Foolishly perhaps, I had pinned all my hopes on 2nd visit to Gastroenterologist yesterday. Not sure where to go or what to do now :
I do NOT have Coeliac disease - although I cannot find another reason for flattened mucosa in duodenum found during gastroscopy, blood tests have ruled it out now.
All blood tests done were "normal" and I don't have any absorption problem.
Levels of B12, folate, ferritin, vitamin D were all "normal": unsurprising to me, since I self-inject B12 every other day, and supplement folate and ferritin (etc) daily, because of recurring deficiencies despite a diet chockablock with all of these. Vitamin D and Risedronate I take as prescribed because of osteoporosis.
She has decided that I have IBS - due to Lactulose Breath Test result of either SIBO or "fast transit" (IBS) - and does not think it is SIBO. SIBO was first suggested by Haematologist as the reason for my raised MMA levels because she had decided it was not B12 related. Not sure if IBS alone would raise MMA ...... ?
She could not explain why I often wake up around 5.30 am with a mouthful of watery red liquid that burns my throat (reflux ? blood ? both ?) and wakes me up with a pounding heart.
She said IBS would explain my daily diarrhoea and groin pain/ pressure but admitted that could not explain any of my other symptoms, which were not gastroenterology related. She suggested a dietitian and FODMAP diet (already done and made no difference), then a neurologist (already done and nothing unusual found in nerves or brain), then back to my GP (who has already told me that this has gone beyond primary care) and then suggested a psychiatrist.
This, to me, indicates the end of the line.
I asked if a psychiatrist could do anything about my hair loss, my bleeding gums, my sore and bleeding mouth.
She said she thought I should go back to work, that it would do me good. I told her that I was only working every Friday and that meant spending the whole weekend recovering. At Christmas, my arms were shaking just decorating the tree and I had to do this in stages- I am a master carpenter .. maybe I should be saying "was" ?
She did suggest (don't they all?) stopping the B12 to see what happens, but I told her it had taken me a long time to get to a stage where I was employable in any position because of my cognitive problems etc. so she said that I should stay on the B12 (although you know that won't be in the report).
She capitulated about the SIBO and has prescribed antibiotics. That might help.
I asked her about Hashimoto's and she arranged a blood test for TSH, common auto-antibodies and cytoplasmic Abs panel. This is not exactly what Marz has suggested to me in the past, but by then I was in tears and just wanted to leave.
She had not read the letter that the Metabolics consultant sent her, although it would not have helped me because he was dumping me back on her anyway- with suggestion regarding poor protein uptake.
As you can imagine, by now I am getting rather downhearted. Getting better is a long slow process and not without setbacks.
Sorry this post is so long, but I've tried hard and really can't do this alone.