Hello! i am a new member, not sure if this is the correct place to post. Diagnosed with LC last week. The GI's nurse called to inform me of the diagnosis and also said she would be calling in a prescription for Enticort. Keep in mind I have never had an an appt with this doctor, he simply performed my colonoscopy last week. I declined the prescription and asked for an appt to discuss options. Meanwhile I did my homework, including reading "Microscopic Colitis" and I have quickly set about to make the dietary changes to gluten free and dairy free.
Had the appt this afternoon. Dr. told me there is no "published data" to prove that dietary changes will have any effect at all. He did his best to convince me to go on the meds, but I declined saying I would like to see if changes in diet make a difference. He told me to call him when I'm ready to go on the meds. He downplayed side effects and stated that 6 months on the meds would most likely make the LC "go away" and that very few patients relapse.
Am thinking about seeing a naturopathic physician/acupuncturist for another viewpoint. Is it possible to control symptoms with diet alone, or am I being naive? Would really like to avoid long term use of meds if at all possible.
Have learned volumes from searching your database and look forward to learning more.
New Member
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Carriagehouse
- Adélie Penguin
- Posts: 99
- Joined: Mon Dec 10, 2012 11:46 pm
- Location: Oregon
Hi "C" and 
I have to say.......you are amazing! You have done your homework and are taking charge of your disease in a very proactive way. I have no doubt that you will be successful, since these 2 factors are the most important for getting your life back!
Yes, it is possible to achieve remission with diet alone. I have done so for the past 12 years now. Of course, I have had a few "flares" along the way - mainly due to stress or to eating foods I know I shouldn't eat. Some here started with medication and diet together and then were able to stop the med. and continue with diet alone. A few have needed to continue med. indefinitely. We are all different, as you have undoubedtly see.
Looking forward to hearing updates on your progress.
Good luck as you start your journey! We are here to offer empathy and advice any time you wish.
Polly
I have to say.......you are amazing! You have done your homework and are taking charge of your disease in a very proactive way. I have no doubt that you will be successful, since these 2 factors are the most important for getting your life back!
Yes, it is possible to achieve remission with diet alone. I have done so for the past 12 years now. Of course, I have had a few "flares" along the way - mainly due to stress or to eating foods I know I shouldn't eat. Some here started with medication and diet together and then were able to stop the med. and continue with diet alone. A few have needed to continue med. indefinitely. We are all different, as you have undoubedtly see.
Looking forward to hearing updates on your progress.
Good luck as you start your journey! We are here to offer empathy and advice any time you wish.
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi There,
I'm sure that others on this fantastic board will chime in with their perspectives on this. And although I'm a relative "newbie" to this and am a pretty quiet member of the forum, I have learned TONS from everyone's insights and advice. One thing I've learned is that everyone seems to be different, and so what works for some might be different for others.
I know that lots of folks on this board found Entocort to be a huge, huge help. i never have done it, as my GI wanted me to try Pepto Bismol first instead. So I gave that a go, along with getting rid of gluten and most all dairy. For me, this seemed to work pretty darn well. I was first diagnosed in early August, and am back to normality at this point. Others don't seem to tolerate it so well, or it isn't helpful.
But it sounds to me like your GI's advice is contrary to a lot of other people's experiences. I think I would consider getting a second opinion if that's an option for you.
Best of luck with this. I'm sure you'll find the insights on this board tremendously helpful.
Warmly,
Mary
I'm sure that others on this fantastic board will chime in with their perspectives on this. And although I'm a relative "newbie" to this and am a pretty quiet member of the forum, I have learned TONS from everyone's insights and advice. One thing I've learned is that everyone seems to be different, and so what works for some might be different for others.
I know that lots of folks on this board found Entocort to be a huge, huge help. i never have done it, as my GI wanted me to try Pepto Bismol first instead. So I gave that a go, along with getting rid of gluten and most all dairy. For me, this seemed to work pretty darn well. I was first diagnosed in early August, and am back to normality at this point. Others don't seem to tolerate it so well, or it isn't helpful.
But it sounds to me like your GI's advice is contrary to a lot of other people's experiences. I think I would consider getting a second opinion if that's an option for you.
Best of luck with this. I'm sure you'll find the insights on this board tremendously helpful.
Warmly,
Mary
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Carriagehouse
- Adélie Penguin
- Posts: 99
- Joined: Mon Dec 10, 2012 11:46 pm
- Location: Oregon
Thank you Polly and Mary! This site is such a wealth of good information, it is comforting to know that while I go through this process I will have a support system of people who have been there and understand. After a little over a week, I am already noticing family members' eyes glaze over when I try to talk about this - not that they don't care, they just can't relate. And my wonderful Type A lawyer husband is skeptical at every turn, so I'm insisting he read (or at least scan) "Microscopic Colitis" to get a basic understanding. Got the blood test for Celiac and will know in a couple of days if I will undergo a sigmoidoscopy biopsy. Will try to stay open minded about the meds, but want to avoid them if I can. Thanks again for the warm welcome!
