The gluten challenge was stranger than I expected. I spent the entire week after the last post in excruciating pain in all my joints (unexpected result), eating as much wheat as I could tolerate. My digestive system shut down (that was expected). It was miserable. After a week, and still eating wheat, I felt well enough to sit for a little bit in the living room.
Tuesday: First attempt to get the tests I was told everything had to be done “fasting” – not true.
Wednesday: Second attempt to get the tests the tech couldn’t wrap his head around how to code some of the requested tests.
Thursday: Third attempt I went to a different lab than the one attached to my HMO.
ALL TESTS CAME BACK NEGATIVE. Less-than negative. Literally the equivalent of handing in water.
I don’t have answers, but the allergist was extremely dismissive.
And I don’t have a primary care doc any more because the HMO has a crap online system for finding new docs. The online “chat” was clearly a bot… The only recommendation from the kind person I called physically was to literally call every doc’s office if they are listed online since none of the names I was considering ended up being available. If HER records were current, why not the online listing? Seems they need an actual database administrator.
Frustrated doesn’t begin to describe how I am (still) feeling.
I spent several weeks with my intestines completely shut down. Then, predictably, last week (about 3 weeks after I stopped eating wheat) things started “moving” – finishing with a week of extremely fast digestion.
And no primary care doctor. I don’t want to set up another consultation with the GI I saw last year. With a null result on the celiac tests, he’s not likely to be able to tell me anything new.
I don’t want to find another allergist who takes a look at a string of null results and dismissively says: well you’re not allergic. And shrugs. Literally.
So I have taken my health into my own hands. Decided if I wasn’t allergic maybe I could stop taking the daily asthma inhaler. I had already stopped taking all antihistamines and anti-inflammatories in January to prepare for the tests… I have avoided even analgesics and decongestants unless I was desperate during the day and needed to teach.
And the near-daily migraines stopped.
So I stopped taking the blood pressure medication.
And my energy level seemed to rebound.
Since then? My joints still HURT. Not as bad as 5 weeks ago, but it’s not fun. Typing hurts. Walking hurts. Sitting usually hurts. Lying down hurts.
I have taken small doses (ie, the OTC amount) of ibuprofen on a couple of days this past week when I had a low fever and stiff neck from a virus I caught from my students (I took my mask off to read to them Monday-last and forgot to put it back on until they went to specialist). Otherwise, I am trying to see if I can get the pain to fade just by living through it.
So far, this is less-than optimal.
And I have seriously considered going in to the waiting room at the HMO with a large, allergen-laden treat of some kind to test if I have a problem with anything that I have been avoiding. If I have a reaction, they would be able to document it, which would make it “real” for record-keeping.
Clearly, my lived experience, my detailed descriptions of how different things affect me, are not enough evidence.
At least there is one medical professional who believes me… I just need to find a way to get proper access. She has given me good advice, and the current plan is to eat a small amount of wheat once or twice a week for the next six months and then try the celiac test again – and possibly a biopsy to check for actual damage.
And I still need a primary care doc to fill out forms that will prove to my employer that all the time I am taking off is necessary. Or I need to quit.
I don’t want to leave teaching, but right now I am so limited in so many ways…
Next post: Two Minutes in Half an Hour.
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