The Gut and the Immune System

I know I've been absent for a while.  Shortly after kitty passed away I got to spend some quality time in the local hospital (I'll talk about that in another post) and then adopted two new kittens which have been running me ragged.  On top of all of this I'm in the middle of my normal winter crash and have little to no energy.  So here is a cool vid that won an award.  It explains how the gut and the immune system interact.  I'm going to have to watch it several times over since it isn't sinking in right now but I love the graphics and I recognize a lot of the tags from various CFS papers/articles.

Tech Vid About Gut Lining

This is a somewhat technical video about how the gut lining works.  While they mention IBS specifically, the way the gut works and doesn't work is the same when the gut becomes damaged.  This could be some of the problem in CFS.  The good news is that it can be cured via diet.

http://bcove.me/4wul3t4o

Curiouser and Curiouser

Had my physical today.  My B12 has gone up 100 points.  Yay!  Other than being sick and gaining weight I'm in perfect health.  Even my thyroid numbers are back down to normal.  The only abnormality that showed up was low iron.  This is a new one so we are back to a GI workup which they decided against back in October.  They took 5 more vials of blood for iron and Celiac tests.  The Celiac test is going to be useless since I haven't been eating wheat for over 5 years.  Even if I had Celiac the test would come back negative.  I'm beginning to wonder about the IQ of my doc or maybe he is at the point of stabbing at ghosts since I'm still sick and he can't find anything obviously wrong.

Heh, I decided that it would be a good thing for him to see me crashed so I did too much yesterday and again this morning.  By the time I was in his office I had the shakes, couldn't walk straight and was having trouble speaking.  When I get that bad I also cry easily so of course he was asking me complicated questions and when I tried to answer I got so pissed off at not being able to talk properly I started crying.  I was also having trouble understanding him so when he asked what was wrong he got the dumb look from me.  I couldn't figure out what he wanted to know.  Then he asked if I was depressed which I'm not just having a bit of a cry.  I've already forgotten a good deal of the meeting and I was there for two hours.  I'm still baked.  I wonder how many days it will take to recover from this?  I think it was worth him finally seeing me at a bad point instead of my usual chipper self.

GF Pancakes

Scarfed from

Fro those in the US Bisquick just came out with gluten free mix.  It makes "normal" tasting pancakes!  Yay!  Since I make them for one, I just mix up the wet ingredients and only use half putting the rest in the fridge for the next day.  Then I mix the half wet with half dry and *poof* pancakes for one.  Of course I usually mash a banana in to it.  These are the first non yucky pancakes I've had in the five years I've been GF.  This is very exciting!

Check, 1, 2, 3

Test results report
Three things showed up in my first round of blood work done at the infectious disease office: high sed rate, elevated CMV (a type of mono marker) and low B12 (240 pg/mL).

Now my sed rate has always been something of a mystery to my docs.  It is ALWAYS elevated.  This is nothing new and my old docs used to dismiss it out of hand as part of my osteoarthritis or the latest bruise I had acquired.   The ID doc didn't give me a number on this so I don't know if it significantly different now than before.  I told my regular doc about it so he is probably going through my old blood tests now to see if it trending up or down.

The CMV test while elevated doesn't differentiate between something or other that I can't remember.  Anyway it is significant enough that I need another blood test to see the difference between CMV IgG and CMV IgM.  What this means to me I've forgotten already.  I'll be reading up on it tonight.

I've been reading about B12 deficiency on Wikipedia.  Yes, I know, not the most reliable source but it is usually my starting point before I do more research on more reliable web sites: I often get good search terms from the Wikipedia articles so I get better hits off Google. I'll post more about B12 later after I've done some more research on it.  Suffice it to say they put me on 1000 mcg/day.  I took my first dose today so it is going to take a while before I start feeling the effects.  According to the ID doc, it will take four months or longer to build my blood levels of B12 back up to 'normal' levels.  I will have to have a B12 blood test again in four months to see how I'm doing.

The ID doc didn't want to comment on my CT scan until the final report was available.

The upshot of the whole thing is that the ID doc suspects that a majority of my symptoms are being caused by a B12 deficiency.  However, they don't know why it is so low.  They are thinking along the lines of malabsorption in the small intestines but this can have several causes including but not limited to Celiac or Whipple's disease (yes, I had to look that one up and yes it is rare).  They decided that they really wanted a second round of blood tests first before doing a small intestine biopsy for the other diseases.  So I donated another four vials of blood to the cause and I have to wait another three weeks for the test results but at least I get to try out the B12 supplements in the meantime.  I am so hoping this is going to be my magic bullet.  I will be over the moon happy if I suddenly start feeling better just because of a vitamin supplement.  I know this isn't the cure but at least I will be able to resume showering standing up.  And that will make me a very happy woman.

