Metallic Tasting

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Polly
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Post by Polly »

Almost all of us found this website at some point after we had been diagnosed with MC. We came here bruised, battered, exhausted, scared, anxious, depressed, and embarrassed due to the suffering our disease causes. And how wonderful it was to find others who understand, who "get it" as Gabes always says! The SUPPORT that we offer each other is priceless. Of course, the knowledge that we gain here is equally important for healing, but we have to remember that the understanding and acceptance of this disease by an individual is a PROCESS. Not everyone is immediately ready to digest (pun intended!) and act upon the excellent (and often complicated) information available. It is an incredibly difficult disease to understand and treat. And isn't one of our standard sayings: "what works for one may not work for another"? Add to that our docs who tell us that food (especially gluten) has nothing to do with the disease, and the confusion is magnified.

Fiona, I believed the Board saved my life too. If it hadn't been for Sally Read and the others on the original Board, I probably wouldn't be alive today. Back then, we didn't have the years of collective wisdom here that we do now and that Tex has incorporated into his book. If those early folks had not told me about Dr. Fine and the gluten connection, I would never have known about it (and I am an MD). Do you want to know a sad irony? Sally was undoubtedly gluten sensitive. She tried the GF diet for a few months but had no luck (we didn't realize back then that it could take many months to see results or that some of us have multiple sensitivities) so she stopped it. She continued to eat gluten; her disease went downhill despite treatment with heavy-duty steroids and major immunosuppressants like Imuran, and she died in her 60s. Despite the fact that she was unable to be GF, she always encouraged me to avoid gluten. And I, in turn, was always supportive of her, even though I fervently wished that she would be able to eliminate the gluten. I guess my point is that we have to respect and support each other no matter what choices one makes. IMHO, support trumps all else on a Board such as this.

Okay, I'll hop down from my soapbox and hit the sack now. G'nite all.

Polly
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tex
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Post by tex »

Solisspirit,

No I don't have a grudge against you. If I did, I wouldn't have tried to help you by responding to so many of your posts in the past.

Please don't misunderstand me, I have always been willing to bend over backward to help anyone who seeks help here, and who seems willing to do their part to try to help themselves. No one spends more time here responding to questions than I do. If you look at my post count, you will see that it is closing in on 23,000 posts, and few of them are brief. And yes, as Polly pointed out, we tend to spend much of our time here answering the same questions over and over again for new members. That's not an issue. That's something that many of us do here, virtually every day.

Your attitude toward other members of this board (and possibly toward discussion and support boards in general) is the issue. For example, referring back to your original post in this thread, I would guess that if any of the vast majority of members of this board would have found themselves in that situation (not being sure of the chapter), they would have read it first, and if it didn't seem appropriate, afterward they would have asked about it. But you didn't even consider doing that. Instead, you chose to do the easiest thing that you could think of (that required the least amount of effort on your part), namely to ask if I sent you the correct chapter. That was sent way back in October. If I didn't get it right in October, I probably wouldn't know any better now, either. :lol: While I will freely admit that I am just as prone to making dumb mistakes as anyone else, would it really have been the end of the world if you had just gone ahead and read that chapter (or even the first few sentences from it) and then discovered that it was the wrong one? Probably not. But instead of doing that, you chose to read nothing, and ask me to recheck what I had done. Why does this matter? Because it's clear evidence that you are still (after 3-1/2 months) searching for an excuse to not read it. But please don't feel that you are obligated to read it.

If you really don't want to read it, why not just say so. That won't offend me. After all, it's no hide off my butt if you don't read it. I certainly wouldn't attempt to force anyone to read it. I just thought that it might be helpful for providing some insight that you probably can't get anywhere else.

Jon's, Lori's, and Fiona's original posts in this thread were right on target. As time has passed, it has become painfully clear that as Fiona pointed out, rather than to put out any effort yourself, you want us to do all the legwork, and hand feed you the condensed details, so that all you have to do is read the responses to your questions, apply them, and hopefully "cure your ills".

