New Member
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
New Here and suffering from Collangenous Colitis
I don't know where to start? I tried juicing, but so far still have D. Today started taking Pepto Bismol Tabs. My doctor suggested Prednisone and I prefer to treat this without drugs. Just need someone who has CC and has had success to tell me what they ate to get the D under control.
Jo Lynn
Jo Lynn, you have found the best place in the world for information and support. Please read the information for newbies for a start.
I am controlling my MC by diet alone as are Tex, Polly and Stanz. (I'm sure ther are others.) It was very slow going and I still have problems even after 2 years of being gluten, dairy, and worst of all, soy free.
Read as much as you can here and at www.enterolab.com
I am controlling my MC by diet alone as are Tex, Polly and Stanz. (I'm sure ther are others.) It was very slow going and I still have problems even after 2 years of being gluten, dairy, and worst of all, soy free.
Read as much as you can here and at www.enterolab.com
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi Jo Lynn,
Welcome aboard. Basically, most of us have to avoid gluten, (wheat, rye, and barley protein), and casein, (milk protein, in all dairy products), and about half of us have to avoid all products that contain any form of soy. We also have to minimize our fiber intake, and some members have to take other precautions.
I'm moving your post to the Main Message Board, because more members will notice it there.
Please feel free to ask anything. You'll find some meal suggestions here, especially in the earlier posts, (farther down the page):
http://www.perskyfarms.com/phpBB2/viewforum.php?f=53
The Pepto-Bismol treatment usually works, (8 tablets per day), but most people tend to relapse after the treatment ends, unless they are carefully following a diet plan which avoids the foods to which they are sensitive.
Tex
Welcome aboard. Basically, most of us have to avoid gluten, (wheat, rye, and barley protein), and casein, (milk protein, in all dairy products), and about half of us have to avoid all products that contain any form of soy. We also have to minimize our fiber intake, and some members have to take other precautions.
I'm moving your post to the Main Message Board, because more members will notice it there.
Please feel free to ask anything. You'll find some meal suggestions here, especially in the earlier posts, (farther down the page):
http://www.perskyfarms.com/phpBB2/viewforum.php?f=53
The Pepto-Bismol treatment usually works, (8 tablets per day), but most people tend to relapse after the treatment ends, unless they are carefully following a diet plan which avoids the foods to which they are sensitive.
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.
Hi Jo Lynn !! Happy to meet you, I am new here also BUT already feel at home and much more educated than before I became a member !!
I also have CC...was treated with entocort in '08, unfortunately when the course of treatment was finished all my symptoms returned. I did manage to contol the symptoms for a short time with a pro-biotic daily and pepto bismol...until a few weeks ago when I had a sudden flare up ( worst ever ) for no apparent reason.
I could never identify any 'trigger foods', I could eat something one day and be fine, then eat the very same things the next day and be sick as a dog. I could eat a huge spaghetti dinner with salad and garlic bread and experiece no symptoms what so ever, but there were also days I could just drink a small glass of water and the "D", pain and bloating would start...SO I am not one to advise you on what to eat for CC as I am still searching for that answer myself, however there are many ppl here very experienced with diets to manage the horrible symptoms of MC. Just wanted to wish you well and welcome you to the group
Memory
I also have CC...was treated with entocort in '08, unfortunately when the course of treatment was finished all my symptoms returned. I did manage to contol the symptoms for a short time with a pro-biotic daily and pepto bismol...until a few weeks ago when I had a sudden flare up ( worst ever ) for no apparent reason.
