So happy to find you!

[Mags]

Tex--

I am not sure why you have devoted so much time to picking apart everything I said. Again, I have found what works for me. I am not a farmer but I am a trained researcher and I came to this forum for support and information. When I said "our" I was referring to the American population at large. Food sensitivities/allergies are spiking alarmingly in the past few years.

I believe my MC was caused by c. diff. and nsaids--possibly aggravated by Zoloft, which according to the latest research from the Mayo Clinic, may be a causative or aggravating agent of MC.

I indeed may be wrong about the wheat, but I am not wrong about the corn and soy. It might not be the cultivars, but how the gluten is processed. As a researcher, when I find a problem, I look for an answer. I want to know why. All I know is that people ate bread for thousands of years and 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.

Tex--

If you continue to come at me this way, I will have to leave this forum.

[grannyh]

When Social Security was instituted most people died many years before age 65. It sounded good to the people but the government never expected many people to live long enough to collect.

Same with CC... it was originally thought to be an old white lady disease... and a hundred years ago most little old white ladies didn't live to be old.. so they could eat anything they wanted, no doubt, and gluten would not have been a problem.. just my take on this...

As for Monsanto, I am not buying the "accidental" nature of their claims.. they knew wind would blow from their research farms to those nearby... if they didn't know about wind flow. they would have been too stupid to do research... It is also convenient for some of their products to become non effective so when the patent runs out they can miraculously come out with a new product...
grannyh

[Mags]

Thanks, dear.

I am not here to rant about Monsanto or other big chem companies. I just wanted to share info and learn from everyone. Just like everyone else here I am extremely frustrated about the lack of research about MC, and the dismissal of it as something that "clears up" by itself by most GI's. Having both CC and LC and not being able to take steroids or Asacol has led me to try to find [b][i][/i]anything that could help me.

Mags[/b]

[grannyh]

I think everyone here understands your frustration.. we have been there.. the stupid doctors, the lack of research.. but as my GI doc says.. the doctors just don't get a lot of feedback.. he happens to have had many patients with CC and I was lucky to find him. In the last 9 years he has successfully treated all but one patient with entocort (the one patient it didn't work on had other health problems ..many other health problems). He is also the doctor who is beginning to believe it is the colon preps that is triggering underlying MC.

When I finally got a diagnosis, entocort was off the market here. I tried asacol and it made me sick as a dog. I tried sifting through what I ate with some success. However, our income was quite limited at the time and my diet and diapers were a really huge expense. After three years and many trips to the hospital I was ready to try anything..thankfully entocort was back! We had health insurance and that made the purchase of entocort at $50 a month way cheaper than the diet and I was able to eliminate the diapers.

If you don't have patience when you are diagnosed with MC... you will learn to acquire it or you just won't have any success (in my opinion). I was royally pissed off.. and stress makes it worse.. or does most of the time. I had to be patient.. I ate only one thing at a time til I figured out what I could eat and not spend my life in the bathroom. It wasn't fair.. and I hated it!

I hated being treated like some kind of street bum or addict when I would dehydrate and end up in the ER. Everyone was treated before me.. and when I did get seen.. the care was far from gently or kind... I felt I was being punished for what they perceived were my sins of addiction.

In many ways finding a way back to near a normal life is just one step at a time.. one day at a time... a few hours at a time....

I am two months into a spontaneous remission.. and I love every minute of it. Trying not to stress about how long it will last. Weird..cause 9 years ago I wondered when I would stop filling my drawers:)

There is no one right path for everyone.. we each have to find our own way.. and many paths are available on the many pages of this site.

I hope you will find a path that is right for you.
grannyh

[Mags]

I have. Here is what works for me:

1. Four 2.5 mg Lomotil a day.
2. Above described protein shakes: three per day with organic fruit.
3. Watching what I eat.
4. When I have a flare, I get the big D under control with cholestyramine powders dissolved in juice. If nobody has used these, please try.
5. Phenergan for the extreme nausea.

Patient? Yes.
Complacent? No.

Just call me proactive! I have found the best way to deal with stress is to do something about it! At least for me. Unfortunately, MC is not my only health problem. I just used the techniques I had learned to help me with my other issues to research MC and what would work for me.

I have a wonderful, supportive doctor and family. Many of my relatives also have digestive issues, so the stuff that I learn can also help them.

Cheers,

Mags

[grannyh]

Those cholestyramine powders, landed me in the ER..I was bloated bigger than when I gave birth to myb kids, was throwing up and had D big time.. just shows how different we all are!
grannyh

[Joefnh]

Hi Mags, I have also used the Questran (cholestyramine) powder to get things under control. Fortunately I have not needed it for a while.

--Joe

[grannyh]

The very first GI doc I saw put me on Questran (cholestyramine) powder, when that landed me in the ER he told me he wouldn't see me again until I was cleared by a psychiatrist... he was sure I was nuts and the problems were all in my head. He said it "should have worked" and when it didn't.. and HIS treatment was not proved to be successful.. since it worked for others.. the problem was all mine and in my head...LOL
grannyh

[Robbie]

Oh grannyh, what an awful thing for a doctor to say to you. It sounds like you did not let it get to you (much?).

