MRT The Second Time Around

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

Kari
Rockhopper Penguin
Rockhopper Penguin
Posts: 1346
Joined: Sun Sep 05, 2010 4:26 pm
Location: Colorado

MRT The Second Time Around

Post by Kari »

Hi PP Friends,

I should have posted this much earlier, but I have had problems with the keyboard on my laptop, and have also been dealing with low energy and low grade depression.

Anyhow, a while after getting my colonoscopy done last year, I decided to do a second MRT test, as it had been 3 years since my first one. After dropping all the high green, yellow and red food from my diet the first time around, I had incredible success and was feeling better and better, culminating in BM's being very close to perfect normans. Then symptoms started coming back.

A colonoscopy last fall left me with a diagnosis of Mastocytic Enterocolitis, along with resolution of the LC markers. Since then I have tried different things, like antihistamines, cromolyn sodium, a grain free diet, etc., but with only short lived improvement in symptoms. I should say that my primary symptoms are varying degrees of soft BM's 2-3 times a day and lack of energy.

Getting back to MRT - I was so hopeful when I got my results, and thought that this time I would get my diet under control once and for all. So like the first time, I dropped all the high greens, all yellows and all reds. However, instead of a rendez-vous with norman, I had a rendez-vous with WD with shredded food :newshocked: .

Since the results showed that practically all the food I had been eating since my last test, was now either high yellow or red, I had to change my diet completely. Naively, I thought that since it worked so beautifully the first time, it would work just as nicely this time. However, my body obviously did not agree, so I had to slow way down on the changes to figure out my new, relatively safe diet.

Regarding the test results, the first time around, I had 10 red and 23 yellow; the second time I had 8 red and 14 yellow, so at least there was a decrease in reactive foods.

The staple foods I had been eating from the first test where tilapia, crab, chicken, pork, beef, rice, avocado, yellow squash, cucumber, broccoli, cauliflower, raspberry, ginger, black pepper. All of these, with the exception of pork, beef, broccoli and cauliflower were now high yellow or red!!!

This goes to show, at least for me, that I can never allow myself to think that I have "nailed down" my perfectly safe diet, as intolerances keep changing. It also tells me to take a rotation diet very seriously, to decrease the chances of developing new sensitivities.

This post should have been made on the MRT board, but since most people seem to only come to the main message board, I thought it was better to post it here. Tex - pls feel free to move it any time you deem appropriate.

Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
User avatar
tex
Site Admin
Site Admin
Posts: 35072
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Hi Kari,

Since I believe that you're correct, that more members will read it here, let's just leave it here, at least for a while. We can always move the thread later.

Your test results are not surprising, since MRT results are not necessarily repeatable, and they definitely tend to change over time. But there's something else at play here, that trumps everything else, IMO.

In my mind, the key here is the driving force behind your reactions, namely mastocytic enterocolitis. ME is definitely a different kind of cat (as they say), and IMO it doesn't play by the rules with which we are familiar. In fact, I'm not sure that anyone in the world truly and accurately knows what those rules might be. I'm just guessing here, but I have a hunch that since inflammatory criteria can change so drastically from one day to the next, when mast cell activity is the dominant influence, there is a good chance that MRT results might change just as dramatically, over relatively short time periods, for ME patients. But remember, I'm just guessing, and thinking out loud here, so I could be all wet.

LC is driven by T-cell reactions, and T-cell modulated reactions are relatively stable, in comparison with mast cell modulated reactions. IOW, with LC, our body is confronted by the same basic pattern of inflammation, day after day, and though changes may occur, those changes tend to come relatively slowly. With ME, the inflammatory pattern can change much more dramatically, and it can do so literally at the drop of a hat. We can experience mast cell reactions with LC of course, but when ME is present, the potential is so much greater, because of the higher population of mast cells.

I wish that there were much more extensive research data available for ME, but I'm not aware of much work that has been done to explore this issue, especially with regard to it's MC effects. I have a hunch that this area of research will soon escalate, out of necessity, as doctors slowly begin to realize that they know virtually nothing about dealing with ME, and it's unique characteristics.

I apologize for writing such a lengthy post, without actually saying anything substantive. :sigh:

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.
alcyone
Adélie Penguin
Adélie Penguin
Posts: 52
Joined: Sun Feb 02, 2014 1:59 pm
Location: Texas

Post by alcyone »

Hi, Kari!

