I posted a thread on celiac disease in the research section that may help you ...
As luck would have it, the author of "Recognizing Celiac Disease" was recently at my support group and gave a lecture on copper deficiency. Here's a link to her book ...
I'm sure you could google copper deficiency and get more info too though ...
HTH ... X
PS. Thanks everyone for sharing your info on steroid therapy here. One never knows what one may have to try one day ...
Thank you very much. Where could I read what she said about copper deficiency? I searched in Google again for "copper deficiency and celiac disease" and found this:
Excerpt: "Copper deficiency is an uncommonly reported complication of celiac disease that has not received much attention in recent years. Copper deficiency may result in anemia and thrombocytopenia and also irreversible myeloneuropathy if it is not detected and treated appropriately. The prevalence of copper deficiency in patients with celiac disease is unknown. We describe 5 patients with celiac disease and associated copper deficiency diagnosed at our institution in recent years. All 5 patients had neurologic complications of copper deficiency and 3 patients also presented with hematologic abnormalities. We also review the literature regarding copper deficiency in celiac disease."
I don't know what myeloneuropathy is and when googling I don't find a definition either. Does anyone know? I guess it is neuropathy of the myelin and that it is a damage of the nervous system. That would make sense because I feel my nervous system totally sick in so many ways.
There seems to be many articles relating copper deficiency and celiac disease: http://www.google.es/search?q=copper+deficiency+celiac+disease
And copper deficiency and myeloneuropathy: http://www.google.es/search?hl=es&q...+deficiency&meta=&aq=f&aqi=&aql=&oq=&gs_rfai=
This one is very good and could explain so much of this horrible illness of mine: http://www.medlink.com/medlinkcontent.asp
So, given that I have had copper deficiency for at least 10 years in my blood tests, maybe I indeed have celiac disease after all. I guess that only time can tell if I get better when being gluten free. After 4 days off I feel no difference, but of course it may take many months. Let's see. I will do my best to stay off gluten. Now that I know this about the copper it supports the idea of this doctor.
Thanks a lot.
EDIT: I am kind of shocked by what I'm finding out related to copper. Copper deficiency alone may cause neurological disease and every kind of symptom resembling CFS. Also anemia and so on. What I don't get is why none of my lots of doctors visited in the past 10 years has ever paid any attention to my very low copper in blood. This CFS/Celiac doctor told me that I have the lowest copper levels he has ever seen, and he asks for copper tests to all his patients...
See this for instance: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077729/