I need to think about this a bit more but in the meantime, spend some time reading these posts on mis-diagnosed MDS as a result of low B12. You'll see they contradict what your doctor's approach is regarding b12 levels. In the study, they did an aggressive loading approach with b12. 1mg injection, daily for 7 days.
http://forums.marrowforums.org/showt...&highlight=b12
http://forums.marrowforums.org/showt...&highlight=b12
There's a lot going on as a result of the celiacs. It takes a long time to restore and heal. And even then, you may not be able to reverse everything.
I will think through some things and post my thoughts later in hopes of maybe giving you some ideas to pursue.
This is difficult but I think you will find your path to healing.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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