Friday, May 8, 2015

Accidental Gluten and The Trials of Autoimmunity

First, and perhaps most importantly, I want to say that I don't eat 'gluten free' foods on a regular basis.  I mean the pre-packaged kind, because even if they are gluten free (which is questionable), they are usually not very good for you.  But when we were on our honeymoon and traveling and getting all the final touches for our wedding done- I did indulge.  Due to time and due to my lack of being prepared otherwise.  And, of course, that's when it happened.

Saturday, almost 2 weeks ago, I got a 'gluten free' breakfast sandwich at the airport.  Within just a few minutes after finishing it, my stomach started to hurt. Ugh.  Now almost 2 weeks later I am STILL paying for it.  with no less than half a dozen 'emergency' trips to the bathroom every day.  It's ridiculous.  Maybe it's having it out of my diet for so long, I am way more sensitive than I would have thought myself to be.  Though, I am definitely more sensistive to ALL foods since I've been getting sicker and sicker.  I. Am. So. Tired. Of all this.  Jeez! I'm just hoping this is done soon! Just a good reminder to stay away from those products.


Also, I got my liver tests done again recently.  My numbers actually are looking better than they were a couple of months ago.  Some are in range, but my ALP is still pretty high.  I got my blood drawn Tuesday at lunch, and Wednesday morning the doctor's office was calling - it's never a good sign when they get back to you that quickly....He's not happy with them and wants to do a liver biopsy again.  Ugh.  I had my last biopsy a bit over 3 years ago.  I was 'classic stage 2' then.

In the beginning of all this, I was so sure I could beat it.  I'd read so much about people that have improved their condition with supplements and diet and lifestyle changes.  And at first I was having fantastic success, but....Things have not been so smooth lately.  And it seems like everything I try either doesn't help or just makes it worse.  It's disheartening to say the least.  Now, since getting my ALCAT testing, I do feel like I've actually been making real progress.  My numbers are recovering a bit and some of my 'new' symptoms have subsided- a little.  But not completely.

My joints are still hurting, just a bit less.  My skin flareups are lessening. I'm still not 'good' though, on any front- mood, fatigue - all those fun parts of having PBC (and AI in general) are still there. It may be that it just needs more time, and I'm giving it that, but it's still hard.

I do have an awesomely supportive husband and friends and family.  They all help, for sure.  But my certainty of reversing this; of kicking PBC's butt is just not there right now.  Right now I am hoping for slowing it down.  Giving myself some more years.

But, I have those nagging thoughts...

Most people are diagnosed at an earlier stage than me, with less damage.  How do I turn this train around?
How do I stay on top of this and get the right plan in place so that when/if it happens to my daughter, I can help her?

I'm worried about the biopsy and how the information will affect me.  I'm already trying to guess my reactions.

Initially, I'd hope to kick this, so I would have wanted some of the damage to be reversed...
Now I just hope that maybe, just MAYBE, I'm still at least the same stage...
But....What if I have more damage? Even stage 3?! ugh.  What then?

It's been 3 years.  A lot could have happened in that time, or...Nothing could have changed at all.

I got a message from someone recently who got almost 20 years before they were on the donor list - this is considered a 'long time' - that would make put me in my early 50's. That's not good enough.

I have lots of "I wish I'd done..."
I wish I'd caught it sooner.
I wish I'd taken better care of myself when I was much younger.
I wish...
But I am not holding onto those.

I can only control what happens now.

Not yesterday, and not even tomorrow.


So that's what I am doing, and what I have been trying to do.

I research on my own and use information from medical professionals.  I am constantly reading new data.  Trying to find the study, book, 'aha' moment that will be what saves me.  I find lots of info, and I apply everything I feel is applicable.  I share what I know in hopes of helping even just one person.  I believe it will take a lot of people, banding together, to change the mentality of the masses.  We are killing ourselves with the diet and lifestyle choices we are making.  We are killing our children.  It has to stop.

Most recently, I have found something quite startling about fructose.

It causes liver damage akin to alcohol.
Like alcohol!
That means that soda or fruit juice you're drinking can have the same effect on your liver as that glass of wine, that beer, than shot of whiskey.

I had no idea. Those of us with liver disease most certainly avoid alcohol, but did you ever suspect that glass of OJ?

Most of us have heard of Non-Alcohol Fatty Liver Disease.  I always just thought that was a problem brought on by obesity, but that is not the whole story.  You get that kind of cirrhotic liver not from alcohol, but from fructose.  Yep.

And how are we all getting so much fructose in our diet?  Not from eating fruit, that's for sure.  (As a side note, I also found that while fruit does contain fructose, the fiber in whole fruit slows or partially blocks the fructose from entering the liver, so you can safely eat moderate amounts of fruit).

What happens with fructose is that it is processed completely by the liver - unlike glucose that is taken up into the body directly and only marginally involves the liver.  And fructose follows the same pathways as alcohol in the liver.

So, where are we getting the massive amounts of fructose that is causing so much liver damage?

Fruit Juices.
Agave.  Yes, Agave, the sweetener that has been hailed as so awesome is 97% fructose! So while it does not have as much direct affect on you blood insulin levels - it targets the liver instead.

Just another nail in the coffin for processed foods and sodas, etc.

About 100 years ago, it took 5 days for the average American to consume the amount of sugar in 1 can of soda.  Even just 20 years ago, the average person only consumed 26LBs of sugar a year - now it's an average of 135lbs/year! More than quintupling! That's astounding.  Again, it has to stop.  We are not just killing ourselves, we are setting our children up for a lifetime of health problems and saddling them and everyone else with the financial and emotional costs of fixing it.

Here's to WATCHING your health.



  1. Could you please explain why he would want another biopsy when your numbers are terrific? I don't get it.? Your ALP was worse in March. Also, have you had the biopsy yet?

    1. I had some liver pain that sent me to Urgent care a while back, plus I'm still not back to where they were. And probably the fact that I've had so many additional new things like joint pain, I think it's all just a combination that's worrying him.

      I will write a post soon about the biopsy results.

    2. Have you gotten any results back or new blood work? Just curious as I don't see any new posts :( Hope you are doing