Urgent Chronic Diarrhea with Left Shoulder Blade Pain Bile Acid Absortion MCAS ?

[Pumpkin2009]

I have had intestinal problems for some time, but after having Covid November 2020, it is chronic and much worse. I get diarrhea almost daily, uncontrollable, someimes with no warning at all, many times right after eating. The one main symptom besides, bloating,back pain, neck pain, gurling, etc. that puzzles me is pain from the left shoulder blade. I also have systemic lupus which complicates the issue also. I definitely fit the Bile Acid symptoms as well as Mast Cell Activation Syndrome and my fatigue is getting much worse , It feels like someone has pulled the plug out and I have no energy or stamina and have to rest and/or sleep for a while in the middle of the day. So far, I feel all food is making me ill. I do know it is not gluten related as I have been tasted seveal times for that.

My doctor sent me to an immunolgist to consider Mast Cell Activation. I am on protocal for that. At first, I showed some response and was encouraged, but it didn't last. I have reached out to the immunologist to see if it needs tweaked or not the right path and am waiting for a response.

Trying to be a normal person is getting more and more difficult. Going anywhere is difficult as I have no control . I keep telling myself, there are so many others dealing with worse health issues, but that isn't making mine go away.

I would be appreciative of any insight at all.

Healing hugs.

[b1b1b1]

I hope you are also seeing a gastroenterologist.

[Pumpkin2009 in reply to b1b1b1]

Thanks for the comment. I had seen a gastroenterologist in the past, but not very helpful. At that time i was having different intestinal problems that actually led to passing out and breaking a vertebrae. There is more to this story, but he was very rude and mentioned to my husband being very busy due to needing money for his college age kids. So far those issues seem to have been caused by a filler in generic plaquenil which I discovered on my own. Now I take the very expensive non generic and those issues stopped for now. If it turns out I am on the wrong track with the MCAS protocal, I will try to find another gastrointerologist who will not just pratonize, say IBS and so what. Oh, he didn't like it that I am underweight and ignored that lupus could in any way affect the digestive system.. Overall, I am not a fan of overegotistical specialists. Sorry for sounded so negative on that. Thanks again.

Healing hugs.

[b1b1b1 in reply to Pumpkin2009]

Am so sorry you were treated like that. It is totally inappropriate. If you want to see a gastro in the future definately find someone else. He was very rude and patronizing.

[Ellie24J]

Hi Pumpkin - I was really interested in your post as I too have been told I probably have MCAS. It was a neuro-gastroenterologist that advised this (I have had IBS for years but late last year my symptoms went absolutely mad after me having basically coped with them for over 20 years by careful dietary monitoring). Like you I have horrendous diarrhoea and bloating (although not the other symptoms) - I have awful trapped gas that will just not move and causes awful burning pain. The neuro-gastroenterolgist thought that I have MCAS that might have been caused by an adverse immune reaction either to a Covid infection (although I'm not aware of having had it) or to the vaccine. He prescribed Ketotifen dependent on the test results. What test or tests did you have for MCAS? I had various blood and urine tests but I'm not sure which was testing for it, as he was testing for other conditions too.