New shrimp allergy

[seanchai]

I'm 30 years old and appear to have developed a shrimp allergy as of this week. My only question is something I know there's no single answer to – I'm already positive it's an allergy and I know what to do about that – so here's some general background:

Autoimmune disease runs rampant in my family, including allergies, asthma, eczema, etc – all three of which I have, as well as rheumatoid arthritis (and cerebral palsy, which isn't relevant except for the fact that the combination means I already see quite a few docs!) My father and I were both put on *extremely* strict elimination diets as kids (quite warranted in both cases) and we both grew out of all food allergies by the time we were six or seven, with only severe environmental allergies and a few drug allergies remaining (because dad was dealing with food allergies in the late 50s, and mine were in the early/mid 80s and caught before they progressed to severe, neither of us have ever had an epi pen, although being the medical geek and general medical knowledge person amongst my friends and family, I've administered it to several friends in their time of need).

When my father was about 40, he developed a reaction to shrimp; something we both love but don't get an opportunity to eat often. The first time the allergy popped up, it just manifested as flushing and general itching, and as we were out of state and eating at a relative's, he wasn't sure if it was a food allergy at all (or a weird reaction to the difference in climate and pollens)... and if it was a food allergy, to what. Next time he had shrimp – about a year later – it was a classic anaphylactic reaction – hives, vomiting, breathing problems, etc. He hasn't touched shrimp since, albeit under duress!

Back to me: I saw both an allergist and an asthma specialist (two separate docs) from about age 6 months to 18 years, at which point my insurance coverage got much worse... at that point, my allergies and asthma were under control and I was (and am) meticulous about managing them, so suiting up for the battle of finding another allergist and getting it covered was less important that fighting to get rheumatology, neurology, physical therapy etc covered.... allergies slipped down the list and became one of the coverage fights I haven't gotten around to yet. And I've done fine... until a few days ago.

I was peeling some raw shrimp for dinner for the first time in probably five years and noticed my palms were itching. One of my first signs of an allergic reaction of any kind is altered thinking, so my train of thought was something like "hm, that's almost like an allergy... dad developed a shrimp allergy as an adult.... I'm sure I'm just being paranoid, though." (I really, really know better... unless I'm reacting!) So I didn't stop peeling till I realized my arms had come out in hives... at which point I stopped immediately and jumped in the shower. I can't take Benedryl – I have a really, really odd reaction to it that feels like an allergic reaction in and of itself, that no one's really figured out – so all I could do was scrub like mad and ask the family to keep an eye on me... I didn't want to cause a panic over a contact allergy, or in case it was a reaction to something totally different (I break out in hives from touching random surfaces that have three particles of pollen or animal dander, and we did just move house, so there was a slim possibility that I'd touched something else.)

I had one heck of an allergic hangover for about 8 hours, and then was okay... again, that's something I deal with due to environmental allergies. So (here's where my stomach overruled my logic), the next day when my family asked if I wanted to chance having the leftover shrimp, I thought, "hey, even if it was the shrimp, it might just be a contact allergy. I'd really hate to stop eating shrimp just because I can't touch it raw... I need to know if heat will alter enough of the proteins for me to be okay." Not horrible logic in a general way – I do know my fair share about how allergies work – but I also know *my* body, and I know my body doesn't like it when I play Russian roulette, and I know good and well not to re-expose myself to a potential allergen when I *just* had a reaction... my allergy and asthma cup is one of those that can be fine for months/years and then decide to *explode* rather than overflow. "Trying it again" was really, *really* stupid at *all*, and really, really stupid and *useless*, data wise, when I'd already reacted less than 24 hours before. Have I mentioned how much I love shrimp, and how rarely I get a chance to have it?... sigh.

So, in a moment of idiotic denial, I had three small shrimp. Very slowly and carefully. And I was okay – I thought. Till about four hours later when it felt like my face and ears had been set on fire and my nose wouldn't quit running.

Son of a....

