Yes, I think there is something with small vessel vasculitis. I had to self refer to UCLA vasculitis clinic because no one can do ANYTHING but twiddle their thumbs and tell me how complicated this all is. The Stanford docs are useless. I have a good rheum, but really, how good is she? I don't have the ANCA antibodies but my complements are so low it is sickening. I have been gluten free for a few years (more or less) and every time I eat gluten I get really really sick. So I agree that is one thing, but I also cannot eat fat or protein unless it is plant based. For years I tried those suggested autoimmune diets with good fats and protein....I just got sicker and sicker. And man, did I stick to those stupid diets. Now I can eat mostly well cooked veggies and fruits, but sometimes I cannot eat anything at all.

thank you for acknowledging the "it is in your head" thing. I am so angry and frustrated. My therapist is great, but honestly, she does not even understand what I say. My pcp is pretty good with referrals, useless otherwise, but Mayo told me on the phone last week they would not take me because I have been seen at a Stanford. But Stanford does not seem to have the knowledge or communication to deal with the complexity.

I also have a timeline list of my symptoms, a list of symptoms by system in the body, a picture that was made with diagrams pointing to the areas of my body, a list of diagnoses (most of them have been wrong....90% of what was told to me was wrong...like Reynaud's for years when I had neuropathy). A list of treatments, many of which are difficult to remember, (it has been like 50 different meds) this is my area of weakness with my logging of stuff....mostly because stuff does not work or causes side effects in me (I think it has to do with my sensitive nervous system). I bring these to every appointment and literally all they do is just read the notes the last doc cut and pasted. I have had, when pressed, doctors at Stanford openly admit they never looked at my scans or my chart. Rage does not describe how I feel and every month is different than the previous. The last three have been electric shocks in my abdomen almost constantly. And the docs say, "well, we have done so many tests." So I finally have a consult with the surgeon at Stanford that told me in December that MALS could not be the case (despite from what I can gather I have a very very high degree of stenosis). She said they don't classify the percent, but I don't believe that to be true since just about everyone that sees a doctor with knowledge of this is able to quantify the stenosis. Plus, I have been begging for this GB to be out for a long time, hyperkinetic GB, and was dismissed for a long time until I pushed for a second HIDA scan. First was EF of 85% with reproduction of symptoms and second was 98.3%. Now my gi, who is supposedly "one of the best at what she does in the country" is referring me to surgeon that already dismissed me.

I apologize for the rant. I only have two emotions these days.....rage and despair. Today is rage, which I would greatly prefer over the deep despair.