New with question about mast cells and LC

Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.

Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

User avatar
faithberry
Adélie Penguin
Adélie Penguin
Posts: 246
Joined: Wed Mar 04, 2009 7:40 am

Post by faithberry »

Tex, I agree with you wholeheartedly. We need to be precise and accurate as our comments on a forum are often repeated from one person to another, and could lead to confusion and misinformation. Since all foods, except fat and sugar, contain some protein, wouldn't their hydrolisis always result in some msg then, even if only small amounts from some foods?

Well, if you couldn't tolerate all those things too (corn starch, citric acid, etc.), maybe you had a mast cell/histamine problem!!!! :lol: Just kidding, but then who knows!

I don't know if I'll ever know for certain in my own case, but I know high histamine foods cause me mega problems.
Faith

LC (in remission)
User avatar
faithberry
Adélie Penguin
Adélie Penguin
Posts: 246
Joined: Wed Mar 04, 2009 7:40 am

Post by faithberry »

Wikipedia says about corn starch:
The corn is steeped for 30 to 48 hours, which ferments it a little.


No wonder I can't tolerate it if it's fermented. Don't know how much 'a little' is! Anything fermented is not allowed on a low histamine diet.
Faith

LC (in remission)
User avatar
tex
Site Admin
Site Admin
Posts: 35349
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Faith wrote:Well, if you couldn't tolerate all those things too (corn starch, citric acid, etc.), maybe you had a mast cell/histamine problem!!!! :lol: Just kidding, but then who knows!
Actually, (though I didn't realize it at the time), I'm pretty sure that I did indeed have a mast cell issue. In fact, I suspect that it is somewhat common with MC. Consider this:

(Now this is just my theory, and I haven't seen it documented anywhere - yet), but I've often mentioned on this board, my belief that the immune system tends to concentrate on what it perceives as the primary problem confronting it, at any given point in time, (to the suppression, or even exclusion, of other, less significant agonists). IOW, I believe this is the reason why we never seem to notice our minor intolerances, until we have eliminated gluten, for example, and our tissues have healed sufficiently, so that the gliadin antibody level declines to the point where the antibodies due to the next "allergen" in the "pecking order", exceed the level of the anti-gliadin antibodies, so that the "secondary" antibody production captures the attention of the immune system, and therefore triggers a response. Once that secondary "allergen" is removed from the diet, then the immune system recognizes the third most significant "allergen", etc. This continues until all relevant food intolerances have been removed from the diet.

As evidence of this, note that no one ever notices that they are soy intolerant, until they have been on the GF, DF diet for a while, and their gut has been able to recover somewhat. In fact, many/most members here have mentioned that they noticed a significant improvement after removing gluten, (or gluten and dairy), from their diet, only to be soon plunged right back into a full-blown reaction, which they subsequently are able to end by removing soy from their diet, (or eggs, or whatever the next intolerance might be, in their personal situation).

Since T-cells dominate MC reactions, (by definition), any mast cell participation will not be likely to be noticed, until after the T-cell reactions have been brought down to a sufficiently low level, that the immune system "notices" the mast cell reactions. Do you follow what I'm saying? This is all speculation, of course, but it certainly fits the empirical constraints that are involved with these issues, and I think that many/most of us can identify with this scenario. So what am I leading up to? Here's the "punch line":

I've had true allergies, most of my life. I had asthma so bad, when I was a kid, that if a kind-hearted, small-town country doctor, hadn't come to my house one night, (about 1 or 2 o'clock in the morning), and given me a cortisone shot, I probably wouldn't be here to write this, because I was already turning blue, when he arrived. Somewhere in my late teens to early 20s, the asthma faded away, and was replaced by hay fever, (but only in the fall of the year - I was allergic to weed pollen, but not to tree pollen, in those days). This lasted until I was in my 50s, and I began to notice that my hay fever was becoming less and less of a problem, every year. Then one day, I had my first MC episode, (though I didn't recognize it at first, of course). After about a year of "occasional" episodes, (which I thought to be either the flue, or food poisoning), with slowly increasing severity, I noticed that I no longer had any hay fever reactions at all, any more, (not even a single sniffle, sneeze, or watery eye). The hay fever was totally gone.