The first problem with this approach is that if every one of us did that, this board would truly suck. But here's why that approach is really not practical (nor is it legal, in the long run) on this discussion and support board:

That is the format used on medical forums (where answers to questions are provided by physicians). This is not a medical forum, where questions are fielded by doctors. We can't offer medical advice, because we're not doctors (well, most of us are not, anyway). Instead, we learn from each other by sharing our experiences, and by sharing the information that we find to be helpful. In the 8+ years of this board's existence, its database has grown to contain more practical information about understanding and treating MC than any other source of information about the disease in the world. That makes it a great source of information, but the information is only useful if someone reads it, and learns from it. You might be amazed at what you can learn by searching the archives.

Sure, we answer a lot of questions here, but there is a practical limit to how much of that we can do for any particular individual, without risking being accused of trying to practice medicine without a license, if that individual isn't willing to do most of his or her own reading and research. We can't hand feed you, at least not in the long run. We're here to help, but that help comes with the expectation that the focus of the help is to encourage you to learn more about the disease, and to help channel your reading and research in the right direction.

As Jon suggested, we can tell you how to control a symptom, but that will only help you to control that one symptom. If, instead, we can manage to teach you how to research digestive issues, and how to separate the valid information from the hype, then you should be able to figure out any digestive problem that might come along in the future, long after this board has faded into obsolescence and/or obscurity.

There is absolutely nothing wrong with asking questions. We all do it — it's one way we learn important information and insight. But in addition to asking questions, we learn so much more, if we read the research articles that are cited, responses to questions asked by other members in other threads, and various other forms of information that are available about the disease. Learning is not the exclusive territory of educational institutions. The most valuable information is always learned on the job, and/or in the school of hard knocks. If you were to attend and graduate from medical school, you probably would learn only a tiny fraction of 1 % of the practical information about microscopic colitis that can be found in the database of this discussion board. The information is there for any member willing to do the research.

I'm more than willing to help you in any way I can, and I'm sure that everyone else here is also willing, but that comes with an expectation that you do your part and start doing a lot more reading, rather than just asking questions and limiting your reading to those specific answers. There's so much more available here. It's a shame to not utilize such a valuable resource.

I hope I haven't just confused the issue here.

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 Polly »

Tex,

Back again - didn't jump into the sack yet. LOL.

It is becoming clear to me that the "rules" and tone of the Board must be changing. There is absolutely nothing that solispirit has said that would be offensive to me.........I went back and read all of the posts. And what in the world is this notion that a member has to be required to read something??? When have we ever told another member that they have to "do their part and start doing a lot more reading"? It was very kind of you to share the info, but I don't understand why you are so upset that it wasn't read in a timely fashion. If the same question is asked repeatedly, and you are frustrated by that, why not just ignore it and let others respond? I must be missing something here.

Fiona and Lori......thanks for your responses. I probably won't delete your original posts, because it appears that I may be the odd man out here. It seems that the Board is changing its emphasis....if at least 4 of you believe that members should be required to do reading so that the other members won't have to waste their time. WHAT???? This is so different from the way I thought we operated i.e reassuring people that "there is no such thing as a dumb question", being totally supportive, etc.

Actually, this thread has been a revelation to me. And not a happy one.

Polly
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Post by gluten »

Hi, I have read hundreds of research reports about MC and MD. Now, I use the "search" option first, that is available on this site to look up words about MC. I find it more useful from a person that has the same issues than from most medical professionals who have no clue. Jon
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Post by maestraz »

ARGHHHHH. I've been following this thread, and trying to tamp down my impulse to respond, but finally I can't. Polly, you are a medical professional and obviously a kind, empathetic person, with a high level of patience. Tex, the time that you devote to this site and its people is beyond admirable, and I have been in awe of your patience with numerous members I have followed who have needed a little more tending than others (including, in the early stages, maybe me). The two of you have been around since long before I arrived here, and I highly respect you both for what you bring to the discussion with those who are new. I don't like to see there being conflict about the mission of the board.

