Hi Marlene and everyone,
I started taking B12 a couple weeks ago. I suspect I've had undiagnosed celiac disease for a long time now (since the 1990s). I may have been tested for B12 but I have no record of the results (in Canada they don't give you results unless you specifically ask, which is very annoying to say the least). So I assume way back when I was first diagnosed in 2008, that B12 and folate would have been something they would have tested, but I don't know for sure.
Yesterday I did a search for Gluten in "Blood" and just happened to come across this article.
http://bloodjournal.hematologylibrar...d-448bb8e8572c
I have most of the symptoms - pancytopenia, chronic diarrhea, IgA deficiency, dermatitis herpetiformis (DH). The DH started around the same time as my blood disorder, which is a normocytic anemia. At first they diagnosed PRCA, I was negative for parvo and thymomas and stuff. I thought the DH was a result of the exjade. Just recently I went on a strict gluten free diet and the rash is now gone, 100%.
I am in the process of being referred to an internal medicine specialist, someone who might be able to put 2 and 2 together and come up with 4 instead of just 3. I've been transfusion-dependent almost 4 years now. I have been treated with cyclosporine, IVIG (which was disastrous), ATG/tacrolimus (which was disastrous), and then I finally refused to do anymore treatment. I saw the transplant team in 2011 where I was told my bone marrow was normal. I was offered more immune suppression then and refused. I'm on an alternative treatment & transfusions.
It's early days for the gluten-free diet (since May 25) but already my platelets are up from 27 to 52, my WBC is up a bit from 0.6 to 1, neuts are doubled, and my HGB isn't dropping as much.
I am taking 1000 mcg B12 a day, and I am pretty sure I get lots of folate through veggies. My ferritin is around 1300. I try not to take exjade very often but sometimes I have no choice.
What do you think? Should I be supplementing something else? I'm not big on supplementing as a general rule, but I may have a long term deficiency because I have been anemic since at least 2003.
Deb