I could never identify any 'trigger foods', I could eat something one day and be fine, then eat the very same things the next day and be sick as a dog. I could eat a huge spaghetti dinner with salad and garlic bread and experiece no symptoms what so ever, but there were also days I could just drink a small glass of water and the "D", pain and bloating would start...SO I am not one to advise you on what to eat for CC as I am still searching for that answer myself, however there are many ppl here very experienced with diets to manage the horrible symptoms of MC. Just wanted to wish you well and welcome you to the group
Memory
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Gday JoLynn
warm welcome from Australia
i would love to be able to give you the guarenteed solution for the D, the slight hiccup is that we are all different, and getting control on MC and stopping the D is slightly different for each of us.
for the majority of people, going to a very basic easy to digest type diet is a good starting point. (as I said this works for most it is not 100% guarenteed)
For me, things like gooey rice (rice cooked with home made stock do not strain or rinse the rice) poached chicken or well cooked fleshy fish.
your digestion is under stress so having easy to digest foods with minimal ingredients (yep like when babies first start eating solids) small meal sizes. clear juice and minimising fibre
it takes a bit of time, ie a day or two, but you should notice improvement.
I was diagnosed in December 09, i used a small amount of meds at first (lomotil, questran) and focussed on diet management as my main tool. I elminated Gluten, yeast and lactose at first, and within 4 months realised that i could not tolerate dairy or soy as well.
I only use small amount of questran for times that i accidently get glutened or when i recently travelled to france for work (36hour transit!)
majority of my meals consist of well cooked meat and veges (the meat and veges i can tolerate) eggs, fish, home made savoury muffins, clear juice, and black coffee of a morning.
It is a BIG BIG change, it changes your social life, work life, home life. It was proably easy for me as i have always been an organised think ahead type person.
hope this helps, feel free to ask any questions
and in the words of the awesomely wise tex - you will get your life back!!
warm welcome from Australia
i would love to be able to give you the guarenteed solution for the D, the slight hiccup is that we are all different, and getting control on MC and stopping the D is slightly different for each of us.
for the majority of people, going to a very basic easy to digest type diet is a good starting point. (as I said this works for most it is not 100% guarenteed)
For me, things like gooey rice (rice cooked with home made stock do not strain or rinse the rice) poached chicken or well cooked fleshy fish.
your digestion is under stress so having easy to digest foods with minimal ingredients (yep like when babies first start eating solids) small meal sizes. clear juice and minimising fibre
it takes a bit of time, ie a day or two, but you should notice improvement.
I was diagnosed in December 09, i used a small amount of meds at first (lomotil, questran) and focussed on diet management as my main tool. I elminated Gluten, yeast and lactose at first, and within 4 months realised that i could not tolerate dairy or soy as well.
I only use small amount of questran for times that i accidently get glutened or when i recently travelled to france for work (36hour transit!)
majority of my meals consist of well cooked meat and veges (the meat and veges i can tolerate) eggs, fish, home made savoury muffins, clear juice, and black coffee of a morning.
It is a BIG BIG change, it changes your social life, work life, home life. It was proably easy for me as i have always been an organised think ahead type person.
hope this helps, feel free to ask any questions
and in the words of the awesomely wise tex - you will get your life back!!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Welcome!
All kinds of useful information on this site. I don't know what I would have done without it!
We are all different.. one thing you will learn.. if you aren't already patient and diligent.. you will be by the time you find the right choices to get your life back.
I am one who take entocort ec. My GI doc is amazed that any doctor is still prescribing prednisone for CC. He claims it is just too dangerous to use when entocort works so well.
If any doc tells you to up your intake of fiber.. you have the wrong doctor! There are so few who know anything about CC/MC. Oh they might actually get it diagnosed for you but have no clue how to treat it.. and it can't be cured..no matter what they say... controlled, yes.. cured...no.
I used lomotil for a couple of years until entocort came back on the market in the US. Sure made me tired but there was some relief.
grannyh
All kinds of useful information on this site. I don't know what I would have done without it!
We are all different.. one thing you will learn.. if you aren't already patient and diligent.. you will be by the time you find the right choices to get your life back.
I am one who take entocort ec. My GI doc is amazed that any doctor is still prescribing prednisone for CC. He claims it is just too dangerous to use when entocort works so well.
If any doc tells you to up your intake of fiber.. you have the wrong doctor! There are so few who know anything about CC/MC. Oh they might actually get it diagnosed for you but have no clue how to treat it.. and it can't be cured..no matter what they say... controlled, yes.. cured...no.
