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New Member from Cape Town, South Africa with Many Questions!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Althea Baillie
- Posts: 7
- Joined: Mon Mar 12, 2012 1:04 pm
New Member from Cape Town, South Africa with Many Questions!
Hello everyone. So delighted to have found this site as I really thought I was the only person in the world with this problem. I'm a 59 year old female and was diagnosed with MC about 3 years ago on colonoscopy and biopsy. Initially I was treated with Prednisone and then Pentasa and all was well for approx. 1 year. Since then have had 2 alarming relapses and on both occasions was stabilised with large doses of Prednisone and then put on Pentasa again. About 2 months ago the D returned with a vengeance and I seem totally unable to control it. The whole concept of GF is totally new to me as my GIT doctor assured me that what I eat has no effect on my symptoms - I gather from reading other posts that that is simply not true! Anyway I suppose what I'm saying is that I desperately need help and advice. I have no idea what triggers the D so apart from the approx 6 -8 Imodium I'm taking daily I really don't know what to eat. Can I eventually manage the MC on diet alone? At present I've stopped all meds as they don't seem to work anyway except the Prednisone which I'm really not keen on as my bones are already at risk. All suggestions/advice will be gratefully received! Althea
Hello Althea,
Welcome to our internet family. At one time, I felt the same way, that I was probably the only person in the world with this disease - as you know, it's an extremely lonely feeling. Actually, though, there are thousands of us, and the numbers are increasing daily.
And, you are correct - most gastroenterologists are unable to properly treat this disease because their medical training is inadequate and incorrect. Yes, you can treat the disease yourself, by diet alone, or by using a combination of medications and diet. If meds no longer work for you, though, then there is not much use in taking them. Your doctor should have prescribed Entocort, (budesonide), rather than Prednisone, as budesonide is much safer than Prednisone, with far fewer side effect risks, and especially a lower risk of osteoporosis. Please don't stop taking Prednisone all at once, though, because as you probably know, that can cause severe withdrawal symptoms if you have been on it very long. A careful tapered withdrawal program is necessary, so that your body can slowly adjust to doing without the drug. If you adopt the diet now, hopefully by the time you taper the dose to a low level, the diet will be able to maintain remission. It usually takes several months for the diet to work, because it takes a long time for intestinal damage from gluten to heal.
It's possible to order stool tests from a lab in Dallas, Texas that can accurately detect certain food sensitivities, but many of us figure them out by doing an elimination diet, and then introducing foods one at a time, to determine ones that cause problems. Keeping a food/reactioin diary can be a big help, because sometimes reactions are delayed.
Basically, most of us are sensitive to gluten, and casein, (the primary protein in all dairy products), and about half of us are sensitive to soy. Many of us have additional food sensitivities, also, but gluten, casein and soy are usually the main problems. Also, please be aware that we are very sensitive to these foods, and in most cases, even trace amounts can cause a reaction, or prevent us from achieving remission. We even have to carefully review the labels on vitamins and supplements, for example, because traces of these foods are everywhere.
What most doctors don't realize is that when the genes that predispose to MC are triggered, the genes that predispose to certain food-sensitivities are also triggered in most cases. Also, be aware that certain medications can cause the disease. NSAIDs, PPIs, SSRIs, statins, bispholphonates, etc., have all been associated with causing the disease for some people. In some cases, just stopping the use of the medications is sufficient to bring remission, without additional intervention. In other cases, food-sensitivities develop, if the drug is taken long enough.
Yes, many of us have been able to achieve remission, and remain in remission by diet changes, alone.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. At one time, I felt the same way, that I was probably the only person in the world with this disease - as you know, it's an extremely lonely feeling. Actually, though, there are thousands of us, and the numbers are increasing daily.
And, you are correct - most gastroenterologists are unable to properly treat this disease because their medical training is inadequate and incorrect. Yes, you can treat the disease yourself, by diet alone, or by using a combination of medications and diet. If meds no longer work for you, though, then there is not much use in taking them. Your doctor should have prescribed Entocort, (budesonide), rather than Prednisone, as budesonide is much safer than Prednisone, with far fewer side effect risks, and especially a lower risk of osteoporosis. Please don't stop taking Prednisone all at once, though, because as you probably know, that can cause severe withdrawal symptoms if you have been on it very long. A careful tapered withdrawal program is necessary, so that your body can slowly adjust to doing without the drug. If you adopt the diet now, hopefully by the time you taper the dose to a low level, the diet will be able to maintain remission. It usually takes several months for the diet to work, because it takes a long time for intestinal damage from gluten to heal.
