March 25, 2011

Bursting of Bubbles - Celiac Disease

So in a previous post (here) I told about the possibility of getting a transfusion from my father because he had healed himself of Celiac Disease.  Well the bubble was burst yesterday when we got a letter from the University of Utah.  It stated that although they were okay with the procedure and that Dr. Zone (that's who my dad has been under study with) was also for the procedure.  The Director of the Transfusion Department was not.  He stated that they couldn't say for sure that I would be helped by this procedure as they don't really know how my father's disease was put into remission.   He stated that he was concerned that some adverse event might occur. He was particularly concerned about the possibility of transfusion related and acute lung injury,  which is a cause of death related to transfusions. He was very concerned that he could think of no reason why this treatment might be beneficial and that indeed there is a risk associated with it. He said "There are a lot of risks with this.  Transfusion Associated graft-versus-host, alloimmunization to RBC and HLA antibodies, transfusion transmitted disease, etc.  And he saw no justification for this, no upside, and many potential downsides.  

So for now I will have to continue to live with the state of my disease.  I will remain on a gluten-free diet in hopes that someday we may have a way to cure this disease. 

Thanks to all for your thoughts and prayers!

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