Hi Terri,
Welcome to the group!
If you have any kind of mast cell disorder... whether that's systemic mastocytosis or MCAD... Ehlers-Danlos will make it worse. (I was just writing about this earlier today on the other website
). There are two reasons for this. The first is because your blood vessels are weaker than normal... that means you're doing more clotting. Thrombin... one part of the coagulation cascade... is a known mast cell degranulator. The other problem with Ehlers-Danlos is that your body is constantly working extra hard to keep your blood pressure at a high enough level. That can wear down your adrenal glands... which is a bad thing when you have a mast cell disorder, because adrenaline is natural epinephrine. It keeps the activity of your mast cells in check.
Physical traumas like surgery and childbirth can also bring a mast cell disorder out of hiding! Stress is a big trigger for degranulation.
Unfortunately, you're a long way from any specialists. There are two things you could do right now, however. The first is to get some basic tests, starting with a baseline tryptase. It's just a blood test... you can do it any time. The second thing is to treat any symptoms you might be having... if antihistamines help, that's a positive sign that you're dealing with a mast cell disorder. If the signs keep pointing in that direction, you want to see if you can get to a real mast cell specialist. You could to the Mayo Clinic or Brigham & Women's in Boston.
If you do the tryptase test and it's less than 20, don't get discouraged. Some people have too many mast cells... tryptase is a great indicator for that. Some people have mast cells that trigger too easily... that's called MCAD, and it's much more difficult to diagnose (there are also lots of different types, so you end up needing a lot of different tests).
One thing at a time though! First... ask for that tryptase test
Even better... if you ever go into anaphylaxis, as to have your blood drawn at least one hour after it starts, but no later than three hours after... test that for tryptase. If it's really anaphylaxis, the number should rise from your normal baseline.
Best wishes to you! Keep us updated and let us know if you have any questions.
Heather