Scattered Among The Leaves

A blog about living with mast cell activation disease.

Mast Cell Disease & Gastrointestinal Issues: Boy Do I Have Them


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

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Does Mast Cell Disease Run In Families? It Does In Mine.



It’s one thing to know I have mast cell disease but it is very, very distressing to know that I most likely passed it on to at least one of my children.

In the last few months I’ve had to watch my 23 year old son go through the process of being tested and then diagnosed with MCAS.  My other two young adult children also show signs of mast cell disease but they haven’t been formally diagnosed. Neither of them are nearly as sick as their brother or myself are, thankfully, so hopefully they’ll never need to see a doctor for this at all.

I haven’t spoken a lot about my son who also has MCAS because his story isn’t mine to tell but I did ask him if he minded me sharing more about both of our experiences here and he said no, he doesn’t mind. In fact, he thinks it’s a good idea to get this out there because this is such a rare disease and still poorly understood among most of the medical community.

So is mast cell disease inheritable? Does it run in families?

I definitely know it runs in my own family because my son and I both definitely have it and are successfully being treated for it, and I suspect my other two kids have some level of it too, as I mentioned before. I was also given second hand information that my estranged brother is possibly dying from an aggressive form of it as well. My mom related to me that she and her mom had a lot of symptoms that could have been caused by faulty mast cells, too, now that I look back on our conversations over the years.

When I asked about this, though, my hematologist down at the University of Utah told me that it was rarely seen in families. I was honestly really surprised that there aren’t more families showing up to mast cell specialists with varying degrees of MCAD but maybe that’s because they simply don’t know they have a name for it yet, like we didn’t know just a year ago! Which means there needs to be more awareness brought to this disease in all its various forms so more families can be evaluated.

Dr. Afrin talks about this at the end of his video presentation in my last post. The familial occurrence of mast cell disease was looked at more closely in a recent study done in Germany on a large number of people from three families. They evaluated them pretty thoroughly and concluded with:

In conclusion, our data provide evidence for common familial occurrence of MCAD. This makes the future application of systematic molecular genetic studies, such as genome-wide association studies, to MCAD very promising. Together with findings of previous studies, which suggested that almost all KIT mutations were somatic rather than germline (reviewed in [3]), our present data support the idea that in familial cases (i.e., the majority of MCAD) mutated disease-related operator and/or regulator genes could be responsible for the development of somatic mutations in KIT and other proteins involved in the regulation of mast cell activity [3]. Accordingly, the immunohistochemically different subtypes of MCAD (MCAS and SM) should be more accurately regarded as varying presentations of a common generic root process of mast cell dysfunction, than as distinct diseases [1], [3].

I underlined the part about the KIT mutation because that’s the curious thing with us; I have had two tests run for that (blood and bone marrow) and both came back negative. No c-KIT mutation, at least not at the codon they look at for mastocytosis. My son hasn’t had a bone marrow biopsy done and no c-KIT mutation test was done on his blood when they pulled it for tryptase so we don’t know if he has it.

What I do know is that, like me, he had many symptoms and was progressively getting worse and is responding so well to the mast cell medications that it is genuinely a miracle for us to see him change so quickly before our eyes. I will be writing more on that in another post now that I have his blessing to tell his story because it is very, very encouraging.

Still, it really kills me that I probably passed this on to my child, but I had no way of knowing and at least we are in this together and have each other to truly understand what the other is going through and to advocate for each other when necessary. We are both just so thankful to have a name for this and to know that we’re not crazy.

Well, that’s debatable, I guess. It is a side effect of MCAD, after all!



xo Michelle Dellene




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Everything You Need To Know About MCAS


I have watched this entire presentation by Dr. Afrin several times and I keep learning more each time. It is all about mast cell activation syndrome (or disease) and is the most thorough one I’ve found yet. He describes all of my symptoms I’ve had from birth, including the granuloma annulare I mentioned in my last post.

I highly encourage anyone who is interested in learning more about mast cell activation syndrome to watch this in its entirety:


I can’t begin to express how grateful I am to have a diagnosis finally and doctors like him are my true heroes.

Dr. Afrin has a book out that I’m ordering, called “Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity”. I really look forward to reading it but I’m not sure there could be any more information in it than what he packed into this video presentation. It really is good, so make sure you check it out when you have a couple of hours.


xo Michelle Dellene



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