Personally, I can see answering the same questions, or going around the same issues, only to a point, and that has been happening, IMO, quite a bit more frequently over the last year. At some juncture, given the patience, nurturing and time that is provided by the many kind and caring members on this board, there needs to be a reality check/slap upside the head in which posters understand that nobody here is going to be able to give any one simple answer, and that responsibility for one's own recovery needs to be taken.
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Post by Jeanemcl »

Ok everyone you've hit my Achilles heel....CONFLICT! I do hope when I grow up I will tolerate it better, but for now let's all just take a deep breath. Tex, I do so appreciate all you do to educate us on our conditions. I think the fact that we are the same yet different is the confusing part to some of us trying to live in our worlds. I for one am pissed off that there isn't a step by step protocol that promises full healing in a short period of time! And every time I think I have the answer, it doesn't last. In Dec. I went to a natural path and went on enzymes, probiotics and kava kava and aloe Vera leaf. I can see some of you are raising your eyebrow and nodding....well here is my question....why did I get better? And better yet, why didn't I stay better??????? I was great for a month. Started sliding last week and now back into full D and feeling crummy. I could just cry. I guess I will go back to pork chops and sweet potato. I do not want to go back on Endocort. Went off it in late Dec. I was done to one pill ever other day and it was holding me. I think I will stick to Imodium and see if I can limp along and improve. I am beginning to wonder how much of this is in my head? Why did I get better when I changed to those supplements? I have been very careful watching for no gluten, soy, or cassein. I have eaten only whole foods. The only thing I can think of is I started eating a small salad a couple of weeks ago... And an apple a day. If they were the culprits wouldn't I react immediately? I didn't. Oh, and Polly - please keep the kind words coming. We are inexperienced children when it comes to this condition. We take two steps and fall down and come running back crying for more help. At least that's what it feels like today. Thanks to all of you for being here for me.
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Post by Polly »

Good Morning, All,

I appreciate everyone who took the time to respond so thoughtfully to this email.

Please be assured that Tex and I are FINE! We have been emailing about this issue, and our longstanding, solid friendship is intact! We have the greatest respect for each other, and that will never change. Once in a blue moon, Tex and I will butt heads over an issue here on the forum, and later feel badly that it was so public. CONFLICT is absolutely not helpful for anyone who has MC (thanks for the reminder, Jeanemcl). It only puts our guts into more of an uproar. It's the last thing we need here on the Board.

Love,

Polly
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tex
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Post by tex »

Yep, my dear friend Polly and I seem to have a history of debating various issues on this board, ever since it was created. :shock: It seems to help us gain insight, and in a weird sort of way, it probably helps to bond the strength of our friendship and our mutual respect for each other. We go back a long way, to a previous discussion board, roughly 10 years ago.

I suppose the best thing that can be said about these little differences of opinion is that at least we don't argue as much as some married couples I know. :lol:

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 tex »

To get back to a more productive mode:

Jean,

Sometimes our digestive system/enteric nervous system/immune system responds favorably to change alone. For example, for some of us, the cleanout process prior to a colonoscopy exam will bring at least temporary remission (while for others, it makes their symptoms worse). One or two members have posted about how something as extreme as suddenly challenging their immune system by eating gluten one day, brought immediate remission (of course it didn't last, but that's not surprising — the surprising part is that a gluten challenge somehow shocked the immune system into a more passive state, at least for a while).

Probably, there were at least 1 or 2 items in that treatment program you started last December, that helped. It's impossible to say which ones, of course, since you began using them all at about the same time. But the biggest problem (IMO) with most naturopathic approaches to treating digestive system issues, is that rather than selectively treating with a few supplements, and initially trying them one at a time, in order to make sure than they can be safely tolerated, the doctors choose to pile on every supplement they can think of (which certainly helps to boost their bottom line), and almost surely, in virtually every case, at least 1 or 2, or maybe even a half-dozen or more of those supplements actually antagonize the patient's problems.

