Some Results

[jenavy21]

I received some test results today from my primary.  Initially she did basic labs morning after hospital reaction and did basic panel based on what I told her for past 2 weeks.  They called today and the IgE results for that came back.   She actually didn't retest sesame because it was not part of the basic panel.   But peanut came back .01 higher than it was a year ago.  And Soy came back .03 higher.  I had been previously tested for corn and that was very low and old allergist told me that was fine.  That level is now double what it was before, which I am guessing not the best sign and that could explain a few other reactions I have had with unknown problems.  And wheat is also showing positive in same range with the others.  I don't know if that is an increase since they never tested before, so I am hopeful that might not be a real allergy. 

The part that really confuses me is these are all still considered Class 1.  But it just seems like with reaction I have should be higher class.  I know I have been told not to worry about that level, but it just doesn't make sense to me.  Everything has increased though.  Allergist drew blood 6 days after primary and his testing is much more involved with way more things.   So it will be a while before we get those.  Corn is something I haven't really wanted to eat since original reaction a couple years ago.  And by being very strict with making from scratch that is easily prevented and I was already cutting out soda just in case the "natural flavors" were causing problems.  I think for wheat I am just going to be careful.  I can't eat bread that is store bought anyways so I have to make it, so I am thinking I will just be very minimal (maybe eat small piece of cake I make for son's birthday, but nothing else).  And see how I do so I can try to get reaction free for a while. 

[lakeswimr]

If you are allergic to a given food (IgE mediated food allergic, the type for which you carry epi pens), then you should avoid those foods 100%.  The only exceptions to this are things such as if you are someone with a milk or egg allergy who can eat baked milk or eggs.  In milk and eggs, cooking them makes the food less allergenic.  That is NOT the case with other allergens such as peanuts, which become more potent when heated.

So, if you are allergic to a food you should not eat it.  There is no reason to 'being careful' and mostly avoiding a food.  If you can eat a food and not react you are not allergic to it by definition.  If you have been eating corn and wheat and not reacting or you think you are only reacting to them sometimes, then it sounds to me it is something else causing your reactions, not the corn and wheat.

It is extremely difficult to avoid all corn.  It is in more things than anyone but those avoiding it know.  It can be listed by many different names and does not have to be listed on food labels. 

Testing can NOT be used to diagnose a food allergy.  It has a super high false positive rate.  Levels on food allergy tests mean little to nothing.  If a person has has a for sure past reaction then a level can help determine when a person may have outgrown a food allergy but not all that much else.  A person can test very low and have a severe allergy to a food.  A person can test very high and not be allergic at all.  The amounts by which your tests went up are negligible.  If you have not seen a for sure IgE mediated food allergy to a given food on your list of things that have tested positive the result means very little.  If you have been eating those foods without reaction then the results don't mean you are allergic. 

If you are allergic to a food you would see IgE mediated food allergic reaction symptoms start within minutes to up to 2 hours (and almost always within minutes to 30 or at most 45 minutes) of the time you ate the food.  And as long as you had enough of a dose of the food to cause a reaction (in most people this isn't a very big amount), you would see it every time you ate that food.

Is the doctor telling you all this? 

Did you have a for sure reaction to sesame?  If so I think your effort would be better spent figuring out how to avoid sesame (by calling companies, reading info here about it in the seed forum) than by trying to avoid things based only on testing if that is what you are doing with wheat and corn.

Here is a link that talks about the high false positive rate of testing.

http://www.pediatricallergyindy.com/2011/10/04/oral-food-allergy-challenges/

[jenavy21]

Thank you for your input.  BUT........

YES I have had multiple anaphylactic reactions.   YES I carry EpiPens.   YES I understand how IgE reactions occur and that it means to AVOID all the time.   YES I have reacted to Sesame.  and YES EVERY reaction I have had while eating has happened within MINUTES.  From the very first reaction to now I know if a MISTAKE has occurred within a few bites.

My current situation is a bit different right now.  In that we have moved and I am being exposed constantly given my current environment that cannot be changed at the given moment.  We are all trying to figure it out.   I have been having MULTIPLE reactions to SOMETHING that we are trying to find under lying cause.   

I am FULLY aware that sesame is in multiple things, I do not need to be told that over and over again.  It is NOT in my house.  And it is NOT caused by contamination in MY house.  There are several things I was eating before and cannot eat that do have Corn in them.   Corn is also EVERYWHERE on this property right now along with peanuts and other nuts.  I am FULLY aware of everything that corn is in.  But Lucky for me I would say about 75% of that already contains soy or any other possibility of contamination so is not eaten or brought into this house.   We are MAKING everything from scratch and are very careful with what is purchased to make those things.

As for the wheat........   Like I said I am unsure about that one.  So in the meantime while WAITING for more testing I am going to limit it and CONTINUE to write things down for my ALLERGIST.  Most things I have been reacting to do have wheat.  BUT they have also had other things or possible contamination.  That is why we have gone back to everything from scratch.   

Also I understand possibility of false positive.  In my current case they cannot get me off the meds to do scratch testing because of constant reactions.  So we are trying to do what we can to get it that way for a couple weeks to use scratch testing as well.   We ALREADY know that I have SEVERE reactions to peanut, sesame, and soy.   

