Day Twenty-Two: Thinking Outside the Box… when THEY say “the test came back negative”

I have been eating gluten, corn, and soy free for three years now.   But I don’t test “allergic” to these foods on normal tests.  I actually had a top allergist in my state tell me during an appointment a few years ago, that their tests are really only about 50% accurate.  FIFTY PERCENT!  So when my doctor who had me do the elimination diet wanted to send me to an allergist to look for other allergies I was kind of skeptical.  But she said she was sending me to someone with a different persective, who believed the elimination diet produced real results, showing which foods the body could not tolerate, even if the reaction was not shown in a test.  So I said ok.

The allergist ordered the skin prick testing.  The pricked about 20 places on the underside of each forearm.  And guess what?  I reacted to all of them.  That is how reactionary my body was.

If you have never had this test done, the ones that swell up, and itch like crazy, are the ones considered an “allergic reaction.”  The bigger the swelling and spreading of the redness, the stronger the allergy.  Well, ALL OF THEM were swollen and itching and burning like fire.  So they called it a failed test, due to overly reactionary skin. But there was ONE spot bigger than the rest, that she considered a “real” result.  Surprisingly, this was shellfish.  When she asked me if I had noticed reactions to shellfish, I told her that I had had an aversion to shellfish my whole life, but I think I got horribly sick when I was little after eating lobster once.  She replied “well, definitely don’t try any shellfish.”  Sometimes,  your body just knows. 🙂

I am also allergic to dust mites and mold. (I DO test allergic to these).  Last fall, my allergies were worse, I was seeming more reactionary to the usual foods, but also just getting totally stuffed up when crawling into bed etc.  I have special coverings on my pillow and mattress to cut down on exposure that get washed every week. I was doing everything I normally do, with maybe cheating once in a while with corn.  (Who can resist a little popcorn with a movie?!  I have not yet found a good substitute for that one.)

My new doctor (the other one closed her practice to stay home with her firstborn) sent me to an out-of-the-box allergist, who is known for treating non-traditional allergies.  Instead of creating a histamine response, some foods corn can cause a white blood cell reaction in some allergic people.  People with this kind of  allergic reaction to corn do not test allergic on traditional tests. They test for this kind of reaction by looking for white blood cells in the nasal cavity, where you normally don’t find them. (These can also be caused by mold and dust allergy… so big surprise I had plenty of them!)  These white blood cells also build up in your esophagus, creating swallowing issues.  The fancy term for this type of food allergy is eosiniphilic esophagitist.  It was difficult to pin down for me, because I had definite reactions to corn, but also had the two other allergies that can cause eosiniphils to end up in the nasal cavity.

But I learned a very important thing.  He said even a tiny amount of corn can keep your body in this cycle of reaction.  We found that my teeny tiny thyroid pill had corn starch in it, and that even that amount could keep me in the cycle, because I was taking it every day.   And, of course, I had been cheating.  What I have since learned about  my own body’s reactions, is that if I cheat with a food like corn (that may make my throat close if I eat too much, but sometimes I can get away with a handful or two of popcorn), it makes my other allergies worse.  My dust mite allergy is much worse.  My food reactions can become stronger.  So although I may successfully “cheat” in that moment, my body pays for it for many many days, with a stirred up immune system.  This can cause more trouble swallowing, cramps, unsettled stomach, pimples, stuffed up nose, sinus headaches etc.

The moral of this part of the story is, you have to listen to your body.  My body was reacting to foods that I did not test “allergic” for.  Thankfully, I found a doctor who knew there are other kinds of allergies and intolerances, and I discovered there was another type of allergy not tested for by those tests.  I bet this will be the case for other types of food as well in the future.  I spent years not trying to eliminate foods because I didn’t have a doctor who believed in it.  I am very thankful I have finally been on a path these last three years, with the kind of support I needed, to understand my body, and how to take care of it.

I also learned, from the newest allergist, a very interesting thing about chocolate impacting my allergies, that I will share with you tomorrow, as this post has turned into a novel!  So stay tuned for part two of “thinking outside the box” with food allergies!

 

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4 thoughts on “Day Twenty-Two: Thinking Outside the Box… when THEY say “the test came back negative”

  1. This is so helpful! I have a friend who moved from Los Angeles to Kansas and SUDDENLY became allergic to everything – she has four kids and would be in bed with flu like symptoms and/or go into anaphalatic shock {I have no idea how to spell that} suddenly. The only way she would feel better was to fly back to her parents’ house in L.A. Everything was fine again. After years of this, she has now found out that she never had problems with allergies because she lived within 12 miles of the ocean her whole life. The breeze and ocean current would sweep away the bad stuff she was allergic to and never bothered her. Funny that the smoggy air was better for her than the clean Kansas air! Her husband is a pastor in KS and they are trying to figure out how to get closer to the coast! Weird, huh?

    I have not been to an allergist but am seeing how I react to different foods in different ways and now just avoid them – I feel so much better! Thank you…love your series!

    Becky B.

  2. Hi, interesting to read about your experiences. Not sure if I mentioned this already earlier in October, but here in Australia we have an elimination diet designed by RPA hospital and a cookbook called Friendly Foods put out by RPA, and another book called The Failsafe Cookbook by Sue Dengate based on the same diet. The reason I mention it is that the recipes (especially in Friendly Foods) are mostly gluten-free and all corn free, except for some cornstarch sometimes, which perhaps you could use arrowroot instead? Also the are mostly dairy-free and contain fruit and veges low in salicylates and amines. These are the cookbooks I am living on at the moment! I know how hard it is to find corn-free Gluten-free products … Poor you!
    When I finish this diet I might visit an allergist too after reading your story …

  3. Fiona- thanks for mentioning those books, I will definitely see if I can get access to them here. I am on a quest now to try some new things, after getting all my basics down! 🙂

    Becky- that is so wild! I am going to be blogging next about why my doctor thinks I developed such strong reactions to things.

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