Judy,
There is a "Bookmark Topic" link in the top left area of the border of every topic (thread) that you can click on to save a bookmark for that particular thread. For example, you can see one just slightly above and to the left of this post (in the light-colored border).
To review and select one of your bookmarks, look up almost at the very top of the page (on the left, just above the Potty People Logo), where you will see a "Bookmarks" link that you can click on to see a list of your bookmarks to choose from.
Your experience with a bumpy road back to recovery is quite common, especially early on during recovery. I have a hunch that the EnteroLab test results will prove to be very helpful, because they will help to remove any doubt about certain foods, and they may discover a food sensitivity that is currently frustrating your efforts.
Thank you for the update.
Tex
Attn newbies or anyone struggling....
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Hello everyone!
My name is Jilly and I am very new to this forum and to the website and also fairly new to my condition (MC), which was diagnosed in March of this year. I've had many flare ups this year, which actually started in October of last year. I'm in the process of moving in to the bathroom as I seem to spend most of my time there. My present flare up has lasted for eight weeks and right now I see no light at the end of the tunnel.
I was prescribed steroids in June of this year, a three month course. Entocort CR 3MG. I had the most horrendous time coming down off them. I was left feeling down and my anxiety levels shot through the roof. My Dr wanted to prescribe more for this flare up and I said 'NO'. I refuse to pump any more drugs into my body.
This diagnosis has been too long coming. I've suffered for several years and my condition being labelled as IBS during this time. I fought the NHS and I've tried so hard myself to stop the pain and the embarrassment that this condition brings.
A friend who suffers with Celiacs advised me to try 'Slippery Elm'. She is unable to take prescribed meds because of her condition and so opted for a more holistic approach. I said, ok I'll look into it. I'd put it off for quite a while and the reason being is because I've spent £'s on alternative medication and all of which didn't help in the slightest. Ok, I did relent and went for it. Off to the herbalist for 100g of organic slippery elm. Three teaspoons a day in warm water
Hmmmm, an acquired taste but I stuck with it as it stuck to my mouth, throat and stuck all the way through to its final destination. I did not expect it to work, I had no faith as I hadn't had any joy in the past with alternative meds. Gosh, I was so over joyed, it really worked. After two weeks of taking the slippery elm, I had the most amazing (dare I say) Pooh it was perfect!!!! 
I also cut GLUTEN from my diet a week ago as I did read that MC is closely related to Celiacs, I hope thats right?! I cut Lacto from my diet three months ago but, alas, no change & I cut caffeine from my diet two months ago but no change..... After a week of not having any Gluten or wheat in my diet I've noticed a change, however small it's huge to me. My husband said he's noticed a change too, I'm more awake and less foggy headed (even though I've been pooping for Britain for quite some time now and getting very tired with it both mentally and physically) I haven't noticed much change on the bowel front yet but that would be a miracle. If I have Non Celiac gluten Sensitivity I'm not sure how many years and if it turns out to be so, did it cause the MC.
Tomorrow, I'm seeing a man called Andrew Chevallier, he's a medical herbalist. He's written several books, you must check him out. My friend with the celiacs has been seeing him for several years, since she was diagnosed and it was he who prescribed Slippery elm and she swears by it. She rarely gets a flare but has all the tools at hand if she does, including the loo roll.
I ran out of slippery elm on Tuesday this week and the cramps started up and today my visit to the loo wasn't the happiest
I'm sure that Mr Chevallier will do the relevant tests etc and I'm hoping I'll leave his clinic feeling like Wonder woman!
Please forgive me for going on so long, I'm just so glad that I've found people who can relate to my problem.
Thank you for taking the time to read this
Jilly x
My name is Jilly and I am very new to this forum and to the website and also fairly new to my condition (MC), which was diagnosed in March of this year. I've had many flare ups this year, which actually started in October of last year. I'm in the process of moving in to the bathroom as I seem to spend most of my time there. My present flare up has lasted for eight weeks and right now I see no light at the end of the tunnel.
I was prescribed steroids in June of this year, a three month course. Entocort CR 3MG. I had the most horrendous time coming down off them. I was left feeling down and my anxiety levels shot through the roof. My Dr wanted to prescribe more for this flare up and I said 'NO'. I refuse to pump any more drugs into my body.
This diagnosis has been too long coming. I've suffered for several years and my condition being labelled as IBS during this time. I fought the NHS and I've tried so hard myself to stop the pain and the embarrassment that this condition brings.
