Hi - I have been on Mezavant for 6 months (2x day vs. prescribed 4). I would say remission after 4 months. I have however, developed Histamine Intolerance - not sure if it's Mast Cell Activation Syndrome (MCAS).
Tex, you wrote this in a previous post about Mesalamine (the main drug in Mezavant)....
Some of us cannot take mesalamine, because it causes us to react (despite being on a restricted diet). For anyone who is sensitive to NSAIDs, mesalamine causes the production of inflammatory leukotrines....
Due to that...I wonder if there is possibly a link to the Mezavant causing the HIT or MCAS? I looked up leukotrienes but couldn't make sense if they could cause mast cell stuff.
I was able to eat histamine food like shellfish and canned fish until about month 3 of the Mezavant. Then I went back to your book and read more on histamines and MCAS. I realized that maybe I wasn't getting a whole lot better due to some of the Histamine foods I was eating so I cut them all out. I am now taking a DAO enzyme which I think helps but I am afraid to try shellfish again and no more left overs for me! If I eat too much HI (inadvertently) in a day, or get too much sun, exercise too much, or the last thing I discovered was I can't tolerate saunas or red light therapy, I get neuro-inflammation vs. a gut reaction the next day...almost like vertigo, light headed, low blood pressure feeling...sometimes it lasts 2-3 days. I have tried anti-histamines and they do help a bit. This is why I suspect MCAS.
I had blood work done recently and my Eosinophils (white blood cells) were high...which upon research shows this can be an allergic reaction. I had a tryptase test done and it came back above average but not out of range (9.95/11.1). I now understand I may need to do that test while having an allergic reaction to be properly diagnosed with MCAS. In your book you say some people can be allergic to Mesalamine. I wonder now.
I am wanting to expand my diet now that I am remission from LC. I have been on strict diet...with no gluten, soy, corn, dairy, sugar and alcohol for a year now. I do worry the restrictions result in more sensitivities and allergies. I wonder about the gut micro-biome and leaky gut and if I don't heal that I may develop more auto-immune stuff.
Any perspectives and insights welcome...
Thank You!
Mezavant, HIT and MCAS
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Re: Mezavant, HIT and MCAS
Allergies can present all sorts of challenges, but if you have your MC in remission, then that's evidence that you at least have the main source of inflammation associated with MC under control, and as long as you manage to keep it under control, that should prevent the development of other autoimmune issues. Of course, there are never any guarantees, as those of us with immune problems can attest.
These are uncharted waters (with no supporting research), so we are pretty much on our own with regard to managing control over our symptoms. You are in basically the same situation that I'm in, with mast cell issues proving to be more challenging than controlling MC. I find that keeping MC in remission is a relatively simple matter compared with dealing with mast cell problems. In other words, although most of the time I'm able to keep everything under control, whenever there's a problem, it's almost surely due to mast cell issues.
Histamine is an essential part of the proper operation of our body, since we couldn't properly digest our food if histamine didn't initiate the production of stomach acid whenever our body sensed that we were about to eat a meal. And since almost every food (and drink) contains some amount of histamine (or causes our body to produce histamine), navigating this maze of complications in our diet on a daily basis requires constant vigilance (and regular tweaking of food choices and serving sizes of foods that contain more than minimal amounts of histamine). But so far, at least, I find that it's doable, so long as I avoid high histamine foods, and limit my intake of medium histamine foods.
Regarding your question about leukotrienes:
Yes, leukotrienes are indeed associated with mast cell activation. When mast cells are activated, they release various mediators, including histamine, cytokines, and leukotrienes.
Leukotrienes are lipid mediators derived from arachidonic acid through the action of the enzyme lipoxygenase. They are produced by mast cells, among other cell types, and are involved in the inflammatory response. Specifically, leukotrienes can contribute to bronchoconstriction, increased vascular permeability, and recruitment of other immune cells to sites of inflammation.
Leukotrienes appear to be associated primarily with IgE-based reactions, implying that they're independent of MC reactions, although the initial development of histamine intolerance is surely associated with MC (through its tendency to deplete diamine oxidase enzyme).
But while those are my thoughts (and insights) on the topic, unfortunately, I don't have any easy solutions. We have to listen to our bodies, and respond accordingly. And to complicate matters, the more powerful a histamine reaction might be, the longer its effects seem to persist. In other words, a slight reaction might mostly disappear in a couple of days, whereas a stronger reaction can take a week or two, (or more) to fade away. I'm guessing this is because stronger reactions are associated with higher histamine levels, and because of our depleted DAO situation, those higher histamine levels are usually slow to decline.
Sorry I couldn't do better, but I hope this is helpful.
Tex
These are uncharted waters (with no supporting research), so we are pretty much on our own with regard to managing control over our symptoms. You are in basically the same situation that I'm in, with mast cell issues proving to be more challenging than controlling MC. I find that keeping MC in remission is a relatively simple matter compared with dealing with mast cell problems. In other words, although most of the time I'm able to keep everything under control, whenever there's a problem, it's almost surely due to mast cell issues.
Histamine is an essential part of the proper operation of our body, since we couldn't properly digest our food if histamine didn't initiate the production of stomach acid whenever our body sensed that we were about to eat a meal. And since almost every food (and drink) contains some amount of histamine (or causes our body to produce histamine), navigating this maze of complications in our diet on a daily basis requires constant vigilance (and regular tweaking of food choices and serving sizes of foods that contain more than minimal amounts of histamine). But so far, at least, I find that it's doable, so long as I avoid high histamine foods, and limit my intake of medium histamine foods.
Regarding your question about leukotrienes:
Yes, leukotrienes are indeed associated with mast cell activation. When mast cells are activated, they release various mediators, including histamine, cytokines, and leukotrienes.
Leukotrienes are lipid mediators derived from arachidonic acid through the action of the enzyme lipoxygenase. They are produced by mast cells, among other cell types, and are involved in the inflammatory response. Specifically, leukotrienes can contribute to bronchoconstriction, increased vascular permeability, and recruitment of other immune cells to sites of inflammation.
Leukotrienes appear to be associated primarily with IgE-based reactions, implying that they're independent of MC reactions, although the initial development of histamine intolerance is surely associated with MC (through its tendency to deplete diamine oxidase enzyme).
But while those are my thoughts (and insights) on the topic, unfortunately, I don't have any easy solutions. We have to listen to our bodies, and respond accordingly. And to complicate matters, the more powerful a histamine reaction might be, the longer its effects seem to persist. In other words, a slight reaction might mostly disappear in a couple of days, whereas a stronger reaction can take a week or two, (or more) to fade away. I'm guessing this is because stronger reactions are associated with higher histamine levels, and because of our depleted DAO situation, those higher histamine levels are usually slow to decline.
Sorry I couldn't do better, but I hope this is helpful.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Re: Mezavant, HIT and MCAS
Thanks Tex for your answer...helpful yes, your explanation of luekotrines...and as you say, we are all somewhat navigating in the dark.