Hi and Welcome!
You have done your research it sounds like....good for you! Since you are just now starting the GF/DF diet, you may find you don't need meds....so good idea to put meds on hold for now. You may get a lot better with just the diet alone. Going GF/DF helped me a lot but still had the stubborn D. If your D isn't bad, you may find success with just the diet sooner than I did. After 3 months of being GF/DF I still had chronic D and was losing weight and getting too weak, I broke down and did the 3 months of Pepto. Luckily it worked 100% for me. For some reason my doctor didn't prescribe Entocort for me, just advised me to take Imodium if my D should come back.
I have been with this forum since August and one thing I've learned is that until you remove all food intolerances and reduce stress then you will relapse. Doctors seem to take this disease too lightly. It's often nastier than what we ever expected. Though there have been quite a few success stories on this forum. Please read them....they are very inspiring.
Good luck with the diet! Just FYI, I found it harder to go DF than GF! Oh...and be sure you check any meds or supplements you take for gluten and dairy. I just recently had to change my Vitamin D because it has soy in it.....don't know if I react to soy....but I figure eliminating some of it would be for the best. A lot of people have to give up soy as well.
Take care,
Terri
You have done your research it sounds like....good for you! Since you are just now starting the GF/DF diet, you may find you don't need meds....so good idea to put meds on hold for now. You may get a lot better with just the diet alone. Going GF/DF helped me a lot but still had the stubborn D. If your D isn't bad, you may find success with just the diet sooner than I did. After 3 months of being GF/DF I still had chronic D and was losing weight and getting too weak, I broke down and did the 3 months of Pepto. Luckily it worked 100% for me. For some reason my doctor didn't prescribe Entocort for me, just advised me to take Imodium if my D should come back.
I have been with this forum since August and one thing I've learned is that until you remove all food intolerances and reduce stress then you will relapse. Doctors seem to take this disease too lightly. It's often nastier than what we ever expected. Though there have been quite a few success stories on this forum. Please read them....they are very inspiring.
Good luck with the diet! Just FYI, I found it harder to go DF than GF! Oh...and be sure you check any meds or supplements you take for gluten and dairy. I just recently had to change my Vitamin D because it has soy in it.....don't know if I react to soy....but I figure eliminating some of it would be for the best. A lot of people have to give up soy as well.
Take care,
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Hi again C,
Just wondering why you would need a sigmoidoscopy if you have already been diagnosed with MC. Did you mean endoscopy by any chance? I only mention it because some GI docs seem to recommend repeated colonscopies/sigmoidoscopies unnecessarily.
There is a good possibililty that your classic celiac blood test will be negative. As you have undoubtedly already learned, the type of gluten sensitivity that goes along with MC usually results in a negative blood test. That's why so many of us have had Dr. Fine's stool test to pick up gluten antibodies.
Hugs,
Polly
Just wondering why you would need a sigmoidoscopy if you have already been diagnosed with MC. Did you mean endoscopy by any chance? I only mention it because some GI docs seem to recommend repeated colonscopies/sigmoidoscopies unnecessarily.
There is a good possibililty that your classic celiac blood test will be negative. As you have undoubtedly already learned, the type of gluten sensitivity that goes along with MC usually results in a negative blood test. That's why so many of us have had Dr. Fine's stool test to pick up gluten antibodies.
Hugs,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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Carriagehouse
- Adélie Penguin
- Posts: 99
- Joined: Mon Dec 10, 2012 11:46 pm
- Location: Oregon
Hi Polly
Perhaps my hearing has been impaired also, but I'm certain he said sigmoidoscopy is the "gold standard" for diagnosing Celiac. My son-in-law just had one and I remember thinking I would ask him about it. I have only begun to scratch the surface of information contained here. Do I just search for Dr. Fine to learn about the test you mention? Thank you!
Perhaps my hearing has been impaired also, but I'm certain he said sigmoidoscopy is the "gold standard" for diagnosing Celiac. My son-in-law just had one and I remember thinking I would ask him about it. I have only begun to scratch the surface of information contained here. Do I just search for Dr. Fine to learn about the test you mention? Thank you!
Hi and welcome!
