Immune System & Inflammation - a Gabes pondering

Gabes-Apg · Post by **Gabes-Apg** » Sun Apr 22, 2012 2:05 am

Since my move 15 months ago, i have been trying some different practitioners in the natural therapy realm.
before moving I was pretty lucky to have a great acupuncturist who was able to support my body and the myriad of symptoms etc (not just from MC)
the focus was generally, inflammation, immune and adrenals and side issues from leaky gut (linked to inflammation)

in my discussions with these new practitioners one common thing has become evident; my Immune System and Inflammation levels are 'interesting', at the start of the appointment when they do their assessments, immune and inflammation tend to be 'off the charts' and with some initial treatment they come back to a less intense range pretty quickly.
as time goes on and after a few treatments they dont really improve drastically. there is only very gradual improvement. something they have not really seen before....
the pratictioners are surprised that i dont have constant colds and infections and more issues with fatigue.

I have been pondering this and in line with Zizzles and Ginny's threads in the past week, this constant situation ((??I hesitate to call it stress) with the immune and inflammation would be affecting the adrenals further to that, it might explain why for so many of us MC'ers, that things can be pretty good and then wammo, symptoms can reoccur for next to no reason.
We are pretty good and then one event or one meal can cause an issue, it might be a flare, or it might be new symptoms (rash, histamine reactions, hair and nails etc etc)

my current pondering is, that once MC is active, it is almost like it has reprogrammed our immune systems. and from that point onwards no one can make sense of it anymore. the techniques and supplements that should fix it dont seem to work as they do for others that dont have MC.
All of these practitioners have other patients with digestion issues, immune issues, for majority of those patients routine type 'stock standard treatments and supplements' things improve quite quickly. which is why i am in the 'interesting' category.

as time allows i am going to do some more research...

Another point that most of them agree on, is the current medical system, and blood testing as a means of diagnos for various issues is sh*te.. two of them have questioned me about thyroid issues and my response is according the doctor (via blood tests) it is not an issue, my symptoms and what my body is telling them is saying otherwise

MBombardier · Post by **MBombardier** » Sun Apr 22, 2012 2:05 pm

I think you are on the right track. Gabes. Our immune system is in our GI tract (sort of? completely?) so MC reprogramming the immune system makes a lot of sense. One of the things that frustrates me so about the disease is the randomness of the symptoms.

I agree with you about the blood testing, too. For example, my Enterolab test results were worthless because they showed no reaction to anything when I react to pretty much everything. The IgA blood test showed my IgA was fine, at least according to standards. Maybe not for me.

The blood test for celiac is the same. Pretty worthless unless there is full-blown disease.

Then of course, there is thyroid. Tex says 53% of MC'ers have thyroid problems, and I would bet it is higher. There is more than one thread where I rant about treatment based on the blood tests and not the symptoms.

Ginny · Post by **Ginny** » Sun Apr 22, 2012 3:03 pm

Gabes, I think you have something:

my current pondering is, that once MC is active, it is almost like it has reprogrammed our immune systems. and from that point onwards no one can make sense of it anymore.

I was moving along quite nicely a year ago; 1 Entocort every 3 days and a little Imodium and then bam, out of no where a terrible relapse and I am still in it!! Although I have tried many diets and many meds or combination of meds, food eliminations etc., here I am, and probably a lot worse than I have been in two years except for I no longer have the every day nausea.

So how do we stop the cycle!! Among all the tests that I have been through, one thing does stand out, and that is I have no good bacteria and of course my lymphocytes are very low. How did that happen?? In order to improve, I do take 30 billion of a probiotic that is specifically directed to the good bacteria that I do not have. Of the diets, GAPS and Body Ecology recommend fermented foods to increase the capability to grow good bacteria, however, if we have a mast cell issue, this would play havoc on our system. It is really a Catch 22!

You are very smart and I would love for you to research and enlighten us of your findings.

Much love, Ginny

Lesley · Post by **Lesley** » Sun Apr 22, 2012 3:28 pm

So I am not alone in my confusion! I posted what is happening to me and why I am so bamboozled.

Maybe you, Gabes, will be the pioneer of this dastardly illness and set all of us on the road to recovery. It won't be the GIs!

Joefnh · Post by **Joefnh** » Sun Apr 22, 2012 3:34 pm

Gabes of note like you I almost never get colds or the flu. Come to think of it I never really have. Over the years though I have noticed that on the rare occasion I get a cold or flu, I really get sick with severe symptoms and then it might be 7 - 10 years until I get sick again. That's what's surprised me in developing MC and Crohns, before I knew better, I assumed my great immune system would have protected me from getting sick. In this cases it's that strong immune system that is causing the problem.

It does seem that a flare up is like a tipping point or hair trigger reaction, all it takes is just a bit too much of something.

Gabes-Apg · Post by **Gabes-Apg** » Sun Apr 22, 2012 4:29 pm

Lesley - i am in no way a pioneer... I am just following the path that was cleared by the originals and long termers of this condition.....

