Anyone else in this situation?--very hight CAP RAST, but never reacted

Posted on: Thu, 06/05/2003 - 6:25am
BENSMOM's picture
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Joined: 05/20/2000 - 09:00

Hi. I've been around a while so a lot of the old-timers know my son's story, but I wanted to see if anyone else is in this boat.

Ben reacted to walnut when he was 4 1/2. We got him skin prick tested and he was allergic to pretty much all tree nuts and was 4++ to peanuts. A second skin prick test showed the same results. Took him to Dr. Wood (one of the leading experts) for a CAP RAST and it came back over 100 for peanuts--off the charts. The tree nuts were all in the 2-10 range. Before this testing, Ben had eaten lots of "may contain" foods, had touched his mouth and tongue to peanutbutter enough to know he didn't like it, and would pick peanuts off things and eat the rest. He also at granola bars made with peanut flour almost every day. Never had a reaction. Dr. Wood was very surprised at his high CAP RAST. Based on his history, he would have thought he wasn't really allergic, but he said with a CAP RAST over 100, it's unlikely to ever come down to any level where he would do an oral challenge. He's never seen that happen.

Does anyone else have a similar situation? I guess I'm thinking about it again now because I just had him re-tested (he's 7 1/2 now) and the CAP RAST is still over 100 for peanut, so it wasn't a fluke. The tree nut numbers are all still under 10 (but most are a little higher than last time.) I feel that because Ben has never reacted, my comfort zone is pretty relaxed, but sometimes it freaks me out that his CAP RAST is off the charts. Supposedly, anything over 15 means you have a 98% chance of reacting and I think a high score means you'll react to minute amounts. Believe me, I'm grateful he's never reacted and that's what I keep in mind. I just wonder if anyone else is in the same boat.

Posted on: Thu, 06/05/2003 - 6:53am
smack's picture
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Joined: 11/14/2001 - 09:00

BENSMOM,
Thanks for sharing your story again btw, it has always interested me.
Why, because your son ate foods with the contaminant on them and never reacted.
You would think with the score over 100 he would have reacted, right?
This is just my opinion, I wonder if your son is highly tree-nut allergic(walnuts)and not allergic to peanuts at all?
I wonder why Dr. Wood wouldn't suggest a challenge on just peanut if he has never reacted to it before.
I'm just very leary of tests sometimes since my son scores low yet on his first and only exposure to peanut via choc.chip cookie with a minute amount of peanut butter in the whole batch, he reacted.
Also, has had reactions to smelling peanuts or products/foods made with peanut butter.
It just puzzles me as to your ds having his first reaction to walnuts. Then your ds is tested for tree-nuts and the score isn't as high as peanut. Then the foods he eats are made with peanut flour and he doesn't react, nor reacts to foods contaminated with peanuts but yet scores off the chart?

Posted on: Thu, 06/05/2003 - 7:43am
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Joined: 03/29/2003 - 09:00

BENSMOM
Our situation sounds very similar. DS has scored greater than 100 to peanuts two times now, and much lower to various TN. His all-time worst reaction, however, was to tropical fruit, to which he scored less than 10. His first pn/tn reaction was to a single cashew cooked in peanut oil - that's when he was diagnosed with pa and tn allergy. The only other known peanut reaction was to a neighbor's choc. chip cookies baked with peanut butter (horrifying, I know). Both of these reactions resulted in pretty mild hives which were treated with Benadryl. His cap Rast number is so scary to me, but he does seem to be atypical. It's the next exposure that has me spooked, especially considering he enters Kindergarten next year. Thanks for sharing.
------------------
Sally

Posted on: Thu, 06/05/2003 - 11:13am
momma2boys's picture
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Joined: 03/14/2003 - 09:00

Bensmom, my ds skin tested 4+, and his rast, (not a cap rast) was 8.43, category 4. I dont know how that compares to cap rast but he has never had a reaction.
It really makes me wonder sometimes if he really is allergic. I dont think I could ever agree to a challenge.
He was exposed through my preg. and breastfeeding.
Glad to know Im not the only one whos confused about this.

Posted on: Thu, 06/05/2003 - 10:04pm
BENSMOM's picture
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Joined: 05/20/2000 - 09:00

samck, I think Dr. Wood won't do an oral challenge becaue the CAP RAST is too high. I don't know if he'd be willing to if I pressed him on it, but I doubt it--liability and all. He doesn't generally do oral challenges unless the score is under 5.
katjam, the thing I do keep in mind is that the score does not correlate to severity of reaction. Someone with a score of 0.8 could react more severely than someone with a score of over 100. It's just that it's more likely that someone with a score over 100 will react at all, and I *think* (but I'm not sure) it would take a smaller amount of peanut to cause a reaction. That's what confuses me--Ben ate peanut flour every day and didn't react. I feel like there is something fundamental about this allergy that they still don't understand, and until they finally figure it out, the tests will be ambiguous.
momma2boys, yup, makes you wonder if they're allergic. Why was your son tested in the first place? Do you think he's ever been exposed besides through breastmilk? How old is he now and when was he first diagnosed?