I had a similar experience at the age of 23, after seeing a doctor for migraines, dizzy spells, fainting spells (etc.). I went in for the results of my EEG. He sat me down and said "Well, I really thought you were just another bored housewife but there really is something wrong with you." On the surface it sounds fairly benign, I suppose, but I was shocked by what he said. And it made me gun shy of doctors.

It's so sad that so many in this ol' world have to be up against such nonsense when we're trying to get well. I'm sure there are lots of hypochondriacs out there, but a lot of doctors seem to throw it around a lot. I guess it's their default answer when they don't have one. Of course a lot of people think that about others, too - not just doctors. I've dealt with Fibromyalgia almost twenty years and my own sister has always insisted it's not real

[tex]

Well, Mags,

I certainly didn't contradict your claims because I was trying to be "mean", or because I like to "pick on" anyone, because I hate to be in a position that makes me look like a "bad guy". The reason I did so is because the internet is already full of a lot of BS, and on this forum we like to keep our facts straight, as much as possible. There's certainly nothing wrong with expressing an opinion - we do that all the time, but when we do, we try to point out that it is strictly our opinion - we don't try to palm it off as a fact. None of us are perfect - we're only human, so we all make mistakes. If you didn't repeatedly point out to us what a great researcher you are, then I would be inclined to simply let it slide, because I'm really not out to hurt anyone's feelings. However, when someone feels obligated to point out to us how well qualified they are to influence our thoughts, or they try to convince us that they are somehow "better qualified", at finding information, and interpreting it, than most of us, then they had better keep their facts straight, because most people tend to believe "experts", (even self-appointed experts), much more than they would believe a non-expert, so by default, I will automatically hold a self-appointed "expert" to a much higher standard of accuracy, than someone who does not try to sell herself/himself as an authority on a topic.

Believe it or not, you don't have the market cornered on Google - this board is full of excellent researchers, and many are professionals. I apologize, but for some reason, your attitude just rubs me the wrong way, and while I am seriously trying to understand your motives, I'm not having an easy time of it. Let's just say that people who try to come off as an "expert" and then try to palm off misinformation as fact, are a pet peeve of mine, because they are a major reason why the internet is so full of BS, falsehoods, and half-facts.

All I know is that people ate bread for thousands of years and 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.

Again, you are wrong. Celiac disease was first described almost 2,000 years ago, (more specifically, over 1,750 years ago). Celiac disease, (gluten-sensitivity), has probably always been a problem, ever since wheat was first cultivated, but the medical profession has chosen to pretty much ignore it, for the most part, until the last century or so, and they haven't exactly set the world on fire trying to understand it, diagnose it, and treat it, up to, and including, today.

As far back as 250 A.D., Aretaeus of Cappadocia included detailed descriptions of an unnamed disease in his writings. When describing his patients he referred to them as "koiliakos," which meant "suffering in the bowels." Francis Adams translated these observations from Greek to English for the Sydenham Society of England in 1856. He thus gave sufferers the moniker "celiacs."

http://www.csaceliacs.org/CeliacDisease.php

and 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.

Here is what works for me:

1. Four 2.5 mg Lomotil a day.
2. Above described protein shakes: three per day with organic fruit.
3. Watching what I eat.
4. When I have a flare, I get the big D under control with cholestyramine powders dissolved in juice. If nobody has used these, please try.
5. Phenergan for the extreme nausea.

You continue to arouse suspicion about your qualifications/motives. There is absolutely nothing in your treatment program that addresses the inflammation present with MC - all you are doing is treating diarrhea. Cholestyramine is nothing but a bile acid sequestrant, which happens to have a major side effect of constipation. It does not address inflammation. Maybe, (just maybe), you are one of the few members here who are truly not gluten-sensitive, (and I'm certainly not trying to claim that you are gluten-sensitive), but statistically, the odds are stacked against that, so you give the impression of someone in denial, (just my opinion). Treatment-wise, most of us would classify you as a "control", since you are doing nothing to treat the inflammation in your intestines. Watching what you eat is a good start, but if you actually have any food sensitivities that cause autoimmune reactions, they have to be strictly avoided, (even trace amounts), in order to prevent additional inflammation.

If you continue to come at me this way, I will have to leave this forum.

In all honesty, I would much rather that you stay, climb down off your high horse, and allow us to help you to learn how to actually treat your disease, because I'm concerned about your long-term health, since your MC symptoms are currently untreated, and when MC is allowed to go untreated for an extended period of time, the risk of developing other autoimmune diseases increases dramatically. Also, please don't threaten to punish yourself, just to spite me - that's counterproductive. You appear to try to give the impression that you have this disease all figured out, and you are here to tell us how to go about improving our own treatment programs. Unfortunately, with the treatment program that you are using, you leave the impression that you don't understand MC at all. Like most GI docs, you seem to believe that it is "just a little diarrhea".

