So happy to find you!

[tex]

Mags,

Good for you for sticking around and explaining your situation in more detail. You have gained my respect, by doing so. I get the impression that you are just like most us. I apologize for the tears, but you know what? I shed a few over this thread, also. Tough love is never easy, but sometimes it gets results when nothing else will. Believe me, we have all shed a lot of tears over this disease, and everyone here has been forced to significantly alter their lifestyle, (in numerous ways), in order to accommodate/control their disease, so that we can regain a reasonable facsimile of our original life. It comes with the turf.

I have no idea what sort of GF diet trial you tried, but the bottom line is, unless you totally and simultaneously eliminate every food intolerance that you might have, for what in some cases amounts to a very long time period, you may not be able to see any improvement, no matter how sensitive to gluten you might be. It took me a year and a half, for example, after I cut out all gluten, before I was able to figure out and eliminate all the foods that were making me sick. Once I cut them all out, within a couple of weeks, I was in remission. After following a very restrictive diet for almost 2 years, my gut had healed enough that I could begin to slowly add many of the foods that I had been avoiding, back into my diet.

Initially, I couldn't tell that gluten was a problem, because almost everything else seemed to make me sick. It turned out, though, that gluten was the problem, all along, and all the damage that it had caused to my gut, was the reason why I reacted to so many foods.

It sounds as though you are fed up with the disease, and all it's miserable symptoms, so you are obviously motivated, and motivated people get results. So let's get you off that toilet, so that you can begin to enjoy life, again. You have to start treating the inflammation, if you are going to control MC - treating the diarrhea is simply prolonging the agony.

Since you're allergic to steroids, I assume that you may be allergic to budesonide, (Entocort EC), also, so that leaves diet as your "best", (and safest), method of treatment, (unless you want to try one of the powerful immune system suppressants, such as Imuran, or one of the TNF- inhibitors). The immune system suppressants seem to work reliably for Crohn's disease, but members of this board who have tried them for MC, have had very limited success, (unless they were following a diet which avoided all their food sensitivities, to begin with, in which case the diet would control their MC symptoms, anyway, without the drug.

IOW, you're on the right track with your treatment program, you simply need to fine-tune that diet. If you want to erase any doubt about whether or not you are gluten-sensitive, the best way to do that is with a stool test, by Enterolabs, in Dallas, TX. They offer the only reliable stool tests for pinpointing certain food sensitivities. The celiac blood tests are worthless for detecting the type of gluten-sensitivity that people with MC have, and yet we tend to be just as gluten-sensitive as the average celiac, and in many cases, even more sensitive.

I realize you feel that we're beating a dead horse here, by continuing to harp on gluten-sensitivity, when you are "convinced" that it is not a problem for you, but believe it or not, that is the default reaction for newcomers to this disease. They almost always feel that they are the rare exception, and they are usually subsequently amazed to find what a difference avoiding gluten can make in their life.

Thank you for responding, and I truly hope that you will soon be in remission, so that you can set that Lomotil and cholestyramine aside for use on the rare occasions when you accidentally ingest a hidden food-sensitivity while eating out.

Again, I apologize for my methods, but if this accomplishes the goal of encouraging you to do what you need to do to achieve remission, it was worth it. It hurts all of us to see members of this board suffering, when a few changes in their diet might enable them to get their life back. Easier said than done, I know, but until we're in remission, we have to keep trying harder, to get control of this disease, because the damage continues to accumulate, until we stop the inflammation from forming.

Tex

[Mags]

Tex--

I appreciate your response, but I feel I must correct one misunderstanding. I think I have mistakenly given the idea that I [i]currently suffer from MC symptoms and flares on a regular basis. I don't. I had four last year, but three of those were before I got on the protein shakes that I use now. One of the reasons I take Lomotil is that some of my other medications tend to cause D. I keep to a very strict diet and have always avoided prepared foods, pasta and bread. The triggers for my symptoms appear to be stress and/or illness or injury related. I do avoid gluten, just to be on the safe side, but not religiously, as I must do for lactose.

