First visit with allergist - how to prepare?

[jschwab]

So, I have a visit with the allergist to follow up on my severe reaction last month and I'm wondering how to prepare. I had a really bad experience with an allergist when I developed my other food allergies, so I want to avoid that. He sent me on a wild goose chase to check for a genetic disorder which was a giant PITA and probably totally inappropriate - he should have referred it on to another doctor specializing in that area. I mainly want to avoid that kind of merry go round. The allergist I am seeing is a referral and doesn't have hot reviews. The doctor who sent me there said she sends patients to get shots and there are therapies for food allergies  , so I'm not sure if she's the right person to see since the doctor didn't seem to have good understanding of food allergies (as opposed to environmental allergies), but I called and confirmed she had expertise in food allergies so I didn't cancel.

What would you want to get out of an initial visit? The last guy told me it was 100% not possible that I had food allergies which is why he sent me on the wild goose chase for the genetic disorder test, even before he did the allergy testing. Is there any reason to have a diagnosis in hand? Obviously, I am not a kid in school and I don't have to worry about accommodations. I also have a bunch of environmental allergies - not sure if I should talk about those, too? They are completely controlled. The other allergist I saw never addressed them at all (in terms of therapies).

Any advice about what to bring or how to approach it would be appreciated.

[CMdeux]

I'd bring a list of questions-- prioritized in order of importance.

1.  Emergency action plan to follow-- when and why to give epinephrine.  This will also serve as a litmus test for whether or not your allergist REALLY is a food allergy specialist who knows his/her stuff.

2. Talk about the possibility to improve your quality of life via treatment/more assertive management of your OTHER allergies-- most good food allergists are going to know how this is connected to your overall reactivity, too, and will WANT to discuss it with you.

3.  Weird or one-off stuff that you can't quite make sense of-- either on your own or with us here.  Never hurts to ask, right?  (But I'd leave this tier of questions for an allergist that passes muster on items one and two above).

Does that help?

I think that it might help you to read current practice parameters on food allergy so that you KNOW what "good" looks like even before you go into the appointment.  A good allergist may be skeptical-- but is probably not completely dismissive.  A good allergist listens as much as they talk.  They may tell you things that you don't want to hear-- but they don't tend to tell you things that seem crazy or impossible relative to your day-to-day experiences.  KWIM?

Let me see if I can dig up practice parameters; there's a new set just in the past couple of years. 


For Food Allergy-- 2006 AAAAI Practice Parameters  The executive summary there provides a great deal of information for patients to use in evaluating a practitioner.

One regarding TESTING in particular--
Practice Parameter-- Allergy Diagnostic testing

There are several other related documents available here:

http://www.aaaai.org/practice-resources/Statements-and-Practice-Parameters/Practice-parameters-and-other-guidelines-page.aspx

I think that the new set that I'm thinking of was in anaphylaxis management.

er-- maybe not--

Food allergy guidelines, 2010


Oh, HEY!

If you only have time/inclination for ONE thing-- this is it:

Food Allergy Guideline SUMMARY-- 2010

[twinturbo]

^Ditto first and foremost what CM wrote. That's pretty much what I'm facing trying to knock down my pollen-food, assorted odds and ends. My twist is thus.

This wasn't current allergist or previous (Sicherer) but with previous, previous allergist who turned out to be really good allergist and really good guy. I made some small chat with him, let him lead for a while then at a natural lull I eyelocked him point blank asking if he was comfortable with anaphylaxis, dealing with it in front of him and has he done so before. He didn't flinch. I like them with enough doctor ego for confidence with enough humility to not go maverick on me. Turned out my youngest did anaphylax in front of him and he did handle it like a champ.

Decide for yourself what kind of care you need. If it's granular and you need attention/follow up I'd see how accessible the allergist is. If he's like here's an epi see you next year and that isn't going to help you work through your goals for quality of life or nailing down suspected allergens then I'd walk. I've never met an allergist that was a jerk but I have refused care from doctors that share my primary's office, the ones that can't seem to look past my uterus to the face mounted on the body housing the uterus. If I hand over objective material like a swab to culture I expect to not be bogged down with extraneous subjective crap about my "feelings".

[jschwab]

Ooo, I will study those links... The only outstanding questions about previous reactions is the bizarre systemic symptoms (nausea and cramping and, ultimately, throat swelling) I repeatedly had walking near a concentration of black walnut trees (it's gone now, by the way, but the trees have also stopped sending down fruit). And I probably won't have the guts to talk about that, because even I think that sounds a bit crazy  .

With foods, I think I am pretty settled in understanding what I am allergic to, and mostly how to avoid contamination, so I'm good there.

