Confused about test results / Elimination diet

[martin0101001]

Hello,

Its been just 2 weeks since i've actually tried to understand more about my allergies since it only has gotten worse.
But now i'm trying to understand some things about my test results and i hope that someone here can help me out.

So this is what my test results look like:

banana                 0.47   !    0,35/-
mushroom            0        <   0,35/-
cucumber             1.14    !    0,35/-
cabbage               2.66    !   0,35/-
mango                 0.56     !   0,35/-
rice                      0.99     !   0.35/- 
eggplant              0.81  Ku/L  ref  (  <0,35)
lettuce                 1.21  Ku/L  ref  (  <0,35)
peppercorn          0.71  Ku/L  ref  (  <0,35)
Coffee                  0       Ku/L  ref  (  Negative)

now those 2 zero's I understand..
But i just dont get what that Ku/L means!?
and also i noticed that mushroom, which is 0, has <0,35. and all positive tests have !0,35.
But the eggplant, lettuce, peppercorn also have <0,35.
Does the Ku/L stand for a very small amount or something? what does that mean?


Also i've started doing an elimination diet now.
I must say i feel kinda better now that i dont eat rice and potato anymore (those were two things i still ate before i had them tested).
I started with eating just mushrooms and steak for couple of days. then i introduced coffee. still no problems and feeling good (except for the fact i dont get nutrients yet)
so today i just first added cabbage to my diet, now this was tricky. when i was cutting the cabbage some of it came on a scratch i had on my arm and it started swelling like crazy and itching. then my hands started itching as well. also i got little difficulty breathing.
so this is where i got scared to try and eat it, so i've been googling to find out if cabbage can be eaten when cooked. after long long search i did found test results of a doctor who tested it on patients.
So i just cooked the cabbage really long and ate it. now i'm not sure if i had a very mild reaction or that i might be in my head but my throat started feeling tense and i got a little nauseous.
Does anyone also have some advice for me related to elimination diet? And perhaps some veggies or fruits that can be treated with heating / cooking?
I know i heard some things about putting an apple in the microwave, but that this may not always work because of lipids? 

Thanks in advance!

Great forum btw! get lots of useful info from here!

[CMdeux]

kU/L is a concentration unit-- this is basically how much of an IgE antibody is present in one liter of your blood.  The units are pretty standard, and the scale is, as well, given what you've posted above.


Now, the bad news-- nothing really jumps out (at least not to me)-- that is, every thing on that list looks to me as though it is (at most) 'mildly' elevated. 

That doesn't mean that you are not allergic-- but it probably DOES mean that you need to do in-office food challenges rather than trying this on your own.

What has happened when an allergist has tried skin testing you for those things?

[martin0101001]

allergist does want to do skin testing but she says that blood tests give more accurate results, and more reliable.
Not all what i'm allergic to comes out on an allergy skin test. and it does in my blood.

for instance, oranges.
Skin test was negative but when i eat them i get nauseous, shortness of breath and swollen nose sinuses

but the "<" does not mean that 0.5 Ku/L would be less then 0,35? so therefore still inside the normal?

[YouKnowWho]

I have not found blood testing vs skin prick testing to be more accurate.  If I went by what my son tests positive for - wheat, rye, barley, oats, rice, corn, egg, milk, soy, peanuts and most tree nuts on both blood work and spt testing, he would be avoiding a long list of foods he is not allergic to (we had a nutso allergist who assumed his failure to thrive was because he was eating foods he was allergic to and skipped what could possibly be genetic components like the fact that at just under 5ft, I tower over most of my family).

The reality is that my son has exhibited reactions to wheat, barley and egg (we have not tested rye because I cannot find a source that is not contaminated with wheat and he tests at a class 6, highest possible score). 

I think at this point, you may just need to do a trial with the foods you question.  I know you are exhibiting signs to orange which is negative but you need to keep in mind that reactions trump testing.

Keep a detailed food diary.  If you have a reaction, wait several days before challenging new foods because your allergy cup will be full.

[CMdeux]

I'd add that in that food diary, make notes about what ELSE you were doing-- and (I hope this doesn't offend you!) make VERY certain that you note any additional anxiety that you are experiencing, particularly if it precedes other symptoms.

I say that not only so that you have better data for yourself, but also so that a physician will respect that you are AWARE of the possibility for somatic effects-- but that there is also a way to tease apart symptoms which seem to not be somatic in nature, too.

On that list above, for example-- start with the things that have come back at truly zero values.  Coffee or mushroom.  NOT both at once.    Then work your way up from there-- but as YKW notes, try things that you:  a) haven't had objective clinical symptoms with, and b) have the lowest values for via both skin and RAST.

