Specific Test Results

Posted on: Sat, 06/02/2007 - 1:28pm
Peanut Militia's picture
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Joined: 03/06/2007 - 09:00

A 'friend' and I were discussing PA and how we live our life. We are a Peanut Free family and have been for 5+ years. She pointed out new studies are showing that chldren can test positive, but not be allergic--expecially if they have never ingested a peanut. She knows our daughter has never eaten a peanut, but has had trace element exposure that has led to anaphylaxis.
Earlier this year we had what I would call an idiot for an allergist that basically said the same thing. He said only 1 in 10,000 kids with 'diagnosed' PA are probably allergic. Our current competent allergist does not agree with the idiot.
After these discussions and some simular with other people (teachers, administrators, people with husband's job...) I was wondering how many people do live peanut free, peanut modified (allows trace elements...), or lives by peanut faith (reactions are so small it does not matter), and what their test results are. Please say if they are prick tests or cap rast results.

This isn't intended as a my kid is more allergic to you thread. I honestly want a reality check for me and my family. I did a search on 'test results' to see if there was a simular thread and found nothing in one place. I also know that children can anaphylact with low or high levels so this isn't intended to persuade anyone from changing what their allergist is telling them. This question from my friend was presented as a 'perspective check' and I guess it caught me off guard.

Here are our results specifically to PA:
Prick test at 5 months showed a 24 mil whelp with satellite hives
Cap Rast at 2 showed 27.8
Cap Rast at 6 showed 68.9

Posted on: Sat, 06/02/2007 - 4:21pm
Sarahb's picture
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Joined: 01/22/2007 - 09:00

Peanut free to the best of our ability.
25mm wheel 50mm redness - with benedryl in his system. 3yo with two known reactions and only two known pnut exposures prior to test.
I think your question is a good one and a fair discussion. It can be hard to justify what we do to others but that's why I come here. To not let myself forget. Ds's allergist said "do not let him eat food made on shared lines with peanuts" AND "do not let him eat food that was processed in a facility that also processes peanuts". There was no doubt or wiggle room in what she told us. Sometimes it just seems to defy logic....but it doesn't. It just seems that way.

Posted on: Sat, 06/02/2007 - 9:41pm
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Joined: 05/28/2009 - 16:42

You know, I doubt that the real numbers are "1 in 10,000" are really allergic. But I would say that there are a large percentage that have been diagnosed--by testing only, no reaction, that are not really allergic to peanuts. We all know that there are false positives, so it would make sense that some who have been diagnosed are not really allergic. But if there is a reaction history, even (especially) anaphylaxis to traces, then there is little to no doubt--they are allergic.
And really, the only way to know whether someone who has no reaction history has a false positive is to do a challenge. Other than that, the only thing to do would be to err on the side of caution--and assume the test is correct.
------------------
[url="http://www.the3day.org/boston07/deedaigle"]http://www.the3day.org/boston07/deedaigle[/url]

Posted on: Sun, 06/03/2007 - 12:23am
Peanut Militia's picture
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Jimmy's mom:
I agree. If I child has anaphylacted, even to trace elements (in our case breast milk was the source), they are allergic.
I am wondering at what point parents become 'like us.' Does it take a trip to the ER? I know it seems friends that truely get it seem to be friends that have experenced our daughter having a reaction. I am also wondering how to reach out to families with PA who see how we live, but do not have the sensitivity we live with (have read posts about people who do not have high sensitivity, but are PA and not supportive of people who ask for more than they have). My initial reaction is--you are not my friend-stay away, but I want our world to be bigger.

Posted on: Sun, 06/03/2007 - 2:12am
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Joined: 03/25/2004 - 09:00

No rast- but massive weal on SPT for nuts, perscribed epis, life threatening, had several contact reactions.
House supposed to be nut free, but have spotted a couple of may contains/processed ons!
[This message has been edited by k9ruby (edited June 03, 2007).]

Posted on: Sun, 06/03/2007 - 5:13am
PennMom's picture
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Joined: 08/01/2006 - 09:00

Reaction: Bad reaction (first known) to bite of Hershey's Take 5 candy bar (peanuts, PB, and nougat)- first time at 3 yrs 2 mths we let her eat anything with "known" nuts. (Didn't have EPI- didn't know about allergy then)
Tests: Was rast tested 48 hours later- Rast was around 46.0. Also rasted positive to Cashews, walnuts, pecans- but all much lower.
Our comfort zone: Nut free house- no may contains allowed, no products that specifically state made in the same facility- but not sure if there might be a few that are made in a facility with nuts but just not labeled- I try and call as much as possible for anything DD is going to eat (unless Brand I really trust- Keebler, G Mills, etc.)