One question that weighs on me, though, is if this is just the second chapter of a longer book? If I am likely to keep developing allergies, is there a way to work on preventing that under the care of an allergist?  When I took stock of everything I ate and put on my body containing almonds or almond oil, the scale of my reliance on the nut was formidable. I ate almonds practically every day and slathered almond oil on my body constantly. I have read that rotation diets are sometimes recommended to highly allergic individuals to avoid sensitization to new foods. Is this something that a good allergist would have a clear, informed opinion about?

[CMdeux]

Maybe.   Unfortunately, it's probably not what you are hoping for...

Rotation diets are often associated with "woo" practitioners more than with conventional management-- so many allergists will have a knee-jerk negative reaction to them upon principle, just through that association with naturopathic "allergy" diets.  As long as you're willing to be VERY clear that you're simply looking to avoid over-reliance that might lead to sensitization, and seeking recommendations on that basis, there's little harm in asking the question, anyway.

Unfortunately, the best way to avoid additional sensitization is probably just really aggressive management of what you KNOW you're allergic to, and avoidance of some things which have known interaction with the system there-- antacid/proton-pump inhibitor meds are among those implicated.

Skin sensitization is another known issue (or suspected, perhaps I should say).  So yeah, take a look at the top sensitizers for adults and avoid topical application of those things, maybe?   Given what you've stated about almond, in fact, I'd think that is a likely sensitization pathway for you personally, which may have more relevance than anything else in the picture. 

[jschwab]

Maybe.   Unfortunately, it's probably not what you are hoping for...

Rotation diets are often associated with "woo" practitioners more than with conventional management-- so many allergists will have a knee-jerk negative reaction to them upon principle, just through that association with naturopathic "allergy" diets.  As long as you're willing to be VERY clear that you're simply looking to avoid over-reliance that might lead to sensitization, and seeking recommendations on that basis, there's little harm in asking the question, anyway.

Unfortunately, the best way to avoid additional sensitization is probably just really aggressive management of what you KNOW you're allergic to, and avoidance of some things which have known interaction with the system there-- antacid/proton-pump inhibitor meds are among those implicated.

Skin sensitization is another known issue (or suspected, perhaps I should say).  So yeah, take a look at the top sensitizers for adults and avoid topical application of those things, maybe?   Given what you've stated about almond, in fact, I'd think that is a likely sensitization pathway for you personally, which may have more relevance than anything else in the picture.

That's what I thought, too, that rotation diets were wifty, pseudoscience attempts at keeping foods in people's diets who really should not have them at all or who don't actually have a problem. Then I saw an article that seemed more legitimate that talked about them for adult onset allergies that are more intense and I was surprised. My concern is mainly eggs - I eat at least three eggs a day, often many more. We use them for everything as a gluten and milk substitute. That is a good point about skin sensitization, though - I don't use any egg on my skin. I am just on #3 of the eight, so getting more concerned it will keep going. I am only using very hypoallergenic soap right now and only olive oil for moisturizer as my skin is still very sensitive from this last reaction. Do you know offhand which allergens are more likely to be sensitized in adults? I know shellfish is one, and milk is rarer, but not up on the other ones.

[CMdeux]

Sesame (or other seeds, like sunflower), peanut-and-treenut are the leading culprits after fish and shellfish.  At least in North America and in adults.

Of course, nobody really knows for sure what it means to a family that has a non-Western diet/lifestyle in particular, either.  But over-use really doesn't seem to "trigger" allergies in adults.  At least not by itself-- but my guess is that a garden variety allergist (even a good one) isn't likely to have a lot of insight into WHAT is going on with your adult onset allergies in particular-- or how to get you some insurance that you won't develop more of them.  Unfortunately.

Nobody really knows why some people suddenly start to develop allergies, much less what makes them STOP doing so. 

It might help you to understand which protein super-families are somewhat related to one another-- I'd ask about cross-reactivity rates in adult patients.  It might be worth it to at least know what things, demographically speaking, you're more likely to develop problems with if you're going to-- if that makes sense.

For example, while I've never had a major reaction to molluscs, it's very likely based on my crustacean allergy.  For some reason those are "grouped" together. 

Peanut is clustered that way with a few things, too, as are particular treenuts.

[jschwab]

Sesame (or other seeds, like sunflower), peanut-and-treenut are the leading culprits after fish and shellfish.  At least in North America and in adults.

Of course, nobody really knows for sure what it means to a family that has a non-Western diet/lifestyle in particular, either.  But over-use really doesn't seem to "trigger" allergies in adults.  At least not by itself-- but my guess is that a garden variety allergist (even a good one) isn't likely to have a lot of insight into WHAT is going on with your adult onset allergies in particular-- or how to get you some insurance that you won't develop more of them.  Unfortunately.

Nobody really knows why some people suddenly start to develop allergies, much less what makes them STOP doing so. 

