I agree with another poster - she needs to have a PCP that can consolidate her information and testing to help you guide where to go next. I think you keeping this list is fantastic to help you advocate for yourselves.There are a few things here:The white plaques found on the colonoscopy Spring 2021 is of very high interest especially given that the cause was not determined. Was it ever biopsied? It may be worth another repeat C-scope because it sounds like the most recent direct visualization was an EGD. Low grade colitis from inflammatory bowel disease doesnt always show up on a CT scan.I also think her autoimmune workup is incomplete from the blood work listed. In addition to this, viral illnesses (such as the one she had in 2019 that may or may not have been COVID) often can trigger the beginning of an autoimmune condition. The blood work ANA and RF is by no means comprehensive. Why was an RF checked? Was she having joint pain as well? With a family history, autoimmune conditions are very high on my listnose symptoms, lung symptoms, microscopic hematuria, peripheral nervous system issues beings up differentials including: GPA (granulomatosis with polyangitis previously known as Wegeners Granulomatosis) and Anti-GBM (Goodpasture) Disease which are autoimmune vasculitisI would recommend checking for vasculitis: ESR, CRP, C3/4, ANCA, Anti-GBM, cryoglobulinsOther autoimmune conditions can manifest with GI issues too - there is a lot of overlap. Whether she has joint pain or not, I would check CCP, HLA B27, Sjogren panelSystemic scleroderma is a possibility too which would include Anti-Scl70 labsIf she has joint pain, a synovial ultrasound of the hands / feet may find active joint or tendon inflammation which would support an inflammatory condition as well.I hope this information can help bring your wife some answers and hopefully treatment
I would test Seum Copper levels and Zinc. Copper deficiency can cause peripheral neuropathy, histamine intolerance (copper is a cofactor of DAO), dysautonomia (copper is a cofactor of DBH, required to convert dopamine to norepinephrine), EKG abnormalities.Copper deficiency can be caused by zinc toxicity, and zinc has become a very popular supplement "to prevent" COVID. Too much zinc supplementation without Copper can lead to copper deficiency.We havent looked into that. She doesnt take any zinc supplements so were not sure what would cause her to have copper deficiency or zinc toxicity. Well write it down to mention to her PCP at her next appointment.She has been checked for carcinoid syndrome. Her GI doctor suggested it and she had both the CgA blood test and 24-hour urine 5-HIAA test that luckily both came back in normal range.