The title of my post is what the doctors keep calling me.
Until recently we found that I have IGG and IGM deficiency. (Igg 50 or 500, and IGM 20). My story started when I was 17 yrs of age, I got Minimal Change Disease out of nowhere, healthy young and in shape.
After recovering from that I had 13 years of diarrhea, which about 2-3 years ago turned into "dumping syndrom" style diarrhea, anything I would eat would cause me to be running to the bathroom. Well, Dec 2013 it all stopped.
December of 2013, still eating healthy, doing what I can to deal with the chronic diarrhea, it stopped. I had ONE week of healthy bowel movements, until...... Anything I ate would spring back out like I had a balloon tied somewhere inside, when it filled, it would recoil and for four months I vomited instead of having bowel movements. I would have a BM maybe once or twice a month, this is when they started poking and testing.
They did two upper gi endoscopy's, a cystoscopy, and a colonoscopy. Findings were they took my gallbladder, I was diagnosed with "Chronic Gastritis" and "microscopic colitis." Eventually I ended up at a motility specialist at UPMC pittsburg, who was also very confused. This was about march of 2014, he told me to stop "trying" to find things I can eat and stick to ensure and liquids.
The "Ensure" diet worked, no more vomiting, normal bowel movements. My body was rejecting solids, this didn't make a whole lot of since, so I found doing some google research that it was probably a "Pseudo Obstruction." One of the tests Klous did came back saying I had low gamma globulins. This was after four celiac bloodwork tests returning saying I had low IgA.
Finally back at the immunologist, she found reason to check my immune system (Yes I went to her at the start of all of this and said I feel like it is my immune system.) She ran IGG subclass and checked about everything. My IgA was about 70, which is bottom of the scale normal, my IGG was 500 where 800 was normal, and my IGM was 20 where 80 is lowest normal.
Has anyone else here had Immune Disease GI problems? Would this likely be the cause of my "paresis" of my "gastro" (Funny I put it like that but my stomach empties normal, so I did not want to say "gastroparesis" which refers to the stomach.) From researching (I have an appt on the 3'rd with the immunologist to go over these test results,) but I will be put on IGG replacement, and possibly diagnosed with what used to be called CVID.
I have been wondering, because I can not seem to find any stories where the diarrhea just stopped for no reason, but has anyone had a story like this? Has anybody had IV IGG and noted a recovery of the GI tract? They have noticed some problems in my neck (c2-c3 anterolilthesis, and l2-l3 problems) but don't think the problem is in the nerves.
Thanks, and I hope everyone is doing ok, it's been almost a year living on ensure and it's rough.
Matthew
Until recently we found that I have IGG and IGM deficiency. (Igg 50 or 500, and IGM 20). My story started when I was 17 yrs of age, I got Minimal Change Disease out of nowhere, healthy young and in shape.
After recovering from that I had 13 years of diarrhea, which about 2-3 years ago turned into "dumping syndrom" style diarrhea, anything I would eat would cause me to be running to the bathroom. Well, Dec 2013 it all stopped.
December of 2013, still eating healthy, doing what I can to deal with the chronic diarrhea, it stopped. I had ONE week of healthy bowel movements, until...... Anything I ate would spring back out like I had a balloon tied somewhere inside, when it filled, it would recoil and for four months I vomited instead of having bowel movements. I would have a BM maybe once or twice a month, this is when they started poking and testing.
They did two upper gi endoscopy's, a cystoscopy, and a colonoscopy. Findings were they took my gallbladder, I was diagnosed with "Chronic Gastritis" and "microscopic colitis." Eventually I ended up at a motility specialist at UPMC pittsburg, who was also very confused. This was about march of 2014, he told me to stop "trying" to find things I can eat and stick to ensure and liquids.
The "Ensure" diet worked, no more vomiting, normal bowel movements. My body was rejecting solids, this didn't make a whole lot of since, so I found doing some google research that it was probably a "Pseudo Obstruction." One of the tests Klous did came back saying I had low gamma globulins. This was after four celiac bloodwork tests returning saying I had low IgA.
Finally back at the immunologist, she found reason to check my immune system (Yes I went to her at the start of all of this and said I feel like it is my immune system.) She ran IGG subclass and checked about everything. My IgA was about 70, which is bottom of the scale normal, my IGG was 500 where 800 was normal, and my IGM was 20 where 80 is lowest normal.
Has anyone else here had Immune Disease GI problems? Would this likely be the cause of my "paresis" of my "gastro" (Funny I put it like that but my stomach empties normal, so I did not want to say "gastroparesis" which refers to the stomach.) From researching (I have an appt on the 3'rd with the immunologist to go over these test results,) but I will be put on IGG replacement, and possibly diagnosed with what used to be called CVID.
I have been wondering, because I can not seem to find any stories where the diarrhea just stopped for no reason, but has anyone had a story like this? Has anybody had IV IGG and noted a recovery of the GI tract? They have noticed some problems in my neck (c2-c3 anterolilthesis, and l2-l3 problems) but don't think the problem is in the nerves.
Thanks, and I hope everyone is doing ok, it's been almost a year living on ensure and it's rough.
Matthew