Allergy Tests True??

Posted on: Tue, 08/15/2006 - 1:50am
GoingNutsMommy's picture
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Joined: 05/16/2006 - 09:00

Hi, all. Haven't written for a while. We just saw the allergist yesterday for our 2 kids, 1 yr and 4 yrs. Did the skin test and it came back negative for soy for my DS, which I was sure he was allergic to (via breastmilk). Also it came back positive for both of them for eggs. DD never did like eggs, but never noticed a direct reaction. And son has only had it thru my breast milk w/ no apparent reaction. 1 more thing to avoid now! and I thought peanuts were hard.

I know these tests are not 100% accurate by any means, but I'm just wondering, what do I go with, my own observation first, or the test? I have been avoiding soy in my diet and would love not to, yet I'm afraid to introduce it back in at this point.

Also, my daughter seems to feel sick all the time, either stomachache, 'scratchy' throat or vomiting etc. This is getting really old. I never know what it was she ate that seems to make her sick. Her diet is so limited already. We make everything from scratch now, like bread; and do all that we can. I call companies, and we rarely eat out. Even so she still has reactions all the time.

I would love any advice anyone can offer. What has been your experience? Is the test that accurate or does it contradict your own observations of reactions?
Thanks!

Posted on: Tue, 08/15/2006 - 2:10am
Corvallis Mom's picture
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Joined: 05/22/2001 - 09:00

Skin tests are notorious for false positives. RAST is almost as notorious for false negatives. Neither one means a d*mned thing in the absense of Hx.
So-- in your case, your allergist apparently thinks that reintroducing soy into YOUR diet is a good idea. Do you think it is okay to try it for a couple of days and see what happens? If so, try something very concentrated in protein like a safe brand of soymilk or tofu. (That way you KNOW it is the soy and you KNOW there is enough present to be a fair test.) If he is truly reacting to soy, you'll know. And at that point, nod and smile to your allergist [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] but do what you need to do.
(We've had this experience with dairy, which our daughter SPTs negative to, but clearly reacts to... )
As for your daughter, have you tried absolutely totally eliminating everything with egg in it? It isn't easy.
It sounds like she is having trouble with something else in her diet. Can you eliminate all 8 major allergens for a week and see where that gets you? Keep a food diary, for sure. And make a new appointment with your allergist to discuss your concerns for her.
If she hasn't yet been tested for environmental allergies, it sounds like it might be time. Is she on a daily antihistamine? Many of us here find that this really helps with the perennial symptoms and improves their quality of life dramatically.
{{hugs}}
[This message has been edited by Corvallis Mom (edited August 15, 2006).]

Posted on: Tue, 08/15/2006 - 2:36am
Corvallis Mom's picture
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Joined: 05/22/2001 - 09:00

I'm going to ask another question (based on the other thread you posted)...
Is your allergist aware that you are administering "Mangosteen" to your children?
DO you KNOW that neither one is allergic to any of the components?
Has either one been skin tested with a sample of it? (this is done all the time with things that the allergist's office doesn't have or keep extracts for)

Posted on: Tue, 08/15/2006 - 2:50am
GoingNutsMommy's picture
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Joined: 05/16/2006 - 09:00

Thx, Cor. Some good suggestions. But what is Hx? and SPT? I'm still learning the lingo.
As for egg, no, we haven't eliminated that entirely from her diet, as we just did this test, but I've given her whole bites of egg before without an apparent immediate reaction. Maybe it's a delayed effect.
Have any of you noticed a difference in giving something to a baby directly, as opposed to getting it thru breast milk? I never noticed a reaction when I did an elimination diet and was eating eggs like crazy one day to test him. But maybe if he ate eggs directly it would be different...
Thanks again for any advice.

Posted on: Tue, 08/15/2006 - 2:54am
GoingNutsMommy's picture
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Joined: 05/16/2006 - 09:00

Cor, we don't know anything for sure. I don't think this is an exact science. We had all these problems long before the juice, and since taking it have had less problems, that's all I know. I'm going to bring it to the allergist next week, tho, to test it.

