I would appreciate any suggestions on how to navigate what feels like a mishandled work up.
I have had biopsy confirmed Lymphocytic Colitis for at least 15 years. On and off budesonide during this time many times without significant change in severe diarrhea. In the last year, onset of significant abdominal pain, cramping, nighttime symptoms, severe right lower quadrant pain. Traditional CT negative. Three months ago worsening right upper quadrant swelling and discomfort and bloating. Severe fatigue. Blood work normal. Calprotectin jumped from 21 (during active flare) to 582. EGD and colonoscopy completed early May showed “at least lymphocytic colitis” on the colon biopsies. Duodenal tissue showed multiple enzyme deficiencies, but tissues taken for pathology were “lost in transit” and pathologist noted “no small bowel present for evaluation” . Trio breath test ordered and positive for hydrogen dominant SIBO. Capsule endoscopy ordered for July. Adjacent to this I have an ANA titer of 1:640 and three mildly positive auto antibodies. I am concerned that a repeat EGD with biopsies needs to be done plus/minus the capsule endoscopy. I do not think LC and SIBO together account for my symptoms and suspect a worsening or misdiagnosed underlying disease. Does anyone have any advice on this or any other thoughts about what should be done to make sure I get the correct diagnosis here. I am truly miserable with symptoms.