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Autoimmune diagnosing

Posted by bunnysammy @bunnysammy, Jun 30, 2018

Hi, I'm just a bit frustrated and wanted to talk to some people going through the same things. I thought I had Celiac disease but because I really don't like going to the doctors I avoided getting a for sure diagnosis and went gluten free. It's definitely helped with a lot of my symptoms. I got a blood test a few months ago for my doctor. My platelet count was extremely low as well as my iron and b12. She told me it looked like something autoimmune but I didn't know what that meant and she didn't press me to see other doctors about it. She also mentioned something seemed strange with my bone marrow. I didn't think anything of it. I thought the vitamins she suggested were all I needed. Well in the past couple months I've been in more pain than usual. Sharp chest pains, stiff and painful joints and I ache everyday. I've also had a persistent low grade fever. I get sharp pains in my hands too. I feel super weak and fatigued daily which I've always had bouts of but for awhile being gluten free helped. I can't keep up with my boyfriend when we go on walks anymore. My pain keeps me up at night. I have a few other symptoms but these are the most frustrating ones. Does anyone have any idea what this could be? I set up a doctors appointment but it'll be another month till they can see me.

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kayabbott | @kayabbott | Nov 1, 2023

Not a great hobby, but I collect autoimmune diseases. Considering the c-Diff bacteria, did your doctor mention repopulating your GI tract (probiotics can help, or poo-transplants [ick]). Just wiping out the bacteria without replacing with "good" bacteria can be hard. Hopefully you can get the colitis under control soon, without the Budesonide. Keeping a food log to see if there are any triggers can be useful. RA is a nasty disease; I hope that is also well controlled. Hard to escape health problems and the stress that exacerbates them.

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pb50 | @pb50 | Nov 1, 2023
In reply to @kayabbott "Not a great hobby, but I collect autoimmune diseases. Considering the c-Diff bacteria, did your doctor..." + (show)
@kayabbott

Not a great hobby, but I collect autoimmune diseases. Considering the c-Diff bacteria, did your doctor mention repopulating your GI tract (probiotics can help, or poo-transplants [ick]). Just wiping out the bacteria without replacing with "good" bacteria can be hard. Hopefully you can get the colitis under control soon, without the Budesonide. Keeping a food log to see if there are any triggers can be useful. RA is a nasty disease; I hope that is also well controlled. Hard to escape health problems and the stress that exacerbates them.

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No. I took vancomycin, cleared the c-diff, had the colonoscopy, went on budesonide. And had a miraculous result. What I have now is minor compared to 15 mos ago. Still frustrating but as long as I stay on the road, if not between the strict white lines of no medication triggers, I’m generally ok. I still have to plan to be out of the house and try to avoid early morning appointments. I’m confident I can get it all smoothed out over time. But it is frustrating nonetheless.

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pb50 | @pb50 | Nov 1, 2023
In reply to @pb50 "No. I took vancomycin, cleared the c-diff, had the colonoscopy, went on budesonide. And had a..." + (show)
@pb50

No. I took vancomycin, cleared the c-diff, had the colonoscopy, went on budesonide. And had a miraculous result. What I have now is minor compared to 15 mos ago. Still frustrating but as long as I stay on the road, if not between the strict white lines of no medication triggers, I’m generally ok. I still have to plan to be out of the house and try to avoid early morning appointments. I’m confident I can get it all smoothed out over time. But it is frustrating nonetheless.

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And my RA on Remicade is well controlled. I think the inflammation from my recent surgery also affected my RA and it’s flared A bit recently.

Getting old is not for the faint of heart 🙄

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