Anyone else have gastrointestinal anaphylaxis?

[Von]

Hi all:

I am in the middle of trying to figure out what I'm reacting to, though to date all my prick tests have been negative to foods and the blood tests haven't come back yet.  So far I've had two bouts with gastrointestinal anaphylaxis, the first accompanied by standard symptoms as well (hives, trouble swallowing, swelling).  Today was my second attack and the gastro symptoms were WORSE but I only got a few hives.  It responded well to Benadryl and Tagamet.  But I'm telling you, I'm terrified that this is going to happen to me when I'm outside the house.  I can't imagine suffering through that kind of pain in a store bathroom or something like that.  And I still have no idea what is causing the reaction.  I didn't eat any of the same foods as I did the first time, I didn't eat any known allergens (tomatoes and eggplant), nor did I have any other nightshades.

So, does anyone else out there have this sort of reaction?  How do you deal with it?  Any tips or tricks?  I'm just sort of reeling right now and I'm getting paranoid about eating anything or being far from home.

Thanks,

Von

[hedgehog]

I'm sorry you had to find us, but welcome.   

First, and most important, do you have an epi-pen?  If not, GET ONE IMMEDIATELY.  Call your allergist and ask for a prescription.  Fill it, and KEEP IT WITH YOU.  ALWAYS.

It must be very hard to deal with an allergy when you don't know what you are allergic to.  I hope you get some answers to that soon.

[twinturbo]

Get a prescription for an Epipen twinpack or a Twinject, carry the antihistamines but also consider getting a standing prescription for a tryptase blood test if you find yourself in the ER for a reaction. It could show whether mast cells were activated.

Per Dr. Li of Mount Sinai Jaffe Food Allergy Institute, she recommended against skin testing for fresh fruits and veggies for me because allergists often use synthesized proteins that aren't close enough to fresh proteins to provide accurate results. But I imagine if you find a good food allergist and bring in the fresh stuff it would work.

Thus far I have all GI symptoms plus some hives on lips, red marks around lips. My only "trick" is to stay away from raw produce for the most part, eat very simple ingredients or rely on canned products when in doubt since the canning process reduces many of the allergenic qualities of fruits/veg. So simple, canned, cooked. And typically I eat very, very slowly these days. A bite then wait ten minutes, another bite wait five minutes--not always but typically.

[Macabre]

Yes. I wonder if we can dig up the thread on this.

For some foods symptoms appear after 20 minutes but for shellfish they appear at the two hour mark. This mystified my allergist initially as symptoms generlly occur within the two hour window.

GI Ana can be dangerous. There is an association with loss of blood pressure. That thread would be great to dig up too. I have had to epi before. Get one. Also I prefer liquid benadryl for GI stuff. You just feel it hit the spot.

[lala]

My ds has gastro reactions, once within 2 hours but 2 reactions 4 hours after ingestion.  He carries an Epi everywhere.  His blood pressure also drops.  It's SO scary.  You never know if it's a reaction or stomach flu.