Hi Jill
First let me say how sorry I am to hear about the passing of your parents and the zero support you got from your siblings. At a time when you needed them most they weren't there. Please don't feel you're alone and certainly don't feel your story is weird and your condition isn't normal. When I read your symptoms my jaw dropped, I couldn't believe what I was reading; it was like it was written for me. It seems me and you are at the same stage. Did you ever think that it might be the MALs that has given rise to your dysautonomia, POTS and MCAS? You will understand why I say that when you read the following.

I have always suffered from abdominal pain which would come and go. Then 10 years ago it came back with a vengeance and like you I thought it would be over in a few weeks. It became evident quite quickly that it wasn't the same as before as the pain intensity just kept on increasing. I was in so much pain I barely left the house for the first 3 years; I couldn't even stand up straight. The specialist checked for everything else and even took out my appendix and gallbladder which had no effect on the pain. After 10 years of pain and suffering, it was a young immunologist who suggested a angiogram which show up MALs and stenosis of the left gastric artery, It was a year ago that I started having trouble with food. I lost over 12kg or 25lb in less than 4 weeks. I really didn't want to lose any more weight so experimented over the next six months and found that if I eat a meal everyday the pain accumulates in correlation. One meal being a main meal of meat with vegetables. Below is food intake and symptom correlation:

1 meal each day for 3 days in a row causes an increase in pain on the left side and tiredness.
1 meal each day for 5 days in a row causes significant increase in left side pain spreading from front to back, hot flushes, extreme lethargy, appearance of rash on one hand.
1 meal each day for 7 days in a row causes intense crippling pain on left side front and back, hot flushes, total exhaustion, hand rash now on both hands, pain in elbows and top of right foot.
1 meal each day over 10 days in a row causes intense crippling pain on left side front and back, hot flushes, total exhaustion, confined to home and in most cases confined to bed, severe hand rash on both hands, pain in both elbow joints, pain in both knee joints, severe bone pain in femur bones, severe bone pain along wrist bones in both arms, bone pain down right shin bone. Pain in both feet which became extremely intense as soon as I put a foot on the floor. Significant pain in the right side lower ribs and pain across the pelvic girdle. An intense chest pain that radiated to the back in between the shoulder blades. Blinding headaches with some headaches being photosensitive. Along with the pain comes the nausea, constipation, mental confusion, excessive sweating, and problems sleeping. I performed this test 6 times over the last year and every time it has followed the pattern above. Now that's weird!

With your symptoms and the fact you suffer from dysautonomia, POTS and MCAS has shed light on my symptoms. I am ANA and Anti Ro positive which sometimes means there is an auto immune disorder. I was checked for the more common like Lupus, which was clear. Now I have something specific to go back with to have them check. Is it just coincidence that we both suffer auto immune disorders or is MALs the common thread? I can manage the awful abdominal pain and sleeping on my right side for the last 10 years; it's the severe chest pain on top of it all that drags me down, it gets so bad I feel my hearts going to malfunction. For the last few weeks I've been monitoring my heart rate overnight to see why I can't sleep properly. It fluctuates so much it looks like I'm doing a workout in my sleep. I will be happy to post a graph if there is someone that knows a little about sleep, heart rate and o2 saturation levels. At least I know which foods are triggers and which can be eaten without fear. It's not just about what foods cause the pain it's more about the quantities you consume.

Keep going Jill you have already helped me. If we all keep talking and sharing maybe we can get the doctors and specialist to listen and investigate things that are outside the box. If there is a link between MALs and Auto immune disorders, maybe it's the link they need to understand MALs better.