Thursday, May 22, 2014

A yukky Week for the Celiacs

Don't let me rip apart another clinical study!!!!!!  (Especially when I haven't read all of it....)

By now you have heard from practically everywhere that a new clinical study has prooooved for all time that all that gluten-free faddy stuff is stupid.

The new vast-grain-conspiracy mantra is:  NO -SEE -BO'O

What don't I like about the study, even after not reading it:  First, media sensationalism.  Hyperbole.  Gluten FAD diets.  What's not to hate about the way the media has handled this?

Then there is the idea of replacing the BAD gluten with something equally bad, dairy.

Third, there is the short cross-over period, and very short wash-out time.  I don't know about you-all, but major symptoms for me need at least two weeks.  Three days for the big stuff, maybe that is for most people who have full-blown "intestinal" celiac.

Perlmutter says it best in his blog post, what is really wrong with this study.  He also hints at the idea behind why I refuse to get "officially" diagnosed for celiac.  There is no reason on earth why I should go to a gastroenterologist for an expensive and invasive test if I do not even have "their" symptoms.  At best they might find local antibodies, but damage, not as much.  I can eat all that FODMAP stuff like jerusalem artichokes, onions, greens, cole crops.  I eat tons of veggies.  (I know, SHOCKING, on a LCHF diet, just SHOCKING!  I must be the only one.)  Why force me to eat wheat for six months, surely increasing the gluten-related neurological problems, just so I can make some non-symptomatic GI problems bad enough for a gastroenterologist to make money off me?

Actually, I am OK with the small sample size.  A small, well-done study with responsible reporting always wins.
 


Monday, May 5, 2014

Celiac is stupid

May is Celiac Disease Awareness Month.  Yay! (Unless you are Dr. Davis who believes wheat is a poison so a bad reaction to it cannot be a disease.)

I recently became aware that about 1 percent of people in general have celiac, but that two percent of seniors are diagnosed with it.  Rheumatoid Arthritis is the one people usually think about when they think of old people, and it is in the AI screening panel blood test.

Now the really interesting thing about RA is that while most people associate it with pain, limping and gnarled fingers, it can cause all sorts of other problems, and can look pretty much just like lupus.

So, how do you tell the difference?  Almost all AI diseases are diagnosed on the basis of autoantibody blood tests.  Except celiac, because celiac is stupid.  For celiac, they make you continue to do exactly the thing that makes you sick, and do it long enough for there to be permanent intestinal damage. 

Docs supposedly well-versed in celiac (almost ALWAYS pediatric enterologists - this is why they know so much about celiac in older people!!!!@!) demand that an invasive endoscopy be performed, despite what a silly little blood test does for all the other autoimmune diseases.  That is how they make their money.  Oh, I guess they can use the procedure to rule out other gastrointestinal diseases, but REALLY, if there are no gastro symptoms to go on, the test would be a total waste of time.

Let's go through the math.  Lets start with what we'll call PATHWAY A.  Lets say you are young and have gastrointestinal symptoms that totally go away a few months after ditching wheat.  You bring back the wheat, and the symptoms return.  What would a sane person do with this information?  Answer:  give up wheat.

Pathway B.  Now lets say you are still young and have gastrointestinal symptoms that totally go away a few months after ditching wheat.  You bring back the wheat, and the symptoms return.  You decide you would like a definitive celiac diagnosis and so decide to do the endoscopy and maybe a blood or genetics test.  Your results indicate that you have celiac and that you need to give up wheat for life.  What would a sane person do with this information?  Answer:  give up wheat.

Pathway C.  Now lets say you are still young and have gastrointestinal symptoms that totally go away a few months after ditching wheat.  You bring back the wheat, and the symptoms return.  You decide you would like a definitive diagnosis and so decide to do the endoscopy and maybe a blood or genetics test.  Your results indicate that you do not have celiac and that you don't need to give up wheat for life.  What would a sane person do with this information?  Answer:  give up wheat anyway.

All pathways lead to the same outcome, giving up wheat.  Therefore, it doesn't really matter what tests you do, the outcome is exactly the same.  But Noooooo, in CeliacLand, they force you through  either Pathway B or C.  This is why celiac is stupid.




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.

So....you 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.



Thursday, May 1, 2014

I'm Glad I Listened!

"Stop Telling me How to Eat to Cure My Incurable Disease!" screams the title of a blogpost provided by Woo.  Thanks Woo!

LOL!  I could have written this at one time, but I don't feel that way anymore.

A long time ago, a few months after being diagnosed with lupus, I still wasn't feeling very well.  I was getting discouraged by my inability to carry on throughout a normal day, thinking that I would never get better.

We got together with friends over the 4th of July, and I was talking about my illness with my friend, who has a BSN, so the conversations can get fairly technical at times and she is right there with me.  I was also drowning my sorrows in non-local wine.

They had another new friend at the party, a guy someone met at the gym.  At first he seemed friendly.  But when the others left to get more beers or to go to another part of the roof for an ocean view, I was left alone with him.  He got right into my face and started SCREAMING at me about what vegan food I should eat, what supplements I should take, how I should exercise.  Just like a drill sergeant.

This went on and on.  I was stunned.  I couldn't move.  I just sat there saying to myself, "Somebody rescue me!  Please!  Why can't they help me?"  Eventually the others came back, and the drill sergeant went onto other things, but I don't think I moved out of that chair until we were ready to leave.

Then again, if someone had told me at the time that I shouldn't eat wheat, I wouldn't have appreciated it either.  I didn't reduce wheat until over a year later.  By that time, I had figured out the appetite-stimulating aspect of wheat, and started reading about a low carb diet.  By the time Dr. Davis' book came out, I was planted firmly in the "wheat is poison" camp.  After a couple of years of monitoring (and a stint with Robb Wolf's autoimmune Paleo diet) my rheumy told me I didn't have to come back anymore.

I sort of forgot that I had an autoimmune disease.  And the concept that it might even be celiac was absolutely off the radar until I started reading Dr. Perlmutter.  So I am really glad that people like Dr. Wahls and Dr. Davis and Dr. Permutter are still telling people what to eat to cure their incurable diseases.  I just wish I had heard this information years ago.

Some time after the party, I mentioned the incident to my host.  He had no idea that the nutritional bullying was going on.  He still recounts the story to new guests, at every holiday, and he still keeps apologizing to me.  By now it seems pretty funny to all of us, but at times I am just so surprised at how many people think they can attack sick people.