YES a doctor is telling me this and NO I am not self diagnosing anything.  I understand that you think you are helping, but in my case it came across as pretty condescending.  But I might just be a little "overly sensitive" right now, so if that is the case then I apologize if my tone seems a bit irritated.  I am FULLY aware of things and do NOT need any lectures or anyone trying to teach me something as if I am a child.  But regardless of how the level means "nothing", I do find it very interesting that I can have a severe reaction to something with a low class level when I do in fact have environmental allergies classed at level 5 that I do not react to as strongly.  That just seems weird to me.

[CMdeux]

It is weird.  I mean-- just in a larger sense, that kind of thing is weird...  around here, though, you'll learn that many people have had that experience.  Or the opposite one, where an allergist runs "a panel" and comes up with class 5's or 6's to things that the person eats all. the. time with absolutely no reactivity.   RAST values may paint a clearer picture... but they can also (in some instances) muddy the waters.  I'm really disappointed that this seems to have been the case for you, jenavy. 

Silver's initiation to adult-onset food allergies is remarkably like your own, jenavy.  She, too, had the experience of (initially) not testing positive to her allergens... but testing positive to a few other things... and having constant reactions because her avoidance of one of those allergens wasn't yet "good enough" to keep her body from going into constant overdrive and reacting to OTHER stuff.

Corn/wheat would be very very very unusual-- and I say that even in the context of adult-onset allergies.  Seeds, shellfish, and nuts are (just speaking anecdotally here) about 95% of adult-onset food allergies.  The remainder is mostly fishes, and rarer allergens (kiwi, bananas, some fruits, tick-meat-allergies, etc.)

PS.  I know that Lakeswimr is just trying to help you out of concern that you might not know some of that stuff.  It is important... but you do know. 

So, if you are allergic to a food you should not eat it.  There is no reason to 'being careful' and mostly avoiding a food.  If you can eat a food and not react you are not allergic to it by definition.  If you have been eating corn and wheat and not reacting or you think you are only reacting to them sometimes, then it sounds to me it is something else causing your reactions, not the corn and wheat.

I do think that is probably good advice.   

Have you considered asking your allergist to do some open challenges to things that you HAVE been eating that came back class 1?  Like wheat or corn?  I'd think that he'd probably be comfortable even doing that in-office.  The other thing that (IMO) you probably REALLY need to know is whether or not you're truly allergic to soy, and if so-- if you tolerate lecithin/oil.  Now, I realize that you can just "avoid" soy... but I also know from brutal experience that being MFA and needing to actually.... eat... means that you are FORCED to accept some trade-offs for safety with multiple allergens.  This is how we wound up using bulk foods, basically... because there was no reasonably way to avoid multiple grains without doing that.  I had to use Bob's Red Mill for flours.  Even though I knew that they ran tree nuts on that line.  I had to accept that trade-off in risk in order to avoid wheat/oats/rye/barley. 

My DH avoids soy.  He's fortunate (in some ways, anyway) that his allergy seems to be an atypical one-- he tolerates the seed storage protein fractions better than oils/lecithin.  And yes, it's soy, yes it's really an allergy, and yes, it is SERIOUSLY a pain in the watoosie.  I am here to tell you right now that needing to avoid lecithin and oil completely is a Herculean feat-- neither thing MUST be labeled.

[CMdeux]

Another seed to put on your radar--


sunflower.

Food for thought, so to speak. 

[rebekahc]

I wonder if your body is reacting to corn or wheat simply because it's in hyper-drive right now due to the constant environmental exposures you're having to sesame and peanuts/nuts?  Maybe "false positives" aren't completely false - it's just that tolerance level is so high that under normal circumstances one wouldn't react until a dose so high it wouldn't be practical for it to ever happen.  Perhaps, due to your allergy cup constantly being on the verge of overflowing, a normal dose of wheat/corn/whatever is enough to cause reaction?

When DS was little he was having frequent reactions - so many it was impossible to narrow down suspect foods.  Our allergist did SPT and had us start avoiding those things with the largest wheals (even things we thought were ok).  She also ran RAST tests.  We compared the results and foods that were similarly positive on both were what we used as a starting point.  We eliminated those from his diet for several weeks and then added things back in one by one to see which caused reactions - except for eggs and peanuts which we knew he had reacted to.  When we tried wheat, he immediately had an asthma attack, so even though we thought he was tolerating wheat, it turns out he wasn't.  Of all the things that had similar results on both skin and blood tests, the only one we didn't see a reaction from after strictly eliminating was milk.  He tested highly positive to it, but no noticeable reactions at that time, so we were able to keep milk in his diet.  I don't think we would have ever been able to pinpoint all the things DS was allergic to without using the approach we did.

On a side note, when DS was 7 we were able to get him on Xolair for his asthma which helped tremendously with his food allergies.  Once on Xolair he was able to eat all the foods he was allergic to except for nuts/peanuts.  He has been off of Xolair for several years now and is still able to tolerate many of his previous allergens BUT he developed reactions to milk - the one he had always tested positive for but hadn't shown symptoms. 

