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Originally Posted by Healthgirl
Wow, I can relate. Some of these doctors just aren't even capable of even acting like they care to figure things out or they just think they know everything. Seems like I am stuck between sweet ones who shrug their shoulders and say they wish they could fix me or know what caused this and the others who don't care about the cause and just tell me to take meds and deal with it.
I'm surprised you haven't had the celiac test yet. It was recommend that I have it done again since 7 years ago the tests have been much improved according to a gastro I just saw. I haven't had gluten for 1.5 yrs though, so I'd have to go back on it for the test which I am scared to do. I contacted Dr. Mullen who is a gastro at John Hopkins and told him my situation. He said that he doesn't think anyone with an autoimmune process should eat gluten. Have you ever tried to completely go off for 6 months?
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Yes I've been off gluten completely before - lost lots of weight and had barely any IBS type symptoms. Then I came off Methotrexate and also had myself tested privately for Coeliac because this was when the stomach issues took off and the neuropathy started as pins burning pins and needles and shooting pains. I was misinformed by the private clinic in Edinburgh - who said that because it was an antibody test I didn't need to eat gluten prior to being tested. My IgA was raised - same again last year - but the antibodies were in normal range so I assumed that my tummy problems were because of GORD and my gallstones. Had a gastropy last year but nothing showed up apart from some staining which the theatre nurse showed me afterwards. However the horrible surgeon (a macho bully) hasnt acknowledged the reflux staining in his summary and no photos to check. I have since moved to a new area well away from this hospital and surgeon and I don't think the new ones believe how much falsification went on in this remote hospital!
So new GP is a bit concerned about my forever fluctuating CRP and PV/ ESR and often high total protein. I think she wants to rule pancreatic or liver disease out. Now that my gallbladder has been removed it can't get the blame for everything and she thinks it's worth retesting for Coeliac. But she's only prepared to give me two weeks on toast before testing. I don't think it will show positive after such a short time but her view is that I've been breaking my gf diet quite often as we are fairly nomadic at present - so a few weeks of full on gluten should be enough to get an honest result.
We are in quite similar boats i think. The thing that I just don't get is how the neuro can say it's all rheumatology related SFN and the rheumatologist can say it isn't. Meanwhile I'm going numb?! I actually scalded myself yesterday near my throat because I couldn't tell how hot some soup was until I felt a blister flapping about near my tonsils!! Why is it okay for nerves to be dying but a serious business when other organs and joints are affected?