Wednesday, March 27, 2013

Evidence vs. Experience



I have what can best be described as a crapload of allergies. Some of them have been around since I was a kid — if I ate too many grapes or apples, I’d get hives — but others are new additions. First came kiwi, then 15 years ago certain kinds of nuts arrived, taking with them all other kinds of nuts due to the risk of cross-contamination (I miss nuts…). Then came Enbrel, which made me allergic to what seemed like the entire world. Since I started Humira, I’ve gradually added back foods, but still have a number of interesting limitations, what between cross allergies — did you know that if you're allergic to kiwi, you probably have a cross allergy to melon? I found out the hard way — aggravated histamine levels thanks to Humira and my body’s just plain persnicketyness.

Living with a crapload of allergies is a pain in the arse, particularly nut allergies. Because of the cross contamination issue, having a nut allergy means being pretty paranoid about other kinds of foods. You can't buy bread in a bakery, because the baking sheet upon which the bread has reposed may also have been used to bake something containing nuts. You can’t buy chocolate bars without nuts because they’re usually made in a factory that also makes chocolate bars with nuts, so there might be cross-contamination. Same goes for cookies, ice cream and anything else you can think of. Thankfully, the last couple of years, I've seen more products being made in nutfree environments and the labeling laws in Ontario do help tremendously. But I still miss chocolate. Good chocolate. NestlĂ© makes four different kinds of chocolate that's nutfree, but it's made for children. It's not really good chocolate.

But I digress. Lately I've been in the mood to expand my food options, but thought it best to verify my own assessments of allergies. I'd seen an allergist and had some blood tests that came up negative, but let's make sure. This meant a return visit to said allergist for a skin test to confirm — or perchance, I hoped, to deny — the long list of what I shouldn’t eat.

A very nice woman from an Eastern European country was entrusted with performing the skin test. This is that test where they smear concentrated allergen on a double row of small needles and then press them hard into the underside of your lower arm, followed by a few notations in pen to differentiate them from each other. I winced my way through the right arm, but as she prepared the contraption for a second imprint on my left arm, I started thinking about Eastern Europeans and their reputation for brusqueness. Somehow, she didn't seem nearly apologetic enough.

And then I went into the waiting room to join the line of other victims patients sitting with their bare arms outstretched, afraid to move in case it might mess up the test. Deeply fascinated, I kept an eagle eye on each tiny hole in my arm with its accompanying marker in blue pen, waiting for red bumps to appear.

None did. I looked closer. Nothing. Cooked some more, then looked again. Still nothing.

And this is when I started fantasizing. Because I knew that several perforations on my left arm represented nut proteins and there clearly was no reaction, so maybe I wasn't allergic after all? Maybe it had been some fluke reaction? Maybe I could start eating nuts again?! And this was the point where visions of not sugarplums, but two particular items after which I have been lusting for years started dancing in my head. I imagined stopping by the grocery store on my way home to buy one of those wonderful deep, dark Lindt chocolate bars that are all over the place now, but which I have never tasted (with the exception of a few experiences, I haven't had really good dark chocolate in decades). Right after that, I’d swing by the bakery on the bottom level of the Market and get a freshly baked croissant and carry it home, still warm in the bag. I'd eat the croissant and chocolate together.

I love croissants. So much so that back in the 1980s when we visited Paris for five days, I lived on cappuccino and croissants. Once, we stood outside a bakery not too far from the Eiffel Tower for 25 minutes waiting for them to finish baking. It was a really good vacation.

But I digress. My allergist came out, took a look at my arms and then sent me back in for another round to doublecheck the nuts and kiwi. For the latter, we had to go to the cafeteria, get a fresh kiwi and the love Eastern European woman mashed some of it up and put the juice on a couple of the holes in my skin. I haven't been that close to a kiwi in 15 years. All I remember is being nervous and that it smelled really green. The result? Again, nothing.

The chocolate and croissant were so close I could taste them.

And then I went to have a chat with my allergist, who told me that the only tests that came up positive were for dust and dust mites. So, I asked, with a significant amount of excitement in my voice, did that mean…? 