Ginny - i dont get the time (or the focus) to do as much research as I would like. (damn that having to work thing.....)

Given the rarety of MC (or should I say the rarety of correct diagnosis of MC and not calling it IBS) my thoughts to date have been based on the posts and threads of this board, the unique type reactions/issues people are having, the 'fragility' of stability, when you solve one issue another one appears.

Christine. · Post by **Christine.** » Sun Apr 22, 2012 5:46 pm

Gabes
You are so right! There don't seem to be any hard and fast rules for well-being with mc. True, there are rules for what will for sure cause a reaction but none for what will keep you on the straight remission road.

I've been wracking my brain for what I did yesterday that could cause less-than Norman and sleepy fog today. A few cashews...... Too little sleep? Who knows. I'm better now than I was this a.m. But what caused the dip?

For sure my immune system beats to its own drum. I don't get sick with common bugs often either but I'm constantly working to keep the digestive system happy.
Chris

jmayk8 · Post by **jmayk8** » Sun Apr 22, 2012 5:53 pm

I dont get sick either! No colds, no flu, no stomach bugs!

desertrat · Post by **desertrat** » Sun Apr 22, 2012 6:28 pm

Weird. Neither do I.

Mandy

brandy · Post by **brandy** » Sun Apr 22, 2012 6:48 pm

Ditto, no colds or flu or stomach bugs in the last 20 years. Brandy

Deanna in CO · Post by **Deanna in CO** » Sun Apr 22, 2012 6:58 pm

Well, I wish I could say that. I will say that until MC (actually even with the gradually worsening chronic D for 10 years), I've considered myself a relatively healthy person, but I do get sick - a cold or two a year. I've had chronic sinus infections fairly often too, and trouble with my asthma when I do get sick. I think I've only had the flu once in the past 10 years, and a stomach bug every once in a while (not often).

I don't consider myself healthy these days. Somewhere along the line, since I started the diet, it occurred to me that healthy people don't have chronic D (!).

Deanna

kristinef · Post by **kristinef** » Sun Apr 22, 2012 10:50 pm

I'm with Deanna, I seem to get colds and flu ect a couple of times a year.

I have LC as opposed to CC. Does that make a difference in the involvement of the immune system? I read here recently that people with CC have more difficulty weaning off of Entocort. What other differences are there?

marihabs · Post by **marihabs** » Sun Apr 22, 2012 11:25 pm

Hmmm...interesting topic. I don't get sick that often...maybe one nasty cold in a year, no flu, and a stomach bug every once in a while..with years in between. Perhaps it indicates a unique immune system...and who would know - you don't get that all checked if you aren't sick or feeling poorly, right?
(late night mind wandering)

Mary

Gabes-Apg · Post by **Gabes-Apg** » Mon Apr 23, 2012 1:25 am

Kristine - I too am a LC'er. I have never had Entocort.

technically my MC is in remission (scope results in August last year) but since then i have had teeth issues, serious histamine issues, migraine and kidney issues, i react to things like eating at a different time or not having enough protein, but still according to 4 different practitioners my immune system is not happy, and the inflammation rate is quite high. to the extent that for a recent papsmear i had to speak to a specialist as they were concerned at the mucus/inflammation level on the sample. they asked me was i having chronic MC conditions at the time of the sample and I said no.

as i did ponder this and wondered how i could come up with a conclusion, part of my 'dilemna' that if i wanted to review the forum members, ie the ones that have niggling issues, its not just how many are LC versus CC. there are many other important factors to this how many other auto immune conditions do each of us and is that an influence? what other medical conditions do they have that can impact the adrenals and/or inflammation?? what medications are we taking? and of course, how long have each of us had MC and in that time how long was it chronic, average, good. (ie how long was the inflammation really bad)

Long story short, there are alot of factors that would make it difficult to come up with a 'one size fits all' result. my pondering was more an idea (that probably cant really be scientifically proven) for those having ongoing symptoms and issues, and those having new symptoms appearing, as to what maybe causing them.
they may not be having any MC symptoms, but they are still having immune/inflammation reactions.

looking at the posts on the board, we are not having ongoing colds, or coughs that dont go away like most people with immune system issues. in my case it is almost like the 'immune attackers' are moving around my body, as i solve one issue they move on to somethng else and cause different symptoms, as i deal with that one, they move again (in my head i am picturing the movie alien when signorey weaver gives birth..... :worm:

)

Zizzle · Post by **Zizzle** » Mon Apr 23, 2012 8:33 am

I never get sick either, although I grew up moving overseas, so frequent stomach bugs. In fact, I haven't taken any medications of any kind (besides Pepto and a few Immodium), since the birth of my daughter 5 years ago (and I only had ibuprofen for post-partum pain). Before that, my only med was antibiotics for mastitis after the birth of my son 7 years ago! Of course those antibiotics may have been the trigger...

My LC is also "in remission," in that the GI symptoms don't really bother me, I usually go only 1/day, mostly normans. But my immune system is on high alert based on bloodwork. It seems my autoimmune activity is not tied to my GI symptoms.