Questions about testing

[lanamilo]

I started with food allergies last year at age 38.  Soy (all forms), peanuts, almonds, sesame, coriander, cilantro, peas.  I'm still having random periods of itching and hives.  Luckily no breathing problems again.

I just saw a new allergist this week.  I was dissatisfied with the care I was getting from my first allergist. 

I have negative RAST testing to everything.  The new allergist did a skin test and I came up negative to all foods.  Only positive on one tree (mulberry).  He is thinking it is a mast cell mediated response.  So he ran a tryptase level.  From what I understand tryptase is high in someone with a large mast cell reaction.  I am waiting for the results on that.

He put me on an elimination diet. So I started that yesterday.
I had suspicions about apples.  I ate one yesterday and was itchy afterward.  So that is probably a yes.  My new allergist has suspicions on corn and/or dairy intolerance. 

So what do you all know about tryptase levels, negative skin and RAST tests, and mast cell reactions?  Does anyone else have this situation?

[YouKnowWho]

Out of curiousity - were you have reactions to those individual foods or did they come up on a blanket panel?  I am not saying it's not possible to start having reactions later in life but some of those make me wonder (have also been through a series of allergists who specialized in environmental allergies, dabbled in food that have no idea what it's like to limit yourself by random testing without reactions to substantiate the limitations, kwim?) 

When you say you were itchy after eating apples - where were you itchy?  I ask because Oral Allergy Syndrome (OAS) typically causes mouth itchiness but doesn't progress beyond that.

Why does your allergist think corn or dairy intolerance?  Corn avoidance is extremely limiting diet wise.

[lanamilo]

I have had reactions to all of the foods that I know I am allergic to.  Just none of the testing shows it. I had an anaphylactic type reaction to the almonds (trouble breathing, hives, tingly tongue,asthmatic type cough for 2 months after that required steroids to get rid of).   I broke out in hives and itched all over from peanuts.  My lips swelled up and broke out in hives to coriander.  Lips swell up, hives, massive abdominal cramps to cilantro.  Soy- hives, itching all over, excema, and contact dermatitis on my face. Sesame- hives and itching all over.  Green peas- hives and itching.  Apples (raw only) make me itch all over- not my mouth only.

My new allergist didn't say exactly why he is suspecting the corn or dairy.  I already can't eat anything with soy (including oil and lecithin).

[Macabre]

I have had ImmunoCAP testing show and not show my shellfish allergy. Once it came up negative. But several times (including the last two years) has come up positive. Reactions have never not been there since 2005.

[lakeswimr]

How soon after you eat do you get those reactions?  Did they all start at once?  It is very unusual to suddenly develop more than one allergy at a time.  People can develop food allergies at any age, though.

Do you have epi pens and a written emergency plan of when to use the epi pens? 

I know some people on another site who know a lot bout Mast cell reactions but I don't know much about them.  My shaky understanding is that people with mast cell disorders can have anaphylaxis any old time without a food trigger but that might be very wrong. 

[lanamilo]

I have epi pens.  My office staff and family have epic pen instructions.


So after 7+ weeks working on elimination diet, my allergist and I have discovered several sensitivities.
Wheat and corn- absolutely!!    I had asthma problems (and excema, itching, rashes, GI problems) on wheat and corn weeks.  Without them my breathing and skin are so much better!   Seemed to have no problem with dairy.   However during wheat week, I started with weird problems with my gums.  Turns out it is my toothpaste.  After 4 toothpastes now- seems like I react to all of them.  My dentist is helping me with this.  My allergist thinks the grains may have made the reactions worse.

My allergist has me back on total elimination- veggies, a few fruits, meats, and beans are the only allowed foods.
Next week I can try eggs.
The week after rice.

Then I meet with my allergist again and keep working on other foods.  Love my new allergist!

[lakeswimr]

How soon after you eat do you have these reactions?

[lanamilo]

Usually within a half hour for the breathing/lip/mouth/itching/hives.

The eczema is usually by the next day or so.

[CMdeux]

Did your allergist ever pursue the mast cell disorder possibility?

I know that we have had a few members over the years that had somewhat similar issues-- now, mostly those things resolve once they figure out well and truly what one (or two or three) things they are truly allergic to, and avoid it successfully for a few months-- but in someone with a low threshold to an allergen, you can be getting yourself small(ish) doses from a LOT of different sources a lot of the time-- meaning that even an elimination diet isn't necessarily going to tease things apart well, because...

well-- here is one example.

If you were actually allergic to soy, for example, and you were on an "elimination week" with grains, and you felt BETTER avoiding grains, because-- hello-- you're actually avoiding... drum-roll please... most processed foods.  Nearly all of those things are going to contain SOY. 

Now suppose that you bought yourself a baggie of sliced apples-- there might be enough of a soy-based anti-browning agent (totally making that up, by the way-- but I know exactly how ubiquitous soy is) which isn't on the label because it's exempt... such that your apples made you itchy or even a little wheezy.

Later, you buy an apple, and the same thing happens-- because, see-- a shiny coating that contains soy.

The natural conclusion from that set of observations is that you are ALSO allergic to one or more grains-- because you feel so much better avoiding them, see.  Also-- apples.    But the real allergen is still just soy.  (In my example, I mean.)



That example is just to show how easy it is to conclude that a lot of things that aren't your allergens-- ARE.

The only way to know for sure is an IOFC, preferably a blinded one.  But in someone with a soy allergy, this is very very tricky because a lot of foods are contaminated.    Soy, by the way, is child's play compared with corn contamination, at least in N. America.


So.

Avoid cans, bags, and boxes as much a humanly possible.  I'd be asking for FOOD CHALLENGES.  {{hugs}}