Tex, I don't know the levels of the mast cell counts but I did send an email to my doctors office to find out.
Mary Beth you mentioned something very very interesting that may very well answer a mystery for me. You mentioned that excercise can be a trigger. I have for the last couple of years had an issue where if I had had a day of hard physical work I would feel awful for the next day or so. My doctors have just looked at me like I grew a third arm or something.
This has been a repeatable event now for a while. If we have a large snow storm requiring a few hours of significant labor that would be enough to trigger feeling like I have the flu or something for the next couple of days. Is this what you are talking about?
Joe
MC and Histamine
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Your words sound like they are coming out of my mouth! Wow!it was like i was having chronic MC reactions without the D
I have to work hard to keep the BMs coming, but with enough "stuff" I am getting what might qualify as Normans. But the other stuff is still there, so I know I am not in remission. There is too much going on.
And Mary Beth and Joe - another Wow! I have LONG felt worse after exercise. I know my back is screwed up and my L leg feels heavy and hurts, but I have been feeling really lousy when I do ANYTHING lately. Even more exhausted, sometimes light headed from it. My legs hurt, and it takes me a few minutes before I can do anything.
And after being in the pool I feel horrible, not better. My back might feel better, but the rest of me doesn't.
I am sure it isn't my heart, but I get scared nevertheless.
Now, maybe, it can be explained.
Joe,
The list of histamine symptoms can vary. In my flare last spring when I was doing a fair amount of running I would come home and be very flushed. At first I just thought my face was red from the Texas heat but then realized it was flushing, a common histamine symptom. I noticed I was always getting a headache and sleepy afterwards, so I guess you can say that is flu-like. It wasn't dehydration because I was very careful with that.
When I was at my worst a few years ago I couldn't do any activity without reacting. There is something known as "exercise induced anaphylaxis" that involves the combination of food and exercise as the triggers. Interstingly, wheat is the most common trigger for EIA, followed by things like peanuts, corn etc - all high lectin foods. I find that interesting because lectins can cause mast cell degranulation. It has been a while since I looked up that info but I wonder what the difference is between exercise induced anaphylaxis and MCAD is?? My MCAD is now in remission, but I had it for 4 years without much of a break..
Mary Beth
The list of histamine symptoms can vary. In my flare last spring when I was doing a fair amount of running I would come home and be very flushed. At first I just thought my face was red from the Texas heat but then realized it was flushing, a common histamine symptom. I noticed I was always getting a headache and sleepy afterwards, so I guess you can say that is flu-like. It wasn't dehydration because I was very careful with that.
When I was at my worst a few years ago I couldn't do any activity without reacting. There is something known as "exercise induced anaphylaxis" that involves the combination of food and exercise as the triggers. Interstingly, wheat is the most common trigger for EIA, followed by things like peanuts, corn etc - all high lectin foods. I find that interesting because lectins can cause mast cell degranulation. It has been a while since I looked up that info but I wonder what the difference is between exercise induced anaphylaxis and MCAD is?? My MCAD is now in remission, but I had it for 4 years without much of a break..
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Jamyk8 the brand name produ t does contain corn starch and lactose, but the generic versions do not...at least the version I have found. Along those lines the brand name of Zyrtec does also contain lactose.
As far as the brand names of Claritin the summary is as follows:
Claritin regular 10mg tabs contain lactose.
Claritin Ready-Tabs are lactose free/casein free.
Claritin Grape and Fruit flavored syrup is lactose/casein free.
As far as the brand names of Claritin the summary is as follows:
Claritin regular 10mg tabs contain lactose.
Claritin Ready-Tabs are lactose free/casein free.
Claritin Grape and Fruit flavored syrup is lactose/casein free.
Joe
Mary beth said:
My only environmental allergy is nickel.
I've thought about trying antihistamines, but the symptoms don't bother me enough to endure the dry mouth, sleepiness, etc.
I put my body to the test on Sunday. I made a zesty beef and black bean chili (tons of chili powder, chipotle, garlic, onion, spices, even chocolate), ate 3 bowls of it, then had dark chocolate and 2 scoops of peanut butter for dessert! It did cause some uncomfortable, mild D the next afternoon. Not bad considering!!
