Welcome back to my MCAD Book Club: Never Bet Against Occam series. I am reviewing the highly informative and easy to read book by Dr. Lawrence Afrin, a hematologist who specializes in mast cell activation disease or MCAD.
If you are just joining me, I am up to chapter 15 now, which is aptly titled, “Well, We’re In a World of S**t Now: Gastrointestinal Findings in MCAS”.
And this is why I love Dr. Afrin. His sense of humor is refreshing and he makes me laugh but rarely do my gastrointestinal issues give me cause to chuckle. It’s honestly one of the worst aspects of living with mast cell disease!
Dr. Afrin totally understands this. In this chapter he not only gives more real life patient examples but also has this to say about the multitude of ways MCAD affects our GI tract:
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. Malabsorption, too, is common (one study suggests it’s present in up to a third of cases) and may be either a general protein/calorie malnutrition and/or malabsorption of selected micronutrients such as assorted vitamins and minerals.
I have/had every single one of those symptoms my entire life, to some degree. My GI scope found evidence of GERD and I also found out I have diverticuli which hurt really, really bad when I’m inflamed.
He also addresses the problems we can have with weight loss/gain. I’ve also spoken about my own rapid weight gain/swelling issues, which mirror what he says here:
Weight can rise or fall, sometimes a result of edema and sometimes a result of changes in fat tissue. Weight gain seems much more common than weight loss, but sometimes the weight maddeningly fluctuates repeatedly up and down — all without change in diet or activity.
I can gain (and lose) almost ten pounds really quickly from the swelling (!).
I’ve also always been underweight and struggled with keeping healthy weight on and it wasn’t until I started using oral cromolyn sodium that I noticed a major change there. I am now at my ideal BMI for the first time in my life and my digestion is also normal (as long as I stay un-triggered!), also for the first time in my life.
After getting dx’d and treated, I also noticed my hair, nails and skin became much, much healthier, which tells me I am (finally!) getting the micronutrients I needed so badly but wasn’t able to get before. I thought the mucus coating my GI tract was to blame, but it’s probably far more complicated than that and may also involve having a “leaky gut” that needs fixed, too.
Dr. Afrin doesn’t discuss the topic of intestinal permeability at all in this chapter and it’s relatively short, but he does talk some more about patients who struggle with weight gain and describes how some even go through risky gastric bypass surgery without ever considering the metabolic issues that might be going on and contributing to the problem.
I don’t have to worry about that, thankfully. I just have to try to get as much as I can out of my very limited diet and try to keep healthy weight on. Food is another thing he doesn’t mention much of in this chapter here, which is surprising, but I’m hoping he addresses it further down the line since we all seem to have food triggers and food issues.
The food struggle is very real! So hopefully he talks about that at some point.
Don’t miss my next installment where I review chapter sixteen which is all about the urinary tract and how mast cell disease causes things like interstitial cystitis and pseudo urinary tract “infections”.
Unfortunately, I think most of us can relate to these symptoms, too.