I used lomotil for a couple of years until entocort came back on the market in the US. Sure made me tired but there was some relief.
grannyh
Welcome!
CAN EAT:
• Rice boiled/steamed or fried in olive oil, rice (not wheat) noodles.
• Grilled, fried or baked (unprocessed) meat, fish, shellfish: these can be seasoned/marinated with salt, pepper, herbs, garlic, dried coconut, onions and any vinegar (except malt vinegar) – but NO soy or Worcester source or MSG. Only olive oil (not other vegetable oils). Balsamic oil if pure, but not when artificially coloured since that contains gluten.
• Any well cooked (peeled) vegetables EXCEPT beans, peas, tomatoes, potatoes and peppers
• Any cooked mushrooms.
• Cooked fruits (fruits with skins peeled)
• Olives and nuts (except peanuts and cashew nuts)
• Herbs, salt and pepper
• Wine, coconut milk (no guar gum added), green tea, pure coco and black coffee.
CAN EAT IN SMALL AMOUNTS:
• Cane Sugar, glucose, fructose, pure maple syrup, honey.
CANNOT EAT
• Gluten (and similar) – wheat, rye, oat, corn, semolina, and other seed based flour, bread, cakes, biscuits, pasta, cuscus, tapioca, beer, malt vinegar. (Can have rice cakes, rice flour and pasta, water chestnut flour)
• Dairy – milk, cream, butter, cheese.
• Beans, peas, guar gum, peanuts (legumes) – including Soy, Soya e.g. Tofu.
• Eggs and Nightshades (potatoes, tomatoes and peppers).
• Raw vegetables including salads – vegetables should be well cooked.
• Cashew nuts and peanuts.
• High fructose corn syrup, aspartame
• Vegetable oils – except Olive Oil, which is fine.
Best wishes on your journey to remission. Ant
As has been said we are all different.....I am unlucky to have multiple intolerances (it seems). So my diet is pretty stricked.... and I have used entocort for just over a year (now tapered down to just one pill every other day). This has over time gradually got D (on most days) under controlled and brought my life back.tell me what they ate to get the D under control.
CAN EAT:
• Rice boiled/steamed or fried in olive oil, rice (not wheat) noodles.
• Grilled, fried or baked (unprocessed) meat, fish, shellfish: these can be seasoned/marinated with salt, pepper, herbs, garlic, dried coconut, onions and any vinegar (except malt vinegar) – but NO soy or Worcester source or MSG. Only olive oil (not other vegetable oils). Balsamic oil if pure, but not when artificially coloured since that contains gluten.
• Any well cooked (peeled) vegetables EXCEPT beans, peas, tomatoes, potatoes and peppers
• Any cooked mushrooms.
• Cooked fruits (fruits with skins peeled)
• Olives and nuts (except peanuts and cashew nuts)
• Herbs, salt and pepper
• Wine, coconut milk (no guar gum added), green tea, pure coco and black coffee.
CAN EAT IN SMALL AMOUNTS:
• Cane Sugar, glucose, fructose, pure maple syrup, honey.
CANNOT EAT
• Gluten (and similar) – wheat, rye, oat, corn, semolina, and other seed based flour, bread, cakes, biscuits, pasta, cuscus, tapioca, beer, malt vinegar. (Can have rice cakes, rice flour and pasta, water chestnut flour)
• Dairy – milk, cream, butter, cheese.
• Beans, peas, guar gum, peanuts (legumes) – including Soy, Soya e.g. Tofu.
• Eggs and Nightshades (potatoes, tomatoes and peppers).
• Raw vegetables including salads – vegetables should be well cooked.
• Cashew nuts and peanuts.
• High fructose corn syrup, aspartame
• Vegetable oils – except Olive Oil, which is fine.
Best wishes on your journey to remission. Ant
- MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Morning and Welcome!