I plan to exercise tonight. My doctor who's been treating me with acupuncture and manipulation thinks he can improve the "sympathetic" rash on my trunk when I exercise. Can't wait to see!
I believe mast cells are a factor in my MC symptoms and my exercise intolerance. Scents, wine, certain foods often make me IMMEDIATELY woozy or send me running to a bathroom with D (out of nowhere). When I heat up and sweat during exercise my face flushes, my thighs flush and itch, and I get sweat-filled mini blisters and hives on my trunk. I don't think I have major mast cell disease, just clusters of too many mast cells in certain places. I've read they have a tendency to congragate - they are not evenly dispersed throughout your body. I also don't have symptoms all the time (in reaction to histamine in food), so it takes several bad choices or exposures to make them degranulate (except for exercise...that's a constant).That statement pretty much sums up mast cell activation for me. My body would react to changes (perceived threats by my immune system) with a mast cell overreaction. Everything from medication, food, barometric pressure changes, scents, hormone changes . . . you name it, caused me to have symptoms.
and
You can have mast cell/histamine symptoms without having a big increase in mast cell numbers. Often people have normal levels of mast cells that behave badly and dump their contents.
My only environmental allergy is nickel.
I've thought about trying antihistamines, but the symptoms don't bother me enough to endure the dry mouth, sleepiness, etc.
I put my body to the test on Sunday. I made a zesty beef and black bean chili (tons of chili powder, chipotle, garlic, onion, spices, even chocolate), ate 3 bowls of it, then had dark chocolate and 2 scoops of peanut butter for dessert! It did cause some uncomfortable, mild D the next afternoon. Not bad considering!!
I plan to exercise tonight. My doctor who's been treating me with acupuncture and manipulation thinks he can improve the "sympathetic" rash on my trunk when I exercise. Can't wait to see!
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Gabes Update
having claritin daily and 12mg of benedryl at night
- this is the first week in over 3 months i have not had a headache/nausea occurance,
- symptoms such as gas and gerd are reducing
Lesley/Jenny
i had discussions at length with my pharmacists when i was chosing an antihistmine, claritin had the least amount of inactive ingredients (tablets are more than half the size compare to Zirtec) and they said of all the meds, claritin is the one that patients have the least amount of issues with.
having claritin daily and 12mg of benedryl at night
- this is the first week in over 3 months i have not had a headache/nausea occurance,
- symptoms such as gas and gerd are reducing
Lesley/Jenny
i had discussions at length with my pharmacists when i was chosing an antihistmine, claritin had the least amount of inactive ingredients (tablets are more than half the size compare to Zirtec) and they said of all the meds, claritin is the one that patients have the least amount of issues with.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Greetings all,
I've only been lurking in the last few months, but stopping by here today I find more posts about MCs. They always seem to find their way on to the board, don't they?
Veterans of the board may remember my original diagnosis was mastocytic enterocolitis, (too many mast cells in my gut, determined via biopsy) but other systemic symptoms soon followed with increasing severity. Coincidental to this discussion, I finally made it to the mast cell specialist in South Carolina earlier this week. (Dr. Afrin) The appointment went well and he confirmed that my diagnosis is Mast Cell Activation Syndrome (Disorder) that initially presented as mastocytic enterocolitis.
Dr. Afrin's article on MCAS, if you're interested:
http://www.ncbi.nlm.nih.gov/pmc/article ... 2-4-10.pdf
These are the things that Dr. Afrin has noted about MCs in our discussions: He is convinced that what we know now about mast cells and their mediators (like histamine) is literally in its' infancy. He believes it will be decades before doctors fully understand the role of mast cells. This translates to patients with MC issues struggling to get symptoms under control, as MCs are not well understood by physicians.
He showed me a list of mast cell mediators that have been identified thus far. It was over a page long! He believes that more mediators will be identified in the future. What this means is that if you do indeed have a mast cell issue, you have dozens of potential mediators (not just histamine) that could be playing havoc with your body. Here's a list of some of the identified mediators (and their effects):
http://www.aad.org/education-and-qualit ... -mediators
I absolutely believe that mast cells will be identified with increasing evidence in not only GI issues, but other related issues as well. (How often does someone with colitis experience headaches, fatigue, rashes, etc.?)
