Many of us with MCAS also have been diagnosed with irritable bowel syndrome (IBS), inflammatory bowel disease (IBD) and with some form of dysautonomia (typically POTS). These are known co-existing conditions of mast cell disease.
I’ve personally struggled with GI issues since birth and thankfully found a good deal of my intestinal problems cleared up once I got on the oral cromolyn sodium. Gosh, I love that stuff!
I do notice, though, that even with the cromolyn when my mast cells get triggered (regardless of how), my dysautonomia often flares up and so does my IBS to some degree (it’s far worse with food), so I knew there was a connection but I wasn’t sure what it was.
It didn’t take long to find the answers.
From the experts:
The gastrointestinal tract is a rich source of mast cells with an enormous surface area that permits a high degree of interaction between the mast cell and the intestinal contents. The active metabolic products of the mast cell influence gastrointestinal secretion, absorption, and motility through paracrine effects of local mast cell activation and also cause systemic effects through the release of cellular products into the bloodstream.
Patients with POTS present with nausea (39%), bloating (24%) and diarrhea (18%), constipation, and early satiety. Their clinical picture can be similar to that of patients with functional motility disorders like irritable bowel syndrome and functional dyspepsia, although they also can have true slow motility, or even gastroparesis.
Recent research published in Nature Genetics suggests that a single gene mutation may be responsible for a group of syndromes often seen together; Irritable Bowel Syndrome (IBS), Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS).
Elevated basal serum tryptase identifies a multisystem disorder associated with increased TPSAB1 copy number
Researchers also confirm the connection between MCAS/POTS and GI dysfunction in the medical literature:
Patients with this syndrome typically present episodes or “attacks” of flushing accompanied by palpitations, lightheadedness, dizziness, shortness of breath, occasional nausea and diarrhea, headache, and syncope.
They do warn, however, that treatment needs to be directed at tackling the MCAS first and that certain drugs, like beta blockers, may need to be avoided.
The experts over at Dysautonomia International make the connection between POTS/MCAS/Inflammatory Bowel:
Patients with MCAD usually have episodes of flushing and sometimes rashes followed by autonomic symptoms. It is hypothesized that histamine release from degranulated mast cells triggers can cause excessive vasodilation and trigger a hyperadrenergic response.
Both Crohn’s and Colitis are forms of Inflammatory Bowel Disease (IBD), and both conditions can be associated with autonomic neuropathy and symptoms of autonomic dysfunction. Some studies have documented that about 50% of Crohn’s and Colitis patient have autonomic nervous system complications.
Dr. Afrin, an expert on MCAS, discusses GI issues in detail in his book I’m reviewing and has this to say:
The GI issues in MCAS include pain, discomfort, and inflammation of any or all components from the mouth to the anus and the solid organs, too (e.g., the liver and pancreas). “Refractory GERD” (suffered by tens of millions in the U.S. alone) and “irritable/inflammatory bowel syndrome” (similarly) are very common. Episodic queasiness, nausea, and vomiting (sometimes “cyclical,” as in “cyclical vomiting syndrome”) are common. Diarrhea and/or constipation (usually maddeningly alternating) are common.
He also talks about seeing a lot of MCAS patients who have been diagnosed with diverticulosis and diverticulitis (my GI scope found diverticulosis and I’ve been dx’d with IBS).
So it’s quite obvious that these conditions are very much related and is evidenced by the fact that so many of us with MCAS also have GI issues, POTS/ dysautonomia (and so much more). Naturally, the question for those of us suffering with all of this is…
What can we do about it all?
Hopefully find a doctor who knows his stuff and a treatment plan that works for us. Learning as much as we can about our diseases and having a better understanding of how they are interrelated helps, too.