<<Disclaimer: Verify this information before applying it to your situation.>>

Subject: Organ donation summary


Sometime back, I asked whether or not celiac patients would be able to donate organs when they die.  The responses were all over the map.  I'll let them speak for themselves:

1.   I don't think you can pass along celiac like that, but even if you could, so 
what? Most folks waiting for transplants are going to die, are living a 
terrible existence or are going blind. I'd take celiac any day.

2.   I heard a physician say that everyone who has major surgery develops a leaky gut and recommended that all surgical patient be put on a GF diet. Perhaps that is why so many people with CD say surger was their trigger. All my symptoms certainly worsened after open heart surgery. Maybe the transplant does not transmit CD but the surgery triggers it. - only MHO so take with a grain of salt.

3.   another thing to consider is to donate your body to a medical school.  they 
use it for a year and return the ashes to your family...no cost and you're 
doing a lot of good.  it's an option to expensive funerals

4.   I  think we should all donate anyway, even if we have celiac.  This is my story regarding this issue.  Eight yrs. ago, I had a bone marrow transplant for leukemia.  After the transplant, I developed celiac so my dr. thinks the celiac came from the donor.  The donor refuses to get tested - he doesn't want to know if he has it.  If I hadn't had a transplant, I wouldn't be here.  I would rather be alive with celiac than the alternative.  I certainly don't mind the celiac because the transplant has enabled me to at least live 8 more yrs.  I think it would be the same with an organ.  Life with celiac is better than death. 

5.  another thing to consider is to donate your body to a medical school.  they 
use it for a year and return the ashes to your family...no cost and you're 
doing a lot of good.  it's an option to expensive funerals.

6.  I have no clue, except if I was going to choose Celiac or possible death 
from not receiving an organ, I think I would choose to become a Celiac.  I 
do know that I asked about donating blood once and they said it wasn't a 
problem

7.  
I donated a kidney to my husband in 2002.  He did not have Celiac before, nor does he have it now.  My gastro and the tranplant surgeons assured us there is no need for concern.  I do not have any complications of any kind post donation.  My creatinine runs 1.1, typical for a person with one kidney.  

I encourage you and everyone to donate all organs and tissue - what use will they be to you in the afterlife?  

I do have a personal passion as my husband is once again on dialysis and awaiting a third transplant.  The first was a kidney from his sister - he lost it to neoral toxicity in less than 6 weeks, the second from me after he suffered a heart attack and the dye used to 'save' him affected the transplanted kidney.  He has a tremendous resolve to live........

8.  I have no clue, except if I was going to choose Celiac or possible death 
from not receiving an organ, I think I would choose to become a Celiac.  I 
do know that I asked about donating blood once and they said it wasn't a 
problem.


9.  My name is Moira and I worked with Organ Transplantation for almost 20
years.  The passing on of diseases to which you refer has to do with
infectious diseases such as AIDS and Hepatitis, not the auto immune
condition that we with CD suffer.  I have been an advocate of Organ donation
for a long time and there is nothing about your condition that should
prevent you from signing on as a potential donor should you have a tragic
accident, nor would CD "infect" a potential recipient.

I applaud your forethought in this very important decision as that is the
starting point for giving others the "gift of life".  I am taking the
liberty of posting this to the entire list, which I would not normally do,
as I feel this is a very important topic.

10.  If I was dying and needed a heart, kidney, ect. I would live with the celiac disease. Good luck on your decision.


Visit the Celiac Web Page at Http://www.enabling.org/ia/celiac/index.html
Archives are at: Http://Listserv.icors.org/SCRIPTS/WA-ICORS.EXE?LIST=CELIAC