And of course in the long run, unlike the experiences in the old-time movies, where good always triumphed over evil, when we're trying to control MC, good only triumphs over evil if every last evil adversary is totally eliminated. Coexistence is not an option, because if a beneficial supplement is taken along with an antagonistic supplement, the antagonistic supplement will win the battle every time. That's also true for medications — in fact it's especially true for medications. This is possibly the most important rule that governs the successful treatment of this disease, and it's a rule that most doctors tend to totally ignore (because they presumably are not aware of it — they probably continue to naively believe that good always triumphs over evil).

It's also the reason why we have to ferret out and avoid every food, medication, or supplement that causes our immune system to react (produce antibodies). The last sensitivity standing is almost always very tough to discover, because it is typically something that we have learned to trust, so we eat it regularly, without ever considering that it might possibly be a/the problem.

Another thing to seriously consider is that when we get confusing (inconsistent) signals from our reactions to foods, or suffer a relapse for no apparent reason, the problem can often be traced back to mast cell/histamine issues.

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 solisspirit »

Thanks again to understanding, Polly.

Tex, I think I understand your outlook, and I suspect you have a gung-ho way of tackling an issue. Unfortunately, that's not always practical for everyone. I agree, I could have read the chapter three months ago, but as I stated before (and I have read quite a bit already, in case you presume I haven't), I was under the impression it was a medical book with many pages that was just not practical for me in the last three months to read. When you told me it was 14 pages approximately, I thought to myself "well, that's nothing! I can get that out of the way pretty quick in between other collegiate work I'm doing in the midst of two kids". When I got to the point of downloading it from my email, I realized it said "Chapter 9" and I thought you told me it was chapter 14 (a mistake I admitted to making because of the reference you made about it being 14 pages long). This is when you became defensive, when I asked to make sure you sent me the right chapter. I didn't think it was that big of a deal, to be honest.

As for my level of experience in reading and getting advice from people of similar diseases, I can tell you I've been on and off these forums for years now. Instead of being hopeless after my insurance refused to allow my tests be done, I've been pro-active at doing everything I've been able to within my power without medicine to stay in the best condition I can be in. I still have no pain. I don't bleed at all. I sleep well. My immune system seems fine as I rarely get sick. I'm maintaining my over weight. I stopped eating gluten and soy two months ago, which has helped make a difference in the consistency of my poop as well as less time to the restroom. This all tells me one thing, getting back to the topic of the forum. Whatever it is I suffer from, it doesn't like gluten (because when I have it I taste what some in the celiac group says taste like eating tin foil, or a penny), it doesn't like soy, and it doesn't really like dairy, though I can have it sometimes with no apparent issue (the dairy part). In the last two months, these are things I never tried to eliminate before, but have made a big difference in the bathroom area. As far as my weight goes, I'm not gaining, and I still have fat malabsorption because I see it sometimes in my poop. Is this because my villi is damaged or because I have scar tissue? Another question I have. So, as you can see, I do know a little bit about a little bit, but it's because of the support and material I have read from real people that suffer from the diseases.
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Post by tex »

It sounds as though you're making progress, and yes, each of has to work out his or her own customized treatment program to avoid any food sensitivities. If you are sensitive to gluten, then yes, you very likely have at least lymphocytic infiltration into the tips of your villi, which causes inflammation (this is classified as a Marsh 1 level of damage). If you happen to have one of the celiac genes, then you may well have more extensive damage to the villi (a Marsh rating of 2, 3, or 4). A Marsh 3 or 4 rating would qualify for a diagnosis of celiac disease.

It takes a long time for the damage caused by gluten to heal (a return to normal cellular histology). Kids heal quickly, though, and they usually heal completely within 1 to 3 years. It typically takes adults a minimum of 3 to 5 years to heal, and some of us never heal completely. You're still young enough that with any luck at all (as long as you totally avoid gluten and your other food sensitivities), your intestines should eventually completely heal. As the healing progresses, the fat malabsorption problem will fade away, and you'll eventually begin to gain weight (provided that you eat enough calories).

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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