The other thing that I'm going to recommend is that you list what you have been eating without negative effects.  Consider that your diet, at least for now.  If you tell us that, we might be able to make some suggestions for additional foods to add which would be lower in risk. 

[martin0101001]

Thanks for your responses guys!
But i still hope someone can answer some more questions i had.
Are there any known foods that can be eaten when cooked for people who are allergic to the raw food?
And how can i be allergic to Fanta Orange? there are no proteins in that drink.
unfortunately my allergist cannot answer my questions... I think i need to find a better one. although my doctor told me this is the best one he knows of


I like the food diary idea! i've wrote down some things and i think this might help get me somewhere.
But today i tried to eat red cabbage, when it touched my skin raw i again had a reaction. but unlike the white cabbage, the red cabbage also gave me a reaction while cooked..
so i just thought it wouldn't be so bad since it has been cooked and i also heard that not all positive skin reactions mean an allergy. well i was wrong there.
Hard time breathing and just very strange in my head. tired confused etc. now i'm 99% sure that this was a real reaction and not in my head.

now how can this be?
are red and white -cabbage really be that different? 

i have no clue on what to add next. i'm scared of the cabbage now to be honest.
But do any of you have any suggestions on what veggie i should try tomorrow?


EDIT:
Oh yea and the foods i can eat without having a reaction to are just: Mushroom, cow meat and chicken.
so far i've had a reaction to all other things i've tried :S (except the long cooked white cabbage i mentioned earlier.)

it really sucks i'm starving but i dont want to get sick because i eat things i cant eat. and eating mushrooms all day also makes me feel bad since i absolutely hate the taste of mushrooms 
and i dont think i'll survive long on eating meat all day everyday with some mushrooms

[lakeswimr]

Oral allergy syndrome usually means a person can eat a food when it is cooked but not always.  Foods that can be oral allergy syndrome foods are things like apples, oranges, carrots, pears.  Oral allergy syndrome reactions are usually limited to causing an itchy mouth.  They can require an epi pen but that is in probably 0.1% of people with oral allergy syndrome.  Oral allergy syndrome doesn't cause things like stomach aches, breathing trouble, etc.  It causes an itchy mouth for the most part.

So, if you are having symptoms beyond just an itchy mouth to a given food then it isn't oral allergy syndrome.

Eggs and dairy are two foods that many can eat when baked but not when they are less cooked because the proteins become denatured when heated.  This is not true of other food allergies, though.  Peanut protein, for example, gets more potent when cooked.

Fanta may have red dye.  Red dye has food coloring at least in the usa that is made from tiny beetles so it has protein in it and people can be anaphylactically allergic to red dye.

It is possible to be allergic to any food but not common to be allergic to vegetables.

it is good you are thinking about whether or not some of this could be psychological.  It is possible some of it is.  I hope so because that would mean you could eat more things.

I would request some in office food challenges so you can expand your diet.  I'd want some leafy green veggies, some orange colored fruit and veggies. 

Sugar can't make people have an allergic reaction if you are using cane sugar so you might want some as a treat.  You can make all sorts of things from just sugar to have as a treat.

I'd also want to find a flour/grain that works and an oil.

I would not test lots of things as testing has such a super high false positive rate.  Did you watch either of those links I gave you about testing and the epi pen?

The food diary is a very good idea.

If you have been this limited in foods for longer than a few months tops it would be a good idea to get on an adult hypoallergenic formula.  Formula will have all the nutrients you need.  You are going to make yourself sick from malnutrition if you continue this way.  That could be causing some of the symptoms you are attributing to foods.

[martin0101001]

I never said i have oral allrgy syndrome, all i know is that all the food that blood and skin tests show as positive are also all the foods that make me feel very sick. usually this sick feeling goes along with breathing difficulties and confusion in my head. also very slow, cant see things normally etc. and thats not psychological.
Docters and allergist just dont help me, they dont know whats wrong and why it keeps getting worse.
I just want to live a normal life, not this agonizing slow death i'm in now.

i cannot eat grain i've been tested on all grains.
i do have an oil i bake my meat in, its some sort of corn oil i dont know how to call it in english.
further and again i can only eat mushrooms, chicken and cow meat without getting really really sick!

I know that most of you dont see this as real allergy responses but i think the basic principal is the same.
some people swell up, i just ... get really badly sick mental and physical.

[CMdeux]

Martin, what Lakeswimr is referring to is specifically called "Oral Allergy Syndrome" and it is, as far as I know, pretty much the ONLY way that a person can eat vegetables/fruits that they are otherwise allergic to in raw form, but tolerate when cooked.

It's caused when a pollen allergy causes cross-talk with a food protein-- usually this is something like birch pollen allergy and, for example-- apples, peaches, etc. 

It is not usually dangerous, just annoying, as it causes itching and oral discomfort and nothing more. 