Posted on: Tue, 08/15/2006 - 3:01am
GoingNutsMommy's picture
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Joined: 05/16/2006 - 09:00

Oh, and yes, they do know we are taking it. He said he's interested in alernative medicine and would like to know more about it
I'll have to say our experience with allergists has been less than helpful so far, however. They always minimize our experiences. The last one was very nice, but said with a condecending tone, "We can't always be sure that the excema (which the baby doesn't have on a normal basis) is food-related." Even though the baby was clear as a bell when we went in and after giving him 2 bites of spinach/potato baby food he was covered in a rash. Same thing with a cheerio.
All of the Dr.s we've been to have this same attitude. and they say there is nothing they can do for us anyway other than to try to avoid the food that we think is bothring us.
It has been a frustrating experience so far.
Has anyone else found this to be true???

Posted on: Tue, 08/15/2006 - 3:06am
jtolpin's picture
Offline
Joined: 05/28/2003 - 09:00

Pulling everything, and starting with a VERY limited (but safe) diet is key.
IRT to cooking everything from scratch...
Sorry. But these are the cards we're dealt. Until you're comfy buying 'safe' products, this IS the way of life. We do that.
In the last 4 yrs (that I Can remember), we've taken Caitlin out to eat once (where you BUY food from the restaraunt).
That's our way of life. We're used to it.
It's ok.
To me, Hx, means 'history', SPT is 'skin pr!ck test'.
Reactions trump results. If you SEE a reaction, screw the test and call it an 'allergy'.
Single ingredient foods are important. If a signle ingred is safe, add it to safe list, and move on to another.
100% viglance is key. Do not deviate. Do not 'cheat'. Once you find a 'safe' food, do NOT switch brands, kwim?
Meaning: Find a safe 'soy milk' and ALWAYS buy THAT one. Don't buy another kind (vanilla vs chocolate... or silk vs 8th continent).
Jason
Caitlin 4-17-00 Allergic to Dairy, Egg, Wheat, Bananas, Grapes, Rye, Sesame, Beef, Garlic, Mustard, Onion, Peas and Avoiding Latex and all Nuts
Sara 2-13-98 NKA (Avoiding Nuts)
Meghan 2-28-03 NKA (Avoiding Nuts)
[url="http://community.webshots.com/user/jtolpin"]http://community.webshots.com/user/jtolpin[/url]
------------------
[b]* Obsessed * [/b]

Posted on: Tue, 08/15/2006 - 3:08am
Corvallis Mom's picture
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Joined: 05/22/2001 - 09:00

Quote:Originally posted by GoingNutsMommy:
[b]Thx, Cor. Some good suggestions. But what is Hx? and SPT? I'm still learning the lingo.[/b][i]Hx=history and SPT= skin prick testing[/i][b]
As for egg, no, we haven't eliminated that entirely from her diet, as we just did this test, but I've given her whole bites of egg before without an apparent immediate reaction. Maybe it's a delayed effect.[/b][i]Severe eczema is a common delayed effect... but my DH described his childhood rxns to soy the way you describe your daughter's difficulties.[/i][b]
Have any of you noticed a difference in giving something to a baby directly, as opposed to getting it thru breast milk? I never noticed a reaction when I did an elimination diet and was eating eggs like crazy one day to test him. But maybe if he ate eggs directly it would be different...
Thanks again for any advice.[/b]
Yes-- some women tranfer a LOT more of various proteins intact, and some women almost nothing... and it can vary from one food to another and your own physical state as well. Obviously feeding it to him directly would be a huge dose compared to the traces in breast milk. Just how positive was that skin test? (In other words, I would NOT do a direct challenge like that without your allergist bieng in on the plan.)
And you should listen to Jason-- he's a real expert when it comes to living with all capitals MFA. I've worked around as many as 6 at a time-- and it is NO FUN.
But if you want answers, buy yourself a notebook, start with a single food that you KNOW (from calling) isn't contaminated with anything else, and begin writing everything that ANYONE eats or puts into their mouth in it.
We basically just see our allergist to get answers to general questions, refill scrips, make sure dosing is still correct for weight, talk about specific problems we are having, well-- you get the picture. He doesn't "do" much for us, either. But he is our resident expert witness if we ever need him, and we cultivate a good relationship. If you have an allergist that you feel isn't listening to you, find one who does. Not all of them are good with kids or with food allergies.
[This message has been edited by Corvallis Mom (edited August 15, 2006).]

