First of all, thanks again for all the replies to my post. Most of you said to go Gluten-Free, I did and it worked! I have NO more diarrhea and am happy as a clam. When I return from my vacation, I'll see my doctor and discuss going off my meds. Why not? G-F worked when meds failed.
My only complaints about G-F is that labels can be so hard to decipher and the staggering prices.
Again, you folks are fabulous! Now, if only GI docs would read this board, the world would be a better place. :-)
Mary Ann
G-F is the bomb!
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Hi Mary Ann,
Thanks for the great update. We love to read success stories.
If your symptoms should return, please don't be discouraged, and please don't discontinue the diet, because a relapse usually means that you are sensitive to another food that needs to be removed from your diet, in order to continue in remission. If that should happen, the next most likely food-sensitivity is casein, (the protein in all dairy products).
I hope that won't happen though, so that your digestive system continues to be as calm as a summer night, and I hope your vacation is truly enjoyable.
Tex
Thanks for the great update. We love to read success stories.
If your symptoms should return, please don't be discouraged, and please don't discontinue the diet, because a relapse usually means that you are sensitive to another food that needs to be removed from your diet, in order to continue in remission. If that should happen, the next most likely food-sensitivity is casein, (the protein in all dairy products).
I hope that won't happen though, so that your digestive system continues to be as calm as a summer night, and I hope your vacation is truly enjoyable.
Tex
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.
That's great news Mary Ann. I continue to sit here shaking my head, wondering why the medical community just doesn't GET this and how many people may consider the drastic measures you were in trying to get their lives back. Maybe we need to start our own "Occupy" movement (is there a pun in there?) ;)
Yay, Mary Ann!
I was skeptical about the diet, too. I finally figured, "Gee, how much worse could I feel if I just tried it?" Within a week, I felt soooooo much better. I am now a month into my new GF/DF life and I am not going back. I may try new veggies and spices, but no more gluten or casein for me.
On another happy and related note, since going GF/DF I have not suffered one incidence of GERD (something I was quite concerned about since testing had already shown scarring).
It's the beginning of the rest of our lives, and for me and many others, the journey began when we found this site.
Whoo-Hoo! You go, girl!
I was skeptical about the diet, too. I finally figured, "Gee, how much worse could I feel if I just tried it?" Within a week, I felt soooooo much better. I am now a month into my new GF/DF life and I am not going back. I may try new veggies and spices, but no more gluten or casein for me.
On another happy and related note, since going GF/DF I have not suffered one incidence of GERD (something I was quite concerned about since testing had already shown scarring).
It's the beginning of the rest of our lives, and for me and many others, the journey began when we found this site.
Whoo-Hoo! You go, girl!
Hugs, Wren
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Lymphocytic Colitis (dx January 2010 via biopsy)
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"We don't see things as they are; we see them as we are." -- Anais Nin
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Lymphocytic Colitis (dx January 2010 via biopsy)
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"We don't see things as they are; we see them as we are." -- Anais Nin
Mary Ann and Wren! You are lucky, lucky girls. Finding the "cure" for D and GERD so easily must be like a major miracle.
Why docs won't believe us, but will believe their lying eyes or blinkered minds is WAY beyond me. Every time I talk to my doc I want to cry. He calls me, and expresses such concern, but will not listen to anything I tell him. And he won't help me with things like referring for tests outside of Kaiser. It's SO discouraging.
There are enough people here for a pretty decent double blind study. I wish someone would read here and approach us to do it. I would gladly volunteer, and I am sure others among us would too.
Of course, the trouble with a double blind study is meeting specific criteria. There are so many differences between us that matching the criteria would not be easy, unless the parameters used are our common diagnoses, and the effect of gluten.
Just thinking with my fingers. Brian fog descending and cutting off the process.
Why docs won't believe us, but will believe their lying eyes or blinkered minds is WAY beyond me. Every time I talk to my doc I want to cry. He calls me, and expresses such concern, but will not listen to anything I tell him. And he won't help me with things like referring for tests outside of Kaiser. It's SO discouraging.
There are enough people here for a pretty decent double blind study. I wish someone would read here and approach us to do it. I would gladly volunteer, and I am sure others among us would too.
Of course, the trouble with a double blind study is meeting specific criteria. There are so many differences between us that matching the criteria would not be easy, unless the parameters used are our common diagnoses, and the effect of gluten.
Just thinking with my fingers. Brian fog descending and cutting off the process.