A friend who suffers with Celiacs advised me to try 'Slippery Elm'. She is unable to take prescribed meds because of her condition and so opted for a more holistic approach. I said, ok I'll look into it. I'd put it off for quite a while and the reason being is because I've spent £'s on alternative medication and all of which didn't help in the slightest. Ok, I did relent and went for it. Off to the herbalist for 100g of organic slippery elm. Three teaspoons a day in warm water
Hmmmm, an acquired taste but I stuck with it as it stuck to my mouth, throat and stuck all the way through to its final destination. I did not expect it to work, I had no faith as I hadn't had any joy in the past with alternative meds. Gosh, I was so over joyed, it really worked. After two weeks of taking the slippery elm, I had the most amazing (dare I say) Pooh it was perfect!!!! I also cut GLUTEN from my diet a week ago as I did read that MC is closely related to Celiacs, I hope thats right?! I cut Lacto from my diet three months ago but, alas, no change & I cut caffeine from my diet two months ago but no change..... After a week of not having any Gluten or wheat in my diet I've noticed a change, however small it's huge to me. My husband said he's noticed a change too, I'm more awake and less foggy headed (even though I've been pooping for Britain for quite some time now and getting very tired with it both mentally and physically) I haven't noticed much change on the bowel front yet but that would be a miracle. If I have Non Celiac gluten Sensitivity I'm not sure how many years and if it turns out to be so, did it cause the MC.
Tomorrow, I'm seeing a man called Andrew Chevallier, he's a medical herbalist. He's written several books, you must check him out. My friend with the celiacs has been seeing him for several years, since she was diagnosed and it was he who prescribed Slippery elm and she swears by it. She rarely gets a flare but has all the tools at hand if she does, including the loo roll.
I ran out of slippery elm on Tuesday this week and the cramps started up and today my visit to the loo wasn't the happiest
I'm sure that Mr Chevallier will do the relevant tests etc and I'm hoping I'll leave his clinic feeling like Wonder woman!Please forgive me for going on so long, I'm just so glad that I've found people who can relate to my problem.
Thank you for taking the time to read this
Jilly x
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Jolly
Welcome to our group, sympathies you had to find us.
That is great you noticed an improvement once you stopped gluten. There are many here that tested negative to the blood test for celiac, but who feel 300times better when not eating it.
I hope your new practitioner can help you. some words of advice, MC is not like other IBD's. I have used natural/wholistic therapies, naturopaths, acupuncture, nutritionists, etc etc for 15 years or more, my best friend is a naturopath, We have learnt that MC is different, and needs different approach.
Strong herbal solutions can cause more issue than benefit when Inflammed. Pro-biotics also tend to cause more people issue than benefit when inflammed, down the track when inflammation is reduced there are quite a few that pro-biotics work well.
Read the posts/ topic areas aimed at new people, read the subsequent discussions as quite a few of your questions may be answered, if not, feel free to ask questions.
If you have the time, reading the posts in the success stories area will also give you info on how people got their wellness back, and how long it took...
Hope this helps
Welcome to our group, sympathies you had to find us.
That is great you noticed an improvement once you stopped gluten. There are many here that tested negative to the blood test for celiac, but who feel 300times better when not eating it.
I hope your new practitioner can help you. some words of advice, MC is not like other IBD's. I have used natural/wholistic therapies, naturopaths, acupuncture, nutritionists, etc etc for 15 years or more, my best friend is a naturopath, We have learnt that MC is different, and needs different approach.
Strong herbal solutions can cause more issue than benefit when Inflammed. Pro-biotics also tend to cause more people issue than benefit when inflammed, down the track when inflammation is reduced there are quite a few that pro-biotics work well.
Read the posts/ topic areas aimed at new people, read the subsequent discussions as quite a few of your questions may be answered, if not, feel free to ask questions.
If you have the time, reading the posts in the success stories area will also give you info on how people got their wellness back, and how long it took...
Hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Ps - keep your expectations of your appointment with Mr Chevialler realistic.... There is no quick fix or guaranteed solution with things like this....
It takes weeks/months for the gut to heal once you are doing the right things...
It takes weeks/months for the gut to heal once you are doing the right things...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Jilly,
Welcome to the discussion board. Yes, gluten sensitivity is definitely associated with MC, and virtually all of us here are sensitive to gluten and have to avoid it. And it's not just the lactose in dairy products that cause us to react — most of us (but not all of us) produce antibodies to the main protein in all dairy products, namely casein. Therefore, most of us also have to avoid all dairy products, in addition to gluten. Many of us have other food sensitivities as well, but if we faithfully avoid all of them, all of our symptoms go away, and we are quite healthy.