No, it did not. As my chocolate bar and croissants fluttered away with the inside me yelling noooooooooooooo, I listened to my doctor tell me that there are studies showing that you can show negative in both blood and skin tests and still have an anaphylactic allergy. In particular, a large French study of people with sesame allergies demonstrated this conclusively (at which point, I wondered whether they had deliberately induced anaphylactic reactions and then decided I didn't want to know). He told me to trust my experience of "interesting" reactions to a crapload of different foods, snacks and other substances. And then I went home. I did not stop by the grocery store for a chocolate bar and I did not stop by the bakery on the bottom level in the Market for a freshly baked croissant.

As I was nearing home, I considered the irony of a doctor trusting my experience, rather than the evidence, the one time I didn't want that to happen.
   

10 comments:

FridaWrites said...

kiwi+melon also = banana and latex, so be careful!

I'm having a lot of problems with any dairy these days as well as some other foods--it's not lactose intolerance.

Anonymous said...

Ugh. Tree nut allergies are terrible. Plus too many people in my neck of the woods are like 'tree nut' what's that?.
I always had a mild itchy mouth/throat after eating pecans, but it went severe about 5 years ago. I miss pecan pie. And good chocolate. I have made my own croissants because I wanted them so badly.
I feel your pain.
I also did the skin test and the allergist with similar experience. Interesting.
He also said that if you have a "mild" food allergy but keep eating the food, it can be like playing russian roulette. scary!

kitten said...

You could always get your epi-pen and head to the doctor, and have someone bring you a nut or something, to test it out. (My naturopath says that you can be sensitive to some things, and that once they're out of your system for a while, your body can tolerate them in small amounts. Perhaps it would be worth a (medically controlled) test.)

Diane said...

How about a talk with the allergist and your regular doctor about reintroducing foods and how to do that?

Cindy said...

I have had allergic reactions to antibiotics. One thing the allergist said is that with some items, you might have a reaction but it is not to the primary item such as penicillin but to the fillers that are added to the drug.

Same thing with chocolate bars - might not be the chocolate (or in your case, the nuts that might be there) but with the stabilizers etc.

Useless bit of information, you can't put kiwis (or pineapple) in jello for a jellied salad - they contain an enzyme that makes the jello refuse to jell!

carlascorner said...

As if your life isn't complex enough without stupid allergies to deal with. Sometimes being a "good" patient sucks. :-( Go get a really good chocolate bar with nuts. Then go to the Emergency Room and eat it. :-) I have for years broken out with a really weird rash. The dermatologist says it's allergy-related. The allergist says I'm not allergic to anything. But I haven't had the rash since I've been on biologics. Good luck. Let us know if you venture into dangerous territory and how it goes.

Eileen said...

Lene - did the doctor give the reference for the French study by any chance? My granddaughter is a brittle asthmatic and I suspect an allergy for several reasons I won't go into - but the only things she is positive for are dust and mites. Of course her mother (a nurse) is adamant: if the tests say, it must be right. As a scientist I'm sceptical and your post makes me feel vindicated!!

Lene Andersen said...

Eileen - he didn't, but I plan to go back and ask. I need to learn more about this, too.

AlisonH said...

Oh WOW on that last line!!! Any chronically ill person would have the same reaction I did--a sharp gasp of recognition.

Potomac Chocolate. Won awards, guy makes it by carefully picked beans in his basement, can't keep up wtih the demand, no nuts, good stuff. Very very good dark stuff.

AlisonH said...

On a side note: my daughter with lupus's (fairly new) wheat reaction didn't show up on the celiac blood tests while she was in the hospital with her immune system suppressed every way they could think of as it tried to kill her. She told everybody going past her about being allergic to wheat, not just celiac, and got nodding heads, right right. Wrote on the menu on the tray. Got it.

They they fed her soup that, it turned out, had flour to thicken it with. Because they didn't trust the patient's experience over the tests (or they just plain blew it.) And put her straight in the ICU for several days.

Well, THAT'LL teach'em to trust the patient.