Posted by evie15422 on Feb 21, 2009; 5:04pm
URL: https://www.es-forum.com/cardiac-tests-tp1548391p1548499.html

Hi, Daisy,
 
This is totally off-topic from ES and I would usually send this type of letter to you off-forum.  However, I see a trend here of women with alot of the same problems lately, and incase these people also would be of similar constitution, I have opted to "bare all" (lol) and write this in open forum. 
 
I am NOT saying this is your problem, only that it may be.  You mention "runs" and I am guessing here that you mean diarrhea.  In 1995, 2 obscure Italian doctors took a dozen of their patients who they had dxed with CFS and put them on a celiac diet.  In 8 months, all but 2, if memory serves, returned to normal health.  The other 2 took much longer, but one of themimproved later, and one remained ill but much improved.  (Later I believe they discovered she also had a fungal or bacterial infection, treated that, and she improved.)  Their study was poo-pooed and ignored by the CFS/allopathic med crowds.  The study got a 3 line paragraph entry in the "TheCFIDS Journal"--the largest CFS publication in the US at the time.  PwCsdidn't want to believe that "just" diet could cause their problems (and didn't want to go gf because, in the words of a friend of mine with CFS, "all the enjoyment I have left is the food I eat".)  Allopathic docs didn't
want to believe CFS was due to diet because they made so much of their living from PwCs and there is no money in a dx that needs only diet to cure it.  You would be quite surprised the number of celiacs who were initially dxed with CFS.  I was one, as well. 
 
Celiacs have increased risk of having ALL SORTS of problems.  Today, I just learned for the first time that 70% of all patients with hypospleenism are celiacs.  I have personally been dxed with well over a dozen other problems which are caused by or secondary to celiac disease--osteoporosis, asthma and COPD, diabetes, anemias, nutritional difficiencies of all sorts, liver cirrhosis, auto-immune tmj, peripheral and other neuropathies, gut dysbiosis, cerebellar damage, ataxia symptoms of all sorts asso with that, adrenal insufficiency, a blood clotting disorder, hypothyroidism....  (And if I later mention I have something else, it is because even I can't remember all my health problems in one sitting!)  I was dxed with mitral valve prolapse during one of my bouts of anemia, as well.  I also had been dxedwith MCS and fibromyalgia but since then have figured out on my own thatFM, for me personally at least, is just another name for lymphatic
congestion.  Allergies and sensitivities aplenty abound in celiacs (and me).  Today, as a result of the diet, I am largely normal, healthwise, (understand this is relative to where I was when dxed--I had been almost entirely bed-bound  for 13 years and ill my entire life prior to dx.)  I have still tremors in my hands and toxins in my body, mcs and es.  I haverecovered entirely from osteoporosis and hypothyroidism (these test now asnormal), my blood sugar is normal by sugarfree, sugar supplement free diet.  I have occasional bouts of fm--usually caused by emfs.
 
Celiac disease was found (by testing the blood bank supply) to be active in1 out of every 133 Americans in 2000 or 2002.  I just read recently thatonly 3% of those Americans have been dxed.  Glutens are now thought to "operate" by damaging the tight junctions of the cells of the mucus membranes in those with celiac disease and gluten intolerance.  It damages the gut, then attaches to tranglutemas (spelling???) and then is easily transported by that to all the cells of the body.  From the blood, it damages the blood-brain barrier tjs.  Researches have found it has a special affinity for certain damage--the bbb, lungs, liver, pancreas.  It also causes up-graded immunity and auto-immunity states, which lead then to all types of auto-immune diseases and sensitivities.  I could write for another 4hours and hit only the tip of the iceberg with the problems researchers now know can be caused by gluten intolerance.  (Celiac disease is a specific
type of gluten intolerance.)  Celiac disease was traditionally thought to be a digestive problem--most docs were trained to see it only in that light.  Researchers now know this is not the case.  Many celiacs are now dxed who have no digestive symptoms.
 