Your symptoms sound as though they are not this kind of allergy at all, because they are clearly systemic.

Have your physicians considered that there might be something under your seeming food allergic symptoms that is causing them to be increasingly bad?  This is a very, very unusually extensive set of food allergens for someone with adult-onset allergies.  I don't say that to express doubt about your diagnosis, necessarily, but to point out that you probably need to be seeing one of the best specialists in your country right now-- and that I am concerned that your care is leaving you trying to figure all of this out on your own.

I'm also worried that you might have something other than food allergy at the root of your problems-- there are very serious conditions that can mimic food allergy rather well.  Again, a good specialist should be thinking about those things, and will have experience that a less experienced clinician lacks.

Do you have a way to objectively monitor your airways?  If you don't, it might be a good idea to invest in a peak flow meter and pulse oximeter so that you have a better idea when you should seek emergency assistance.  Those tools should be omething that doesn't rely on your judgment when you are impaired during a food reaction-- "my chest feels kind of tight, how interesting" isn't the same thing as "wow, my peak flow numbers have dropped to 50% of normal, this seems bad."


Okay, "all" grains isn't clear-- does this mean all grass-relatives?  Or grain substitutes?  Cereal crops?  There are some things in that group that are not actually related to wheat or grasses at all-- quinoa and buckwheat, for example.

[lakeswimr]

As CM explained, I was only answering your question about foods that you can eat when cooked but not when raw.  That is true in the case of people with oral allergy syndrome.  I agree with CM that it does not sound like you have Oral Allergy Syndrome, which is what I was trying to tell you.

Testing positive means very little by itself.  Tests (both skin and blood) have VERY high false positive rates.  You can test positive to lots of foods and only be allergic to some (and some people like me test positive to lots of foods and aren't allergic to any foods.)  Reaction history is very important.

You are right that some people swell up and some have breathing issues.  Not only that, a person with food allergies can have swelling one time and the very next time, breathing issues.  Your reactions can change in the future.  You do not want to be unprepared if you have a much worse reaction. 

If a food causes you to have breathing trouble that is a reason to use the epi pen. 

I have already said that you should talk to your doctors about using formula.  CM is right--you should not have to figure this all out on your own.  Someone with as complicated a situation as yours needs the best allergist possible.  I also recommend you watch the two video links I posted in the other thread about testing and about epi pens. 

[martin0101001]

thanks i have watched those videos.
and about that oas, i do notice i can eat apple sauce, but not raw apple. apple sauce also gives no skin reaction and raw apple does. So does that mean i do have oas? or is it just a common thing with apples.

btw my doctor finally send me to a better allergist. in amsterdam now. they are going to search for any other diseases that might mimic food allergy symptoms.

[Macabre]

I would say that is likely OAS to apples. We do have a member here who is allergic to apples--has anaphylaxis. But she cannot eat them in any form.

[Macabre]

I will add this confusing thing:  my DS has for years had rashes when eating raw celery. We thought it was OAS until one picnic where his food had cross contact with the celery. He didn't eat it it rich the celery directly. But he developed hives after eating the cross contaminated food. And he has tested positive (InmunoCAP). So we do treat it as an allergy.

However, he is fine with cooked celery.

Weird.

I don't buy celery, but if he's eating a progresso soup with cooked celery in it, I don't worry about removing it.

I know he's allergic to celery, but I don't really list it among the allergens as it's so easy to avoid. Like shrimp for him. He is a vegetarian. And I am allergic to shrimp and avoid it. So it doesn't really affect him. In my mind, he's really just allergic to peanut.

[CMdeux]

I would say that is likely OAS to apples. We do have a member here who is allergic to apples--has anaphylaxis. But she cannot eat them in any form.

I would, as well.

OAS is one of those funny things that isn't entirely understood.  It is certainly food allergy, but seldom results in systemic symptoms.  Even less often does it result in serious anaphylactic responses, and the amount of the allergen needed is usually pretty large (actually EATING it, not just cross-contact)-- but--

there are definitely a few members here whose fruit/veggie allergies started out looking exactly like classic OAS, but which have evolved into something more like a classic/true "food" allergy with time-- lower threshold, no more cooked tolerance, and much more severe symptoms.

The other thing to be aware of, Martin, is that Europeans seem to have a different allergy to birch pollen than N. Americans do (that would be the majority of us here).  So there may be differences in your own manifestation of OAS that reflect that regional norm.

I'm SUPER happy that you're seeing a big-city specialist in food allergy.  REALLY pleased for you.   

[rebekahc]

If you're allergic to mugwort pollen, then your cabbage reactions could be related to that.  Celery, onion, mustard and cabbage are all cross-reactive with mugwort.

Is it possible, something environmental or a non-food ingestion could be causing your allergic symptoms and they just seem to be linked to food?