I know this isn’t a fun topic but I have to bring it up because my GI issues are a huge part of having this disease and they can be a sign that you have mast cell dysfunction going on.
In the process of being diagnosed with mast cell disease I had my GI tract scoped and they found that I have diverticular disease as well as evidence of GERD. I already knew I had inflammatory bowel syndrome without ever having a scope (I was too chicken) but a lot of the stabbing pain and other symptoms I had over the years I attributed to endometriosis and hormone imbalance since it happened mostly around that time of the month as far back as I could remember. It felt like it was my ovary being stabbed so it made sense.
Once it started happening all the time, though, I realized it was actually my intestinal tract that is the issue and at first I thought food allergies (it made sense to me!). I went on an elimination diet last year and soon I began passing HUGE amounts of mucous for the first time ever. That happened after I stopped eating dairy, soy and corn for a few weeks — my main food triggers for mast cell degranulation. My gut was on fire during the entire food elimination challenge time and that’s when I made the appointment to see my immunologist who diagnosed mast cell disease rather than the food allergies I was so sure I had (another red flag for mast cell disease! these aren’t true allergies).
So it became obvious once I learned I have MCAS that my lifelong problems with stabbing abdominal pain, stomach cramps, diarrhea, constipation, nausea and the constant dripping of anxiety in the pit of my stomach are all related to my mast cell disease. MCAS also explained the fact that I was always underweight and felt malnourished all the time (because I was!). I was also anemic off and on from birth, and blood tests have shown me to be both vitamin B deficient and iron deficient. My white blood cell count is always high on blood tests, as well.
Even my esophagus is affected. I have what is called dysphagia, where the inflammation causes my throat to close off and it makes it hard to swallow. Sometimes it’s filled with mucous, too, and that makes it even more difficult to swallow or even talk. I still struggle with that daily, mostly in the mornings when I first wake up and it’s been hours between medicine doses.
When my intestines get inflamed, like they are right now because I missed a dose of my cromolyn sodium today (grrr!), I get painful angina and I also get a lot of really painful burps. It’s like the swelling creates gas that can’t get through so it comes up. I used to get a lot of acid reflux but that’s gone and so is the stabbing diverticular pain for the most part, but I can feel it right under the surface. If I twist wrong it hurts but it used to stab me like an invisible icepick no matter what I did, and the pain was excruciating.
My intestines really acted up when I had my period, but not anymore thankfully, and now I see how that is all related to mast cell degranulation, too. Sometimes my abdomen will still swell up like I am eight months pregnant and then go back down within a short time, regardless of the time of month. It also presses hard against my ribcage. It’s incredibly painful and is also related to these episodes of degranulation.
So is the chronic alternating diarrhea and constipation I get, which is not nearly as bad as it was even when I flare up now, thank goodness. It all paints a very clear picture of mast cell disease now that I know what it looks like.
I guess what I’m getting at here with all this TMI is that there is hope and I am definitely seeing positive changes here even though the disease is always just under the surface, waiting to attack every single system in my body, including my GI tract.
Also, symptoms like GERD or acid reflux, IBS, abdominal pain, anxiety, dysphagia, diarrhea, constipation, etc. should be definitely be considered red flags for mast cell disease, especially if they come along with other symptoms like hives, itching or allergic reactions to food and medicines.
Remember, this is not medical advice, just my own experience, shared free of charge. Good luck!
xo Michelle Dellene