This state of affairs lasted until after I finally figured out what was wrong with me, adopted a GF diet, and continued to remove other foods, over a period of about a year and a half, until I finally achieved remission. Approximately 4 years after achieving remission, my hay fever came back with a vengeance, except that this time I am allergic to tree pollen in the spring, also, and so far, at least, the fall reactions, (due mostly to ragweed, presumably), are not as severe as the reactions to oak pollen, in the spring. Note that 3 years after adopting the GF diet, (one and a half years after achieving remission), I still showed intestinal damage, (based on a fecal fat score). Presumably, this implies that there may have been some sort of continuing immune system activity, (mast cell reactions?), that interfered with the proper healing of my intestines, (even though I was in remission, with no noticeable clinical symptoms. At any rate, my point is that my immune system was "distracted" by some sort of GI system issues, for all those intervening years, and until that activity subsided, my hay fever was put on hold, because my immune system was "distracted" by other, more important issues. At least, that's the way I see it. I think that it's certainly more than just a coincidence. Do you have any thoughts on this? Here's a related thread:

http://www.perskyfarms.com/phpBB2/viewt ... oak+pollen
The corn is steeped for 30 to 48 hours, which ferments it a little.
No wonder I can't tolerate it if it's fermented. Don't know how much 'a little' is! Anything fermented is not allowed on a low histamine diet.
The actual amount of fermentation is probably very slight, because if it were allowed to progress very far, the starch would have an odor problem. This is always a potential problem with wet milling. When making masa, for example, if the process is not completed in a timely manner, the masa, tortillas, tortilla chips, etc., will have a characteristic sour, rotten, odor and taste. Definitely not palatable. Of course, if we are intolerant or allergic to something, it takes very little of it to affect us.

Tex
:cowboy:

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.
Dee
Rockhopper Penguin
Rockhopper Penguin
Posts: 1929
Joined: Thu May 26, 2005 4:40 am
Location: OHIO

Post by Dee »

Hi Faith
Have you been tested for mast cells?????? Like blood tests, etc????
Curious!!!
Also, I wonder how long the pathologist keeps the tissue samples from biopsies????
Dee~~~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
User avatar
Bifcus16
Rockhopper Penguin
Rockhopper Penguin
Posts: 578
Joined: Wed Jan 28, 2009 5:02 pm
Location: Canberra

Post by Bifcus16 »

Hi Tex,

I was fascinated by your description of how your tendency to hayfever has changed. Right from childhood I always had bad hayfever. It was a great embarrassment as a kid in the pre-tissue days.

I haven't had any significant hayfever for a few years now, and my asthma has been better too. I had been better for perhaps a year or so before I was dx with LC. I stopped dairy very quickly, and my hayfever improved again. Now I find without gluten it is even better. I also had very few colds or viruses over this time, and they haven't been serious.

According to my immunologist, this is because my body is simply not recognising the invaders and hence not causing an inflammatory reaction. The timing of the change she attributes to menopause, and my significant weight changes at the same time. But she admits to not really knowing. There are so few people diagnosed with primary immune deficiencies who are well, that they simply haven't studied us at all. More commonly, PID patients struggle to hold down jobs due to their poor health.

I am to to go back to her as soon as I get a cold or similar that doesn't resolve - which she expects to be before my 'back up' appointment in June. I don't want this to happen as she is ready for me to start treatment - and I am keen to avoid that.

Now you have me really worried that managing my food intolerances and LC will change my immune system and send me for IVIG treatment sooner!!! :cry:

Lyn

Giving myself a big Pollyanna talk - right now I am fine - don't focus too much on the future.
User avatar
tex
Site Admin
Site Admin
Posts: 35349
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Lyn,

I apologize - I didn't mean to cause you to worry. I didn't realize that anyone else had ever noticed that effect.

I think that your immunologist is wrong, of course, based on our experience. I also had very, very few colds, or any other viruses, from the time I began to have MC symptoms, until about 2 or 3 years after I was in remission. I always wondered why everyone else talked about a "weakened" immune system, when mine seemed to be stronger than ever, (because I rarely caught a cold or other virus). In fact, I really haven't had anything close to a "normal" number of colds, until last year, which was roughly 4 years after reaching remission.

Since she is only guessing, anyway, then she is probably wrong, according to our experience, so why is it so urgent that the treatment must be started so soon, (after all these years)? I doubt that your immune system has been permanently, and substantially, changed, by MC - it's just behaving in an alternate mode, pending the return of your GI system to "normal". I'm no doctor, of course, but I think that your immune system will return to whatever it's "normal" performance level was, prior to the MC, once your GI system completes the healing process.

Tex
:cowboy:

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.
User avatar
Bifcus16
Rockhopper Penguin
Rockhopper Penguin
Posts: 578
Joined: Wed Jan 28, 2009 5:02 pm
Location: Canberra

Post by Bifcus16 »

Hi Tex,

Don't get too worried about upsetting me. :wink:

The problem with my immune condition is that whilst it is very very common for it to show up as a problem in childhood, sometimes it waits to pop out later - frequently around the 40's and 50's. They don't know why. We haven't been monitoring my figures for long, but they have trended the wrong way.

And GI issues are a common first symptom for those who show up in later life.

So even if my immune system goes back to 'normal' once my MC is healed, I still have to face the real probability that it will fail at some point. I sometimes see my immune system as a timebomb!