However--you may call it tough love or whatever you wish but your "methods" were inappropriate, to say the least. Try reading back over the thread and seeing it from my standpoint.

To quote Stephen Jay Gould "I am not a joiner." I am still at odds with myself whether or not to continue here.

I would greatly appreciate some feedback.

Mags[/i]

[natythingycolbery]

Mags, I accept your apology it is obviously a crossed wire.

I just have one slight thing to query though.

I mentioned bipolar only because my friend just attempted suicide after a long battle with misdiagnosed depression, which turned out to be bipolar. You are the same age.

I'm slightly confused as to how to interpret the above. I have currently interpreted it in the following ways.

-I'm 23 therefore I'm suicidal.
-I'm 23 therefore I'm bipolar.
-Both of the above combined.
- You are comparing my mental health problems to your friend and thinking that we have the same problem.

I am truly sorry for your friend having to go through that to finally get the correct diagnosis, but if it is the last thing, I am not your friend, I am a seperate person.

Katy.

[Gloria]

I would greatly appreciate some feedback.

I'm hesitant to jump in here, but you might appreciate some insight from a relatively "old-timer" on the board.

You have great enthusiasm and you truly want to help others here on the board. That's been very obvious and your heart is in the right place. We aren't used to newbies coming in with ready-made advice; they are usually here desperately looking for some. We are always happy to help others and are interested in what they have found to work. As you know, not all people will respond the same way to all treatments.

You might want to read about some of the experiences of others on the board to see what they've tried, and what has worked or failed for them. Sometimes I research what someone is doing for treatment by clicking on the "Profile" button at the bottom of their post. That takes me to a page with a link to all of their posts, and I can look at what they've written before I respond. That way, I'm not repeating a method they've already tried, or I'm not suggesting they use a steroid when they've already posted that they are allergic to one (as you recently wrote).

I hope you will continue to contribute to the board and be an active member. You have a lot of knowledge and experience, and we can always use someone who looks at things from another angle. I also think that you can benefit from everyone else's experience and knowledge, if for no other reason than to be around others who understand your illness.

Gloria

[Mags]

Katy--

Please let me explain my reasoning and apologize yet again:

1. You had mentioned you were not sleeping.
2. You had mentioned antidepressants.
3. You have been diagnosed with depression fairly recently.
4. Bipolar is often first diagnosed as depression.
5. It generally rears its ugly head in the early twenties.
6. Sleeplessness with depression can (not is, can) be a sign of bipolar.

So, no I don't think you are suicidal, have bipolar, or are my friend.

Please, please believe I was only speaking out of genuine concern.

I apologized again if I have once again offended you.

Mags

[Mags]

Gloria, Thank You,

That is exactly what I was looking for. I hope no one else is hesitant to jump in. I am always eager to learn new things. Thanks again for your graciousness and support.

Mags

[harvest_table]

Gloria, Thank You,

That is exactly what I was looking for. I hope no one else is hesitant to jump in. I am always eager to learn new things. Thanks again for your graciousness and support.

Mags

Hi Mags, this is indeed a gracious group of folks, to say the least and this forum has alot to offer.

Echo Gloria, research the board.

Love,

Joanna

[Mags]

Joanna--

Thanks to you as well. I have been and am still exploring the site. There is so much wonderful information here, and I am sure there are many wonderful people. I am sure you can understand my caution; I am still somewhat hesitant to disclose all of my health issues as I have been subject to such strident criticism. The more people like you I communicate with, the more comfortable I will be sharing again.

Love,
Mags

[natythingycolbery]

It's alright Mags, you didnt offend me again, I was just confused (doesnt take much) so thank you for clearing that up.

Katy. x

[Mags]

I'm so glad. I've been reading your threads and it does appear we have several things in common. I also have PTSD, depression, MC, etc. Thanks for responding so quickly...I was having trouble talking around the foot in my mouth!

