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Baffled By Docs And Tests...again


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#1 VydorScope

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Posted 03 August 2012 - 04:54 PM

SOOO...

3 or so months ago, we took my son in for food allergy testing, and BAM he came back with:

Milk, Soy, Almond, Oats -> positive via scratch test
Egg -> positive via blood test, no other positives via blood test

With Milk being a reaction of 5 on a scale of 1 to 5. So we took him off all of those and he did not get any better. So we took more foods away... and then took away all artificial drinks (he has only been drinking pure water for weeks) and still not better. So we take him back and ask them to redo the testing and now the test says...

Egg and Peach positive via scratch test, with Milk and Soy COMPLETELY negative (as in 0 on a scale from 1 to 5).
(did not retest Almond and Oats)
:|

So doc took some blood to test for something he called Alpha-gal or something related to red-meat that he said might cause these kind of mix up. He is also checking for some kind of auto-imune disorder where the body reacts to its own histamines??? :blink:

So I am like, uhhhhh... now what? Is it normal to have that much wild difference in the scratch tests?

So far only removing gluten from his diet has had any impact, but it has only gotten him like 80% better.

Can I borrow a clue from anyone? :D Thanks!
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#2 StephanieL

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Posted 03 August 2012 - 05:08 PM

Is this a board certified allergist?

I will say that blood OR skin testing is only 50% accurate for a positive and 90+% accurate for a negative. So not knowing your story, if he was eating those things with no issue, I wouldn't take them away but I am also not a Dr.

Immunology sucks!!!
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#3 GFinDC

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Posted 03 August 2012 - 05:13 PM

I don't think most allergy testing is super reliable really. I had pretty bad hayfever allergies for years but they cleared up after going gluten-free. I believe when our immune systems are reacting to something it is not totally a local event. I believe gut reactions can cause other immune reactions like IgE reactions to flare up. There are threads on the forum about people whose hayfever or other IgE reactions subsided after going gluten-free.

I read an article several years ago about a researcher who sent identical blood samples to different labs, and they both came up with very different allergy results. So she sent them again and they came up with different results again and they were not consistent with their own first results. I don't remember for sure the test, I think it was RAST test. But it is not an exact science.

I'd guess the Timster is still eating something that doesn't agree with him. And it may not be gluten, it could be any number of foods including any of the top allergens or nightshades, or dairy, or corn, or soy, or who knows? We aren't all the same and our bodies seem to pick their own foods to react to. Like carrots and grapes for me. How many people do you know that have problems with carrots and grapes? But we can become sensitized to any food, it doesn't matter what it is.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#4 VydorScope

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Posted 03 August 2012 - 06:37 PM

I'd guess the Timster is still eating something that doesn't agree with him. And it may not be gluten, it could be any number of foods including any of the top allergens or nightshades, or dairy, or corn, or soy, or who knows? We aren't all the same and our bodies seem to pick their own foods to react to. Like carrots an dgrpaes for me. How many people do you know that have problems with carrots and grapes? But we can become sensitized to any food, it doesn't matter what it is.


To be fair, I can not even be sure of no CC in the last say month or 2. We have had several emergency trips, including one evacuation. So we have not exactly had solid control over his environment. And just to keep on top of it, he is leaving for summer camp on Monday. The camp nurse knows his case very well (she actually is the nurse practitioner at his docs, doing volunteer work down there!) but still.. its an 8 year old away at camp. Yeah.. sure he wont sneak food. :rolleyes:

I personally am slowly becoming of the opinion the only real food allergy he has (other then Celiac) is Egg.

Just wish there was more objective science and less "practice" in Medicine. :(
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#5 VydorScope

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Posted 03 August 2012 - 06:38 PM

Is this a board certified allergist?



Yes. :D Highly recommended as the best in our town.
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#6 StephanieL

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Posted 03 August 2012 - 06:44 PM

Yes. :D Highly recommended as the best in our town.



Good! I hear a lot of people tossing around allergy stuff but not seeing an allergist.