Note that we don't heal overnight however. As Gabes mentioned, the digestive system usually heals slowly, so it takes months (and in some cases, years) to completely heal. Usually though, we begin to feel much better long before our intestines finish healing. Once we start avoiding the foods that are causing the inflammation, we soon begin to feel better (as you have already found), and the more we heal, the better we feel.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the discussion board. Yes, gluten sensitivity is definitely associated with MC, and virtually all of us here are sensitive to gluten and have to avoid it. And it's not just the lactose in dairy products that cause us to react — most of us (but not all of us) produce antibodies to the main protein in all dairy products, namely casein. Therefore, most of us also have to avoid all dairy products, in addition to gluten. Many of us have other food sensitivities as well, but if we faithfully avoid all of them, all of our symptoms go away, and we are quite healthy.
Note that we don't heal overnight however. As Gabes mentioned, the digestive system usually heals slowly, so it takes months (and in some cases, years) to completely heal. Usually though, we begin to feel much better long before our intestines finish healing. Once we start avoiding the foods that are causing the inflammation, we soon begin to feel better (as you have already found), and the more we heal, the better we feel.
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.
Hey Everyone, my name is Jeff and I am new to the forum. I was diagnosed with Lymphocytic Colitis in September 2013 after struggling with misdiagnoses from many years. I've been having off and on flares really bad for the past 4+ weeks and am really glad I found this site because I had been looking for a while now with no luck.
When first diagnosed I was put on Entocort for 4 weeks and it really helped but my doctor took me off of it and said to just use Imodium as needed. That kind of worked for a while but just doesn't cut it most of the time. As for diet, I've cut out all caffeine, dairy, processed foods, and spicy/greasy foods. I've been considering cutting out gluten for a while now and from what I've read on here it sounds like a good idea. I eat a lot of rice, lean proteins, and cooked vegetables.
I'm currently looking for a new doctor as my current doctor doesn't seem to take this disease very seriously. He seems like he's more concerned with Crohn's and UC and acts like MC isn't that big of a deal. I've tried to make appointments when having a flare and usually have to schedule it out 2-4 weeks to meet with the doctor, which isn't any help at all if I'm in the middle of a flare. Hopefully the next doctor I find will listen to me more and take this disease a more serious.
I'm really thankful I found this site and look forward to finding out more about more ways to help control my symptoms.
When first diagnosed I was put on Entocort for 4 weeks and it really helped but my doctor took me off of it and said to just use Imodium as needed. That kind of worked for a while but just doesn't cut it most of the time. As for diet, I've cut out all caffeine, dairy, processed foods, and spicy/greasy foods. I've been considering cutting out gluten for a while now and from what I've read on here it sounds like a good idea. I eat a lot of rice, lean proteins, and cooked vegetables.
I'm currently looking for a new doctor as my current doctor doesn't seem to take this disease very seriously. He seems like he's more concerned with Crohn's and UC and acts like MC isn't that big of a deal. I've tried to make appointments when having a flare and usually have to schedule it out 2-4 weeks to meet with the doctor, which isn't any help at all if I'm in the middle of a flare. Hopefully the next doctor I find will listen to me more and take this disease a more serious.
I'm really thankful I found this site and look forward to finding out more about more ways to help control my symptoms.
Jeff,
Welcome, so glad you found us, sorry you had to
You have come to the right place!!!
Read, read and read.....
I'm sure 99% of us have to go off of gluten, a lot (including me) have to go dairy free also and quite a few cannot tolerate soy (which by the way is in everything)!!
I was where you are, as was everyone here at one time.
If you will read and do as they suggest you will feel soooo much better.
Also Tex has written a book that you can order that explains so much.
Look for the title in the right hand corner of the page.
We are all different, so what works for one doesn't always work for all of us, but in reading you will see yourself in certain situations mentioned and can go from there and try different things.
Welcome and happy healing,
Connie
Welcome, so glad you found us, sorry you had to
You have come to the right place!!!
Read, read and read.....
I'm sure 99% of us have to go off of gluten, a lot (including me) have to go dairy free also and quite a few cannot tolerate soy (which by the way is in everything)!!
I was where you are, as was everyone here at one time.
If you will read and do as they suggest you will feel soooo much better.
Also Tex has written a book that you can order that explains so much.
Look for the title in the right hand corner of the page.
We are all different, so what works for one doesn't always work for all of us, but in reading you will see yourself in certain situations mentioned and can go from there and try different things.
Welcome and happy healing,
Connie
Live, Laugh & Love Much
Hey Jeff- It's so annoying when you can't get an appointment when you are really in a bad way.
Two months ago I would have told you that gluten was not my problem.
Well- that's easy to trick yourself to believe when you see salad greens in the toilet- but not Ritz crackers.
