HI all. My name is Lisa Krueger and I am exploring MCAS (mast cell activation syndrome) as a part of the etiology of other illnesses I have. I was mold poisoned and became severely reactive – highly MCS – after that event 2 years ago. Now, I find myself becoming histamine intolerant (ie, sauerkraut, wine, etc) and am super sensitive to many drugs/supplements/medicines. The docs here don’t know what to make of it, although I recently got an order to test for tryptase. I have just started h1/h2 meds to see if they will  help.

My main concern is some horrid abdominal pain I've had the last 10 months. LDN helps keep it in check as do some other supplements, but I know something is missing. I just had a barium swallow for a small bowel follow through to start looking at this and and had a bad reaction 10 hours later – severe itching/burning of my skin, bone pain, gut pain, and shortness of breath. It was scary but I linked it to the citric acid in it; I can't have it in supplements or anything and it is mold-derived. I was sick for 3 days - in bed. And now still feel like my histamine levels are quite high.

I'm looking doing three more tests (already did the pelvic ultrasound and cytoscopy and they were clear; as was the barium swallow). I KNOW I can't handle CT scan contrast (not risking it), so I'm looking at an abdominal MRI (they used gadolinium and I had a brain MRI back in Nov while reactive and did ok), a pill cam (just the prep agent is an issue there) and a HIDA scan (a nuclear medicine contrast here).

Has anyone else here done these tests and how did it go for you? I printed out the emergency protocols and am wondering if I should premedicate with H1/H2 meds before I go in?

Thanks so much for all your wonderful wisdom!

Take care, Lisa

They’re thinking I may have a hernia that needs to be operated on and obviously I am terrified at this point given how poorly my body is responding to pretty much everything right now.

HI Lisa, welcome!

One of the problems we all face is that of trying to figure out what triggered us, since there are so many things that can.   I am one who has horrendous reactions to contrasts and it seems like for me it doesn´t matter anymore what kind of contrast, I will react to it.  So, in having gone through these unexpected situations, leaving my doctors bald from having pulled out all of their hair because they would have sworn it was impossible for me to react, I think that where contrast is concerned there is never too much caution.   Yet I have to say that your having reacted 10 hours after the barrium swallow makes me think that you are right, you reacted to something else within the contrast and not to the barrium itself.  This is because with this kind of contrast it is known to be a MC degranulator and so the reaction is usually pretty immediate.  I reacted almost immediately to it!  Regardless, this doesn´t mean that you couldn´t react to an inert ingredient and so you really should pre-medicate and have an anesthesiologist called in to attend the scan just in case you do react.   If you are a masto patient then knowing this the doctors will know you are part of an unpredictable patient group and too many precautions are never enough!

I hope this helps!

Lisa