Hi Kirk,
Your symptom list caught my eye, and there is much there that could suggest a mast cell disorder. As others have said, though, additional possibilities need to be ruled out.
I'm relieved that your doctor has changed your test, but I believe it might be wise to pre-medicate before an MRI with gadolinium. Also, make sure you are really hydrated before the test and drink a lot of fluids after it to help clear it quickly from your system. The reason I say to consider pre-medicating is that it may be rare that gadolinium causes mast cell degranulation, but you don't want to be the rare one that has a reaction. If you pre-medicate as Dr. Castells recommends, any reaction would be suppressed or much milder and gentler.
About 20% of masto patients also have true allergies (about the same as the general population). I happen to have both. Positive allergy tests will not rule a mast cell disorder in or out, but they'll give you more information. Still, they can show you some things to avoid that may be triggering you. Allergens, such as mold, dust, etc. can be triggers of mast cell disorder symptoms, as they can cause the mast cells to degranulate, but it's not always a true "allergy." Same with certain chemicals and perfumes/fragrances.
If you have allergy testing done, it might be wise to have the blood tests rather than the skin testing, since it's recommended to
never go off your antihistamines for skin testing. Antihistamines can mask reactions in skin testing. I'm sure you know about exercise induced anaphylaxis. This can be related to mast cell disorders or not. Taking your antihistamines an hour before exercise can help.
One very important thing you can try that might relieve some symptoms is a low histamine diet. You can find it at this address:
www.urticaria.thunderworksinc.com/pages/lowhistamine.htm This diet removes foods which either contain high levels of histamine or which cause direct mast cell degranulation. These foods are very common triggers of symptoms in mast cell disorder patients (IA, MCAD, and SM) You must avoid
everything on the list for a period of time before you will notice fewer symptoms, if high histamine is one of the culprits. I would say you should notice improvement within days to a couple of weeks at most. If I were you, I'd stay on that diet until you have a confirmed diagnosis of yea or nay on both allergies and mast cell disease.
The most common foods that people eliminate and notice a big health difference might be leftover foods and fish. If you want to save leftover food to use later, it must be frozen as soon as possible after cooking. As both leftovers and fish age, certain bacteria in them proliferate that produce high levels of histamine. Tuna is the worst fish for this, and it can produce toxic levels of histamine within half an hour of its death.
Diarrhea is a common symptom, but not everyone with a mast cell disorder has it. It can also be masked by diet or supplements, especially calcium, and it can vary in severity a lot week to week or day to day.
You mentioned high bone density. Is that still in the normal range?
One more FYI, I had tightness in my joints without visible heat or swelling. I believe it was part of the inflammatory reaction of masto in my case, as it rarely happens now since I'm on the correct antibiotics.
Intermittent cognitive impairments can occur from mast cell activity. We call it "brain fog," and it usually comes and goes, depending on the level of wellness we are having at the time and which meds we are taking. Well, good luck in figuring this out! It's a process....