You have already received great advice and my main advice would be to read and research this board and you will be able to find an answer for almost any question and if you don't - then ask it. I am one who controls the disease by diet alone. The pills over the year did little for me until Entocort and with that I had bad side effects so needed to stop using it. I am in the minority on that but I know NY Barbara had the same problems.
I agree with those that said if a doc tells you to eat fibre - ditch him. It is very bad advice. Trying to sort out intolerances will take a while but a food journal will help a lot.
Have been here for years and hope you are too.
Maggie
You have already received great advice and my main advice would be to read and research this board and you will be able to find an answer for almost any question and if you don't - then ask it. I am one who controls the disease by diet alone. The pills over the year did little for me until Entocort and with that I had bad side effects so needed to stop using it. I am in the minority on that but I know NY Barbara had the same problems.
I agree with those that said if a doc tells you to eat fibre - ditch him. It is very bad advice. Trying to sort out intolerances will take a while but a food journal will help a lot.
Have been here for years and hope you are too.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
-
- Rockhopper Penguin
- Posts: 801
- Joined: Mon Apr 19, 2010 9:39 am
- Location: Creston British Columbia
Welcome JoLyn!
In addition to what others have said, I would add take a look at what vitamin and supplements you are taking as well. Some contain ingredients that you might be sensitive to (soy, dairy, corn, wheat). Magnesium can cause D... every individual has a certain level of tolerance to it before getting D.and if you need to take Magnesium (as I do for leg cramps and restless leg syndrome) you could look into taking it transdermally (rubbing magnesium "oil" into the skin, thereby bypassing the intestines altogether.) Also, though the concept of re-populating the gut with good bacteria through probiotics makes sense, some people have found probiotics only make them worse, while others can take them.
Although I tested postive for gluten intolernace with the Enterlab testing we talk about on here, I have found that I am far more sensitive to corn and caseain than I am to wheat. It is really a trial and error thing and I am in the same boat as Memory, still, finding it difficult to identify from one day to the next what is causing me to react. But if I eat only rice, chicken and bananas, I am fine.
I hope some of the information you get on here can help you find your way to health.
Linda
In addition to what others have said, I would add take a look at what vitamin and supplements you are taking as well. Some contain ingredients that you might be sensitive to (soy, dairy, corn, wheat). Magnesium can cause D... every individual has a certain level of tolerance to it before getting D.and if you need to take Magnesium (as I do for leg cramps and restless leg syndrome) you could look into taking it transdermally (rubbing magnesium "oil" into the skin, thereby bypassing the intestines altogether.) Also, though the concept of re-populating the gut with good bacteria through probiotics makes sense, some people have found probiotics only make them worse, while others can take them.
Although I tested postive for gluten intolernace with the Enterlab testing we talk about on here, I have found that I am far more sensitive to corn and caseain than I am to wheat. It is really a trial and error thing and I am in the same boat as Memory, still, finding it difficult to identify from one day to the next what is causing me to react. But if I eat only rice, chicken and bananas, I am fine.
I hope some of the information you get on here can help you find your way to health.
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama
Welcome Jo Lynn!
I was diagnosed one year ago and declined treatment with Asacol. I tried the Pepto Bismol treatment on and off but realized it was making me extremely bloated and uncomfortable. I've had much more success with diet, cutting out all gluten, yeast and lactose, and minimizing dairy and soy intake. Like many here, I got Enterolab testing after giving up on the detective skills of my regular doctors.
I still enjoy fruit, salads, a few other raw vegetables and nuts, and can drink distilled spirits and wine. Before cutting out gluten, all those foods seemed to make me sick. Staples include rice products, corn tortillas, potatoes, meats, fish, eggs, and gluten-free meal supplement bars when I'm on the run (i.e. Lara Bars, Kind bars, Nature's Valley nut crunch bars, fruit leathers). Gluten free soy sauces and marinades are also essential (San-J). I am able to drink almond milk, rice milk, and coconut milk beverages, but am just now learning about the need to avoid the additive Carageenan (it appears to be a potent intestinal irritant).
