Q 1
Are there any correlations between ethnicity and MCAS? What about gender?
A
Firstly, it is important to first state that English language scientific literature skews heavily towards whites in their study populations. Without having comparable studies in other languages/ geographical regions, we can't really say definitively which ethnicity has the greatest concentration of MCAS patients.
For mastocytosis, across studies, it has repeatedly been found that there is no gender bias. For MCAS, we don't have studies. Something to remember is that women are much more likely to seek support groups for health issues so even though most of the patients you know are women, that doesn't mean there aren't lots of male patients.
Q2
Many antihistamines are anticholinergic. I am wondering therefore if the cholinergic meds/supps that I take have any mast cell activation effect? E.g. Mestinon, huperzine A, citicoline, phosphatidylcholine.
A
Cholinergia has no real relationship with histamine properties. I would have to look these up but the fact that they're cholinergic is meaningless for determining their potential to activate mast cells. This is a clever question, though.
Q3
Are there indications that ports can cause significant long term damage to a body?
If someone with MCAS has a tendency for veins to immediately blow after starting an IV line, would that have a specific impact on the life span of a port placement?
A
No to both. Port infections or blood clots from them can damage the body but just having a port doesn't.
Q4
is mast cell activation syndrome is rare or common in children?
A
We don't know. There are no studies.
Q5
What might an elevated liver enzyme level have to do with MCAS (or EDS)?
A
Mast cell activation can irritate the liver. Also, mast cells can infiltrate the liver.
Q6
DS is allergic to either Polymyxin B or Neomycin (reaction found through Neosporin). Patch testing with no results. We are trying to determine which ingredient is the problem so he can get his immunizations. How can we proceed? Will we have to stop vaccines since most contain one or the other?
A
http://www.mastattack.org/2017/04/mastattack-107-laypersons-guide-mast-cell-diseases-part-17/
Polymyxin B is a medication that may cause degranulation or histamine release.
Both of those meds are massive mast cell triggers. Sometimes the amount matters. I would ask his doctor about it and premedicate. That may be enough to get him over the hump. But if he reacts to even tiny concentrations, you may have research different versions of a vaccine and preferentially use those that doesn't contain them.
Q7
20 DD has high platelets, gets random hives and has awful seasonal allergies. Mom has clinical diagnosis of MCAS. Is there any reason to suspect a mast cell disorder with high platelets? Is there any testing you'd recommend? I really don't want to pass this on to my kids.
A
The high platelets alone doesn't ring any warning bells but if Mom has mast cell disease, it's worth considering. Mast cells have some complicated interactions with clotting and also directly release platelet activating factor, which can in turn initiate a chain of events that ends with the body making more platelets. I would do a clotting panel and monitor platelets every few months if it were me.
Q8
Is there any reason to believe starting on a lower than full dose of Xolair may help with tolerance? With Cromolyn for example, many of us start very slowly and work our way up to a full dose so I am wondering if there is any reason to try or not try this with Xolair.
A
Results vary. There's no definitive answer to this,
Q9
What have you found to be the most effective complementary/alternative/natural treatment for MCAS?
A
Holy basil, turmeric, quercetin, reservatrol, yoga if you can safely do it. Also eating low histamine
Q10
Could a reaction result in sudden fatigue somehow? It feels like being hit with a wave and need to sleep right away or feeling out of it. Heart rate also drops too into 40s and 50s.
A
Yes.
Q11
For Systemic Mastocytosis form of mast cell disease, what is "Kit sequencing" and when is it recommended (aside from KIT D816V mutation considerations)? Is it similar to "Other tests may include next-generation sequencing
and myeloid gene panels for additional genetic lesions" and does TET2 etc. fit into all/any of this?
Can TET2 testing be reliably done in blood, or is it tested in bone marow?
A
KIT sequencing is the only test for the D816V mutation. All tests that identify a DNA mutation do it by sequencing. That's how they would test TET2 as well. Next generation sequencing is just a newer version of older sequencing methods which are more time consuming. Myeloid gene panels are tests that look at a bunch of genes at once to find any mutations in all of them at the same time.
Blood is fine.
Q12
What is the relationship between mast cell activation and adrenal insufficiency?
A
Any type of chronic physical or psychological stress can dysregulate hormone cycling. One of the effects of this can be insufficient cortisol production.
Q13
Thanks for the post addressing when chemotherapy is necessary for mast cell disease. The last sentence, "Please note that while newer, targeted chemos have become more common, they are in fact chemotherapy and carry significant risks despite being more tailored, including the potential for organ damage or failure,"...are interferon, gleevec, midostaurin, and Blu-285 as considered chemotherapy for purpose of this sentence?
A
Yes.
Q14
So much of the medical advice I read is to "avoid your triggers." How do you figure out what your triggers are? Specifically, how do you figure out what foods to avoid, if any? I had a terrible reaction to peanut butter, and then reacted again a week later to the smell. My rast was strongly negative and when I tried it again, Epi pen in hand, I didn't react. I understand the bucket analogy, but where does that leave things like peanut butter?
A
http://www.mastattack.org/2017/04/mastattack-107-laypersons-guide-mast-cell-diseases-part-17/