Mags

[natythingycolbery]

Mags, Don't worry about it too much, it is obvious that you where trying to help us all, it just seemed to come across wrongly/ became misinterpreted. I hope you stick around and get to know everyone a bit better.

[Kari]

Hi Mags,

I'm glad you seem to be able to stick it out here. I joined this forum 4 months ago, and cannot begin to tell you how much it has helped me with my MC management. The amount of accumulated and collective knowledge here is amazing. This forum functions more like a family, as most people seem to stick around and get to know each other over time. The common platform we share in having to deal with this little known and frustrating disease seems to keep us together .

We all want to get well, and the knowledge in the medical community is simply not up to speed to be able to help us successfully (of course there are exceptions). This makes this forum invaluable as we learn from each other. You will notice as you read more here that each person finds their own way of managing, and what works for one, frequently does not work for someone else. None of us have the ultimate answer, including those who have managed to get into and stay in remission.

As for myself, I love to hear about how each person manages, and the more details, the more I enjoy it. I try very hard not to offer advise unless it is specifically asked for, and instead offer the details of my own experience in the hope that someone else will find it helpful. However, I'm not perfect, so I'm bound to make mistakes and accidentally say something that might offend someone else. This is just human nature, which, as we all know, is far from perfect .

I think if you stick it out here, you will find it to be a very worthwhile growth opportunity, as it is for all of us. There is a sense of community here that I feel privileged to be a part of. Hope to hear more from you as time goes by - lots of luck to you.

Love and hugs,
Kari

[tex]

Well Mags,

I apologize for not responding last night to your request for feedback, but again, your post left me with a bad taste in my mouth. If I had posted then, it wouldn't have been very nice, so I decided to wait until today. My thoughts have mellowed a bit today, but unfortunately, the facts haven't changed. Initially, I thought that it was just me, but obviously, others here also see problems with your attitude/approach to posting. You have received some very good advice - read first, offer advice later. I can't improve on that substantially.

So that you can see where I'm coming from, here is how I interpret your statements, (as an administrator/moderator of this board):

In your initial post you said:

I am a trained researcher and I came to this forum for support and information.

First off, if you came here for support and information, than the "I am a trained researcher" part is totally irrelevant. What it really says is, "I'm here to help you guys, 'cause I'm a much better researcher than you are".

only recently have we had these widespread problems with gluten. I personally don't have a problem with it yet, but am concerned about the people who do.

That also supports the observation that I made above - that you came here to help us. You don't really need any help, because gluten doesn't cause any problems for you, (at least that's what you believe).

I think I have mistakenly given the idea that I currently suffer from MC symptoms and flares on a regular basis. I don't. I had four last year, but three of those were before I got on the protein shakes that I use now.

Further evidence that you didn't actually come here for help - you believe that you are in remission.

One of the reasons I take Lomotil is that some of my other medications tend to cause D.

For those of us who have MC, when a drug causes D, we don't take another medication to counter it, (that's what most doctors would do - prescribe another drug to counteract the side effects of the first one), we stop taking the drug that causes the D. The reason we do that is because any drug that causes D, inflames the gut, and Lomotil does not suppress inflammation, it only slows down motility. Therefore, you are perpetuating your inflammation by taking drugs that cause it. If you need to take a drug to treat some other condition, then the solution is to find another drug that doesn't antagonize your MC, because your MC may be the reason why you have the other condition/symptoms in the first place. MC trumps any subordinate autoimmune disease. If you have arthritis, for example, that is often a symptom of MC, and it's almost surely caused by gluten-sensitivity. Been there, done that. At one time, (about 10 years ago), my knees were so inflamed that I couldn't walk without a cane, and several of my fingers had swollen, inflamed joints, causing them to grow crooked and twisted. I also had the symptoms of fibro, chronic fatigue syndrome, and TMJ disorder. The GF diet put a stop to all that foolishness.

I do avoid gluten, just to be on the safe side, but not religiously, as I must do for lactose.