It's possible to order stool tests from a lab in Dallas, Texas that can accurately detect certain food sensitivities, but many of us figure them out by doing an elimination diet, and then introducing foods one at a time, to determine ones that cause problems. Keeping a food/reactioin diary can be a big help, because sometimes reactions are delayed.
Basically, most of us are sensitive to gluten, and casein, (the primary protein in all dairy products), and about half of us are sensitive to soy. Many of us have additional food sensitivities, also, but gluten, casein and soy are usually the main problems. Also, please be aware that we are very sensitive to these foods, and in most cases, even trace amounts can cause a reaction, or prevent us from achieving remission. We even have to carefully review the labels on vitamins and supplements, for example, because traces of these foods are everywhere.
What most doctors don't realize is that when the genes that predispose to MC are triggered, the genes that predispose to certain food-sensitivities are also triggered in most cases. Also, be aware that certain medications can cause the disease. NSAIDs, PPIs, SSRIs, statins, bispholphonates, etc., have all been associated with causing the disease for some people. In some cases, just stopping the use of the medications is sufficient to bring remission, without additional intervention. In other cases, food-sensitivities develop, if the drug is taken long enough.
Yes, many of us have been able to achieve remission, and remain in remission by diet changes, alone.
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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Gabes-Apg
- Emperor Penguin
- Posts: 8367
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
welcome Althea
i am eastwards across the ocean in Australia.
I am one who managed MC (and got to remission) via Diet, Natural Supplements, Natural Therapy. i used a small amount of meds in the first 3 months, but it was not steroid based
I couldnt afford the stool testing that others here have done, so i eliminated the food items that majority of people here could not tolerate. Gluten, uncooked fruit, green vegetables, legumes, salad, etc. and over the period of 9 months the other major triggers revealed themselves, Yeast, Dairy, Soy
I kept a food diary, tracked symptoms and reactions and figured out an eating plan that worked for me, that suited budget and work needs. It is off a small base of ingredients (5 - 7 vegetables, all the proteins, few flours)
For the first 12 months, I focussed on eating low inflammation easy to digest meals to allow the gut to heal. back then and even at times now, when i am feeling poorly I mash the food up (like baby food) to make it easy to digest.
adopting an eating plan like this may seem drastic, and it is a big change and adjustment, to your brain, tastebuds, socialisation, to your life. but once the inflammation is gone, and the gut has healed then you can introduce other foods and you will get your life back.
hope this helps, feel free to ask questions
take care
i am eastwards across the ocean in Australia.
I am one who managed MC (and got to remission) via Diet, Natural Supplements, Natural Therapy. i used a small amount of meds in the first 3 months, but it was not steroid based
I couldnt afford the stool testing that others here have done, so i eliminated the food items that majority of people here could not tolerate. Gluten, uncooked fruit, green vegetables, legumes, salad, etc. and over the period of 9 months the other major triggers revealed themselves, Yeast, Dairy, Soy
I kept a food diary, tracked symptoms and reactions and figured out an eating plan that worked for me, that suited budget and work needs. It is off a small base of ingredients (5 - 7 vegetables, all the proteins, few flours)
For the first 12 months, I focussed on eating low inflammation easy to digest meals to allow the gut to heal. back then and even at times now, when i am feeling poorly I mash the food up (like baby food) to make it easy to digest.
adopting an eating plan like this may seem drastic, and it is a big change and adjustment, to your brain, tastebuds, socialisation, to your life. but once the inflammation is gone, and the gut has healed then you can introduce other foods and you will get your life back.
hope this helps, feel free to ask questions
take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Althea welcome from New Hampshire (Near Boston) you most certainly are not alone at all. Most GI doctors do not at least for now, believe that diet has anything to do with symptoms. Well that's like saying that the air you breath has nothing to do with asthma...
Certainly the prednisone is a big gun medicine with lots of side effects, you may want to ask and check if Entocort is available, I'm not sure thats the name of the med there, but I know it's also called Budenofalk in parts of Europe.
The primary goal should be to eliminate the foods that are bothering you and for a majority of us it's gluten, which can be found in wheat products, rye and barley. So anything with wheat flour or the rye and barley should be avoided.