I, and everyone else here, would love to be able to help you to understand this disease, and help you to develop a "real" treatment program, and I certainly have no interest in constantly nit-picking anyone, but for Pete's sake, if you're going to try to tell us what's wrong with the world, or how we should be treating MC, or whatever, please try to get your facts straight. Misinformation bugs us, because virtually all of us got far too much of that, from our GI docs.

Tex

P. S. Besides, if anyone should leave, it should be me, for painting myself into a corner so that I end up making a post such as this.

[Zizzle]

Many of my relatives also have digestive issues, so the stuff that I learn can also help them.

Mags,
Many of my family members have digestive issues too. I often wonder if we share the same gluten-sensitivity genes, but I can't convince them to get tested, or even try a GF diet for 10 days, so they go on with their IBS, gas, bloating, heartburn, D, etc. as if it's normal. Gluten was the LAST food sensitivity I suspected. I blamed my symptoms on lactose, fat, spicy foods, acid foods, fiber, caffeine, MSG, food additives, you name it. Amazingly, within 10 days of stopping gluten, the D subsided considerably, and I was able to eat many of the foods that I once considered my trigger foods. Have you done a GF trial to see if it makes a difference for you?

My triggering event was probably a GI infection too, which I believe led to "post-infectious IBS," which created a leaky gut, which caused the food sensitivities, which cause the D. My celiac genes were probably triggered along the way, possibly during a non-specific post-partum autoimmune flare. There are so many factors involved. Is it an unfriendnly mix of bacteria? Vitamin deficiencies? Toxic contaminants in our environment and our bodies causing our immune dysregulation? (i.e. mercury, BPA, PCBs, etc, etc). I wish it was easy to point the blame...it would make finding a cure much easier!!

[MBombardier]

I am like you, Zizzle. I blamed my digestive issues on anything except gluten and lactose. I am too ashamed to say what I thought of people who thought they were gluten intolerant (even a dear friend), and I hate to even imagine what I would have said to someone who suggested that I might benefit from taking bread and cheese out of my diet.

But being diagnosed with CC, when I had not even gotten the colonoscopy because I was having uncontrolled diarrhea (though that symptom is what alerted my GI to do the biopsies) sent me reeling. Ii found Dr. Fine's site first, and the information that MC has a genetic link to celiac, which can predispose to intestinal lymphoma. Since both my parents had (have) non-Hodgkins lymphoma, this was a wake-up call, and I went gluten-free in late September. Not that these two types of lymphoma are related, but...!

Finding this board, and the caring, knowledgeable, and courageous people on here has been a huge blessing. I don't post much (I don't think, lol) about the struggles that I have, but you are all role models for me in the way that you seek to understand this disease and to learn to live well with it, whatever that means to you. I feel like I have literally condensed several years of education into three months because of what I have learned here.

Now, after having been gluten-free for over three months, the brain fog has cleared and I have my brain back, my allergy to dogs is apparently gone, and I sleep through the night more nights than not for the first time in probably 25 years.

[Mags]

Of course I've done a gluten-free trial. I've also spent the last hour in tears because of what Tex had to say about me.

Let me be very clear here. I feel that I must respond to some of the things he has said about me as he obviously carries a lot of weight around here.

1. I am NOT trying to influence anyone's thoughts. I just wanted to share what worked for me.
2. I in NO WAY feel as if I am better qualified to interpret information than anyone else on this forum.
3. I have made NO CLAIM to be any kind of expert on anything except for what works for me.
4. I have no qualifications or motives that I am aware of, except to share and aquire support and info.

Tex--To accuse me of being in denial and assuming that I think this is just "a little diarrhea" is perhaps the cruelest thing that has been said to me. I have no high horse to get off of, just a toilet. This disease has taken everthing away from me: my ability to work, my independence, my ability to have a love life, my ability to see my family on important occasions, everything. When I finally found this place, I just poured everything out.

I don't know what else to say.

[natythingycolbery]

Mags, I think what Tex is trying to say is just be a little careful as to how you are wording things as you are coming across quite forcefully.

For example, what you said on my 'Can I have a hug' thread I found quite offensive because if you had done a little background research (and read all the thread posts from myself) you would have discovered that the reason I have MC is due to anti-depressents so I know perfectly well what I can/cant have in terms of anti-depressents, yet you seem to assume I had no idea at all.

You have good intentions, but you seem to have the 'only I am right' attitude, which to people who have dealt with this disease for such a long time can be condescending.

I don't intend to offend you by saying what I have, and if I have i can only truly apologise.

[Mags]

Naty,

Let me apologize for having offended you. It was certainly not my intention. It is sometimes hard for me to share all of my struggles, and I am sorry if I came off the wrong way. I suffer from major depression as well, amongst other things. I am sorry if I told you something you already know. I was not aware of the link between antidepressants and MC until recently. 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.

Again, please forgive me.

How could you possibly offend me?

Mags