Posted on: Tue, 08/15/2006 - 4:11am
Daisy's picture
Offline
Joined: 01/16/2006 - 09:00

Quote:Originally posted by GoingNutsMommy:
[b]...Also, my daughter seems to feel sick all the time, either stomachache, 'scratchy' throat or vomiting etc. This is getting really old. I never know what it was she ate that seems to make her sick. Her diet is so limited already.[/b]
I had GI food allergies as a child. After living with the stomachaches, constant nausea, occasional vomiting and sinusitis, I was referred to an Allergist. He said to avoid rice and chocolate. My parents did not take me back to the Allergist (I was 12). They thought that was it. No further testing. My symptoms continued, but I learned to keep quiet. They did not consider allergies to be a big deal.
My nausea/vomiting and later diarrhea, continued into my college years. (Was told it was IBS.) It was not until my early 30's that I was diagnosed with *allergic gastroenteritis*.
When I removed the offending foods from my diet, the nausea/vomiting/diarrhea disappeared. Amazing! And the sniffles cleared, also.
I did not experience anaphylaxis with breathing difficulty until my late 30's. I was "cheating" on my diet occasionally, and went a little too far with seafood. Had to go to the ER.
So when the Allergist says *avoid*, please take them seriously! Even though her symptoms may not be anaphylactic, they do sound like classic GI allergy symptoms.
Daisy

Posted on: Tue, 08/15/2006 - 7:08am
GoingNutsMommy's picture
Offline
Joined: 05/16/2006 - 09:00

Thanks, all. Really appreciate all the advice. I have kept a general log of reactions, but I need to do a daily food diary and some of the other suggestions.
I know, we all go thru this. I didn't mean to make it sound like I was doing anything beyond what most of the people here do, Jason. Just providing backgrd. That must be really hard with so many different allergies
Any theories on why so many kids these days have so many more/virulent food allergies??
I guess that's what I wish my allergist could do for me. Tell me why it might be happening, and make it go away! But I know that is not reality. They just don't know.
One theory I heard recently, tho, is that some of these foods are very cleansing (like mustard, which our DD is also allergic to) and that it is the body's way or ridding it of toxins. I guess that is a possibility.
Well, I guess I'd better get busy with that food diary. I also have a lot of preparing to do before we leave for vacation soon!!
Thanks again, all. and best of luck to you.

Posted on: Tue, 08/15/2006 - 2:10am
Corvallis Mom's picture
Offline
Joined: 05/22/2001 - 09:00

Skin tests are notorious for false positives. RAST is almost as notorious for false negatives. Neither one means a d*mned thing in the absense of Hx.
So-- in your case, your allergist apparently thinks that reintroducing soy into YOUR diet is a good idea. Do you think it is okay to try it for a couple of days and see what happens? If so, try something very concentrated in protein like a safe brand of soymilk or tofu. (That way you KNOW it is the soy and you KNOW there is enough present to be a fair test.) If he is truly reacting to soy, you'll know. And at that point, nod and smile to your allergist [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] but do what you need to do.
(We've had this experience with dairy, which our daughter SPTs negative to, but clearly reacts to... )
As for your daughter, have you tried absolutely totally eliminating everything with egg in it? It isn't easy.
It sounds like she is having trouble with something else in her diet. Can you eliminate all 8 major allergens for a week and see where that gets you? Keep a food diary, for sure. And make a new appointment with your allergist to discuss your concerns for her.
If she hasn't yet been tested for environmental allergies, it sounds like it might be time. Is she on a daily antihistamine? Many of us here find that this really helps with the perennial symptoms and improves their quality of life dramatically.
{{hugs}}
[This message has been edited by Corvallis Mom (edited August 15, 2006).]