Posted on: Sun, 06/03/2007 - 6:22am
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Joined: 11/13/2005 - 09:00

DS is 3 1/2 years, last RAST 6 months ago was 4. Diagnosed at almost 2 years of age with RAST of 7. We are TOTALLY PA and TN free. Not even may contains or processed on in the house. He has never had a reaction...I never knowingly gave peanut or treenut, not even may contains. We live this way because he did have full body hives from egg and his RAST for egg is 52. He also has seasonal allergies and seasonal eczema (very mild).
We live this way because I KNOW he has the potential to react to PA, TN. I am not playing games with it. Strict avoidance in hopes he will outgrow.

Posted on: Sun, 06/03/2007 - 8:58am
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Joined: 02/01/2007 - 09:00

CAP RAST and skin testing are 50% accurate for positive results so I would say the 1 in 10,000 is pretty off! LOL! He could say at many as only one of every 2 but I don't think that is accurate, either, as most people discover the allergy via reactions.
My son has never ingested peanuts themselves or any peanut product on purpose. He has, however, had reactions to a product that contains trace amounts of peanuts. The reaction was minor. He had large reactions to ingesting sesame, dairy and eggs. He had reactions to ingesting things with trace amounts of peanuts and nuts. His peanut wheal is gigantic. His blood test puts him at the low end of the 'high' range. I do not plan to food challenge to confirm and just accept he is allergic to them because I *know* for sure he reacted to products that did not contain any of his allergens or trace amounts other than peanuts and tree nuts so the reactions were to trace peanuts and trace tree nuts. These are for sure reactions. if he had never had these reactions I probably would have wanted a food challenge before cutting out these foods past age 3-6.
In your case you have known reactions to trace amounts so that should confirm the allergy. In someone with no reactions and just a positive test result that would be a different story but really just up to those parents and their allergist. Ignore your friend.

Posted on: Sun, 06/03/2007 - 10:02am
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Joined: 11/11/2006 - 09:00

I think you are 100% correct that your previous allergist did not get it. Sadly, there are cases like Chris Clemmens, Emily Vondermeulen or others like them, where the doctors or allergists do not convey the seriousness of food allergies.
In these cases, the parent can only wish that the severity or the risk of the allergy was properly communicated or understood.
Ive heard many talk about a "mild peanut allergy" because the child has not had breathing issues--it just makes me cringe.
Reactions are not predictable. You can have hives one time, stomach cramps another and lose consciousness next.
Emily Vondermeulen NEVER had a serious food allergic reaction in her life---until her last one just over a year ago.
Peanut is a such a potent allergen and all positive results should be taken seriously.
The only exceptions that I can think of are where one has passed a challenge or when one has tested positive but has a history of ingesting peanut with no issues. (In that case, I'd question why the testing was done.)
It's true that no testing is completely accurate but Dr Hugh Sampson has done some amazing work with positive and negative predictive values. I belive the ppv for peanut is 14 or 15. So almost everyone will react with a score of 15 or above.
Take care,
Gina
[url="http://www.AllergyMoms.com"]www.AllergyMoms.com[/url]

Posted on: Sun, 06/03/2007 - 10:48am
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Joined: 09/26/2006 - 09:00

Most children find out they are allergic after reacting and then being tested to be certain. It's not like all children get tested for peanut. Only if there is a concern. My son had 3 contact reactions from peanuts then he was tested and his test confirmed that he was severely allergic and he had 2 what we believe were internal reactions because they were different from the contact reactions (from traces on furniture once and traces on safe treat that was touched by other hands.) We didn't just get him tested for no reason and then decided to believe he was allergic. I had a friend tell me maybe my allergist was wrong and that many people think they are allergic because they get tested. There is a reason, first you have a reaction, and then get tested. I never walked into an allergist's office before I had allergies. I wonder why so many people think like this.
Edited to add that there may be false positives and maybe some people need to test before actually eating something, of course, but I believe most people usually have a concern or have reacted to something and then try to find out what it is, so they go for testing and usually find out what it is.
[This message has been edited by momll70 (edited June 03, 2007).]

