Ask your Dr. for Epipen prescription if you haven't got one yet. Self carry the epipens at all times. Best most discreet and comfortable options are the undergarment belts and leg holsters. Check them out at amazon, etsy, and epicarriers web stores.

Happily,
Many of the severe reactions have subsided.
However many of the symptoms still are here.

We have eliminated milk completely. Soy seems to be working well. If I do consume milk on accident in items I am out of it for 2 days and just tired as well as getting hives, coughing and being light headed.

We have discovered that lots of meat brines will cause a reaction. Particularly in Pork loins etc.

Veggies are still an area, but I get a rash and it goes away an hour later. This seems to be pretty minor. Granted we always monitor and have the pens ready to go. 

I tried almond milk -especially for baking- and felt off, runny nose, coughing etc.  from that. Tossed it aside as cross contamination after reading the label. Tried a granola bar same reaction. Then got some honey roasted nuts ( on the way to a friend's wedding of course- stupid stupid move) and had to take 2 benadryl and was about to use the epi when things started to settle down. Since then I have avoided nuts, but seem to do fine on items that are manufactured on shared lines. (Still very careful though).

We were eating out on a rare occasion at a restaurant we found and trust. We checked regularly to see if they had added shrimp/shellfish to the menu as they were new (owner and chef had food allergies and were GREAT about cross contamination as much as you can be). They told us they had not, then as I was eating my meal the owner rushed up and informed us the Chef and indeed added it. I had been feeling dizzy in the restaurant, and he told me they were deep frying in the back. We left and he apologized and paid for the meals. I was tired etc for the next 6 hours and got some hives, but it did subside.  So, we're back to eating out nowhere... oh well.

I suspect some of the veggies may be just that. I have been getting multiple symptoms- hives, thick mucus feeling in throat, itchy, stomachache. With the zucchinni it seems to only be oral symptoms.

Are the new foods in your most recent post giving you full fledged reactions or just hives around your mouth?  It's possible to have oral allergy syndrome for some foods--especially fruit and veggies.

Cut milk out and it seemed to have helped. Tried some Tofutti "dairy Free" cheese- but after feeling terrible and getting a rash and throat symptoms put together that it still had lactose in it.

New things I'm reacting to" peppers, zucchini, cucumbers, radishes at times apples.

I have to watch the sauces. Some spaghetti sauces have given me a rash. some spices are doing it. The only salad dressing I have been able to eat successfully are non dairy, olive oil/balsamic based.

Almond Milk gave me a rash, and mucus feeling in my throat- we stopped that.
Soy Milk still makes me phlegmy, but no rash.

Brownies, cakes and other items have caused rashes etc.  The worst was my homemade cookies making me feel ill and itchy with lots of throat swelling- in the process of reworking the recipe to eliminate butter etc.

Trying to keep a semi balanced diet while we wait for the next visit in October- lots of salad, grilled lean meats, veggies like carrots and celery. Any ideas to add some more variety to it?

Good luck figuring things out and feeling better.

Quote from: CMdeux on August 13, 2012, 06:16:17 PM
Maybe once you can get your immune system to calm down a bit, you might be able to introduce milk again in moderation.(That has worked pretty well for my DD with milk, btw.  But it's taken many years to get to the point where she can actually eat dairy products without tracking her intake fairly scrupulously.) 

This is the case for me with a few things.  When it's not pollen season, I can do small amounts of tomato, barley, and bananas.  But I have to keep track and not eat too much...if I had a meal with all three, there would be hives for sure.  Not a serious reaction, but enough to be uncomfortable.

The plan is to avoid milk- we're switching to soymilk for now and seeing if that sits ok.  It appears to be so far.

My Dad, who is also SFA suggested the cashew/peanut/seasame and I have had no problems with them so far.  A few weeks ago I ate Honey roasted peanuts and had no reaction. We have not tried anything lately other than peanut butter- and I really don't eat much of that in the first place.

We've started tracking foods I'm eating. Avoiding milk etc.

The last reaction I had was after a couple bites of mac and cheese.  Hopefully we can bring this up with the allergist and have some data to provide to him as well.  I'm hoping that the daily zyrtec I'm on will help too.

Let the detective work begin...

What happens if you avoid milk?

You're very clearly seafood allergic, no matter what the specifics of that one turn out to be.  That one's obvious-- avoid. 

I just wonder if you might be able to do an IOFC with milk if you can avoid it until your next visit with your allergist.  It'd be really really bizarre to develop a milk allergy as an adult, so what I'm thinking is that maybe you've been sensitized to milk most of your life and just not known it until your recently developed shellfish allergy pushed your immune system over the edge.


Maybe once you can get your immune system to calm down a bit, you might be able to introduce milk again in moderation.(That has worked pretty well for my DD with milk, btw.  But it's taken many years to get to the point where she can actually eat dairy products without tracking her intake fairly scrupulously.) 

??  This is about the only logical thing that I can come up with, honestly.  The pattern that you describe is one that doesn't add up well with SFA alone-- which I think you knew.  It is puzzling, to say the least.  It implies a second allergen.  I'm betting on either milk in non-trace amounts, or maybe a super-potent allergen like a peanut/cashew/sesame.

Have you eaten foods that would contain those things without incident recently?  That might narrow things down as much as the circumstances of what caused reactions, at this point.

We just got back from a wedding. We took the extra precautions as we were in a hotel and eating out that we cooked and brought all our own food and snacks. The only things purchased were drinks that we normally drink at home. The closest hospital was an hour away so we felt the need to be extra careful. I did take a piece of wedding cake, after asking where it was made. Steve was in the party- so I got lots of access to figure out if things were safe! The baker dropped off the cake and assured me no allergens were present at the facility or baked with it. I met with the owner of the reception hall and he assured me that he could accommodate my food issues.

More questions keep arising, and the allergist is not planning on doing anything more until October.  All testing has come back inconclusive and I think he's as confused as we are. He told me to keep avoiding the triggers as they did cause 2 cases of anaphylaxis- but this weekend we had several reactions that I am not sure about in terms of triggers.

Any ideas of things to pursue or ask the allergist in terms of allergens? Ideas? I'm getting a little frustrated.

-Marshmallow Mateys with skim milk- only rash on face and around lips, some swelling
-Rash when in a bar while the fryer was being used.  I left, took benadryl and sat outside. Steve asked- they were frying a shrimp basket. Took a long time for the sickness feeling to go away and then came close to using the epi.
-Mystery reaction with hived and lip rash- maybe from the only food I ate at the reception that I did not bring- a white cake with frosting made off-site.
-cereal and milk (rash around lips, hives on face, coughing, took 2 benadryl and kept the epi by the bed in case the reaction did get worse
-pizza at the rehearsal dinner- though I suspect that the chicken was grilled in a pan that had seafood in it. (despite the fact that the owner assured me that they would cook in a separate part of the kitchen that seafood was never in.)