Here's a great article on mast cells and GI issues that I don't think I've posted previously. It's a little older, but it does a nice job discussing the relationship. http://alford.grimtrojan.com/Mast_Cells ... isease.htm
So glad that some of you are getting relief from the antihistamines! As Mary Beth and I have pointed out before, that is considered diagnostic in and of itself. I currently take Zyrtec, 20 mg twice per day and Zantac 150 mg twice per day. I add 50 mg of Benadryl as needed. That's a bit more than most, but that's because of the systemic mast cell issues. I couldn't imagine my life without anti-histamines at this point.
Sidebar...many thanks to Tex and Mary Beth who graciously took me under their wing when I came to this board with my diagnosis of ME a few years back. As my symptoms became more and more systemic they (and others) supported me and urged me to continue looking for answers related to a mast cell disorder. They offered advice, researched topics on my behalf and just generally told me to "hang in there." Thank you for that guys, you'll never know how much that has meant to me.
Hoping that each of you find an answer to your potential mast cell issues...
Julie
I've only been lurking in the last few months, but stopping by here today I find more posts about MCs. They always seem to find their way on to the board, don't they?
Veterans of the board may remember my original diagnosis was mastocytic enterocolitis, (too many mast cells in my gut, determined via biopsy) but other systemic symptoms soon followed with increasing severity. Coincidental to this discussion, I finally made it to the mast cell specialist in South Carolina earlier this week. (Dr. Afrin) The appointment went well and he confirmed that my diagnosis is Mast Cell Activation Syndrome (Disorder) that initially presented as mastocytic enterocolitis.
Dr. Afrin's article on MCAS, if you're interested:
http://www.ncbi.nlm.nih.gov/pmc/article ... 2-4-10.pdf
These are the things that Dr. Afrin has noted about MCs in our discussions: He is convinced that what we know now about mast cells and their mediators (like histamine) is literally in its' infancy. He believes it will be decades before doctors fully understand the role of mast cells. This translates to patients with MC issues struggling to get symptoms under control, as MCs are not well understood by physicians.
He showed me a list of mast cell mediators that have been identified thus far. It was over a page long! He believes that more mediators will be identified in the future. What this means is that if you do indeed have a mast cell issue, you have dozens of potential mediators (not just histamine) that could be playing havoc with your body. Here's a list of some of the identified mediators (and their effects):
http://www.aad.org/education-and-qualit ... -mediators
I absolutely believe that mast cells will be identified with increasing evidence in not only GI issues, but other related issues as well. (How often does someone with colitis experience headaches, fatigue, rashes, etc.?)
Here's a great article on mast cells and GI issues that I don't think I've posted previously. It's a little older, but it does a nice job discussing the relationship. http://alford.grimtrojan.com/Mast_Cells ... isease.htm
So glad that some of you are getting relief from the antihistamines! As Mary Beth and I have pointed out before, that is considered diagnostic in and of itself. I currently take Zyrtec, 20 mg twice per day and Zantac 150 mg twice per day. I add 50 mg of Benadryl as needed. That's a bit more than most, but that's because of the systemic mast cell issues. I couldn't imagine my life without anti-histamines at this point.
Sidebar...many thanks to Tex and Mary Beth who graciously took me under their wing when I came to this board with my diagnosis of ME a few years back. As my symptoms became more and more systemic they (and others) supported me and urged me to continue looking for answers related to a mast cell disorder. They offered advice, researched topics on my behalf and just generally told me to "hang in there." Thank you for that guys, you'll never know how much that has meant to me.
Hoping that each of you find an answer to your potential mast cell issues...
Julie
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Julie,
Thanks for posting those links! My head is swimming, but I think I have a better picture of how mast cells work (or, in your case, malfunction).
A general question: for most of us, a reaction to a particular food is not an immediate thing, but usually shows up several hours later (sometimes days later), after the food in question has made its way through our digestive tract to the colon. However, at times we may have a reaction that is almost immediate (literally after a few bites, the rumbling starts). Why is that? Does it mean that we are having a mast cell reaction to the food? Or does it mean that other parts of the digestive tract are involved besides the colon? I don't know if I have a mast cell issue or not, but I do know that sometimes my symptoms are too immediate to be considered a reaction to digesting a food I can't tolerate. Also, what about the times when the consistency of the BM is unaffected, but motility is compromised? Or the correlation between stress and symptoms? (one of my kids gets sick, I'm heading for the bathroom!) The article indicated that the stress reaction may also have a mast cell component.