[CMdeux]

My DD had the exact same problem at 6yo when we started doing immunotherapy for her aeroallergens-- she had always tested (via RAST, but not SPT) allergic to milk...

but hadn't been symptomatic since she was about 10 mo...

then suddenly at 6yo, her tolerance for milk vanished overnight.  She slowly regained ground over the following 6 years-- but when she was 6-8yo, her avoidance had to be complete.  Not even butter or shared lines, at one point.  By the time she was ten, she could tolerate baked milk again.

Yup.  Weird. 

We theorize that by pushing DOWN hard on one part of the raft of her immune system, we caused another part to pop up above the waterline again.

We saw the same thing briefly when she began dosing with baked egg-- she had a reaction to an allergy shot (which hadn't happened in a few years)-- two months in a row. 

[jenavy21]

CM,
Unfortunately when it comes to Soy, we know that is a definite allergy and I am unable to tolerate lechitin and oils.   Which has meant no chocolate or candies for a couple years now with exception of the Enjoy LIfe brand.  And I had a HORRIBLE sweet tooth for chocolate and things like reeses.     

Sunflower is something we have thought about and that is another that we could see causing more problems here with the amount of sunflower seeds round with animals.  One he is checking for.  But I have been able to eat enjoy life cookies (only thing boxed in our house) without incident and they contain sunflower.  Also when we drove cross country I ate sunflower seeds as a "snack" to help keep me awake when driving without a connected issue that we know of.

I talked to him about food challenges and we are pretty certain that is the path we are headed down.  Just trying to start some where to sort it out.    I personally do not think wheat is a problem, but for the next few weeks I can limit it in hopes that helps other outcome.  I know by staying away from soy, sesame has been very easy for me.  Except when I made a stupid mistake like the Pita bread (things we never buy pre-made).  So Sesame has been easy to avoid for me.  But have been exposed (inadvertently more through inhaled or touch) and reacted.  Even my parents are being extremely careful with nuts and sesame etc at their house.  They have stopped feeding it to the birds and when my kids go over there they have snacks and a very strict wash hands, wash mouth, and teeth before coming here.  If parents have eaten it they don't come in.  And reactions are subsiding so I am getting there just slowly.

Rebekahc,
He and I talked about hypersensitivity and he said he is guessing that is going on.  That we know there is a trigger just trying to find to eliminate.  He also thinks that is playing into why reactions have become inhaled only, guessing something is triggering asthma and I am reacting overly sensitive.  I am just trying to do what I can to eliminate use of antihistamines for a set time.  Like he said he knows I need it daily, but if I can get off for 7 days we can start some where.  So I kind of look at it if I can stay away for a few weeks and find root cause in the end, I am all for it.  Unfortunately we have 3 birthdays this month and I really enjoy making my kids cakes.  lol  We have given up on making their lunches at home to make sure they can enjoy things that we really don't want in the house.  So they both buy lunch at school and get treats etc that they can eat there.  It's more expensive, but for time working better for everyone.

I guess on the flip side with really cutting out foods that are bad for us anyway, I have lost baby weight from them.  So it is a plus side!!   

Lake, I am sorry for being snappy.  I really do appreciate advice and input from everyone.  I am very overwhelmed and cranky (sick baby and sick daughter), but that is no excuse.  So I apologize.  I do know exactly what you mean about false positives and I am hoping that is the case with those two.  I told hubby I keep hoping they come back and tell me I am just crazy and give me a crazy pill so I could eat peanuts again.  But unfortunately don't see that happenning.      I will say for me it is ironic that I developed this.  I had HORRIBLE sweet tooth.  AND reeses cups and butterfingers were a big staple in my diet.  I used to make comments like I don't know what I would do if I was allergic to peanuts......   Guess I found out. 

[jenavy21]

This whole time I thought food allergies didn't run in my family and even other allergies. 
Found out mom was allergic to milk as a child. 
Brother and Sister were, but grew out of it.  Although I think it was more of an intolerance than anything else.
Sister and Mom both had to have allergy shots for environment.  Sister when younger and mom through high school.
And brother allergic to bees as a child.  Although do not know if he has been tested recently. BUt know he hasn't been stung in years.

[CMdeux]

Isn't that a funny thing, finding out about all of the severe allergies in extended family after the fact?

Suddenly you hear stories about extensive boiling of goat's milk for babies who were "FTT" kids by today's standards (I was one of those babies, btw).

I was allergic to milk, eggs, and probably something else as a baby, then outgrew those and developed OTHER allergies throughout childhood. 

My response to developing SFA in my late thirties was... Oh nooo... {sigh}   well, it was a nice run while it lasted. 

on losing some of your favorite foods to eat.  I know just how much that sucks.  MAN, do I miss Dungeness crab.  PB I can totally live without.  Seafood hurts me.  Well, it does literally, now. LOL.   But in a metaphorical sense, it hurts my quality of life not to have it.    Still-- better than the alternative.
Signed,

The world's cheapest date for the all-you-can-eat seafood buffet.

[twinturbo]

Whatever it is about the birds and bird food mix. Like some sort of seed sensitizing purgatory.