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I do not have a diagnosis of MC nor has it been ruled out. When I had a colonoscopy over 5 years ago the GI doc was not looking for MC and only ruled out celiac (we all know how meaningless that can be) and then told me to eat fiber even though I had told him fiber made things worse. I had had a range of GI symptoms my entire adult life (I am 63 so that's a long time) but mostly I had just tried to manage it myself When I found this forum I was having WD every 10-15 minutes whenever I ate anything (or so it seemed) and I could only stop it with 6-8 immodium, only to have it start again if I tried to eat anything. This was the worst it had ever been and well beyond my ability to manage it until I found this forum. My first question here was does it make sense for me to get another colonoscopy to see if I have MC and Tex's answer was not really, which was fine with me. I went straight to dietary restrictions and Enterolab testing, and although I have not done away with a lifetime of damage to my system in a few short months, I have stopped the seemingly unstoppable D, until yesterday. Back again with a vengeance after ingesting some homemade seed cracker. I only needed 2 immodium to stop it, so at least that was an improvement over a few months ago..
So all that to ask my question. What is the relationship between mast cell reactions and MC? and could seed crackers trigger my mast cell like D despite them being allowed on a low histamine diet. I should add that I had let a few high histamine foods slip in over the past week or 2 seemingly without problem until yesterday afternoon when it felt like I was back to square one.
Tex, I am anxiously awaiting the publication of your book. I'm sure you are too.
Jean
Mast cells and MC
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Jean,
You're getting into part of my theory of how MC (and other autoimmune-type diseases) develop, that I describe in the book. Despite the fact that MC is described as a T cell-driven "disease", IMO, without initial mast cell participation, digestive system diseases that we describe as "inflammatory bowel diseases" would/could never develop. IOW, IMO, MC reactions are driven by mast cells. The T cells are secondary responders, and when researchers first described LC, they missed the mast cell issues and focused on the T cells, instead.
Remember, that's just one of my theories, and no one wearing a white coat believes it (yet).
Tex
You're getting into part of my theory of how MC (and other autoimmune-type diseases) develop, that I describe in the book. Despite the fact that MC is described as a T cell-driven "disease", IMO, without initial mast cell participation, digestive system diseases that we describe as "inflammatory bowel diseases" would/could never develop. IOW, IMO, MC reactions are driven by mast cells. The T cells are secondary responders, and when researchers first described LC, they missed the mast cell issues and focused on the T cells, instead.
Remember, that's just one of my theories, and no one wearing a white coat believes it (yet).
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.
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Deanna in CO
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Tex,
I think I understand what you're saying here. And I know I have mast cell issues, because I have asthma and when they do skin tests I'm allergic to almost everything. But when they re-stained my biopsies from my colonoscopy, the results were negative. (They did not give me the actual count, and this was Kaiser, so who knows how reliable the results are - but they did find my MC.)
Anyway, how would my MC reactions be driven by mast cells if I have a negative mast cell result?
Just wondering . . . . Like everyone else, I am anxiously waiting for your book! :-)
Deanba
I think I understand what you're saying here. And I know I have mast cell issues, because I have asthma and when they do skin tests I'm allergic to almost everything. But when they re-stained my biopsies from my colonoscopy, the results were negative. (They did not give me the actual count, and this was Kaiser, so who knows how reliable the results are - but they did find my MC.)
Anyway, how would my MC reactions be driven by mast cells if I have a negative mast cell result?
Just wondering . . . . Like everyone else, I am anxiously waiting for your book! :-)
Deanba
Deanna,
According to research, approximately 70% of all patients who have an IBD (including celiac disease) have a mast cell count elevated enough to qualify for a diagnosis of mastocytic enterocolitis. However, I have a hunch that like the T cell infiltration, this is a secondary response to the primary problem. I believe that the primary problem is normal numbers of mast cells that degranulate inappropriately or on a chronic schedule -- I'm pretty sure that the chronic degranulation of mast cells promotes the propagation of additional mast cells.
IOW, I don't believe that the increased mast cell count is the initial cause of the problem -- rather, the increased numbers are a result of the initial (primary) inflammation process. I will concede, however, that once the numbers increase, then the excess numbers of mast cells probably do help to perpetuate the inflammation (IOW, they help to create a self-perpetuating process of inflammation).
The bottom line is that you don't have to have excess numbers of mast cells in order to have a mast cell problem. Everyone with an IBD has a mast cell problem; some cases are just worse than others.
Again, that's just my opinion.
Tex
According to research, approximately 70% of all patients who have an IBD (including celiac disease) have a mast cell count elevated enough to qualify for a diagnosis of mastocytic enterocolitis. However, I have a hunch that like the T cell infiltration, this is a secondary response to the primary problem. I believe that the primary problem is normal numbers of mast cells that degranulate inappropriately or on a chronic schedule -- I'm pretty sure that the chronic degranulation of mast cells promotes the propagation of additional mast cells.