Anyone with mast cell knowledge, please weigh in!
Thanks for posting those links! My head is swimming, but I think I have a better picture of how mast cells work (or, in your case, malfunction).
A general question: for most of us, a reaction to a particular food is not an immediate thing, but usually shows up several hours later (sometimes days later), after the food in question has made its way through our digestive tract to the colon. However, at times we may have a reaction that is almost immediate (literally after a few bites, the rumbling starts). Why is that? Does it mean that we are having a mast cell reaction to the food? Or does it mean that other parts of the digestive tract are involved besides the colon? I don't know if I have a mast cell issue or not, but I do know that sometimes my symptoms are too immediate to be considered a reaction to digesting a food I can't tolerate. Also, what about the times when the consistency of the BM is unaffected, but motility is compromised? Or the correlation between stress and symptoms? (one of my kids gets sick, I'm heading for the bathroom!) The article indicated that the stress reaction may also have a mast cell component.
Anyone with mast cell knowledge, please weigh in!
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
You've pretty much answered your own questions. Yes, a relatively prompt reaction is almost surely due to mast cell involvement, (IMO), and yes, the entire digestive tract is often involved for many of us, (even if we don't have mast cell issues).Cynthia wrote:However, at times we may have a reaction that is almost immediate (literally after a few bites, the rumbling starts). Why is that? Does it mean that we are having a mast cell reaction to the food? Or does it mean that other parts of the digestive tract are involved besides the colon?
The autoimmune-connected IgA reactions that we experience in our colon are much slower to develop, than the IgE-based histamine reactions connected with mast cells. Not only that, but it normally takes something on the order of at least 6 or 8 hours for any significant amount of a meal to reach the colon, so even most IgA-based reactions begin in the small intestine, (IMO), and are later continued when the material reaches the colon.
No one seems to know just how long it takes for food to get to the colon, and that data point is very difficult to find in the literature. Well, it just so happens that I can pinpoint that time pretty closely, since I don't have a colon. My turnaround time is approximately 8 to 9 hours, so that settles that.
Having a BM soon after eating is a normal response, (watch any animal). It's a normal reflex by the body, to make room in the system for the additional food that has been added to the system. However, normally, it shouldn't be D. If a normal BM is available in the queue, (rectum), then the first BM will obviously be a Norman. If stress, or any other trigger promotes additional purging of the system, though, then any additional stool will almost surely progress to D, since it has not been in the colon long enough to be sufficiently dewatered.Cynthia wrote:Also, what about the times when the consistency of the BM is unaffected, but motility is compromised? Or the correlation between stress and symptoms? (one of my kids gets sick, I'm heading for the bathroom!) The article indicated that the stress reaction may also have a mast cell component.
Remember that a fight or flight response is the result of stress, (it's a natural, pre-programed response to serious stress), and yes, it obviously would have to involve mast cells, because the FOF response involves rapid shallow breathing, tachycardia, the digestive system is shut down, hormones and chemicals are released into the bloodstream to increase blood pressure, and the brain, and all vital body systems are focused on either fighting the way out of the current threatening situation, or getting the hell out of there, at maximum speed. Most of those responses match the effects of mast cell degranulation/histamine release.
At least that's the way I see it.
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.
Hi Everyone,
I'd like to point out that while some of you may be having a histamine related problem, it may not be a systemic mast cell issue. Some of you may simply have a reduciton in Diamine Oxidase, the enzyme that helps rid the body of histamine. Gut enzyme levels could be low due to gut damage, and may return to normal once healing occurs. Typically people with systemic issues will experience a wide range of symptoms and triggersn extend beyond food. Some of you may want to try Histame or another DAO enzyme supplement to see if it helps.
Mary Beth
I'd like to point out that while some of you may be having a histamine related problem, it may not be a systemic mast cell issue. Some of you may simply have a reduciton in Diamine Oxidase, the enzyme that helps rid the body of histamine. Gut enzyme levels could be low due to gut damage, and may return to normal once healing occurs. Typically people with systemic issues will experience a wide range of symptoms and triggersn extend beyond food. Some of you may want to try Histame or another DAO enzyme supplement to see if it helps.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer