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ObsessedMrFixit
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Introduction, new member

Post by ObsessedMrFixit »

Hello everyone,

I'm new here. I joined because, well, I was diagnosed with LC a few months ago. I've been dealing with it for a couple years now, and it's been an insane couple of years. From what I've read, you all have some pretty insane times, yourselves.

I ordered Tex's book and read it. I must say, it agrees with most of the conclusions I've already drawn in my own research. Like you, Tex, i have done many, many hours of research, trying to figure out what's really wrong with me. I don't agree with everything you wrote, but most of it is sound, and makes sense. I just wish my GI doc would read it, and open his mind to the idea that diet can influence digestive health.

Let me add a couple statistics to your database, if I could. My LC was most definitely triggered by stress. An absolutely huge amount of stress. My body dealt with that stress for about a year before it gave out, and I started exhibiting food intolerance symptoms. First, it was dairy. Then eggs. Then nuts. Then apples. I slowly removed more and more food from my diet. At this point (a year and a half later), I'm eating only meat and a few veggies. One interesting thing to add to the tribal knowledge here: while my IEL levels may be increased by cruciferous vegetables, if I gave them up, I would have only I carrots to eat. So, I eat what my body can handle.

I'm finally at a stable point now. Most days are pain free, and I know what i can eat. Life is, at least, mostly predictable. But I still am holding out for a cure. I'm actually gearing up to try FMT (fecal transplant). I think I read that Ginny tried it. I wasn't able to find her final results, though. If anyone knows how things turned out, I'd be curious to know, myself.

Well, that's the short version of me. I'm grateful for all the things I've learned from this group, and especially glad that this group exists. I definitely need the help and support.
-marcus
P.s. about my username: I picked that because it describes me in relation to my disease. And I think my wife would agree with the description.
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Post by Zizzle »

:welcome:
You have come to the right place. Lots of people here getting along with diet alone, some with meds, and yes, one fecal transplant so far. Wish I knew her results too...
I'm curious, do you consider yourself to be on a strict gluten free diet? If so, were you on the diet before you came across this group and Tex's book?
And what are IEL levels? I remember a discussion a while back about cruciferous vegetables, whether they help or hurt. I chose to keep eating them...in high quantities! :grin: Hope that's not a mistake.

Welcome to the Potty People family.
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Post by Polly »

Hi Marcus (Mr. F.) and :welcome:

I can relate to the research issue. I was the first one here many years ago to discover that I had multiple sensitivities. I spent endless hours on the computer trying to learn what was wrong with me. Like you, I am controlling my MC with diet alone. And also like you, stress is a huge factor for me.

I am hopeful for a cure one day, too. I'll be most interested to learn of your experience with fecal transplant, if you decide to go ahead with it.

BTW, the main veggies I eat are the cruciferous ones. I believe they provide the biggest nutritional bang for the buck.

In light of all of your research, I am curious to know what have you concluded to be the etiology of our disease? And any other thoughts you have picked up.

Best,

Polly
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Post by CathyMe. »

Welcome! Glad to read about your journey and what you've found has helped you. IMHO, my LC was also caused by a great deal of stress. I dealt with shingles approximately 3 years ago and began having symptoms shortly thereafter. I'd be curious to know if you're gluten free as well. I am, in addition to dairy, soy, sugar, corn, and some other things. I am handling my symptoms @ this point with just diet, although my GI would love to have me continue to take a steroid (budesonide)and an anti-inflammatory drug (Lialda) and refuses to believe diet alone can help. I'd love to hear more regarding the fecal transplant. There is also a member who was going to try whipworms for treatment.
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Post by tex »

Hi Marcus,

Welcome to the group. Regarding the cruciferous vegetables, I simply reported the data shown by a recent research study. As you are probably well aware, many/most research conclusions are typically based on relatively small differences in the quantities being compared. So while I have no doubt that there is a measurable effect, it's very likely that the influence of cruciferous vegegtables on IEL numbers may well be relatively insignificant in comparison with the IEL excursions caused by the inflammation that is associated with MC.

Regarding The fecal transplant treatments that Ginny tried, according to her posts, her first attempt was a failure. She mentioned that she might make another attempt, but since she never posted about any results, apparently she either didn't make another attempt, or if she did, it was also a failure.

Again, welcome aboard, and please feel free to ask anything.

Tex (Wayne)
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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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Post by ObsessedMrFixit »

Hello again,

Yes, I am gluten-free. In fact, I am grain-free. My ND and I decided to put me on SCD diet about 8 months ago (before my LC diagnosis, when I was still a mystery). But I'm on an even more-restricted diet than SCD, really, since I cannot eat some of the fundamental foods of that diet: eggs, fermented dairy, and nuts. So, all I eat is meat, cruciferous veggies, carrots, onions, shrooms, and herbs. What's interesting is that, before I went on SCD, I could eat wheat bread, peanut butter, and a bunch of other foods. Going on SCD actually started some chain of events whereby I lost more foods (I reacted to more of them), notably nightshades. In reading Tex's book, I get the idea that I might've been able to eat wheat, but it was probably destroying my gut. Though, I did have a stool test that showed my sIgA was normal, and no anti-gliadin, so we concluded I had no issues with wheat.

The etiology of the disease....hmmm. Well, first off, I wish I didn't actually know such words. I know far more about medicine and digestion than I ever thought I would. Before reading Tex's book, I wasn't much aware of mast cells, degranulation, and the potential role mast cells play in "autoimmune diseases". But, anyway, my short answer is "don't know". If I could devote full-time to researching, I would probably have an opinion on this, but I already have two full-time jobs (career, and "dad"). Slightly longer answer is that stress, for me, was the straw the broke the camel's back. I think, for me, it was a slowly evolving process. I would describe it as a vicious cycle, slowly (over the course of a year) spiraling downward, involving stress, altered gut bacteria, too much sugar in my diet (I LOOOOOVE chocolate!), low vitamin D...I could probably go on, but won't. I think Tex has all the major points in his book.

Now, I'm just waiting for research to reveal enough about digestion and immunity to suggest a route, or several routes, of treatment and cure. FT/FMT is one such route. I know I had altered gut flora because I had a stool test showing I had very very low levels of gut flora. It's been partly rebuilt, but not entirely. I'm hoping FMT will give that process a boost, such that I can eat more foods.

Is there really only one person in this group who's tried FT/FMT? I guess I'm a bit surprised, given that some members here have been dealing with this disease for a much longer period of time than I have. Or perhaps I'm too optimistic about FMT. I know there's a very real possibility that it will not work. And I will be very disappointed if it does not. But, if it can give me more foods, and make our life a little easier, I am compelled to try it. Lots of people out there in the world (in other internet discussion groups) are much much more skeptical of FMT than I am, saying that there are just as many cases where it doesn't work as where it does. But I'm not able to find many cases where it doesn't work; I've found two so far, and found many more where it has worked. If anyone can point me to failed cases, I'd love to read up on them.

One last question: is there a place where spouses of MC people can go for support? This is just as hard on my wife (emotionally, mentally) as it is on me.

-marcus
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Post by tex »

Marcus,

I apologize for raining on your parade, but here is the problem with fecal transplants: In order for them to bring remission from any medical issue, the cause of the problem must involve a major gut bacteria imbalance issue. I'll grant you, most of us have gut bacteria imbalance issues when we are reacting, but that doesn't necessarily mean that the gut bacteria variances are the cause of the original problem. I suspect that in most cases, the excursions in gut bacteria populations are a result of MC, not a cause of it.

Just changing our diet (in any way), will change gut bacteria population balances, but that has nothing to do with disease. Bacteria always respond to diet changes, and they also respond to digestion problems, since digestion problems (such as poor digestion) obviously benefit a different set of bacteria than those that thrive on a normal diet with normal digestion.

And unfortunately, restoring a bacterial population that corresponds to a normal diet (with normal digestion), to a digestive system that is compromised, and processing a limited set of foods, is not going to force the compromised digestive system to straighten out and fly right. That's self-evident, because gut bacteria populations are driven by diet and digestion effectiveness, not the other way around.

Am I right, or am I overlooking something major here? Fecal transplants are great for treating C. diff infections. For refractive cases of C. diff, they're the only game in town, as far as I can tell. For treating MC however, not so much, because MC is not typically the result of a gut bacterial overgrowth or imbalance.
Marcus wrote:One last question: is there a place where spouses of MC people can go for support? This is just as hard on my wife (emotionally, mentally) as it is on me.
This board is probably as good a place as any, since they are not likely to find anyone who correctly understands the disease anywhere else. Quite a few family members/spouses have posted here before, in order to gain a better understanding of the disease, and I'm sure that many read the posts here, even if they don't register. If you think it would be helpful to have a separate forum for that purpose, I can certainly set one up.

Tex
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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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Post by ObsessedMrFixit »

I suspect that in most cases, the excursions in gut bacteria populations are a result of MC, not a cause of it.
I guess I should have mentioned, that before I was symptomatic, and before I had the life-threatening stress (my son's life, not mine), I was on anti-biotics every other year for about 10 years. Sometimes more than once a year. So, in my case, I have strong reason to believe that a bacterial imbalance came before MC. Hence my belief, and motivation, in FMT as a possible treatment, or perhaps even cure, for myself.
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Post by tlras »

Welcome Marcus,

I can definitely see where a combination of stress and lots of antibiotics can definitely bring on MC. I had constant emotional stress along with a Generalized Anxiety Disorder which over the years started weighing me down. I started noticing stomach issues a few years ago just attributing it to a nervous stomach. It wasn't until my Cardio doctor put me on Beta blockers in March that the D occurred. It just added fuel to the fire within me I suppose. The only way I could deal with the stress was to binge on sugar and that's what I did for a long time. I would eat it until I got nauseous. And a lot of it was chocolate! I also believe my high inflammatory diet also contributed to this disease. I did find my new diet of low sugar, gluten and dairy free to be a little stressful and then of course, I'd want to binge on junk food, only I couldn't. So it's been a little rough. Right now, I'm going through a little emotional stress and it's taking all the power within me not to grab the huge sugar cookies (DF/GF, of course) out of my freezer and just binge on them. But I know that will only set me back. I've had to find other ways to cope with the stress and so far so good as I'm now currently med-free and want to stay that way.

It sounds like you are doing well though? I think it's great that you can manage it well without medication. And good luck if you decide on the FMT. Keep us updated.

Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
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Post by Zizzle »

Marcus,
I also have strong reason to believe a bacterial imbalance came before my MC. I grew up moving around overseas and had LOTS of GI infections. As a teen back in the US, I took lots of antibiotics. After my first pregnancy, lots more antibiotics. BUT, there is a theory in IBD that our immune system is reacting to a particular bacteria in our gut. Like we are waging battle with a permanent resident, such as a particular strain of e.coli (even a friendly non-pathogenic kind), perhaps one that has developed biofilms to protect itself from our defenses. That's why many here can achieve brief remission while taking certain antibiotics, while others have major flares on other antibiotics. I suppose the antibiotics that kill the offending bug are the ones that fix us up temporarily, until that bacterial population grows back.

So while a fecal transplant may add some beneficial bacteria, I'm not sure it can ever rid us completely of the offending organism we're battling. Maybe crowd them out somewhat, but never eliminate them completely, so the battle wages on....

Although...it seems to erradicate c.diff, no? Now I'm confused. :headscratch:

Just one theory :pigtail:
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Post by tex »

Zizzle wrote:Although...it seems to erradicate c.diff, no? Now I'm confused. :headscratch:
That's because C. diff is a bacterial infection. The old theory that MC is caused by a reaction against gut bacteria was proposed many years ago, for want of a better proposal. If it were true, someone should have found at least an inkling of substantiating data by now. It's not impossible that it might be valid for a handful of cases, but for the vast majority of cases, it simply does not apply.

The same claims (that the disease is caused by a bacterial infection/imbalance) have been proposed as a possible cause of the other IBDs. Crohn's disease and UC have been around for a long time. If the treatment had any merit, why hasn't it been used to "cure" those diseases? :shrug:

Tex
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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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Post by Leah »

Welcome Marcus.
I see that you are very pro-active. It's great to see people take control. Did I read correctly that you've only been Dx with MC for a few months now? I can tell that you are very anxious to try this fecal implant, but Is it possible that you just need to stay on this course and chill for a while? I mean, it takes A LOT of time for the gut to heal. I think Tex said it took him three years. I'm almost at a year and I was able to start adding certain foods back in in small amounts a few months ago. I know that this disease is frustrating and sometimes gets me so down, I just want to cry, but I'd hate to see you get your hopes up for a cure only to be very disappointed.

If you do do it, please let us know how it goes.

Leah
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Post by Polly »

Tex,

I am confused about your comment that MC is not usually the result of a reaction against gut bacteria. I thought it was. And I believe Dr. Fine does too - here is an exerpt from his website:

What is the cause of Microscopic Colitis?"Extensive data from animals (mainly rodents) suggest that any form of colitis is the result of the body's immune system setting up an unusual attack on the bacteria living in the colon. What makes the body suddenly recognize these bacteria as harmful and worthy of this attack is not fully understood but there are several clues based on my research. First, it is known that aspirin and other non-steroidal antiinflammatory drugs (NSAID's) can cause this reaction. Also, if the balance of less immune stimulating bacteria (we will call "good bacteria") and more immunostimulatory bacteria ("bad bacteria") favors the latter, inflammation can result. This can occur from use of antibiotics and probably from chronic consumption of certain foods that favor growth of bad bacteria. The role of yeast (for example Candida) in this process is unstudied and therefore unknown. However, whatever tips the scale toward this reaction, it appears that there is an underlying gene responsible for the predisposition to have this form of colitis. In fact, my recent studies have revealed in most cases, the gene is the same as the one known to cause celiac sprue and gluten sensitivity (explaining why some patients get both syndromes). Furthermore, it appears that colitis can cause the immune system to begin recognizing gluten as immunostimulatory and vice versa, gluten sensitivity can lead to colitis."

Perhaps I am misinterpreting what you are saying?

As you know, I believe that antibiotics screwed up my gut bacteria and set everything in motion.

Love,

Polly
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Post by tex »

Hi Polly,

I once believed what he said in that paragraph also, but if you look at what he said, there's no substance there. He says:
Dr. Fine wrote:Extensive data from animals (mainly rodents) suggest that any form of colitis is the result of the body's immune system setting up an unusual attack on the bacteria living in the colon.
What extensive data? I've never seen any. Have you? First of all, most research projects that set out to study colitis and it's treatments, don't use gut bacteria to create the colitis. They use a caustic solution. That immediately disputes his claim that "any form of colitis is the result of the body's immune system setting up an unusual attack on the bacteria living in the colon". He pulled that claim out of the air, because obviously all colitis is not caused by gut bacteria. We've even seen that it can be caused by the cleanout solutions used prior to a colonoscopy procedure.

Then he says:
Dr. Fine wrote:What makes the body suddenly recognize these bacteria as harmful and worthy of this attack is not fully understood but there are several clues based on my research. First, it is known that aspirin and other non-steroidal antiinflammatory drugs (NSAID's) can cause this reaction. Also, if the balance of less immune stimulating bacteria (we will call "good bacteria") and more immunostimulatory bacteria ("bad bacteria") favors the latter, inflammation can result.
What does an adverse response to NSAIDs have to do with this? Probably nothing, because NSAIDs are not gut bacteria, nor are they antibiotics. So why did he bring them up? It's just obfuscation. In fact, when you think about that a bit, it's definitely counterintuitive that an anti-inflammatory drug should cause inflammation. Right? An anti-inflammatory drug is supposed to treat inflammation, not cause it. So that's a paradox at best. At any rate, this is a totally different phenomenon, so NSAIDs are irrelevant to the case that he was trying to make (that certain gut bacteria provoke an autoimmune response from the immune system).

His observation about the difference in the immune system response to "good bacteria", compared with its response to "bad bacteria" is certainly relevant, but it's just an interesting observation, because there is no supporting evidence that this is involved in the etiology of MC. There are many other agents that sometimes show up in food that are also immunostimulatory. Why aren't they implicated? Why choose gut bacteria? He mentions Candida in passing, but again, there's no data in the literature that establishes it's possible role.

The bottom line is, where's the evidence to support this theory? No researchers have ever provided any good solid evidence to substantiate it.

Did you read (carefully) the chapter in my book that describes my theory? I thought I provided plenty of references to support my claim that stress is the single essential ingredient in the etiology of MC. My theory is also still unproven, but at least I offered a substantial amount of supporting evidence in the form of research articles that verify my claims.

In your own case, for example, while it's certainly conceivable that the antibiotic that you feel caused your MC, might have provoked a subsequent major gut bacterial imbalance, you have no way of knowing that it was a reaction against gut bacteria that caused the disease. Consider that anytime we take a powerful antibiotic for weeks or months, it's bound to impose tremendous stress on the GI tract, as it continually wipes out bacterial populations, and they continually attempt to repopulate. And who knows what additional stresses antibiotics impose on various other organs of the body? The point is, antibiotics cause a huge amount of disruptive, chronic stress, that may be focused on our digestive system, or the stress may be systemic, but the fact that most antibiotic regimens typically last for a couple of weeks, means that it's chronic stress, so it qualifies for my theory of the etiology of MC.

IOW, I'm saying that antibiotics cause MC by creating a state of extensive (and often chronic) stress, rather than by causing a bacterial imbalance. Obviously any resulting bacterial imbalance is certainly not protective of MC, but IMO it's a secondary contributing factor, not a primary cause of the disease.

My point is that my stress theory can explain any and all known or proposed causes/triggers for MC. Stress is at the root of them all.

Or am I overlooking something major?

Love,

Tex
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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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Post by Zizzle »

Here's some food for thought. As I was researching the mechanism of action of Plaquenil, an anti-malarial, I came across new research that suggests Plaquenil helps stop chronic inflammation by inhibiting the communication between Toll-Like Receptors and Dendritic Cells, which usually work together to identify and eliminate INFECTIONS. Then again, further reading suggests self-molecules may be presented to the TLRs for activation...therefore not necessarily requiring a bacterial or viral invader. I'm so confused...
Recently a novel mechanism has been described wherein hydroxychloroquine inhibits stimulation of the toll-like receptor (TLR) 9 family receptors. TLRs are cellular receptors for microbial products that induce inflammatory responses through activation of the innate immune system
And here's the abstract that is based on:
The innate immune system in drosophila and mammals senses the invasion of microorganisms using the family of Toll receptors, stimulation of which initiates a range of host defense mechanisms. In drosophila antimicrobial responses rely on two signaling pathways: the Toll pathway and the IMD pathway. In mammals there are at least 10 members of the Toll-like receptor (TLR) family that recognize specific components conserved among microorganisms. Activation of the TLRs leads not only to the induction of inflammatory responses but also to the development of antigen-specific adaptive immunity. The TLR-induced inflammatory response is dependent on a common signaling pathway that is mediated by the adaptor molecule MyD88. However, there is evidence for additional pathways that mediate TLR ligand-specific biological responses.
http://www.annualreviews.org/doi/abs/10 ... de=immunol

Here's how TLRs may play a role in autoimmunity:
It is worth noting, however, that some TLRs (TLR4, for example) can be triggered by several structurally dissimilar PAMPs (pathogen-associated molecular patterns) and that TLRs appear to recognize molecular features of bacteria, fungi and viruses, but apparently not of multicellular parasites. TLRs are said to detect ‘microbial non-self’ because the PAMPs they detect are unlike molecular signatures of the host; TLR ligation therefore indicates the presence of an infection and initiates a signaling cascade that results in clearance of the microorganism. This obvious point is made here to emphasize that stimulation of TLRs in the absence of infection (i.e. via endogenous ligands) could result in the maturation of dendritic cells (DCs) presenting host peptides and the subsequent priming of T cells against self (autoimmunity). In support of this hypothesis, it was shown that B cells of autoimmune-prone mice can be activated via the inappropriate dual engagement of both the B-cell receptor and TLR9 [4..]. In this case, immune complexes containing chromatin are taken up by B cells and delivered to endosomes where they can activate TLR9. This interaction is clearly unintended and results in deleterious consequences.
http://fog.its.uiowa.edu/~immuno/classM ... n_2003.pdf
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