Posted on: Thu, 06/05/2003 - 11:20pm
Peg541's picture
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Joined: 12/29/2002 - 09:00

When my son had his first skin test he tested off the charts. It was a 4+++ reaction with a pseudopod ( a little offshoot of the wheal indicating it was a bigger reaction than most)
The doctor said "He must have eaten peanuts before?" and I could pretty safely said it had been one bite and spit out of a PB sandwich one year before with no reaction although we did not know to look for a reaction.
I think my son was allergic at birth and had low level type of exposure and reactions all along. We were so used to him being sick all the time maybe some of those illnesses were peanut reactions. He never had hives or swelling!
Taking a peanut off of a cookie is a contact, taking one bite of a sandwich is an ingestion considering how little peanut is necessary to kill you.
Is it not possible that some kids do not react violently right at their first exposures but will later as susceptibility adds up?
A CAP RAST that high, and repeated that high seems accurate and I think should be highly respected.
And I think the jury is still out on kids being exposed in utero and breastfeeding. It might be wrong to assume that because it also might be in his very nature to be PA.
Peg

Posted on: Thu, 06/05/2003 - 11:24pm
river's picture
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Joined: 07/15/1999 - 09:00

Bensmom, just a hunch but it may be that the peanut proteins that could cause a reaction in Ben are not present or altered some way in the peanut flour. For that reason he never reacted to this particular form of peanut. (There's a whole group of proteins in peanuts.)
The fact that he does not like peanuts is a significant sign. Perhaps he's one of those people whose reactions get more serious as the number of exposures increase.
Perhaps some of those adults who say they acquired PA late in life, actually had it all the time but the reactions were just not as noticable.
Just throwing out possiblities in trying to understand this complex and confusing allergy.

Posted on: Fri, 06/06/2003 - 2:43am
BENSMOM's picture
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Joined: 05/20/2000 - 09:00

Peg and river, good point about people "becoming" allergic when they're older, but maybe they were allergic all along. If Ben hadn't reacted to the walnut, we'd never know about the peanut. Maybe by now he would have started reacting to peanuts, maybe not. It makes me crazy though because FAAN and any good allergist will say that dianosis depends on test results AND history, and Ben has no history of reaction.
As for the peanut flour, I have read about people reacting to that, so there must still be peanut protein there, but maybe Ben is allergic to one of the other peanut proteins that's not present. Who knows. I wish there were more research on the separate proteins. I think that might be a key to some of the pa mysteries, and there's just not enough research yet.
As I said, my comfort zone is looser than some others here, but I have always wondered if it could get worse as he gets older if he has any exposure at all. I basically let him eat anything that isn't labeled as "may contain." We stay away from Chinese food, but he does occasionally have bakery products unless they are labeled.

Posted on: Fri, 06/06/2003 - 7:17am
anonymous's picture
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Joined: 05/28/2009 - 16:42

Bensmom,
I think you're on to something. I've read about different varieties of peanuts, some being very allergenic varieties, others are not. Perhaps this explains why Reese's pieces produced two extremely violent reactions before diagnosed, other reactions weren't severe enough for us to put two and two together. Ryan's allergist said the blood tests are such an individual thing--resulting in varying from low RAST's with bad reactions, to high ones with milder reactions. The studies I read about the various varieties of peanuts were very interesting, especially the part in which scientists are trying to work on genetically modified peanuts that would be safe for PA people.

Posted on: Fri, 06/06/2003 - 8:29am
Chicago's picture
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Joined: 04/21/2001 - 09:00

I have also always wondered if the severity of the reaction is at all effected by what else the peanut protein is consumed with....does it matter if you have a full stomach already when you eat something peanut? Would a milk like product perhaps coat your throat and delay or lessen a reaction?
I have never asked these questions at the allergist since when I am there I am focused on more immediate questions, but some of these delay or influence how poison is ingested, so maybe....
But obviously nothing to play around with.

Posted on: Fri, 06/06/2003 - 10:32am
SkyMom's picture
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Joined: 10/27/2001 - 09:00

My dd's first reaction was severe at the age of ten months. I was eating a pb and jam sandwich and she reached out and grabbed a tiny bit of the sandwich on her finger and immediately reacted.
She scored 4++ on her skin test, allergist said it was the worst reaction to the test she had seen in her career. However, she is now five and has never had a reaction. Don't get me wrong, I'm grateful but it makes me wonder. She has not had the cap rast test yet, but will soon. Thanks for bringing up this topic.

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