I am so sorry you are going through this frustration. I can definitely relate - though I haven't done any MRT testing, I have found that certain things I always relied on as safe in the past don't necessarily stay that way. Please forgive me if I just repeat a lot of things that you already know, or have tried - I haven't been with the group long and I'm not familiar with your history, but I wanted to pass along some of what I've learned in my own journey, since I also have Mastocytic Enterocolitis.

I was first diagnosed in 2007 and had very little guidance. I was prescribed zyrtec and zantac first, but they disagreed with my heart, so I was switched to famotidine (Pepcid), 20mg pills twice a day. When that wasn't enough I tried the cromolyn sodium, but that didn't agree with my heart either. Then my doctor bumped me up to 40mg of famotidine twice a day and I finally got some relief and was even able to slowly gain back 10 pounds (after a loss of 38). I couldn't quite make it to remission, and the fatigue was just unbelievable, but I was in much better shape overall. I do want to say that back then I didn't know to try giving up gluten or soy, so maybe if I had it would have taken me all the way there. Pregnancy is what finally did it for me (not that I'm advocating that as a solution, haha). I have read something about the placenta increasing the production of DAO (a chemical in our body that mops up excess histamine) and I think that's why my pregnancies helped me so much. I had two children almost back to back and felt great until about a year after my second son was born.

The new round started with a parade of odd neurological symptoms, depression, anxiety, insomnia, major fatigue, brain fog, joint pains and migraines. Last October the GI symptoms finally returned with a bang. I went back on the 20mg of famotidine (along with a probiotic that doesn't really help my gut), dropped a ton of stuff out of my diet and started learning all I could about mast cells. That led me to pay close attention to the histamine content of my food and to start taking a 500mg capsule of Ester-C every day. I learned from a mastocytosis group that vitamin C help prevent mast cells from degranulating and can increase our DAO production, but you have to keep the dose below 750mg or it can actually make things worse. I typically have a lot of trouble finding supplements (or medicines, for that matter) that I can tolerate, but I have done very well with the Ester-C and it has definitely helped. My bottle says it is free of gluten, yeast, milk, soy, egg, corn and several other things, so it's a pretty good match for people with multiple sensitivities. I was coasting pretty well with all of that until Christmas, then had a major downturn after picking up a stomach virus, but then I found you guys and started learning about some additional diet changes I needed to try. I have been gluten and soy free (in addition to already being dairy and egg free) for about a month now and am feeling so much better than I was. I think I still need some minor tinkering, but I am definitely going uphill now instead of down.

So I guess if I were in your shoes (and I certainly have been) I would make sure to look at every food I'm eating from a histamine standpoint to be sure I'm not overloading my system, carefully try some vitamin C if you haven't already and, as a last resort, look into whether you are taking enough of your H2 blocker. I really needed that extra boost of antihistamine the first time around. Also, and this is probably the most important of all, how are you managing your stress level? I react just as strongly to stress as I do if I eat an off-limits food, and I know that what caused all of this for me in the first place was forcing myself to "push through" a highly stressful situation for way too long.

Wishing you the best!
Erin
Kari
Rockhopper Penguin
Rockhopper Penguin
Posts: 1346
Joined: Sun Sep 05, 2010 4:26 pm
Location: Colorado

Post by Kari »

Tex - what you're thinking makes a lot of sense to me. As far as I'm concerned, I cured my LC with diet, as proven with my last colonoscopy. I was doing so well for a while, but then the mast cells kicked in and things have been unstable ever since. Thanks for putting on your thinking cap and coming up with a very plausible theory - it makes me feel better.

Erin - thank you so much for taking the time to write such a comprehensive post about your journey with ME, it truly helps to hear about other's experiences. I know about the histamine connection, so I have a chart that I consult in terms of the histamine content of the foods I eat. I have also had success with Vitamin C, but had to drop it when I figured out that it increased my A1C. I have never heard about Famotidine, so I'm curious about that. I don't seem to tolerate any of the H1 and H2 blockers, so those are out for me. And yes, stress is a giant factor. I lost my dear sister last year and had to travel to Norway to spend time with my grief struck niece. Also, I took a job as a yoga instructor, which brought along "good" stress. I have learned that the body doesn't know the difference between good and bad stress, so I had to let go of that endeavor for now :(. So fortunately, I am currently in a low stress situation - I'm retired and can focus my energies on healing. Thanks again for your post, and best of luck to you as you continue finding your way back to radiant health.

Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Pat
Rockhopper Penguin
Rockhopper Penguin
Posts: 1068
Joined: Fri Nov 17, 2006 2:41 pm
Location: Texas

Post by Pat »

Kari,

You may want to check your cortisol levels with a saliva test. Hypothyroid can cause fatigue and depression but so can adrenal fatigue.

Pat
alcyone
Adélie Penguin
Adélie Penguin
Posts: 52
Joined: Sun Feb 02, 2014 1:59 pm
Location: Texas

Post by alcyone »

Famotidine is the generic form of Pepcid - it is an H2 blocker, but it is the only one I tolerate. I have noticed that I do better with certain brands than others, so I assume that is due to subtle differences in the inactive ingredients.

Maybe Tex is right, that the research on ME will ramp up in the near future and some other options will open up. Of course, the problem there is that our doctors will just have some new pills to throw at us. I'd much rather work it out with diet and the support of this great group of people.
Leah
King Penguin
King Penguin
Posts: 2533
Joined: Thu Feb 02, 2012 10:16 pm
Location: San Francisco Bay Area

Post by Leah »

So sorry to hear you are having such issues Kari!
I wish I had something to add, but since you don't tolerate antihistamines…. that's what I would do is bump up the antihistamines to see if you could knock down some of the inflammation. I also have mast cell issues, but certainly not to the degree you do.I didn't know about the vitamin C, but will consider taking it now. Do you make sure that you don't eat leftovers?
Sorry, that's about all I have.
I truly hope you figure this out soon.
Leah
User avatar
tex
Site Admin
Site Admin
Posts: 35072
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Kari wrote:I have learned that the body doesn't know the difference between good and bad stress
Excellent, excellent, excellent observation. I had never even considered that possibility, but I truly believe that you are right on target.

One reason why it seems intuitive (now that you've pointed it out), is due to the fact that try as I might, I'm unable to visualize a situation in a paleo setting, where the concept of "good" stress would even be possible, let alone likely. Clearly, we evolved in an environment where stress was always adverse, because it was always associated with a major risk of life or limb. "Good" stress did not exist, so it's no wonder that the body's default response to chronic stress evolved to be bad for health.

I have no way of knowing if this discovery will lead to your eventually being awarded a Nobel Prize in Physiology or Medicine, :wink: but surely, the observation that "the body doesn't know the difference between good and bad stress" will come to be known as Kari's First Rule of Stress. :thumbsup:

Thank you for contributing to my science education.

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
Gabes-Apg
Emperor Penguin
Emperor Penguin
Posts: 8332
Joined: Mon Dec 21, 2009 3:12 pm
Location: Hunter Valley NSW Australia

Post by Gabes-Apg »

Kari,

High doses of Vit C will act as an antihistamine,

http://histamino.wordpress.com/2010/02/ ... tolerance/
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
User avatar
tex
Site Admin
Site Admin
Posts: 35072
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Kari,

Back to the issue at hand: Maybe there is an unconventional antihistamine that you can tolerate. This has come up before, but amitriptyline, for example, is about 200 times as potent as Benadryl. And doxepin hydrocholeride is 800 times as potent as Benadryl.

And then there is meclizine (Dramamine).

Actually, the lists of various types of antihistamines include a heck of a lot of medications. Maybe you can spot something of interest in the lists on Wikipedia, for example:

http://en.wikipedia.org/wiki/Histamine_antagonist

There is also the possibility that an H4 type antihistamine might be helpful. But these are relatively uncharted waters. :shrug:

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.
Kari
Rockhopper Penguin
Rockhopper Penguin
Posts: 1346
Joined: Sun Sep 05, 2010 4:26 pm
Location: Colorado

Post by Kari »

HAHAHAHA :lol: - you made my morning bright and cheerful with that post Tex :) - it's a long time since I've been laughing out loud while all by myself :). Wish I could take credit for that concept, but it's something I learned during my psych studies in college, and it has stuck with me ever since.

Pat, Leah, Erin and Gabes - thanks for your notes and suggestions.

Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Sheila
Rockhopper Penguin
Rockhopper Penguin
Posts: 1150
Joined: Wed May 18, 2011 5:10 am
Location: Palm Beach Gardens, Fl

Post by Sheila »

Hi Kari, Sorry to hear about your new diagnosis and food issues. So, even though your LC has cleared, you are just as sick as you were but with ME. I'm not surprised to hear about the changeable MRT results. I think that has happened to me as well. Food that was perfectly safe is now questionable and my food diary is just plain confusing. It's been about 3 years since diagnosis and 2 1/2 yrs GF, SF, DF, EF diet, 2 years on budesinide. I hoped the inflammation would be resolved by now and I could safely stop budesinide. Obviously, something is going on and it isn't good. I haven't rotated foods properly because I don't have enough variety in the food I can eat to do so.

The last thing I want to do is have another colonoscopy but it might be worthwhile to find out what has happened with my CC. I hate having WD again, feeling crummy for at least half the day and going hungry because I have no idea what to eat. I do have a very stressful situation going on in my family and that doesn't help.

I hope you can get your situation under control. Your observation re stress is so right on. I would prefer some good stress as opposed to the other kind.

People know so little about MC and related disorders. Perhaps we could start something similar to Race For The Cure and call it Race To The Toilet. Sounds funny, but it is really sad.

Sheila W
To get something you never had, you have to do something you never did.

A person who never made a mistake never tried something new. Einstein
User avatar
tex
Site Admin
Site Admin
Posts: 35072
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Sheila,

The stressful situation that your family is going through could be the cause of your symptoms.

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.
Kari
Rockhopper Penguin
Rockhopper Penguin
Posts: 1346
Joined: Sun Sep 05, 2010 4:26 pm
Location: Colorado

Post by Kari »

Hi Sheila,

Thanks for your note. Yes, dealing with ME is pretty much the same as LC, except I have to watch the histamine content in the food I eat very carefully. So, eating the tolerated foods is key to healing. Antihistamines would help, but unfortunately I have not found one that I can tolerate. With the exception of thyroid hormone, I don't take anything else.

I have been following your progress with weaning off Budesonide and really feel for what you're going through. Your desire to get off it for good is certainly understandable. I have been tempted to try it many times when I have felt at my worst, but then I think that it would just add more complexity to what I'm dealing with. The worst part of this for me is that, like you, I'm almost afraid to eat :(. I'm underweight according to weight tables, and have been losing again lately :(.

You gave me a good laugh with your comment about "Race to the Toilet" :lol: . Sometimes I think that keeping a sense of humor is all important. "Laughter is the best medicine" resonates very strongly with me:).

I hope your stressful family situation gets resolved soon :xfingers: .

Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Polly
Moderator
Moderator
Posts: 5185
Joined: Wed May 25, 2005 3:34 am
Location: Maryland

Post by Polly »

Good morning!

My, what an interesting and enlightening thread! Although, of course, I am sorry to hear about Sheila's and Kari's continuing problems. This thread is a perfect example of my observation that I learn something new from my PP buddies almost every time I come here. Kari/Tex, I LOVE your "First Rule of Stress"!

I have not had a repeat MRT since my original one 3 years ago, mainly because it is my impression that my red/yellow foods have, for the most past, stayed the same (as have the green or safe foods). I have LC, and like Kari, I had a negative repeat biopsy on colonoscopy - but it was 10 years after diagnosis, not 5 as was Kari's case. I also don't think I have a major histamine sensitivity, although I know there are times when I "exceed" my histamine safe level and antihistamines help. I take them on an as needed basis, not regularly.

Do you think that LC/CC/MC are a continuum? That we can shift between them? I am wondering if all MCers need to insist on the test for ME whenever we have a colonoscopy. Also, I am intrigued by the difference in the reactions we experience due to the different cell types. I am wondering if mast cells proliferate or kick in more because of stress. I know that my reaction to stress has always been immediate, which would seem to implicate mast cells I think. I can hear something stressful and immediately develop watery D (and I mean within a minute or two) - even with longterm perfect BMs. I used to think it was all an issue of motility - that somehow the stress immediately speeded up the gut contractions. But now I am wondering about mast cells and other mechanisms.

You've got me thinking!

Love,

Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Post Reply

Return to “Main Message Board”