Now that I've been avoiding gluten for over a month- it's quite clear that it was a very big problem in my body. Healing is happening slowly but surely. I also think I experienced some gluten withdrawal as I was really off (weak, dizzy, sleepy) in the first weeks after quitting.
Glad that you are here!
-Sarah
Two months ago I would have told you that gluten was not my problem.
Well- that's easy to trick yourself to believe when you see salad greens in the toilet- but not Ritz crackers.
Now that I've been avoiding gluten for over a month- it's quite clear that it was a very big problem in my body. Healing is happening slowly but surely. I also think I experienced some gluten withdrawal as I was really off (weak, dizzy, sleepy) in the first weeks after quitting.
Glad that you are here!
-Sarah
Hi Jeff - welcome to the site. I'm somewhat of a newbie too. Have only been on here since early November. My latest flare started 3 months ago and while things are much better now in frequency, I am still seeing reactions when trying to introduce foods. I was basically on bananas, rice, broth, Chex cereal, and almond milk for most of that time, and have lost 28 lbs. Since I've been able to add in some protein my weight is stabilizing, but haven't tolerated many vegetables so far.
One thing you will learn is that even when your symptoms seem to go away, it doesn't mean your colon has healed yet, hence the reason for adding foods back in very slowly and only as tolerated.
I wish you well in your venture. This forum is packed full of information, both from the standpoint of someone still flaring, and those who are in remission. This was kind of confusing to me at first when seeing all the foods they were eating and I just couldn't tolerate them. But the more you read, the easier it will become. At a minimum I would suggest going off of gluten, dairy, soy and eggs and anything that contains fiber (which aggravates an inflamed colon). There are some very knowledgeable and compassionate folks on this forum. You will be so grateful you found us!
Judy
One thing you will learn is that even when your symptoms seem to go away, it doesn't mean your colon has healed yet, hence the reason for adding foods back in very slowly and only as tolerated.
I wish you well in your venture. This forum is packed full of information, both from the standpoint of someone still flaring, and those who are in remission. This was kind of confusing to me at first when seeing all the foods they were eating and I just couldn't tolerate them. But the more you read, the easier it will become. At a minimum I would suggest going off of gluten, dairy, soy and eggs and anything that contains fiber (which aggravates an inflamed colon). There are some very knowledgeable and compassionate folks on this forum. You will be so grateful you found us!
Judy
Hi Jeff,
Welcome aboard. You have received a number of excellent responses, so I don't have much to add at this point.
Your comment about appointments is right on target. So many GI specialists are apparently so busy treating cancer and Crohn's patients that they almost seem prejudiced against anyone who has a disease that is typically not fatal. It's a shame that they can't spend a few weeks actually living with this debilitating disease, because if that were a requirement for receiving a certification as a gastroenterology specialist, they would have a totally different level of respect for this disease.
Again, welcome to the group, and I hope that you will find the solutions that you are seeking here, so that you can get your life back.
Tex
Welcome aboard. You have received a number of excellent responses, so I don't have much to add at this point.
Your comment about appointments is right on target. So many GI specialists are apparently so busy treating cancer and Crohn's patients that they almost seem prejudiced against anyone who has a disease that is typically not fatal. It's a shame that they can't spend a few weeks actually living with this debilitating disease, because if that were a requirement for receiving a certification as a gastroenterology specialist, they would have a totally different level of respect for this disease.
Again, welcome to the group, and I hope that you will find the solutions that you are seeking here, so that you can get your life back.
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.
Appreciative newbie with a request for advice about vitamins
I am so appreciative of this website, all the posts and Tex's book!!!
[b]Background:[/b] What a lifesaver you all are as I await test results on celiac disease and Enterolab in my ninth week of "poor guts" as my sis says and "UD (urgent diarrhea) due most likely to MC" as my GE terms it. I am much better having eliminated the NSAIDs and Prevacid which seem to have triggered this overt symptom and stopping the BRAT diet recommended. by my GE which worsened things..I am managing better on cold-pressed apple juice, probiotics of the L. variety, almond flour, egg whites and almost ripe bananas daily. (Of course I am off gluten, dairy, processed foods, soy, everything I could find on this forum to eliminate!) I have sublingual vitamin B and D.
[b]Concern:[/b] I am concerned about not getting vitamin C, A, E and calcium. When I try anything with vitamin C in it (citric juice or tablet) or a MVI or any sort of oil (be it flax or fish oil or nut butter) my symptoms recur immediately. The almond milk I found has locust bean gum and gellan gum which are not recommended. And I can't swallow pills!