IOW, I don't believe that the increased mast cell count is the initial cause of the problem -- rather, the increased numbers are a result of the initial (primary) inflammation process. I will concede, however, that once the numbers increase, then the excess numbers of mast cells probably do help to perpetuate the inflammation (IOW, they help to create a self-perpetuating process of inflammation).
The bottom line is that you don't have to have excess numbers of mast cells in order to have a mast cell problem. Everyone with an IBD has a mast cell problem; some cases are just worse than others.
Again, that's just my opinion.
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.
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Deanna in CO
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- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
That would probably be helpful for some of us, but remember that not everyone has serious issues with histamines, and histamines are only one of many different types of inflammatory modulators that can be released by mast cells. In addition to foods that promote the release of histamines, mast cell degranulation can be triggered by items such as allergens found in foods, chemicals, drugs, and various other environmental sources. This can be a very individual issue, depending on genetics and environmental influences. (IOW, I don't know enough about this area of the immune system to be able to make a blanket statement without major reservations -- I doubt that anyone is qualified to do that.)Deanna wrote:So, Tex - if your theory is correct, we all ought to be eating a diet that would prevent mast cell degranulation - davoiding the histamine-releasing foods. Do I understand this correctly?
Deanna
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.
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Deanna in CO
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- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Ugh! I hate those words, "individual issue," because they mean a lot of detective work and not a lot of solid answers. :( One of the most frustrating things about this, IMO, is all the trial-and-error. Even my Enterolab results, which seemed so helpful at first, turn out to be less so than I had thought or hoped: Gluten (32) and dairy (34) are obviously out, probably forever; eggs (11) I can tolerate occasionally in baked goods but I react to them when I try to eat them alone. Soy (5) seemed like it should have been OK but may have triggered a rather nasty episode a couple of weeks ago - I need to try it again but I'll admit I'm a bit gun-shy now. I want to do the other Enterolab tests but it looks to me like the results from those are significantly less helpful than the ones for the "big four" since they don't even provide numerical results.
It would be nice if they (the generic "they," you know?) could come up with an answer that would just solve everything for all of us, wouldn't it? :)
In the meantime I guess I'll just keep on trying to figure out each of my "individual issues."
Thanks!
Deanna
It would be nice if they (the generic "they," you know?) could come up with an answer that would just solve everything for all of us, wouldn't it? :)
In the meantime I guess I'll just keep on trying to figure out each of my "individual issues."
Thanks!
Deanna
Thanks Tex. I got my next question answered without ever asking it myself. I was wondering what other than histamines could trigger degranulation. An internet search led me to believe that histamine wasn't the only culprit but there was no definitive answer to be found. The seed crackers I ate were not a high histamine food but the reaction I had seemed like a mast cell reaction. So it's back to a few safe food for me.
Jean
Jean
Jean,
FWIW, I am highly sensitive to sesame seeds. I learned through celiac cross reactivity testing, but honestly, I wonder if I may even have an IgE allergy to them. They are extremely allergenic - Canada has added them to their top 10 allergen list, so Canadian food labels must clearly indicate if sesame seeds are present. I was talking to a GF bakery rep at my local GF expo, and she said they don't use sesame, "because it's so dirty." She said much of it comes from China and can be contaminated with other things, etc.
The other possibility is that you have diverticulitis, which would cause GI trouble after seed ingestion. I used to think I had a flax seed problem, but I realize it was mostly because it was paired with sesame seeds.
FWIW, I am highly sensitive to sesame seeds. I learned through celiac cross reactivity testing, but honestly, I wonder if I may even have an IgE allergy to them. They are extremely allergenic - Canada has added them to their top 10 allergen list, so Canadian food labels must clearly indicate if sesame seeds are present. I was talking to a GF bakery rep at my local GF expo, and she said they don't use sesame, "because it's so dirty." She said much of it comes from China and can be contaminated with other things, etc.
The other possibility is that you have diverticulitis, which would cause GI trouble after seed ingestion. I used to think I had a flax seed problem, but I realize it was mostly because it was paired with sesame seeds.
Zizzle,
Thanks for the info on sesame seeds. My reaction to those crackers was so severe that there is no chance that I am eating them again. I am still suffering the after effects. I got rid of all seeds that resided in my house including the sesame seeds. I believe that I am better off without them and have no need to test them to see if they are ok (well maybe the sunflower seeds some day). I just looked up sesame seed allergy and read that people who are allergic to sesame seeds may also be allergic to pistachio nuts and macadamia nuts. Since those are my 2 favorite nuts I will test them some time in the future but for the moment it's back to basics. I was getting used to being able to leave the house without too much anxiety.
Jean
Thanks for the info on sesame seeds. My reaction to those crackers was so severe that there is no chance that I am eating them again. I am still suffering the after effects. I got rid of all seeds that resided in my house including the sesame seeds. I believe that I am better off without them and have no need to test them to see if they are ok (well maybe the sunflower seeds some day). I just looked up sesame seed allergy and read that people who are allergic to sesame seeds may also be allergic to pistachio nuts and macadamia nuts. Since those are my 2 favorite nuts I will test them some time in the future but for the moment it's back to basics. I was getting used to being able to leave the house without too much anxiety.
Jean