I think looking into histamine response issues is a fair place to start. Maybe if they are still at a loss have them call up Dr. Woods in Texas (I think???) I hear he's tops in the field!
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#7 Takala

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Posted 03 August 2012 - 11:52 PM

These allergy tests are sort of frustrating. When I was a child, I was hyper sensitive to so many different things in my environment and it was because NOBODY could connect it with the gluten that was actually causing the problem. I think I reacted to almost everything on the scratch test, for a while I was on this really restricted diet that did absolutely nothing, because there was still wheat, of course. Slowly I just added the supposedly bad foods back, because there was no difference.
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#8 VydorScope

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Posted 04 August 2012 - 03:32 AM

These allergy tests are sort of frustrating. When I was a child, I was hyper sensitive to so many different things in my environment and it was because NOBODY could connect it with the gluten that was actually causing the problem. I think I reacted to almost everything on the scratch test, for a while I was on this really restricted diet that did absolutely nothing, because there was still wheat, of course. Slowly I just added the supposedly bad foods back, because there was no difference.



That is kind of what I am wondering. Could gluten be causing the scratch test to be wrong? He was not gluten-free during the last round of scratch testing.
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#9 StephanieL

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Posted 04 August 2012 - 06:09 AM

Being on gluten won't cause the testing to be off. The testing just isn't really that reliable to begin with. If the Dr is suspecting a hystamine issue that could explain the strangeness of the tests.
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#10 GFinDC

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Posted 04 August 2012 - 06:37 AM

Here are some threads discussing allergy testing. It is not so great a process. That it works at all is something to be grateful for I guess. But the stories from posters on this forum indicate that allergy tests and reactions can be greatly affected by eating gluten.

Seasonal Allergies Better?!?!? gluten-free Helping with this perhaps?

96-Food Allergy Test

Camp sounds scary, What's he going to eat there that is safe? Is he bringing his own food, or are they making gluten-free food for him? Or is he taking a large bottle of Pepto Bismol and some aspirin? Maybe a box of Larabars for snacks?
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#11 VydorScope

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Posted 04 August 2012 - 08:56 AM

Camp sounds scary, What's he going to eat there that is safe? Is he bringing his own food, or are they making gluten-free food for him? Or is he taking a large bottle of Pepto Bismol and some aspirin? Maybe a box of Larabars for snacks?



We are sending food, and have done our best to educate him. The camp nurse knows his case well, so that is about the best we can hope for there. Other then deny him camp, its really the best we can do.
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#12 StephanieL

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Posted 04 August 2012 - 11:50 AM

[quote name='GFinDC' timestamp='1344091039' post='815948']

Seasonal Allergies Better?!?!? gluten-free Helping with this perhaps?

96-Food Allergy Test


Those aren't testing that an allergist would do. Those are alternative practitioner teting which are 1) not for true allergies and 2) questionable at best.
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#13 GFinDC

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Posted 05 August 2012 - 12:28 PM

We are sending food, and have done our best to educate him. The camp nurse knows his case well, so that is about the best we can hope for there. Other then deny him camp, its really the best we can do.


Sounds good Vincent, he should be fine. They might be able to provide fresh fruit for him, and boiled eggs. Shoot, most canned fruit is fine for that matter, or frozen too. I imagine he will have a blast!
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#14 VydorScope

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Posted 05 August 2012 - 12:45 PM

Sounds good Vincent, he should be fine. They might be able to provide fresh fruit for him, and boiled eggs. Shoot, most canned fruit is fine for that matter, or frozen too. I imagine he will have a blast!


...cept he cant have eggs. ;) Also he does not understand that fruit is food... :rolleyes:
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#15 GFinDC

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Posted 06 August 2012 - 08:27 AM

...cept he cant have eggs. ;) Also he does not understand that fruit is food... :rolleyes:


Oh, so that's why they put those signature lines a the bottom, now I get it! :) Guess the better not make him any eggs then.

Ah well, maybe he will grow to like ftuit after he gets a little older. I like to put cans of sliced peaches in the refrig and eat them on hot days. It's sorta, kinda like ice cream.

Well, If he does want a simple home made treat, these microwave peanut brittle recipes are pretty flexible. You can a use any kind of nuts, seeds. or dried fruit (horrors!) in them, sunflower seeds, coconut etc.

Microwave Peanut Brittle
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul


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