I have managed my MC drug-free from the beginning, and one of the first things I did was order Dr. Fine's test from Enterolab.com. You mail them a stool sample. I also recommend the cheek swab genetic test to see if you have the genes for celiac disease...I do. So even though my blood test for celiac was negative (because it would require serious villi damage to be positive), I know the potential is always there for a full-blown case to develop. Keeps the motivation up to stay 101% GF. Most of us are also sensitive to soy, and some are egg intolerant, and Enterolab testing can tell you those too.
If you are extra motivated, you can get MRT blood testing too through a dietician. They test for 150 foods and chemicals to see if you react to them. That identified another 20+ foods for me! (some I knew I didn't tolerate, others were a surprise). But Enterolab is still the #1 test.
I have managed my MC drug-free from the beginning, and one of the first things I did was order Dr. Fine's test from Enterolab.com. You mail them a stool sample. I also recommend the cheek swab genetic test to see if you have the genes for celiac disease...I do. So even though my blood test for celiac was negative (because it would require serious villi damage to be positive), I know the potential is always there for a full-blown case to develop. Keeps the motivation up to stay 101% GF. Most of us are also sensitive to soy, and some are egg intolerant, and Enterolab testing can tell you those too.
If you are extra motivated, you can get MRT blood testing too through a dietician. They test for 150 foods and chemicals to see if you react to them. That identified another 20+ foods for me! (some I knew I didn't tolerate, others were a surprise). But Enterolab is still the #1 test.
Hi,
Welcome to the board. You seem to be a quick study, and you're very motivated. Motivated people get their life back, so I have no doubt that you will soon have your MC symptoms under control.
LC was first described over 30 years ago, and CC was described several years prior to that. In all those years, one would think that at least one GI specialist, somewhere in the world, would have written a book about the disease by now. The fact that they have not, sends a clear message about how little they actually understand the disease. You have to actually have this disease to truly understand it, and obviously, as poorly as the disease continues to be understood by the medical community, not nearly enough GI specialists have had the privilege of experiencing the disease personally. Hopefully that will change in the future, and attitudes will change drastically.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. You seem to be a quick study, and you're very motivated. Motivated people get their life back, so I have no doubt that you will soon have your MC symptoms under control.
LC was first described over 30 years ago, and CC was described several years prior to that. In all those years, one would think that at least one GI specialist, somewhere in the world, would have written a book about the disease by now. The fact that they have not, sends a clear message about how little they actually understand the disease. You have to actually have this disease to truly understand it, and obviously, as poorly as the disease continues to be understood by the medical community, not nearly enough GI specialists have had the privilege of experiencing the disease personally. Hopefully that will change in the future, and attitudes will change drastically.
Again, welcome aboard, and please feel free to ask anything.
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.
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Christine.
- Gentoo Penguin
- Posts: 260
- Joined: Mon Feb 20, 2012 1:15 pm
Welcome!
I am also one that has controlled my symptoms with diet alone. It took only a couple of weeks after going g/f, s/f, d/f and e/f -- all of which Enterolab testing confirmed were problems. One year later I am finding that I can eat egg yolk or small amounts of egg in baked goods. I will likely never eat wheat again and I won't be adding dairy in any time soon, but it is very difficult to avoid soy additives in any processed food. I'm sure I have "gotten away with" eating small amounts of soy oil and soy lecithin, even though I avoid a product if it lists questionable ingredients.
Most people here would disagree with your GI doctor when he says the steroids will cure you. If it was true I would sign up today.
Christine
I am also one that has controlled my symptoms with diet alone. It took only a couple of weeks after going g/f, s/f, d/f and e/f -- all of which Enterolab testing confirmed were problems. One year later I am finding that I can eat egg yolk or small amounts of egg in baked goods. I will likely never eat wheat again and I won't be adding dairy in any time soon, but it is very difficult to avoid soy additives in any processed food. I'm sure I have "gotten away with" eating small amounts of soy oil and soy lecithin, even though I avoid a product if it lists questionable ingredients.
Most people here would disagree with your GI doctor when he says the steroids will cure you. If it was true I would sign up today.
Christine
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Carriagehouse
- Adélie Penguin
- Posts: 99
- Joined: Mon Dec 10, 2012 11:46 pm
- Location: Oregon
Thank you all for such good information. It is gratifying to hear that some of you have found relief with diet changes alone, but it is also good to know that those who manage their symptoms with meds are also doing well. I have so much to learn! Looking forward to reading and absorbing more info. Thank you for all the kind responses.
Welcome. You didn't mention how bad your symptoms are, but your motivation is commendable. I am one of those people who did take the meds ( Entocort) with the diet changes at the same time . One of the reasons is because as a personal trainer, I couldn't afford to lose energy for very long. The drugs got my BMs down from 8 times a day to 2 in two days time. I was down to once a day within a week. Because I too didn't want to be on this drug for long, I weaned down slowly and was off in about 6 months. If diet alone doesn't work, there are options. The pepto treatment worked for many.
