food allergy testing confusing

Posted in the Wall Street Journal last week:

Is Your Kid Truly Allergic? Tests Add to Food Confusion

No kidding.

It has been over a year since Caroline’s last allergy testing.  The last couple of tests didn’t change much of anything, so we haven’t wanted to bother.  The only change, albeit a big change, over the last  few years is that she began eating eggs baked in cakes, cookies, etc.  The first time she trialed them scrambled, however, a couple of years ago, she threw up 12 hours later.   She only just last week decided to try hard boiled egg for the first time, seeing so much hard boiled egg eating going on around her since we cooked so many eggs for Rhiannon’s science project.  She had no reaction.

Caroline has a long list of food allergies based on blood testing (RAST):  cowmilk, wheat, barley, spelt, sesame, chickpea, peanuts, almonds (and a couple of other specific tree nuts), quinoa, buckwheat.    Before a few years ago, the list also included oat, potato, peas, mustard, corn, garlic, lentil, and soy.  She started eating soy when she was almost 3, and has eaten quite a bit of it in the form of yogurt and ice cream treats.  She also eats a lot of potato and oat now, and she eats corn and garlic occasionally.  We don’t eat much peas or lentils in this family as a whole (I’m sorry to say) but she has dealt with pea protein many times in a couple of varieties of allergy-friendly cookies we sometimes buy.  She tried mustard a couple of times, but doesn’t like it, much preferring ketchup for her gluten free chicken nuggets.

The only foods still on the Avoid list for which Caroline has a definite reaction history are cowmilk and garbanzo/sesame.   The garbanzo or sesame (or both) reaction was from getting some hummus on her forearm right here at our kitchen counter.  It left a red mark.  I called it a welt at the time, but I don’t remember it being a big deal.  She has had several encounters with cowmilk over the years that resulted in hives and puffy eyes, and the first ones were all solely from contact, not ingested.  Last summer she ingested cowmilk for the first time, accidentally, when she unthinkingly bit into her friend’s Creamsicle.   How much milk is there really in a Creamsicle? I wondered. Amazing to think about when you consider how she reacted, with the usual puffy eyes, runny nose, and hives.    Cowmilk is Caroline’s most definite allergy.

She has never eaten wheat, unless I’m correct about her picking up a fallen crouton off the floor and eating it on Thanksgiving just after she turned 1.  I thought she had an eczema flare after that.   Her skin prick wheal for wheat, when she was a baby, was huge.  Her initial RAST number for wheat, right around her first birthday,  was >100 (on a scale that tops at 100).  It has gone down a little each time she has been retested.

She has never knowingly touched or eaten peanuts or tree nuts.  Peanut butter and other nut products were the one  thing I banned from the house when I first figured out her eczema was probably due to food allergies.  Those and milk (in her second year) were the only foods I banned from the house.  Her peanut RAST number is somewhere in the middle of the scale, but they say you can still have a severe reaction even with a low RAST score for peanuts.  (It varies from one food to another.)  So I really have no idea how allergic she is to peanuts (or tree nuts).  With it being one of the scariest food allergies, I’m in no hurry to challenge that one.  She likes Sunbutter.  It hasn’t been too hard to avoid peanuts.  I think sunflowers seeds are healthier too.

As for the rest of the items she’s avoiding, buckwheat, barley, spelt, and quinoa, they are easy to avoid and not missed, so there is little motivation to challenge them.  However, I have my doubts about whether they are true allergies.  Quinoa is an especially interesting story, because she has actually eaten it.  Quinoa, as well as the others I just listed (except spelt, which is ancient wheat), were my wheat alternatives in Caroline’s first year, when early skin prick testing led me to avoid all of the top 8 allergens, and quinoa was the best.  It is wonderful as a whole grain, cooking like rice, it has been made into pasta, and I used it as flour.  Caroline’s first birthday cake was primarily quinoa flour (along with a couple of others).  I think I was eating quinoa on a daily basis in the second half of Caroline’s first year, and she began eating it too, close to her first birthday.  Then, that November, we finally made it up to John Hopkins to see Dr. Wood and they took vials of blood for RAST testing.  The result for quinoa took longer to get than the others.  I was already numb from the initial results, and already only eating meat and whole fruits and veggies, but I remember the sinking feeling of disappointment that January when I found out that Caroline’s RAST for quinoa, like that for wheat, potato, barley, oat, sesame, chickpea, and milk, was >100.

Wait.  All of those foods were >100 five years ago, yet now she is eating a couple of them, and all of the scores are coming down.

Yes, confusing is an accurate word for this allergy world.


Please comment. I welcome discussion and critique! Thank you!

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