I know where to go from here – back to an allergist, get retested, get an epi pen, etc. Stay away from shrimp (sigh...). My only real question is something I know doesn't really have an empirical answer: With my insurance, it's probably going to be six months to a year between my first request to get an allergist covered, and the time it actually *is* covered. (I can get ahold of an epi pen before then, from my GP on Monday – I'll have to pay for it out of pocket till I can get the official dx from an allergist, but that's money I'm willing to spend). In the meantime, how careful should I be? I know not to ingest it or touch it, and we won't have it in the house from now on, but should I be asking friends not to order it in restaurants? Should I be super-vigilant about cross-contamination, or make a common sense, well informed effort to avoid it and not worry too much about slim possibilities, especially given that I don't eat out or have processed food often?

I know that food allergies tend to get worse with repeated exposure (and that just because it was a mild reaction this time doesn't mean the next one will present in a linear way), so I'm not planning on doing anything like eating out at Red Lobster or not bothering to check labels, and I know everyone's comfort level re: their allergies is different... but in the interim between knowing you have an allergy and being able to get the official dx including knowing your levels and having a new plan, how careful would *you* be?

[rebekahc]

1.  I would definitely get an epi rx from your GP. Honestly, reaction history trumps any testing, so it's probably not necessary to see an allergist unless you're needing to figure out what you reacted to (you're not) or if you need to be taught management (sounds like you're fine there as well). If you really want test confirmation, your GP can order the RAST test - doesn't have to be from an allergist. Which leads me to my second point...

2.  Test results simply confirm the allergy - the "levels" have nothing to do with severity of reaction. For some allergens, they have figured the 95% predictive value (scores lower than x are likely to not react while scores above x are likely to react), but that's all they can predict. Since you've already reacted, you don't need the scores for that.

As for daily management, if you see my posts about my son's recent shrimp reaction, you'll see my opinion. Basically we aren't going to change what we do unless it's warranted by symptoms.  Note: I would NOT suggest that strategy for a young child. My son is almost 16. 

Please, please don't take any more risks - trust your instincts and knowledge and don't talk yourself into a bad situation!

[CMdeux]

Pretty careful.  Particularly in the short term. 

Your story is fairly similar to mine-- with the exception that shellfish was a VERY regular part of my diet.  I think that I have probably been allergic (but with a very high threshold) for decades, because shrimp is one of those foods that I can "only eat a VERY small amount of" prior to my anaphylaxis encounters.

I remember as a child being in a house and helping to "pick" shrimp and having asthma trouble that was truly scary-- and just feeling nauseated and ill for the entire two days. 

I would:

a) get and keep a pair of epipens-- as in, ON you all the time.

b) investigate alternatives to diphenhydramine.  Sleepiness and other CNS effects are perfectly normal, btw-- though if you have an exaggerated response in that respect, it's probably just as well to find a non-sedating alternative that works for you, like cetirizine (zyrtec).

c) avoid as well as YOU can... but until you have evidence that being around shrimp is problematic, I wouldn't restrict others.  Other than the obvious of maintaining a shellfish-free home.

d) be VERY careful of FISH.  Most of it is cross-contaminated, too.

e) check out our anaphylaxis grading chart so that you know which symptoms call for anaphylaxis.  This should be a pretty easy bit of information to digest, since you already sound well-informed on the subject.  But there may be some surprises.  My DD and I are both prone to reactions without hives, vomiting, or wheezing, and those are VERY tricky to interpret and treat, unfortunately. 

My shellfish allergy is, truly, the biggest bummer in my family's pantheon of allergies.  Given what else we're allergic to, collectively, that is really saying something, by the way.  We live in a coastal area, and would otherwise have a lot more dining options and even catch and eat crab for ourselves and eat fish-fish-fish.  But we can't.   

For a long time after I anaphylaxed, I had trouble even being near others eating shrimp without feeling distinctly light-headed.    I don't know that this wasn't partly psychosomatic, but I think that at least some of it may not have been.