Gluten is not something to be minimized, it has to be meticulously avoided in even trace amounts, otherwise, as the damage to your intestine accrues, you will continue to have those occasional relapses that you mention. Incidentally, we are all lactose "intolerant" when our gut is inflamed, because any form of enteritis will cause the brush border region of the small intestine to drastically attenuate the production of lactase enzyme, and if the inflammation continues, eventually, the production of other enzymes that help to split complex carbohydrates will also be affected. If you control the inflammation in your gut, you will find that you will be able to tolerate lactose, (unless you're sensitive to casein, the primary protein in milk).

However--you may call it tough love or whatever you wish but your "methods" were inappropriate, to say the least.

That's always the way that tough love is interpreted by the recipient, at least initially. It bothered me at least as much to write that, as it did for you to read it, but I truly believe that someone needed to say it, and unfortunately, that appears to be my job.

To quote Stephen Jay Gould "I am not a joiner." I am still at odds with myself whether or not to continue here.

You continue to "threaten" us with that, but look at what you're saying - you're implying that your leaving would be a great loss to us, (again suggesting that you came here to help, not to receive support). Look, we'd love to be able to help you, if you will let us, because you obviously need some serious help, not just with MC, but with all your other issues, as well. And once you are actually in remission, and better understand this disease and it's treatment, then yes, we'd appreciate your help. But first, you need to get serious about treating your own issues, before you can help anyone else. An old truism says that You can't teach what you don't understand.

I would greatly appreciate some feedback.

The bottom line is, let us help you first, then you can help us. I see that as your primary issue - you don't want any help, even though you desperately need it. That's called denial, and I sincerely hope that you can overcome it, because you can't really get your life back, until you get past that stage. So there you have my thoughts, today, FWIW.

Tex

[Mags]

Tex--

Please stop. Please. I'll try to address your problems with me again one by one.

1. Just like you are a farmer, I am a reseacher. It's what I do. I make mistakes. It goes with the territory--sometimes I come across erronneous information. I came here because I have spent years with no one to talk to about this, and if I came on a little strong, I apologize once again. I got really excited and ended up with my foot in my mouth.

2. My comment about others who have gluten intolerance had to do with my stepmom, my stepsister, and a close friend, all of whom have celiac disease. I apologize again if it seemed as though I was being dismissive about anyone or anything on this board.

3. I have no idea if I am in remission or not. It is one of the things that I want to know more about. I didn't even know I could go into remission until extensive reading in this forum.

4. If I could possibly take other drugs that did not cause D, I would. I take them for conditions that are in no way autoimmune related. I unfortunately, I have no other options if I want to stay around. As I have said earlier, I have other health conditions that I am uncomfortable discussing at this point.

5. As for the gluten issue--you really got me thinking. I dug out my medical records last night to see all of the tests that had been run in the 8 or so months it took me to get a diagnosis. My (former) GI's nickname is Dr. Poop--and of the twenty or so stool samples he got from me, he did send them off to be tested for several things, including gluten sensitivity. I did come back negative. He thought I had IBS because he had literally exhausted everything possible and it just did not occur to him that a 35 year old woman could have MC.

6. I am still willing to take your advice and see if my gluten-sensitivity status has changed.

7. However, I lost any tolerance at all to lactose when I had c. diff. I know I don't need to explain why.

8. I am in no way "threatening" to leave. I don't think I would be loss at all. You obviously have everything under control. I just don't understand why you have chosen to interpret my posts in such a consistently negative manner.

Again, the only reason I have thought about leaving is the way in which you have chosen to respond to me. I am in no way trying to "punish" myself, as you have suggested, nor is my ego so inflated that I think leaving would be any loss to anyone. I was just being honest about my feelings.

Many other people here have chosen to respond to me in a positive way. It is possible that you and I really have a lot in common and just got off on the wrong foot. Some of my closest friendships have started off that way.

Please don't try to interpret this in any way but as an honest attempt to connect with you. I really don't have any hidden motives or agendas.

Mags

[tex]

OK Mags,

Let's start over.

Here's hoping that you will soon be able to reach full, and lasting, remission.

Tex