Posted on: Tue, 08/15/2006 - 2:36am
Corvallis Mom's picture
Offline
Joined: 05/22/2001 - 09:00

I'm going to ask another question (based on the other thread you posted)...
Is your allergist aware that you are administering "Mangosteen" to your children?
DO you KNOW that neither one is allergic to any of the components?
Has either one been skin tested with a sample of it? (this is done all the time with things that the allergist's office doesn't have or keep extracts for)

Posted on: Tue, 08/15/2006 - 2:50am
GoingNutsMommy's picture
Offline
Joined: 05/16/2006 - 09:00

Thx, Cor. Some good suggestions. But what is Hx? and SPT? I'm still learning the lingo.
As for egg, no, we haven't eliminated that entirely from her diet, as we just did this test, but I've given her whole bites of egg before without an apparent immediate reaction. Maybe it's a delayed effect.
Have any of you noticed a difference in giving something to a baby directly, as opposed to getting it thru breast milk? I never noticed a reaction when I did an elimination diet and was eating eggs like crazy one day to test him. But maybe if he ate eggs directly it would be different...
Thanks again for any advice.

Posted on: Tue, 08/15/2006 - 2:54am
GoingNutsMommy's picture
Offline
Joined: 05/16/2006 - 09:00

Cor, we don't know anything for sure. I don't think this is an exact science. We had all these problems long before the juice, and since taking it have had less problems, that's all I know. I'm going to bring it to the allergist next week, tho, to test it.

Posted on: Tue, 08/15/2006 - 3:01am
GoingNutsMommy's picture
Offline
Joined: 05/16/2006 - 09:00

Oh, and yes, they do know we are taking it. He said he's interested in alernative medicine and would like to know more about it
I'll have to say our experience with allergists has been less than helpful so far, however. They always minimize our experiences. The last one was very nice, but said with a condecending tone, "We can't always be sure that the excema (which the baby doesn't have on a normal basis) is food-related." Even though the baby was clear as a bell when we went in and after giving him 2 bites of spinach/potato baby food he was covered in a rash. Same thing with a cheerio.
All of the Dr.s we've been to have this same attitude. and they say there is nothing they can do for us anyway other than to try to avoid the food that we think is bothring us.
It has been a frustrating experience so far.
Has anyone else found this to be true???

Posted on: Tue, 08/15/2006 - 3:06am
jtolpin's picture
Offline
Joined: 05/28/2003 - 09:00

Pulling everything, and starting with a VERY limited (but safe) diet is key.
IRT to cooking everything from scratch...
Sorry. But these are the cards we're dealt. Until you're comfy buying 'safe' products, this IS the way of life. We do that.
In the last 4 yrs (that I Can remember), we've taken Caitlin out to eat once (where you BUY food from the restaraunt).
That's our way of life. We're used to it.
It's ok.
To me, Hx, means 'history', SPT is 'skin pr!ck test'.
Reactions trump results. If you SEE a reaction, screw the test and call it an 'allergy'.
Single ingredient foods are important. If a signle ingred is safe, add it to safe list, and move on to another.
100% viglance is key. Do not deviate. Do not 'cheat'. Once you find a 'safe' food, do NOT switch brands, kwim?
Meaning: Find a safe 'soy milk' and ALWAYS buy THAT one. Don't buy another kind (vanilla vs chocolate... or silk vs 8th continent).
Jason
Caitlin 4-17-00 Allergic to Dairy, Egg, Wheat, Bananas, Grapes, Rye, Sesame, Beef, Garlic, Mustard, Onion, Peas and Avoiding Latex and all Nuts
Sara 2-13-98 NKA (Avoiding Nuts)
Meghan 2-28-03 NKA (Avoiding Nuts)
[url="http://community.webshots.com/user/jtolpin"]http://community.webshots.com/user/jtolpin[/url]
------------------
[b]* Obsessed * [/b]

Posted on: Tue, 08/15/2006 - 3:08am
Corvallis Mom's picture
Offline
Joined: 05/22/2001 - 09:00