It might help you to understand which protein super-families are somewhat related to one another-- I'd ask about cross-reactivity rates in adult patients.  It might be worth it to at least know what things, demographically speaking, you're more likely to develop problems with if you're going to-- if that makes sense.

For example, while I've never had a major reaction to molluscs, it's very likely based on my crustacean allergy.  For some reason those are "grouped" together. 

Peanut is clustered that way with a few things, too, as are particular treenuts.

I would kill for a bivalve. Hubby asked me to stop eating them due to flushing and association with crustacean allergy which freaked him out, but I think about mussels quite a bit and might try ones I prepare at home.

We eat a pretty Western diet and we are also European in ancestry, with some indigenous Central American mixed in. Is sesame now prevalent in the U.S.? I had the idea it was mostly Canada (speculating that rapeseed is related to sesame, but have not looked into that).

I always want stats that would read like "8% of shellfish allergic adult patients are also allergic to molluscs". I like thinking in terms of relative association of risk.

[SilverLining]

This might seem obvious, but I don't see it mentioned here.

If you are taking any antihistamine, if possible stop.  If the doctor wants to do any testing you have to have it out of your system for a certain amount of time.  (Sorry, I don't remember how long.  An week?)

That includes any other meds that have antihistamine in them...certain colds meds, and gravol (anti-nauseant, not sure of US name or if it's a different med there.)

[Macabre]

You should call your doc's office. For Burks it was two weeks.

I'm adult onset crustacean and sesame. And well, I have reaction history to peanuts and skin test positive to them. Mine did develop for the most part when taking a proton pump inhibitor--Nexium. I'm not claiming a necessary causal relationship. But it may be the case. There is research that suggests there may be a link.

[twinturbo]

Nothing much to add just in to wish good luck, hoping this is your 'prince' after the frog. For me I always feel like I don't have time to deal with my own personal allergies when there's so much I have to do. The paradox of a mother's self-care.

[jschwab]

This might seem obvious, but I don't see it mentioned here.

If you are taking any antihistamine, if possible stop.  If the doctor wants to do any testing you have to have it out of your system for a certain amount of time.  (Sorry, I don't remember how long.  An week?)

That includes any other meds that have antihistamine in them...certain colds meds, and gravol (anti-nauseant, not sure of US name or if it's a different med there.)

It's not happening. I already posted about this in another thread because I have a lot of anxiety around the testing. I did the maybe 4 years ago due to ana reactions to shellfish and dairy and I blithely thought I could do the ten days with nothing in my system. I lasted five hours and discovered my environmental allergies were way more intense than I ever gave them credit for. I could not breathe, had flulike chills and soreness, etc. I had not missed a pill in something like 20 years and have complete remediation of symptoms with nasal steroids and 24 hour antihistamines, so I just had no idea how bad off I was without meds (although bad enough I never missed). I ended up not making it, I think. I took Benadryl for a week and I think negotiated something on those final three days, but I don't remember exactly what. I don't think they would conduct the testing at the first consultation anyway.

[jschwab]

Nothing much to add just in to wish good luck, hoping this is your 'prince' after the frog. For me I always feel like I don't have time to deal with my own personal allergies when there's so much I have to do. The paradox of a mother's self-care.

Yes, this is why I am not really sure I want to go and pick up the phone to cancel every day. I don't really have time for diagnosing a new allergen that I already determined was the cause. I am not sure what any allergist could do for it, anyway. They don't do much for adult onset allergies anyway except hand you an Epi-Pen.  There is nothing really to "manage". I hate spending health care dollars on things that are just about diagnosis and not therapy, you know?

[CMdeux]

Yes-- BUT-- as someone who has developed multiple adult-onset allergies, you probably are a person who is going to need an established relationship with an allergist.  If not now, then in the future.

If you NEED to get an emergency epi script phoned into a pharmacy out of town, for example, a good allergist can do that for you. 


I find it mentally hard to think of myself as being a person with "complex" medical needs.  But in some ways I guess that I am.  I see my PCP about every two years, realistically.  But sometimes I do need to see someone with specialized knowledge. 

I know how you feel though-- I have been putting off a referral to a geneticist because I just keep thinking "so what-- I pretty much already KNOW what they are going to tell us, and there isn't a test... so what's the point??"

[lakeswimr]

I agree with CM.  I hope you find a great allergist.  And I could be wrong but I think you can get RAST tested without going off meds.  Our doc is not big on RAST and does skin usually but I think that's the case.  Testing is not the be all and end all but it can be helpful.  But it isn't necessary.  If you walked into most allergists and described your past reactions they would give you a script for epis and emergency plan. 

I can't remember your whole story but if you are having some mystery reactions testing via RAST could help you figure out the cause and so could in office challenges. 

I would want the very best allergist I could get if I were you.  Best wishes!