I recovered from CFS nearly entirely--when I have problems, I can deal with them and bring myself back to normal energy.  It took:  extreme avoidance of glutens and going dairyfree for a year (and I ultimately could not tolerate lactose and now have to use lactaid milk, but can eat yogurt, cheese, cream, etc ok).  I also had to treat gut flora problems and address acid metabolism and nutritional deficiencies.  Especially, it took the two supplements pantethine and calcium AEP--when my bp crashes, I have totake these with water every 20 or 30 mins till my bp comes up to normal.  This will avert for me the fatigue which follows and avert most of the other symptoms of CFS.  These also help with most of the autonomic nervous system symptoms but they do not totally abate them.  I then had to go on a controlled exercise regimen to get back my stamina and  improve my energy.  (I have to sign off now so can't write about this, but if anyone wonders
how I did it, just write and ask.)  I also personally found molybdenum and B12 to be key, as well as iron, which I was very deficient in when dxed.  B12 and molybdenum helped my liver detox pathways.  BTW, my liver function tests now test normal, as well.
 
Sooo, you should try to see a GOOD celiac knowledgeable gastroenterologist and be tested.  DO NOT GO GLUTENFREE BEFORE THE TEST.  And if you are gluten intolerant now and gf, do not seek a further dx, but rather go over every item in your diet and your laundry and hygiene products, weeding out all the gluten containing items--even food made on equipment used for gluten products should be avoided.  (Until you have been gf long enough to recover--then you can add back things which might have only minor contamination if you don't react.)  Now you also have to be aware that wall boardsand all sorts of other items can be made with glutens as well.  I reacted to removing wallpaper last summer--the paste was apparently wheat paste--and was ill for a couple months from that.
 
I have to go, but be assured that you can overcome CFS.  There are various subgroups of PwCs, but if you are of the subgroup with serotonin in your urine (the test is the 5-HIAA 24 hr urine test which is very inexpensive as tests go), then you are the same subgroup as me.

Hope this helps and feel free to ask questions by forum, or if not appropriate, privately,
Diane  Oh, ps... you might need to address your electrolytes too.  You mention shortness of breath alot--that responded for me to taking an electrolyte tablet.

--- On Fri, 2/20/09, mcsdaisy <[hidden email]> wrote:

From: mcsdaisy <[hidden email]>
Subject: [eSens] Re: cardiac tests
To: [hidden email]
Date: Friday, February 20, 2009, 6:59 PM






Hi Diane,

The symptoms and weakness have been so bad (palp, skipping, irreg
beat with SOB, crushing adn burning chest pain with SOB, anxiety,
sweats, runs... all the symptoms of a heart attack or angina but when
I've gone to emerg blood tests showed no evidence of having had a
heart attack.
Yet after such episodes I am ssoooo weak, tired, sore and it takes
ages to build up my activity levels again.

I think it is ANS related as you suggest but more than that - also
CFS related my doc thinks - more to do with diastolic
functioning ... ? (which doesn't show on the echo either?)
I don't really expect that they'll find much on the Echo b/c they've
never found anything before (except mitral valve prolapse years ago -
which didn't show up on the most recent test 4 years ago) - except
that I've been more disabled by the symptoms lately.

I'd rather not do the echo if it will make things worse (doc does
leave it up to me thankfully)
and if there were better tests that show the functioning
problems...I' d do that.

I wish I could find a specialist who knows about this (like
Dr.Cheney).. .

If anyone has any good CFS/heart specialist in Ont, please let me
know.

Thanks!

--- In eSens@yahoogroups. com, Evie <evie15422@. ..> wrote:
>
> Hi, Daisy,
>  
> What kind of cardiac problems do you have, Daisy?  There are
cardiac symptoms which go along with ES which are not really cardiac,
as much they are autonomic nervous system/ adrenal related.  These
include rapid heart beat, skipped beats, losing your breath due to
fast heart beat....  When I began having problems (decades ago), I
had EKGs, etc, and nothing organic was found because it ended up
being autonomic nervous system related.  Of course, you should have
tests if you haven't yet, because, for you, it could be heart
related!  But don't be surprised or alarmed if nothing major is found. the
> computer but did a quick search - couldn't find anything re
testing...
>
> Does anyone have any thots on Echocardiograms - any use doing it?
> Will it cause lasting negative effects...?
>
> What about Cardiac Impedance testing? or something like that that
will
> measure diastolic function -which is more likely to be a problem in
CFS.
>
> Does anyone in Southern Ontario have any good experience with
cardiac
> or other specialists who really know and understand our problems?
>
> Dr.Cheney is good but he's too far away - there must be others
around
















     

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