Quote:Originally posted by GoingNutsMommy:
[b]Thx, Cor. Some good suggestions. But what is Hx? and SPT? I'm still learning the lingo.[/b][i]Hx=history and SPT= skin prick testing[/i][b]
As for egg, no, we haven't eliminated that entirely from her diet, as we just did this test, but I've given her whole bites of egg before without an apparent immediate reaction. Maybe it's a delayed effect.[/b][i]Severe eczema is a common delayed effect... but my DH described his childhood rxns to soy the way you describe your daughter's difficulties.[/i][b]
Have any of you noticed a difference in giving something to a baby directly, as opposed to getting it thru breast milk? I never noticed a reaction when I did an elimination diet and was eating eggs like crazy one day to test him. But maybe if he ate eggs directly it would be different...
Thanks again for any advice.[/b]
Yes-- some women tranfer a LOT more of various proteins intact, and some women almost nothing... and it can vary from one food to another and your own physical state as well. Obviously feeding it to him directly would be a huge dose compared to the traces in breast milk. Just how positive was that skin test? (In other words, I would NOT do a direct challenge like that without your allergist bieng in on the plan.)
And you should listen to Jason-- he's a real expert when it comes to living with all capitals MFA. I've worked around as many as 6 at a time-- and it is NO FUN.
But if you want answers, buy yourself a notebook, start with a single food that you KNOW (from calling) isn't contaminated with anything else, and begin writing everything that ANYONE eats or puts into their mouth in it.
We basically just see our allergist to get answers to general questions, refill scrips, make sure dosing is still correct for weight, talk about specific problems we are having, well-- you get the picture. He doesn't "do" much for us, either. But he is our resident expert witness if we ever need him, and we cultivate a good relationship. If you have an allergist that you feel isn't listening to you, find one who does. Not all of them are good with kids or with food allergies.
[This message has been edited by Corvallis Mom (edited August 15, 2006).]

Posted on: Tue, 08/15/2006 - 4:11am
Daisy's picture
Offline
Joined: 01/16/2006 - 09:00

Quote:Originally posted by GoingNutsMommy:
[b]...Also, my daughter seems to feel sick all the time, either stomachache, 'scratchy' throat or vomiting etc. This is getting really old. I never know what it was she ate that seems to make her sick. Her diet is so limited already.[/b]
I had GI food allergies as a child. After living with the stomachaches, constant nausea, occasional vomiting and sinusitis, I was referred to an Allergist. He said to avoid rice and chocolate. My parents did not take me back to the Allergist (I was 12). They thought that was it. No further testing. My symptoms continued, but I learned to keep quiet. They did not consider allergies to be a big deal.
My nausea/vomiting and later diarrhea, continued into my college years. (Was told it was IBS.) It was not until my early 30's that I was diagnosed with *allergic gastroenteritis*.
When I removed the offending foods from my diet, the nausea/vomiting/diarrhea disappeared. Amazing! And the sniffles cleared, also.
I did not experience anaphylaxis with breathing difficulty until my late 30's. I was "cheating" on my diet occasionally, and went a little too far with seafood. Had to go to the ER.
So when the Allergist says *avoid*, please take them seriously! Even though her symptoms may not be anaphylactic, they do sound like classic GI allergy symptoms.
Daisy

Posted on: Tue, 08/15/2006 - 7:08am
GoingNutsMommy's picture
Offline
Joined: 05/16/2006 - 09:00

Thanks, all. Really appreciate all the advice. I have kept a general log of reactions, but I need to do a daily food diary and some of the other suggestions.
I know, we all go thru this. I didn't mean to make it sound like I was doing anything beyond what most of the people here do, Jason. Just providing backgrd. That must be really hard with so many different allergies
Any theories on why so many kids these days have so many more/virulent food allergies??
I guess that's what I wish my allergist could do for me. Tell me why it might be happening, and make it go away! But I know that is not reality. They just don't know.
One theory I heard recently, tho, is that some of these foods are very cleansing (like mustard, which our DD is also allergic to) and that it is the body's way or ridding it of toxins. I guess that is a possibility.
Well, I guess I'd better get busy with that food diary. I also have a lot of preparing to do before we leave for vacation soon!!
Thanks again, all. and best of luck to you.

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