! 

klyann

How frustrating!  L seems to be improving with Dairy (can handle it baked) but now after 20 times eating peanut butter she suddenly developed hives all over her body.  Very scary when allergies just pop up out of nowhere.

I wonder if there is some kind of environmental factor that is making him more sensitive to foods at some times than others?   Like something that is turning the allergy switch on and off?

 

mrsmac08

I don't have experience with the allergies coming and going, but I just wanted to mention that my twins have allergies which do not show up on skin or blood tests, so the only way to test them is through food challenges in the hospital.  DD is allergic to milk protein and DS is allergic to soy and peanuts.  They have non-IGE mediated reactions to milk and soy. There is currently no reliable test for non-IgE mediated allergies. DS also had a negative on the peanut test (although broke out in satellite hives which at the time all assumed was from the control), but when he had a very small amount of peanut butter he vomited and got a hive.

 Just something to think about regarding the tests.

Also, like pp mentioned about an environmental factor - my co-worker has a gluten allergy (hives/anaphylaxis) and she has had accidental exposures with no reaction, and almost all of her reactions have occurred when her heart rate has been elevated (at the gym, walking from work, etc).

magdusia

klyann:

How frustrating!  L seems to be improving with Dairy (can handle it baked) but now after 20 times eating peanut butter she suddenly developed hives all over her body.  Very scary when allergies just pop up out of nowhere.

I wonder if there is some kind of environmental factor that is making him more sensitive to foods at some times than others?   Like something that is turning the allergy switch on and off?

that's interesting.  I'm going to bring this up at the follow up.  He was never tested for environmental. 

magdusia

MrsMac08:

I don't have experience with the allergies coming and going, but I just wanted to mention that my twins have allergies which do not show up on skin or blood tests, so the only way to test them is through food challenges in the hospital.  DD is allergic to milk protein and DS is allergic to soy and peanuts.  They have non-IGE mediated reactions to milk and soy. There is currently no reliable test for non-IgE mediated allergies. DS also had a negative on the peanut test (although broke out in satellite hives which at the time all assumed was from the control), but when he had a very small amount of peanut butter he vomited and got a hive.

 Just something to think about regarding the tests.

Also, like pp mentioned about an environmental factor - my co-worker has a gluten allergy (hives/anaphylaxis) and she has had accidental exposures with no reaction, and almost all of her reactions have occurred when her heart rate has been elevated (at the gym, walking from work, etc).

I've never heard of that.. can they go into anaphalexis and still have a negetive result? that is insaine and so scary! 

i'm starting not like the RAST test anymore.  Too much room for error. 

mrsmac08

Non-IgE mediated don't typically produce anaphylaxis...and our kids have never had an anaphylactic reaction (though we have epi-pens just in case).  They both have GI related symptoms, both are bad, but DD tends to be worse as she violently vomits and goes limp, and can't keep anything down for at least a day.  She gets really quickly dehydrated from it.

As for the peanuts, we are all confused by that because the tests came up negative, but DS' reaction (because of hives) is apparently more in line with an IgE mediated allergy which normally shows on the tests. So, we just avoid peanuts for now.

macchiatto

That's interesting. Overall we haven't experienced that much but I will say, at 9m Will tested negative for peanuts, at 15m he tested positive for peanuts on both the skin and blood tests, and then at 2y3m he tested negative for peanuts and we decided to go ahead with a food challenge, which he passed. I know plenty of allergists don't even test that young and the 15m results may have been false positives; who knows? But that's my only experience with the allergies coming and going.