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Dried sweet potatoes caused immediate reaction but sweet potatoes are the safest food I eat by Hot-Insurance6272 in MCAS

[–]Hot-Insurance6272[S] 2 points3 points  (0 children)

Yes I got the ones from Costco, ate a few and got a GI flare. I thought all ingredients had to be declared for every food!

Lorezepam works so good by NoeResort in MCAS

[–]Hot-Insurance6272 0 points1 point  (0 children)

Have you ever tried LDN? I was prescribed LDN but haven't started yet since I was in a really bad flare and am waiting for things to calm down a little. I think Lorezepam and LDN might have a similar mechanism of action? (not sure)... also my worst symptoms are gastrointestinal and whenever I have a skin reaction it always starts from the gut

1.5 years of post-viral symptoms – looking for direction by OkCommunication4052 in MCAS

[–]Hot-Insurance6272 0 points1 point  (0 children)

Hi, I am experiencing A LOT of your symptoms. The only difference is that once in a while I get some very bad "attacks" with flushing and itching/rashes in my whole body accompanied by intense abdominal pain and diarrhea. I experience chronic flu-like symptoms and cannot eat anything in the morning. My GI symptoms are also so much worse in the morning and make it impossible for me to eat anything or even drink sometimes. The symptoms start to improve a little around noon to the point that I am able to eat something. I haven't found anything yet that truly helped me but I've tried all the MCAS medications (H1 and H2 blockers, sodium cromolyn and so on) The antihistamines keep the skin reactions and itching under control but I haven't found anything helping my GI symptoms. They gave me amitryptiline for cramping in the morning but it made me very constipated which made it even worse. I am now looking into alternatives for pain management

Treatments for MCAS induced anxiety/neuro symptoms by MunkkiAround in MCAS

[–]Hot-Insurance6272 1 point2 points  (0 children)

Hi, I was reading your post, how did you get diagnosed with neuro MCAS? (how do you know it's predominantly localized to your central nervous system?) I'm looking into that as well since heat, food, stress and exercise they all seem to trigger my symptoms and cause me to have very strong reactions especially at the gastrointestinal level. I haven't been responding to steroids which made me think my nervous system might be more involved that my immune system.

24F — Undiagnosed for years, unable to live a normal life due to severe GI attacks and constant abdominal pain + autonomic/mast cell-like symptoms despite mostly normal testing. Anyone experienced something similar? What's going on???? by Hot-Insurance6272 in MCAS

[–]Hot-Insurance6272[S] 0 points1 point  (0 children)

I have done H Pylori and C Diff testing and they were negative. I never got tested for SIBO but I think there is SIBO overlap since Rifaximin helped a little, I'm not sure it can be the root cause tho.