I want to add that while you are in an inflamed state, you should omit raw fruits and veggies, beans and fiber foods acid foods, and maybe caffine. They can be added back in when you feel better.
I wish you much success with the diet. We are all here to help.
Leah
I want to add that while you are in an inflamed state, you should omit raw fruits and veggies, beans and fiber foods acid foods, and maybe caffine. They can be added back in when you feel better.
I wish you much success with the diet. We are all here to help.
Leah
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Carriagehouse
- Adélie Penguin
- Posts: 99
- Joined: Mon Dec 10, 2012 11:46 pm
- Location: Oregon
Hi Leah
Thank you for the good information about the first few months of this new way of eating. My symptoms actually date back about 6 years when I really think about it, but each time I would have an episode of D I would go on the BRAT diet for a couple of days (bananas, rice, applesauce, tea) and it would resolve. If it was particularly stubborn I would use Pepto or Immodium, and sometimes both. Never even occurred to me that my diet played a role or that anything was medically wrong. I kept eliminating things like vitamins, Oracea for rosacea, Allegra for allergies. Finally when it appeared symptoms were getting worse I went to my internist who guessed IBS and sent me for a colonoscopy. GI guessed MC and took tissue samples and diagnosed LC. I am still waiting to hear results of Celiac blood test, but plan to do the Enterolab testing after the holidays. This has been an incredibly hectic time of year to be dealing with all these major life changes.
I am taking 1 measured teaspoon of Cholestrymine in 6 oz Gatorade each morning to control D, though I know it isn't healing the inflammation. Trying to do that with diet. Have been gluten free for 1 week, and mostly dairy free. Interestingly I haven't had a migraine in that time period and generally I would have had 2-3, particularly with the added stress. Am not eating any fruits except banana, no veggies or salads as they go through me instantaneously. Same with black beans and lentils, so I am staying away from beans and legumes.Whole Foods is my new best friend. Living mostly on quinoa pasta, 99% lactose free kefir and green tea. Have cut back to one cup of black coffee in the morning, otherwise I get horrible headaches. Had my first experience eating in a restaurant this evening. Sauteed prawns and oven roasted yukon gold potatoes, and a half glass of white wine. So far so good. No bread, salad, sauces or dessert, but it tasted good and it seemed to agree with me. Down 8 pounds in 2 weeks. Other than major fatigue, I feel 100% better than I did 2 weeks ago. Just trying to get my energy back so I can walk - i generally log 5-6 miles per day and I'm missing what that does for my overall mood.
Thank you for sharing your experience. Everything I'm hearing from everyone is being incredibly helpful!
Thank you for the good information about the first few months of this new way of eating. My symptoms actually date back about 6 years when I really think about it, but each time I would have an episode of D I would go on the BRAT diet for a couple of days (bananas, rice, applesauce, tea) and it would resolve. If it was particularly stubborn I would use Pepto or Immodium, and sometimes both. Never even occurred to me that my diet played a role or that anything was medically wrong. I kept eliminating things like vitamins, Oracea for rosacea, Allegra for allergies. Finally when it appeared symptoms were getting worse I went to my internist who guessed IBS and sent me for a colonoscopy. GI guessed MC and took tissue samples and diagnosed LC. I am still waiting to hear results of Celiac blood test, but plan to do the Enterolab testing after the holidays. This has been an incredibly hectic time of year to be dealing with all these major life changes.
I am taking 1 measured teaspoon of Cholestrymine in 6 oz Gatorade each morning to control D, though I know it isn't healing the inflammation. Trying to do that with diet. Have been gluten free for 1 week, and mostly dairy free. Interestingly I haven't had a migraine in that time period and generally I would have had 2-3, particularly with the added stress. Am not eating any fruits except banana, no veggies or salads as they go through me instantaneously. Same with black beans and lentils, so I am staying away from beans and legumes.Whole Foods is my new best friend. Living mostly on quinoa pasta, 99% lactose free kefir and green tea. Have cut back to one cup of black coffee in the morning, otherwise I get horrible headaches. Had my first experience eating in a restaurant this evening. Sauteed prawns and oven roasted yukon gold potatoes, and a half glass of white wine. So far so good. No bread, salad, sauces or dessert, but it tasted good and it seemed to agree with me. Down 8 pounds in 2 weeks. Other than major fatigue, I feel 100% better than I did 2 weeks ago. Just trying to get my energy back so I can walk - i generally log 5-6 miles per day and I'm missing what that does for my overall mood.
Thank you for sharing your experience. Everything I'm hearing from everyone is being incredibly helpful!