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Hi Everyone,
Thank you very much for your help for Tammy! Here are the replies:

she needs to see a good haematologist.
I have coagulopathies that caused osteonecrosis (bone death in 10
joints).  I had a Dr Glueck in Cincinnati run some tests on me and he
discovered the genetic cause for them and then prescribed a course of
treatment.     I manage most of my problems by taking certain
vitamins in very high doses - folate, b6 and b12.

http://www.jewishhospitalcincinnati.com/cholesterol/osteonec.htm

My particular problem means that I can never take hormones, ever.  I
suspect that your friend is probably similar.

************************************
Very, very ironic that you send this message today!!  I have been 
corresponding to the  Antibody Phopholipid Syndrome foundation of 
America (ASPFA  http://www.apsfa.org/). My brother also had 
unexplained bilateral multiple pulmonary emboli in December of this 
year.  They could find NO reason whatsoever why this would happen and 
he is 38!  My children had severe clotting abnormalities while on 
gluten---which definitely resolves when we are vigilant about being 
GF.    There still seems to be so much confusion on the relation of 
various autoimmune syndromes.  They almost had a really, really hard 
time believing that our symptoms disappear with a gf diet.  Oh 
well!   You should send your friend to this site----but only after 
she has tested for Celiac at Enterolabs!!  The docs at this site are 
pretty unwilling to acknowledge the connection between gluten and autoimmune.

****************************************
Susan, your friend needs a serious talk with her doctor in order to 
become educated about her health problems! If she has a history of 
pulmonary emboli - which is life-threatening - she will need to have 
occasional blood tests. One of the blood tests is called Prothrombin 
Time and one of the components is expressed by INR. She does not 
*get* INR, nor does INR reappear as a disease, it is simply a way to 
measure the "thickness" of her blood, or it's clotting ability.

If her blood does get too "thick", she needs to know this and take 
blood thinners again. Coumadin, or it's generic equivalent, Warfarin, 
is used by millions of Americans for this purpose and is the accepted 
and appropriate medical treatment. If she needs to take this medicine 
again, I hope she will not think she is being poisoned! The reason it 
is used in rat poison is because it 's used in that case in huge 
doses which make the rats bleed internally and die. However, in 
appropriate human, dosages, it could save her life.

Once on a blood thinner, this person then needs to have a blood tests 
every couple of months to be sure that the right balance of 
medicine/clotting is maintained. Some offices now have the equipment 
to do this blood test by fingerstick rather than by 
venipuncture.Perhps she could find such a facility.

Another blood thinner is heparin which is given by injection. In 
reality, your friend can be glad that her condition 1) does not need 
surgery 2) CAN be controlled  3) needs only a small daily pill and 
not an injection. But she needs to cooperate with and trust her 
physician and communicate with him in order to get the care she 
needs. I hope she will. Another blood clot might not go to the lungs 
- it could go to the heart - or to the brain.
**************************************************
have no personal experience with pulmonary embolism, but my feeling 
is that it doesn't hurt to suggest a link to celiac to anyone who is 
open to finding the cause of their illness.  Then it is up to the 
person, of course, in terms of what they want to do with the info.

I hope that your friend can get tested for CD; she's so young to have 
to face such a life-threatening illness, if in fact there is a gluten 
connection and hopefully she can go GF and get great relief.

***************************************************
In October, I had multiple clots in both lungs.  The only risk factor 
was that I was over 35 and was taking the pill to level out my 
hormones.  I started taking them in May/June and a month or two later 
I started feeling short of breath when I exerted myself and it 
gradually worsened.  I didn't think much of it--just figured the 
excess weight and not being in shape was catching up with me.

In September, I got the flu, which turned into pneumonia...or so we 
thought at the time, anyway.  When the breathing was still a problem 
after the pneumonia was gone...only worse, the doctor sent me in for 
an echo cardiogram, which came back normal.  He was going to send me 
for asthma testing, but before that could happen, I passed out and 
had to be taken via ambulance to the hospital.  I'm just thankful 
that my husband and sons were right here and I wasn't out in a store 
or driving or something.

They found my clots with a dye-type CT scan.  The pulmonary 
specialist (aged in his 60's) said he had only seen one other case 
this bad in his career.  It was very scary.  I'm still on Coumadin 
(generic name is Warfarin) for another couple of months.  While it's 
a scary drug, I'm a little scared to go off of it because I never 
want to go through something like that again.  I'm thinking they'll 
probably put me on Plavix or at least a low-dose aspirin, but I'm guessing.

At the same time--September/October, I was trying to figure out if I 
had celiac or a gluten intolerance, so I had been working on going GF 
when I was admitted to the hospital.  They continued it there and 
I've been GF ever since.  It's been such a dramatic difference.  The 
GI doc won't do a biopsy while I'm on Coumadin, of course, so this 
works for now.

Something I was reading about was that celiac can be a problem in 
relation to clots because the body isn't absorbing the right amount 
of vitamin K, even if we are eating the right amount.  Also, I was 
popping at least a couple of antacid tablets every day because of the 
intestinal problems.  Antacid can also deplete the vitamin K, as can 
antibiotics.  Now, I don't know if this is the cause, but it seems to 
make sense.

******************************************
It is totally understandable to be remember the embolism experience 
with fear...
My husband has long had a blood /clotting abnormality...likely 
genetic.  I am celiac...he is not.

It is difficult to say with certainty that celiac is connected to 
abnormalities in clotting...

My husband has done very well once he went on and monitored VERY 
CAREFULLY, I repeat very carefully and very often, the coumadin he 
had to take and still takes..going on twenty years now.  Three are a 
couple of dietary restrictions (foods that promote clotting)... The 
blood testing is essential, and simply becomes a fact of life.   He 
has had three embolisms...but none once he went on coumadin 
permanently.   He travels abroad constantly (as you know long air 
plane trips are a major contributor to embolism).  He's doing just fine.

My heart goes out to anyone who has this burden...but I also know 
from our experience (and it may not be the same as anyone else's) 
that if you conquer the fear part, hook up with a good HEMATOLOGIST 
(not a GP...GP's can usually manage long term testing.. someone who 
has severe/difficult blood issues needs to be seen for a while by a 
first rate blood specialist, usually to be found in an 
academic/research /teaching hospital....you should , in the long run, 
do well.  This is not something to fool around with.  You need to 
find the right physician.

It's a scary business...but it can end up just fine.

*********************************************
This person is at serious risk and should not have
just taken herself off coumadin/warfarin!  Please
encourage her to see a hematologist to diagnose her
correctly and work with her.  She could be on shots
instead of coumadin, this would require few, if any,
blood tests.

***********************************************
If she is bleeding too much, maybe she could use a lower dose??  I 
think she should find a hematologist at a university hospital if possible.

................. continued


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