Friday, May 2, 2014

Autoimmune "diseases" are Stupid

With NO apologies to Jimmy Moore, who thinks that a blah-blah-blah-is-stupid title is stupid.  Well, welcome to Snarksville.  I won't stop, and I also won't eat a stick of butter with a candle on top for my birthday.  (I just got a copy of Dr. Davis' latest cookbook.  Yay!)

Anyway, where was I?

I should have called this "Diagnosing Autoimmune Diseases 101", if I hadn't wanted to catch your attention.  Here's how its done.

Go to the doctor for something.  The trigger for the AI path can be just about anything, anything on the continuum from pain to having been in the hospital for a week with everything failing.

The first test is ANA.  If this test is negative they can send you home, declare you a hypochondriac, or send you down some other path that may be just as stupid but won't be covered here.

If it is positive, they diagnose you with lupus.

Now, the reason that AI diseases are stupid is this.  Just like what my med-school entry advisor told me:  "Medicine is the only educational pursuit where they weed you out BEFORE you get into school."  The AI playing field is the only one where they diagnose the VERY WORST condition first, and then back off from that as more data comes in.

Can you imagine if you go into the doc's office for a small growth and you get back a letter saying you have cancer, and then a few weeks later you get back a letter saying it was just a wart?  Yep, not gonna happen. go home with the diagnosis of lupus and read all about it on the internet.  People are all carrying on, and you know someone who's sister got it really bad and she dies at 29, and what will happen to the kids?   You start to get really worried.

You go to take a bunch of other tests, around ten of them usually.  You don't test for an immune reaction to EVERYTHING!, just the major stuff.  Stuff that will indicate that your liver or kidneys will explode.  Stuff that will tell if you have one of the major AI conditions or the other.  They aren't as interested in splitting hairs if they think that either-or won't kill you.

If something else shows positive, they might move you from the deadly lupus diagnosis to something that sounds a bit better, like arthritis, Sjogren's or thyroid disease.  Once you have your new diagnosis, they won't usually test you for all the little diseases unless you have really terrible symptoms that don't respond to treatments.

They'll send you to a rheumatologist, who will watch you every few months while you get better, worse, or stay the same.  They might also send you to someone else to take care of other symptoms.

In my case, I got diagnosed with lupus, had it changed to "not-lupus" with secondary Sjogren's syndrome, to UCTD, to "positive ANA" and told I didn't have to come back. (BTW, UCTD is the catch-all disease-name for "we don't know WTF AI disease you have, but you're achey and its not that bad".)

The tests for celiac aren't included in the typical AI diagnosis panel.  Stupid?  Hmmmm.


  1. Which symptoms did you developed before being diagnosed with Lupus?
    I have multiple chronic conditions like autoimmune thyroid, eczema, asthma, which are managed or symptoms-free, and I am convinced that many people are just unaware of the allergies they have. I try not to present myself as a paranoid person.

  2. Early in my life, I had many more symptoms that Dr. Davis would associate with wheat intolerance. This was in my 100% vegetarian days. Right before diagnosis, I didn't know what I had, but I had swollen glands on both sides, and they moved down from my head, to neck, to shoulder, to hip. Really weird. I also had malaise, sporadic fever, lots of water retention and just really cranky. Like for some reason I couldn't stand having the blood pressure cuff on. I ripped it off, couldn't have much next to my skin. I had been bitten by a tick, and thought it was either lyme or some sort of virus. I also did international travel quite awhile ago, and picked up a parasite that was mis-diagnosed. I had three types of antibiotics, and after that, I started having more problems with my skin. It is really difficult to tease everything out, because as we get older, we take more and more hits.

    1. I can see how picking a parasite may over-activate an immune system to the point of getting a RA. The prevalent opinion in a paleo-sphere - parasites are our natural friends, like bacteria in our gut microflora, but I always suspected that opinion was very one-sided. I also suspect that the most wide-spread effect of a gluten and similar substances is not an allergy, but the ability to worsen existing allergies and creating susceptibility to new ones.

    2. I don't think it was the parasite. It was the mis-diagnosis and three types of antibiotics to get rid of a "staph" infection that turned out to be a bot fly. I probably would have been fine if I had known to let it crawl out and fly away. I also did have minor gastro problems by the end of the trip.

  3. here's more about what went on during that time.

  4. sorry, I can't figure out how to make that link clickable

  5. it's your blog, and you can express yourself any way you want to! least that's MY philosophy on my page.... ;-)

  6. OMG, I hope everyone who reads this here blog knows I can't quit poking fun at everything. The more seriouser, the more fun we're gonna have!

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