Most of us with MCAD have gastrointestinal issues.
I’ve had them since birth so I’m always interested in learning more about the function of mast cells in our stomach and intestines and how my mast cell disease explains the myriad of gastro problems I suffer from.
Thanks to my medicines I have mine pretty well under control, as long as I’m not triggered, but why did I suffer so badly all these years from abdominal pain, swelling, GERD, IBS and more?
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. Recent advances in our knowledge of the immune system and the recognition that the gastrointestinal immune function might be partially mediated through gastrointestinal mucosal mast cells has opened mast cell research to the field of gastroenterology. Local gastrointestinal proliferation of mast cells in response to recognized or obscure stimuli can alter gastrointestinal function and induce systemic symptoms. Symptoms can arise from the increased number of mast cells, overproduction of specific mast cell mediators, and hyperactivity of the enteric nervous system that induces mast cell activation.
Ahh, so it’s no wonder my stomach and intestinal tract was affected, and still is if I skip my meds or trigger myself.
The main problem I have is inflammation and swelling. Everything gets inflamed and swells from one end to the other when I’m triggered, especially by food. Non food triggers can do it, too, but with food it can become a living nightmare. It gets so bad it can cause degranulation for weeks. My “food processing” shuts down and I get severely constipated and bloated, causing my triggers to stay in my intestines, slowly leeching out and triggering me until they pass.
The swelling and inflammation doesn’t stop there. I get inflamed everywhere else, too. My gums, throat and even my cuticles get red and inflamed. Acne will pop up overnight. My brain even gets inflamed and I can feel it pulsing in my skull. I get a dull headache that sometimes it turns into a migraine and my neck gets stiff like I have menengitis.
It is always so much worse for me with food triggers so I was wondering if there was some reason why. I did find this interesting article about the “gut-brain connection”, but it didn’t address mast cells. It did say this, though:
Have you ever had a “gut-wrenching” experience? Do certain situations make you “feel nauseous”? Have you ever felt “butterflies” in your stomach? We use these expressions for a reason. The gastrointestinal tract is sensitive to emotion. Anger, anxiety, sadness, elation — all of these feelings (and others) can trigger symptoms in the gut.
The brain has a direct effect on the stomach. For example, the very thought of eating can release the stomach’s juices before food gets there. This connection goes both ways. A troubled intestine can send signals to the brain, just as a troubled brain can send signals to the gut. Therefore, a person’s stomach or intestinal distress can be the cause or the product of anxiety, stress, or depression. That’s because the brain and the gastrointestinal (GI) system are intimately connected.
This is especially true in cases where a person experiences gastrointestinal upset with no obvious physical cause. For such functional GI disorders, it is difficult to try to heal a distressed gut without considering the role of stress and emotion.
It’s that last part that piqued my interest. I wonder if these “functional GI disorders” with no obvious physical cause could have a yet undiagnosed cause — mast cell disease.
My gut was on fire when I first walked into my immunologist’s office and I was passing mucus like crazy for the first time in my life. I had just begun an elimination diet and my body was rebelling big time because I had stopped feeding the beast, so to speak. My GI mast cells were starving and angry and hyper-reactive.
Not only was my GI tract super reactive by that point, but my emotional control was almost nil. I was completely drowning in anxiety, to the level of constant panic and paranoia, and it was drip.. drip… dripping in the pit of my stomach. I was breaking out in hives easily and itching from head to toe, among a million other things that pointed to mast cell disease but I didn’t know it yet.
My entire life I’d also been having what I called “emotional seizures” during my degranulation events where I would have panic attacks or cry uncontrollably or get super giddy or feel really angry, etc. and just couldn’t explain why.
It still happens when I’m triggered and know I believe this is probably all related to my gut mast cells being triggered (causing the anxiety and panic) and possibly inflammation in the emotional cortex of my brain (causing the other emotional disruptions) caused my mast cell degranulation.
It makes sense to me.