Lesley,
The reason that will never happen, (IMO), is because each one of us requires a pretty much custom-tailored treatment plan, and for the tougher cases, the plan becomes so complex that they could never be accommodated by a controlled, double-blind study. In fact, it would be prohibitively difficult to even formulate a study that could accommodate most of the "easier" cases, IMO.
The real deal-killer, though, is the fact that virtually all such studies are set up for short periods such as 6 weeks or so, and during those 6 weeks, the subjects are blindly rotated through 2 or 3 alternative treatment options, (including the placebo option). Virtually no one would respond favorably to such short treatment programs, (except for options based on the use of corticosteroids), so the conclusions reached as a result of the study, would be that there is absolutely no benefit to be gained by dietary intervention in MC - only prescription drugs can be shown to bring remission. Right?
Tex
The reason that will never happen, (IMO), is because each one of us requires a pretty much custom-tailored treatment plan, and for the tougher cases, the plan becomes so complex that they could never be accommodated by a controlled, double-blind study. In fact, it would be prohibitively difficult to even formulate a study that could accommodate most of the "easier" cases, IMO.
The real deal-killer, though, is the fact that virtually all such studies are set up for short periods such as 6 weeks or so, and during those 6 weeks, the subjects are blindly rotated through 2 or 3 alternative treatment options, (including the placebo option). Virtually no one would respond favorably to such short treatment programs, (except for options based on the use of corticosteroids), so the conclusions reached as a result of the study, would be that there is absolutely no benefit to be gained by dietary intervention in MC - only prescription drugs can be shown to bring remission. Right?
Tex
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.
It hasn't unfogged yet.Lesley,
I only understood how fogged my brain was when it started to clear. So... if you know you're foggy, maybe (perversely enough!) it's a sign things will be clearing soon? Wishing that for you, with all my might.
Tex, your remarks remind me of Dr. Briffa's wonderful post about how the European medical establishment was planning to forbid purveyors of bottled water from suggesting that it might help with/prevent dehydration
And of course, Pepto Bismol was a big help in my quest for remission. It didn't "fix" everything overnight, but I could see light at the end of the tunnel, pretty quickly, after trying it. I wouldn't have been willing to "rotate" onto anything else, at that point - because I was already clear that adding substances to the mix was more likely to send me into a tailspin than to help.
Someone actually said to me about something-or-other, "but that's anecdotal." Well, here's a newsflash: if I'm telling an anecdote, in which I feel much better - that's A-OK with me! In my mind, that beats the heck out of statistics gathered from people who may or may not be statistically very much like me.
I only understood how fogged my brain was when it started to clear. So... if you know you're foggy, maybe (perversely enough!) it's a sign things will be clearing soon? Wishing that for you, with all my might.
Tex, your remarks remind me of Dr. Briffa's wonderful post about how the European medical establishment was planning to forbid purveyors of bottled water from suggesting that it might help with/prevent dehydration
And of course, Pepto Bismol was a big help in my quest for remission. It didn't "fix" everything overnight, but I could see light at the end of the tunnel, pretty quickly, after trying it. I wouldn't have been willing to "rotate" onto anything else, at that point - because I was already clear that adding substances to the mix was more likely to send me into a tailspin than to help.
Someone actually said to me about something-or-other, "but that's anecdotal." Well, here's a newsflash: if I'm telling an anecdote, in which I feel much better - that's A-OK with me! In my mind, that beats the heck out of statistics gathered from people who may or may not be statistically very much like me.
My doctor, this morning, was SO impatient with me. She almost, but not quite, insinuated that I am making a fuss over nothing very much.
She wants me off the Norco, and I agree with her. She just seems to think my back pain is a lot better than I make out.
The exhaustion? She pooh poohed it, and not the good kind of pooh. It made me want to cry. When I said driving across town (LA TRAFFIC) is hard she almost sneered, and it was so unlike her I didn't know what to say.
She wouldn't LISTEN to me.
I am going to see another GE, though I don't think anyone will see this differently. I wish I wasn't stuck with these docs, and I could find someone who helped and supported me.
Without this board I would be lost!
She wants me off the Norco, and I agree with her. She just seems to think my back pain is a lot better than I make out.
The exhaustion? She pooh poohed it, and not the good kind of pooh. It made me want to cry. When I said driving across town (LA TRAFFIC) is hard she almost sneered, and it was so unlike her I didn't know what to say.
She wouldn't LISTEN to me.
I am going to see another GE, though I don't think anyone will see this differently. I wish I wasn't stuck with these docs, and I could find someone who helped and supported me.
Without this board I would be lost!
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MaggieRedwings
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