Posted on: Sun, 06/03/2007 - 11:03am
mtal's picture
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Joined: 04/11/2001 - 09:00

My children were tested for PA even though one never ingested it and the other possibly had one small bite. They were tested for different foods because they had a slight reaction to egg. But, their CapRast scores are very high (Class 6) so we've been peanut free for 6 years now. I just keep wondering since they didn't have a reaction, is the test really accurate? They did do a skin prick test & they developed wheels that were considered large. We will of course continue being vigilant about staying away from egg & peanut but I'm always wondering...

Posted on: Mon, 06/04/2007 - 5:36am
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Joined: 10/11/2006 - 09:00

My DD came back neg on immunocap- but a 3+ on SPT. The only reactions we know of have been GI. the only reason she was tested was because of mystery hives starting a year ago. immunocap came back positive for egg wheat and milk. (egg,very high, milk and wheat very low) Then she had the SPT. Neg to wheat, milk but positive to egg and peanuts. also pork, chicken, beef, and turkey and orange.
It is all very confusing. We are an egg free, peanut free home. Also avoid tree nuts and shellfish.
We have been to two different allergists with two conflicting ideas. Very confused.
Now we have to see a gastroenterologist due to continuing symptoms. I would like her to be tested again, but will that really make a difference?
So confused.....
------------------
Kara mom to 4, wife to 1
Elise 5- (eczema, NKA)
Mary 3- (egg, peanut, beef, pork, chicken, turkey, organge, avoiding: tree nuts, shellfish, most dairy, eczema)
Franklin 21 mos- (eczema, NKA)
Cecelia 4 mos-(NKA)

Posted on: Mon, 06/04/2007 - 6:27am
Anonymous's picture
Anonymous (not verified)

Shane was diagnosed at age 1. Did not have his first allergy test until about age 7 (I can't remember!). He has had an ana reaction to trace amounts. He has never been RAST tested, only two SPTs - he will be 14 next month.
We have a "peanut free" home but did not do so until he was about 5 and had a reaction to a butter knife with PB left on the kitchen counter (this was his first trip to the ER).
We had a 17 year old PA exchange student from Germany in 05-06. He handles his allergy with "peanut faith". Apparently there are not many peanut products in Germany. He is also not allergic to any tree nuts. I am not aware of any allergy tests nor results. He once ate a bite of a "chick-o-stick" candy. He simply spit it out, rinsed his mouth and did not have a reaction.
I KNOW if my son had bit into a "chick-o-stick" we would have another trip to the ER. (He has had 3 reactions requiring ER treatment).
There are MANY people who simply avoid - "peanut faith" types that end up with an ana reaction. If they survive, it changes their comfort zone. No matter how mild reactions have been in the past, there is no correlation to how severe the next one may be. I can only say that my sons reactions have gotten worse each time, even with very little exposure.
What type or result of allergy testing also may have little or no correlation with the severity of a reaction.
Have a blessed day,
Bridget

Posted on: Mon, 06/04/2007 - 10:18am
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Joined: 10/11/2006 - 09:00

That is what scares me. although DD has never had a reaction (unless it was GI?, she did test positive and who am I to question it? It makes me so nervous that she may some day react. My biggest fear is a reaction somewhere other than home.
Her allergist says it's ok to eat things "manufactured in a facility...." but then I hear others say any trace amounts can build up and make for a potentially deadly reaction. What do we do??
------------------
Kara mom to 4, wife to 1
Elise 5- (eczema, NKA)
Mary 3- (egg, peanut, beef, pork, chicken, turkey, organge, avoiding: tree nuts, shellfish, most dairy, eczema)
Franklin 21 mos- (eczema, NKA)
Cecelia 4 mos-(NKA)

Posted on: Wed, 06/06/2007 - 7:57am
Peanut Militia's picture
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Joined: 03/06/2007 - 09:00

Quote:Originally posted by KaraLH:
[b]That is what scares me. although DD has never had a reaction (unless it was GI?, she did test positive and who am I to question it? It makes me so nervous that she may some day react. My biggest fear is a reaction somewhere other than home.
Her allergist says it's ok to eat things "manufactured in a facility...." but then I hear others say any trace amounts can build up and make for a potentially deadly reaction. What do we do??
[/b]
As I said, we are a PA free home. When you asked 'What do we do' I can understand the confusion. On one hand you don't want to do 'extra' that results in your child living in a smaller world. On the other hand you want your child to be healthy and be alive in any sized world. To complicate the situation, each child has to be evaluated individually so it is easy to over-react. Add to that Doctors you only halfway trust and it is miserable. To me it makes it even more important to carry their meds and just be ready. Not a fun place to live, but worth it for our kids. I know this didn't help--just know you are not the only one in the boat.

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