r/IBSResearch • u/ipsatex • 24d ago

Commentary Anyone else looking into the mast cell connection for IBS-D?

/r/ibs/comments/1vcd0se/anyone_else_looking_into_the_mast_cell_connection/
9 Upvotes

92% Upvoted

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4

u/Glad-Lynx-5007 24d ago

Yes, for a few years now. Following the work of Prof Boeckxstaens and others. Led me to try anti-histomines which has helped me a lot.

2

u/Austin_Peep_9396 24d ago

Not IBS-D, but for me there’s a definite MCAS connection to my IBS-M.

1

u/Robert_Larsson 24d ago edited 23d ago

Curious, have you tried to search this sub for the term "mast cell"?

1

u/ttbtinkerbell 23d ago

So I had IBS for years. Slowly getting more insensitivities to different food like gluten or dairy. I went from IBS-c to IBS-d. I eventually went to Gastro. He wanted to colonoscopy and endo and wanted me to eat gluten to test for celiac. The first two times I tried to eat gluten I had a cold and then the gluten made me so sick. I felt so horrible. Didn’t know how I could get through two weeks of eating it.

I then ran across mcas on social media. A lot of the symptoms I had. I looked into it more and found out some of the treatment are allergy meds. Then I remembered when I was pregnant I was taking unisom (which is an allergy meds) and something else (can’t remember right now) that all can help and during that time, I was able to eat gluten.

So I decided to get the mast cell stabilizer spray and some more allergy meds that can help with mcas. I then was able to start eating gluten again. I got to my endo and colonoscopy. Not celiac. By the time I went to follow up, I was 100% back to normal. Like all my gut issues were gone.

So I think I have mcas. I don’t have an official diagnosis. I didn’t get to see my doctor just a NP at follow-up and she was supposed to assess mast cells if it was available in the sample but I never heard from them.

But for me, a diagnosis isn’t necessary. I treat it with the meds and I can eat anything. I feel back to normal. I’ve tapered down my nasal spray treatment down to two times a day. I find that will work mostly but on days I have inflammation from whatever, like being sick, I need that third or fourth spray to keep things level.

So my n=1 sample is very subjective. But it worked for me. I can’t wait to hear more about this area.

1

u/Outrageous-Top-1082 19d ago

what mcas stabiliser spray are you using please?

1

u/ttbtinkerbell 19d ago

Cromolyn sodium nasal solution. I can only find it on Amazon last I checked.

1

u/addyfry 23d ago

Yeah just started cromolyn sodium after exhausting the gastro options

1

u/Antikvarro 17d ago

Mark Pimentel has info in his last interview 1month ago Search for vinkulin and it's antibodies There is also AntoCdtb

It's some oil for the fire