Doc is ready to start treatment at the first sign I need it because the unpleasant fact is that immuno incompetent people can die or suffer very serious damage from our first bad infection. I have met a person online with brain damage from a case of meningitis, and lots with permanent lung damage, hearing damage etc. So she's right there. Doc can't start treatment until I get sick, but she wants to start asap thereafter to avoid damage. Unfortunately the treatment involves regular IV or home infusions, with attendant risks, side effects and inconvenience. I'll admit to being a little anxious about it.

I figure if I can make it to June I will have proved Doc wrong, and I can then let myself believe it won't happen for ages. I could be the first 110 year old healthy PIDer!

For the moment I just focus on getting my gut better. One step at a time.

Lyn
User avatar
tex
Site Admin
Site Admin
Posts: 35349
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Lyn,

Yes, I can see how that's a very complex issue, with a lot of possibilities, depending on how everything else plays out, and the luck of the draw. I didn't realize that it could remain hidden hidden until adulthood.

Tex
:cowboy:

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.
User avatar
faithberry
Adélie Penguin
Adélie Penguin
Posts: 246
Joined: Wed Mar 04, 2009 7:40 am

Post by faithberry »

Dee, I'm waiting to get the results back from a serum tryptase test. Should have them soon! I read in one of the Food Doc articles that the pathology lab keeps biopsy samples for up to four years. He suggests you can ask to have your samples re-stained with tryptase for mast cells. But I think that's much easier said than done! Faith
Faith

LC (in remission)
User avatar
faithberry
Adélie Penguin
Adélie Penguin
Posts: 246
Joined: Wed Mar 04, 2009 7:40 am

Post by faithberry »

Tex,

You propose an interesting theory regarding the immune system switching gears. I don't have any particular thoughts about this, but like you've experienced, I never had any colds when I had MC symptoms! I also don't have other immune system problems unless you count being pre-diabetic. Don't know about the mast cells yet. Polly pointed out, in the previous thread, that the immune reactions you have are mediated by different mechanisms. That's true, but it seems like all these various aspects of the immune system (T-cells, mast cells, IgE whatever) communicate with each other at times!

So sounds like 'little' vis-a-vis fermentation, really means 'little'. However, I found another list of MSG sources and hydrolyzed corn gluten is on it. In any case, I'm avoiding it!

Faith
Faith

LC (in remission)
User avatar
tex
Site Admin
Site Admin
Posts: 35349
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Faith wrote:That's true, but it seems like all these various aspects of the immune system (T-cells, mast cells, IgE whatever) communicate with each other at times!
Exactly. I believe that virtually anything/everything that goes on in the body, is linked in one way or another with virtually everything else. Obviously, many connections don't result in significant responses, but many/most do, or at least, they have the potential to do so, under the right conditions.

Tex
:cowboy:

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.
cludwig
Rockhopper Penguin
Rockhopper Penguin
Posts: 647
Joined: Mon May 15, 2006 9:52 pm
Location: Seattle

Post by cludwig »

Hi Friends,

I was at a compounding pharmacy yesterday and the pharmacist there is a Dr. Fine groupie (always telling folks about enterolabs and has been gluten and dairy free for years) and we got to talking about inflammation and mast cells. He said for a year that he used a drug called Ketotifen (Zaditen) by Sandoz or compounding pharmacies. It's been used in Europe for 30 years to treat asthma in kids but is not commercially available in the US. He said the great thing about this product is that in addition to blocking the antihistamine production it also is a mast cell stabilizer and an inflammatory cell mediator reducer. He said that this will allow the mucous layer to come back and heal the intestinal wall. I haven't done any research on my own, but his description sure sounds promising.

Love,
Cristi
User avatar
faithberry
Adélie Penguin
Adélie Penguin
Posts: 246
Joined: Wed Mar 04, 2009 7:40 am

Post by faithberry »

Thanks for this great input!

Ketotifen is a drug used commonly by people with Mastocytosis, but they must by it from Canada. Like you say, it's got the double benefit of being an antihistamine and a mast cell stabilizer. But the version I can get has corn starch, so not an option for me.
Faith

LC (in remission)
User avatar
tex
Site Admin
Site Admin
Posts: 35349
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Cristi,

Thanks for the great information. That's very interesting, to say the least.

By the way, how are you doing these days? Well, I hope.

Love,
Tex
:cowboy:

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.
User avatar
tex
Site Admin
Site Admin
Posts: 35349
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Faith,

That's what compounding pharmacies do - make medications to order. If you can't locate a compounding pharmacy near you, there are some that will take orders over the net. IOW, your doctor can specify not only the active ingredients, but also the inert ingredients that go into a compounded formulation.

Tex
:cowboy:

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.
Post Reply

Return to “Main Message Board”