Whatever the results, I learned a huge thing during this visit.  My ID doc and I aren't speaking the same language.  What I have is weird and hard to describe.  We had the worst time trying to talk about my not being able to walk.  It isn't really muscle weakness but a weird combination of lack of energy and lack of spacial awareness.  If I close my eyes or I'm in a dark room then I seem to be floating in water and I can no longer tell which way is up.  I'm not dizzy per say but I'm definitely having trouble with up and down.  He kept asking me if I had 'gait disturbance' and I have no idea what that means.  I think I am going to have to get very specific when I describe my symptoms.  I can no longer use general but somewhat inaccurate terms such as dizzy or fatigued.  They just don't fit what is happening to me.  This was a huge breakthrough in communications.

In the News

Just doing some on line reading and ran across a couple of  interesting articles.

From Phoenix Rising is an excellent article on balance and CFIDS
http://www.forums.aboutmecfs.org/content.php?231-Lost-in-the-World-the-Romberg-Stance-and-ME-CFS

From Science Digest is a short article on Gluten Ataxia
http://www.sciencedaily.com/releases/2002/04/020424073708.htm
I found this particularly interesting since my worst symptoms when I used to eat wheat were neurological symptoms.  I did have some digestive issues but the worst stuff was the brain fog and extreme fatigue (nothing like CFS but bad none the less).  If I was presently eating wheat while dealing with CFS I would be bed ridden instead of housebound.  Being wheat free has made a huge difference in my life.

There was also this article on Tai Chi on Phoenix Rising but it address non CFS/FM type illnesses.
http://www.forums.aboutmecfs.org/content.php?232-Tai-Meditation-in-Motion-by-Jody-Smith  I am interested in doing Tai Chi and it will probably be the first form of exercise that I take up when I am more mobile again.  However since I'm 80% housebound right now with about 4 hours of functional time a day adding Tai Chi is not currently a viable option for me.  That said I did find this web site: http://www.5min.com/Video/How-to-do-Seated-Tai-Chi-Routine-32271715  She goes a bit too fast for my taste and there is no instruction with it but it is a good start for a seated routine.

This one made it on to The White House Chronicles.
http://whchronicle.com/2010/09/the-awful-disease-washington-forgot/
Maybe we will become visible after all.

Celiac Awarness Day!

This is a busy week.  It is Invisible Illness week which I will post about later.  It is also Celiac Awareness Day.  I got diagnosed about five years ago with a wheat allergy.  I was a mess for about six months prior.  The doctor couldn't figure out what was wrong with me.  I was beyond tired.  Actually worse than I am now with CFS.  I was dizzy.  I would almost pass out.  I couldn't concentrate on conversations or driving.  My brain barely worked.  My joints ached all the time and I had horrible intestinal problems.  My doctor never figured out what was wrong and he is a gastroenterologist.  You would think he would know to check. 

It was a nutritionist I happened to be seeing at the time who figured it out.  She had me do a simple thing to test her theory: don't eat wheat for two weeks and see what happens.  Turns out this is a lot harder in the US than one would expect.  In this country wheat is put in EVERYTHING and I do mean everything.  Within the two weeks I felt almost normal. Then I forgot and ate a sub.  The plumbing problems returned instantly.  The brain fog and tiredness was back the next day.  It was confirmed: I had a wheat allergy.  I went to my doc and he did a simple blood test on me that showed that I did NOT have celiac but I had a bad reaction to wheat.  I started a GF diet and within a month was back to normal.  I was ecstatic. 

Yes, a lot of my symptoms mimic CFS.  Although from experiencing both, the symptoms do have subtle differences.  The problem with true celiac is that the symptoms stem from the damage done to the colon by the immune system.  Which means, each person will have a different symptom set depending which part of the colon gets damaged.  Most of the symptoms are from vitamin and mineral malabsorption.  Celiac itself is symptomless. 


Here are a few useful links:

Symptom checklist
Awesome Online Vendor
My food blog
The web page
The Celiac Disease Foundation

I was just reading on another blog that some athletic teams are now eating GF before big races.  There is some anecdotal evidence that going GF reduces inflammation in the body.  My Mom has gone GF even though she did have full blown symptoms and she is now experiencing less bloating and fewer achy joints.

WARNING:

If you suspect that you are celiac get the blood test done FIRST.  It will only test positive while you are eating wheat.  If the blood test comes back negative then try going GF for two weeks and see if you feel better.  If you do these steps in reverse you will have to go back to eating wheat for at least a month prior to getting the blood test for it to be accurate.