[b]Advice please:[/b] Have you found any forms of C, A, E and calcium which work well with MC? Since the Enterolab tests won't be back for a couple of weeks and I too work to earn a living, would really appreciate the advice.
I have never posted on a forum and am computer-ignorant so please feel free to correct me if I am in the wrong spot.
Thanks much,
Misty
[b]Background:[/b] What a lifesaver you all are as I await test results on celiac disease and Enterolab in my ninth week of "poor guts" as my sis says and "UD (urgent diarrhea) due most likely to MC" as my GE terms it. I am much better having eliminated the NSAIDs and Prevacid which seem to have triggered this overt symptom and stopping the BRAT diet recommended. by my GE which worsened things..I am managing better on cold-pressed apple juice, probiotics of the L. variety, almond flour, egg whites and almost ripe bananas daily. (Of course I am off gluten, dairy, processed foods, soy, everything I could find on this forum to eliminate!) I have sublingual vitamin B and D.
[b]Concern:[/b] I am concerned about not getting vitamin C, A, E and calcium. When I try anything with vitamin C in it (citric juice or tablet) or a MVI or any sort of oil (be it flax or fish oil or nut butter) my symptoms recur immediately. The almond milk I found has locust bean gum and gellan gum which are not recommended. And I can't swallow pills!
[b]Advice please:[/b] Have you found any forms of C, A, E and calcium which work well with MC? Since the Enterolab tests won't be back for a couple of weeks and I too work to earn a living, would really appreciate the advice.
I have never posted on a forum and am computer-ignorant so please feel free to correct me if I am in the wrong spot.
Thanks much,
Misty
Hi Misty,
Welcome to our Internet family. And thank you for the kind words.
IMO, there is little point in worrying about the possibilities of deficiencies of most vitamins and minerals until we have done enough healing that our ability to absorb nutrients has improved significantly. If you have actual test results that show a significant deficiendy, that's a different situation, and it should be addressed. But normally, it takes a long time with poor digestion to cause a serious vitamin or mineral defficiency. Vitamin D is an exception, because vitamin D is vital for the proper functioning of the immune system. And most people in the general population are low on magnesium. But unless you are having problems with nighttime leg or foot cramps, it's probably better to wait for remission before attempting to use a magnesium supplement. If you want to use one, topical applications are much safer than oral supplementation, because in significant doses, magnesium is a good laxative.
Regarding the specific vitamins and mineral you mentioned: as long as we are still reacting, most of those vitamins will just go right through us anyway. Not only that, but vitamin C in significant amounts is known to cause diarrhea when our intestines are inflamed. It's pretty easy to accidentally get enough vitamin A from our diet, and while enough vitamin D will virtually guarantee that whatever amount of calcium is in our normal diet will be adequate for our needs (including good bone density), vitamin A antagonizes the ability of vitamin D to enhance calcium absorption, so vitamin A is best avoided for that reason. Virtually all vitamin E supplements are derived from soy, as far as I am aware.
Again, welcome aboard, and please feel free to ask anything.
Tex
P. S. Most members seem to prefer to post in the Main Message Board, so posting there will probably bring more responses, since many members don't seem to check all of the forums for new posts.
Welcome to our Internet family. And thank you for the kind words.
IMO, there is little point in worrying about the possibilities of deficiencies of most vitamins and minerals until we have done enough healing that our ability to absorb nutrients has improved significantly. If you have actual test results that show a significant deficiendy, that's a different situation, and it should be addressed. But normally, it takes a long time with poor digestion to cause a serious vitamin or mineral defficiency. Vitamin D is an exception, because vitamin D is vital for the proper functioning of the immune system. And most people in the general population are low on magnesium. But unless you are having problems with nighttime leg or foot cramps, it's probably better to wait for remission before attempting to use a magnesium supplement. If you want to use one, topical applications are much safer than oral supplementation, because in significant doses, magnesium is a good laxative.
Regarding the specific vitamins and mineral you mentioned: as long as we are still reacting, most of those vitamins will just go right through us anyway. Not only that, but vitamin C in significant amounts is known to cause diarrhea when our intestines are inflamed. It's pretty easy to accidentally get enough vitamin A from our diet, and while enough vitamin D will virtually guarantee that whatever amount of calcium is in our normal diet will be adequate for our needs (including good bone density), vitamin A antagonizes the ability of vitamin D to enhance calcium absorption, so vitamin A is best avoided for that reason. Virtually all vitamin E supplements are derived from soy, as far as I am aware.
Again, welcome aboard, and please feel free to ask anything.
Tex
P. S. Most members seem to prefer to post in the Main Message Board, so posting there will probably bring more responses, since many members don't seem to check all of the forums for new posts.
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.