I try not to let the diet control my life, but it's better than having D control your life!!
I was diagnosed one year ago and declined treatment with Asacol. I tried the Pepto Bismol treatment on and off but realized it was making me extremely bloated and uncomfortable. I've had much more success with diet, cutting out all gluten, yeast and lactose, and minimizing dairy and soy intake. Like many here, I got Enterolab testing after giving up on the detective skills of my regular doctors.
I still enjoy fruit, salads, a few other raw vegetables and nuts, and can drink distilled spirits and wine. Before cutting out gluten, all those foods seemed to make me sick. Staples include rice products, corn tortillas, potatoes, meats, fish, eggs, and gluten-free meal supplement bars when I'm on the run (i.e. Lara Bars, Kind bars, Nature's Valley nut crunch bars, fruit leathers). Gluten free soy sauces and marinades are also essential (San-J). I am able to drink almond milk, rice milk, and coconut milk beverages, but am just now learning about the need to avoid the additive Carageenan (it appears to be a potent intestinal irritant).
I try not to let the diet control my life, but it's better than having D control your life!!
- Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Welcome JoLynn, you are certainly in the right place. I was diagnosed this past April and I am certain that the advice on this site has made dealing with this disease so much easier. I would definitely look at the dietary advice listed here as the most important aspect of managing MC. Beyond that we are all unique and may pursue different treatments.
Welcome and thanks for posting here.
--Joe
Welcome and thanks for posting here.
--Joe
Joe
Hi JoLynn,
Like most here, I don't eat dairy or gluten foods. That means strictly none of these ingredients. Something as simple as rice crackers with flavouring will have an impact.
The fastest way to a reprieve is by limiting your diet, and only adding in potential irritants once you have got things under control. A good way to start is with lots of rice to fill you up ( it is tolerated by almost everyone), eggs or meat for protein to stop you feeling hungry, and bananas are good as the potassium helps and they are low fibre. Low fibre vegies well cooked can also work - eg pumpkin cooked into a soup (with just water to start with). If you cook food using any stocks or flavouring you need to check them carefully for gluten. Most commercial stocks and sauces contain gluten.
Also check any drugs or vitamin supplements for gluten, dairy and soy.
For some people limiting your diet will bring about quite rapid results. Other people can take a long time. In that case you normally need to expand your diet a bit to ensure you are getting the vitamins you need, and to consider using entocort (the drug of choice around here).
Please report back to us with how you are going. Everyone is different, and it can take a while to sort out exactly what works for you. I was lucky and just two days of avoiding problem foods resulted in an improvement. Others have struggled for years. A later flare for me was caused by HRT treatment - even the patches cause me problems!
Good luck with improving your health.
Lyn
Like most here, I don't eat dairy or gluten foods. That means strictly none of these ingredients. Something as simple as rice crackers with flavouring will have an impact.
The fastest way to a reprieve is by limiting your diet, and only adding in potential irritants once you have got things under control. A good way to start is with lots of rice to fill you up ( it is tolerated by almost everyone), eggs or meat for protein to stop you feeling hungry, and bananas are good as the potassium helps and they are low fibre. Low fibre vegies well cooked can also work - eg pumpkin cooked into a soup (with just water to start with). If you cook food using any stocks or flavouring you need to check them carefully for gluten. Most commercial stocks and sauces contain gluten.
Also check any drugs or vitamin supplements for gluten, dairy and soy.
For some people limiting your diet will bring about quite rapid results. Other people can take a long time. In that case you normally need to expand your diet a bit to ensure you are getting the vitamins you need, and to consider using entocort (the drug of choice around here).
Please report back to us with how you are going. Everyone is different, and it can take a while to sort out exactly what works for you. I was lucky and just two days of avoiding problem foods resulted in an improvement. Others have struggled for years. A later flare for me was caused by HRT treatment - even the patches cause me problems!
Good luck with improving your health.
Lyn