In addition to the gluten contains products, two other ingredients seem to cause a large number of us issues, soy and dairy.
Early on to get a handle on this the best thing to do is get used to reading all ingredients listings on your food packages, looking for wheat, flour, rye, barley, soy or dairy products. I found during this time the best thing was to be sure to cook my own foods from simple fresh ingredients. Try to avoid anything that has been made in a factory as its hard to tell what's really in the package. Eating out can also be tricky unless you know that the chef can eliminate these ingredients while preparing your meal. Typically eating out can be tricky especially early on.
Additionally early on since things are inflamed and irritated, its best to eliminate raw fruits or vegetables for the first number of months, especially while your letting your GI system heal. Its not that you are reacting to raw fruits and vegables but when they are raw they tend to be abrasive to the GI tract and act more as a mechanical irritant. As you heal and it may take a year for things to truly settle down and in that time diet is key. I still buy fresh produce but am carefull to cook it fully till soft.
Continue on the fresh foods diet for a few months or more and after you feel things have settled down try challenging one ingredient at a time, for instance add some dairy back in small amounts for a week or so and see if that made your symptoms worse. Next you could challenge soy products and even gluten, although nearly 100% of us react to gluten and something like 70%, or possibly more, react to soy and dairy. The goal in this first stage is to go back to a simple fresh foods diet with a simple set of safe ingredients and then slowly and methodically add one item back at a terms. Many of us keep a food diary so we can look back and see what we have eaten and how it affected us.
I'm sure this seems like a lot right now, feel free to ask anything, all of us have been or are going through what you are dealing with right now.
Certainly the prednisone is a big gun medicine with lots of side effects, you may want to ask and check if Entocort is available, I'm not sure thats the name of the med there, but I know it's also called Budenofalk in parts of Europe.
The primary goal should be to eliminate the foods that are bothering you and for a majority of us it's gluten, which can be found in wheat products, rye and barley. So anything with wheat flour or the rye and barley should be avoided.
In addition to the gluten contains products, two other ingredients seem to cause a large number of us issues, soy and dairy.
Early on to get a handle on this the best thing to do is get used to reading all ingredients listings on your food packages, looking for wheat, flour, rye, barley, soy or dairy products. I found during this time the best thing was to be sure to cook my own foods from simple fresh ingredients. Try to avoid anything that has been made in a factory as its hard to tell what's really in the package. Eating out can also be tricky unless you know that the chef can eliminate these ingredients while preparing your meal. Typically eating out can be tricky especially early on.
Additionally early on since things are inflamed and irritated, its best to eliminate raw fruits or vegetables for the first number of months, especially while your letting your GI system heal. Its not that you are reacting to raw fruits and vegables but when they are raw they tend to be abrasive to the GI tract and act more as a mechanical irritant. As you heal and it may take a year for things to truly settle down and in that time diet is key. I still buy fresh produce but am carefull to cook it fully till soft.
Continue on the fresh foods diet for a few months or more and after you feel things have settled down try challenging one ingredient at a time, for instance add some dairy back in small amounts for a week or so and see if that made your symptoms worse. Next you could challenge soy products and even gluten, although nearly 100% of us react to gluten and something like 70%, or possibly more, react to soy and dairy. The goal in this first stage is to go back to a simple fresh foods diet with a simple set of safe ingredients and then slowly and methodically add one item back at a terms. Many of us keep a food diary so we can look back and see what we have eaten and how it affected us.
I'm sure this seems like a lot right now, feel free to ask anything, all of us have been or are going through what you are dealing with right now.
Joe
Althea - welcome. I have had a real struggle trying to modify my diet and get this illness under control. I have C dominated MC, with bad GERD and, I suspect Barrett's esophagus, though I cannot get my doctor to confirm the diagnosis.
I tried prednisone, but it didn't help much, and coming off it was excruciatingly painful. Then I tried entocort but became even more constipated. Couldn't dig myself out with a pick! Never again.
I have done the tests, and am battling to find the diet that works for me. It's tough going, but those who have managed it always encourage me to keep going and believe that things will get better.
I tried prednisone, but it didn't help much, and coming off it was excruciatingly painful. Then I tried entocort but became even more constipated. Couldn't dig myself out with a pick! Never again.
I have done the tests, and am battling to find the diet that works for me. It's tough going, but those who have managed it always encourage me to keep going and believe that things will get better.