Getting Diagnosed

As embarrassing as it is to admit – I owe a lot of my bettering health to the morning show – The View, and Elizabeth Hasselbeck in particular. I’m not normally a daytime television watcher, but for some reason the day she spoke about her own struggle with celiac and her new book I had flipped the television on for company as I cleaned the living room. Each comment regarding her “mysterious” health issues all her young adult life sounded disturbingly familiar. Confused doctors, bathroom dashes, each symptom sounding as if she had been looking into my past.

I tried to shake it off – it was just another fad diet, another dead end. I was managing – not healthy by any means, but managing. I’d been scoped, poked, prodded, drunk viscous radiation shakes, been called crazy, and BILLED enough times. To say that my faith in modern medicine was low would be rather like saying folks on the Titanic got a wee bit damp.

But.

The emails started. Friends wondering if I had seen the show, did it sound like anything familiar. In a talk with my mother she asked if I thought, maybe…? I started, in a very roundabout way, to poke around online and see what I could find. What I found made my heart race just a bit – after all these years of feeling like hammered horse hooey, was there an actual answer? Something on one hand so big – never again eat gluten (and for a confirmed foodie that was huge) and on the other hand so small – never again eat gluten. No pills. No surgery. No more looking over the shoulder for the specter of cancer to rear up it head… just don’t eat gluten.

It was time to do something I generally loathed. Find a doctor. Beyond my yearly check-ups at my “really don’t want kids today, thanks” doctor, I’d avoided the medical profession for almost 5 years. A few runs to the emergency room – I should mention at this point I am a klutz of epic levels. When I was a kid, people who didn’t know me well thought my parents were beating me… until they saw me walk face first into a door, neglect to notice that last step, or otherwise : puncture, bash, bruise, and generally maul myself. Now that I’m an adult, I’ve gotten used to pitying looks and people trying to discreetly hand me cards to the local women’s shelter. My husband has had to resign himself to getting the same dirty looks my father did – and in a few cases dealing with errant knights attempting to “save” me from the dragon who must be holding me prisoner. I’ve gotten pretty good over the years at stitching, patching, and generally putting myself back together, but I still manage about one major calamity a year that requires more knowledgeable help. Or at least someone who can put stitches in where I can’t quite reach… But beyond that, I skip the doctor. Now, I had to actively start looking for one.

Frustratingly, finding one was a bigger problem than I had realized. I think I must have called more than twenty offices in May of last year, trying to find just a GP to start. No takers. Time and time again I was told – unless I was referred by another doctor, wanted to wait 5 to 6 months for an opening, or was currently pregnant… I was outta luck. In desperation, I did what I usually do when frustrated to the end of my rope. I called my mom. My parents live about two hours from my husband and I, so I’m not sure what I was thinking mom could do… beyond listen to me rant, that is. But she surprised me. After we had spoken, she called my father’s doctor and asked if they were taking new patients. She told them a bit about me, gave them my number, told them what she knew about my insurance standing, and to my surprise… eight days later found me trundling my tuckus down to see my folks AND a doctor.

One step closer to finding an answer at last. What I failed to realize was just what the next few steps would entail – and how hard I’d have to fight for them.

An hour in a GP’s office, outlining decades of medical history, current issues, and my new suspicion on what had been plaguing me for so long.

And in an instant… I knew I had made a mistake. There seems to be an switch that gets installed in doctors that clicks on the moment a patient attempts to give themselves a diagnosis, a gut reaction to instantly shake their heads and begin to explain the lack of: knowledge, training, understanding this poor benighted unqualified layman is displaying. Over the course of a few moments I was told:

  • its a trend, people are seeing it on tv and stupidly following the herd
  • its a case of overexposure of media, few people actually HAVE the disease
  • and my personal favorite… It’s an incredibly hard and nearly impossible diet to manage, so really what was the point? Let’s just test all the normal things first.

Test… again. Months and months of expensive tests that I had already HAD, some multiple times, to tell me the same thing they had told me before “inconclusive, sorry”. And than, maybe, perhaps, try the celiac thing later.

I’m proud of myself. I didn’t cry. I didn’t attempt a cranial/rectum inversion on the doctor. I didn’t scream or yell. I quietly said “No. Been there. Done that. I want this tested.”

After a long attempt on the doctor’s part to dissuade me, he shrugged and told me “Fine. If you believe it’s celiac, you need to remove ALL gluten from your diet. Everything. Every speck. You can try… but most people can’t manage it. We’ll schedule you wish a gastro and start testing.*

I left the office feeling…. frustrated. Annoyed. Stressed beyond words… and hopeful. He didn’t think I could manage? He doesn’t know my family. We’re a stiff necked stubborn set of independent cusses who don’t do well when people say we can’t do something. It tends to make us… testy. And danged determined. I went home, told my husband what was going on… and we cleaned out the pantry that very night.*

The appointment with the gastro was in two weeks – one way or another, I’d have some answers at last.

* I should mention, for those reading this and facing an upcoming diagnosis… this is the WRONG thing to be told. You have to be consuming gluten for the blood test portion of the diagnosis to be accurate. To say that I was miffed when I discovered this later on…. would be putting it mildly. But that’s for another day.

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About atwheatsend

Amazonian Betty Crocker and a Gypsy who found roots. Determined to eat wonderfully, even if celiac DID kick sand at the picnic.
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