Hello Everyone,
I am pleased to have found this group and have been reading for days. There is a wealth of information here and I am thankful for all the time and effort everyone has put into the research supplied here for us to navigate.
I am 42 years old and a mother of 3. I work and my children play multiple sports year round with the main one right now being baseball. This leaves me on baseball fields for games that last 2-2 1/2 hours and double headers and tournaments. MC is NOT the disease I was expecting to hear from my gastro doc last month.
I also have Thalassemia, Scoliosis, Exercise Induced Asthma, Fibromyalgia among other issues. I have been on dialysis in the past due to a reaction to Nsaids and my Naturopath says my body doesn't absorb calcium and b vitamins. Aside from my new diagnosis I live in pain every day and am chronically fatigued. I take a ton (over 70 pills a day) of supplements just to get out of bed and make it to work every day and I am dairy free and soy free and mostly grain free. A list of my supplements are:
Digestive Enzymes
Calcium
Probiotics
Magnesium
Glutamine
Turmeric
Cranberry
Ginger
B-12
Folic Acid
Hyland's Cell Salts
Alpha Lipoic Acid
Multi Vitamin
L-Carnitine
B-Complex
Glucosamine/Chond/MSM
L-Methionine
Fish/Flax Oil
Cytozyme AD
Vit E
Vit K
Vit A
CoQ10
Vit D3 5000 iu
I don't think I missed anything lol
Prescription meds are:
Topamax BID
Cyclobenzaprine BID
Budesonide 9 mg QD
Robinul BID
Zyrtec QD PM
Cholestyramine Powder
Balsalazide -not currently taking
Lyrica - not currently taking
3 Rx Antihistamines - not currently taking unless needed
Macrobid Antibiotic - not currently taking - taken prn for uti's
Nortriptyline - taken as needed to turn off my ADD at bedtime lol
I am going to try to cut my sugar some more and go completely Gluten Free. I already use agave in my decaf coffee every morning. My weakness is sweet tea from Chick Fil A, I usually have one a day. I am a creature of habit so my diet is really pretty simple. I eat oatmeal every single morning. On weekdays I eat grilled nuggets and a fruit cup from Chick fil A or a salad with grilled chicken. If I deviate it is to leftovers from home of a grilled meat or fish and either spinach, asparagus or broccoli. Dinner can vary a bit more being on the run with the kids but we try to keep it clean. I don't allow my kids to eat heavy on baseball days (weekends) so we take veggie trays, fruit and protein bars, peanut butter and jelly sandwiches, etc. No greasy, heavy, fast food/pizza.
My doctor took me off the Balsalazide to try Budesonide and it's not working AT ALL. I don't know how long it takes to start working but it's been 4 or 5 days and I had to use my Cholestyramine Powder but I try not to b/c it can bind me up if I'm not careful. So frustrating.
I prefer natural remedies to medications whenever possible. My dog has a protein losing disease and should have been dead a year ago but I have her on a combination of prescribed meds and supplements and she's still truckin' to all my veterinary co-worker's amazement :) She takes Glutamine too. ;)
So that's me, I am transparent so ask me anything. I'm open to any and all suggestions. I need some kind of normalcy ... not that I've ever been normal lol but I would like to be able to watch a whole baseball game.
Thanks for listening!
New, Frustrated & Distraught
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
New, Frustrated & Distraught
Becky
Diagnosed Microscopic Lymphocytic Colitis 4/2016
DF, SF
Diagnosed Microscopic Lymphocytic Colitis 4/2016
DF, SF
Hello Becky,
Welcome to our Internet family. Like many of us, you have your share of challenges, but you are motivated, and motivated people get results.
After reading your lists of supplements and meds, I have 1 question. How much magnesium do you take, and what form (type)?
We have found that virtually everyone who has MC has gluten sensitivity. A negative result on a celiac screening tests means nothing. Most of us have non-celiac gluten sensitivity and the medical community has no approved test for detecting non-celiac gluten sensitivity, so they have no way to diagnose it by medical methods. That's why most of us use the stool tests offered by EneroLab for detecting food sensitivities.
Please be aware that most of us here react to oats because the avenin in oats is very similar to the gluten in wheat, unfortunately. It's a less potent allergen when compared with gluten, but it still causes most of us to have diarrhea.
The other bad news is that everyone who is sensitive to soy also reacts to most legumes, and peanuts are a legume.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. Like many of us, you have your share of challenges, but you are motivated, and motivated people get results.
After reading your lists of supplements and meds, I have 1 question. How much magnesium do you take, and what form (type)?
We have found that virtually everyone who has MC has gluten sensitivity. A negative result on a celiac screening tests means nothing. Most of us have non-celiac gluten sensitivity and the medical community has no approved test for detecting non-celiac gluten sensitivity, so they have no way to diagnose it by medical methods. That's why most of us use the stool tests offered by EneroLab for detecting food sensitivities.
Please be aware that most of us here react to oats because the avenin in oats is very similar to the gluten in wheat, unfortunately. It's a less potent allergen when compared with gluten, but it still causes most of us to have diarrhea.
The other bad news is that everyone who is sensitive to soy also reacts to most legumes, and peanuts are a legume.
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Hi there Becky
welcome to the group, and sympathies that you had to find us
WOW!! that is a lot of supplements
I am similar age group and like you, have multiple health issues. Long story short, i resolved the fibromyalgia issues mostly with fixing major magnesium deficiency. ( i use the spray /lotion)
When MC is flaring, I can not handle lots of supplements.
It might be worth considering stopping the supps for a while , stick with the basics like vit D and safe magnesium and see if this settles your stomach/MC issues
pass on the oatmeal, as per Tex's comments above
pass on the grilled nuggets (they would have additives like Soy)
pass on the salad (too much fibre)
veges wise, when we are inflammed, sweet potato, carrot, etc tend to be safer options for MC'ers
Pass on the fruit (too much fibre too much sugar)
check on the ingredients of the protein bars ( if it has nuts, soy, dried fruit, these are triggers for MC inflammation)
During your reading did you read the posts in the success stories area? this is a good way to see what others have done, and how long it took.
and have you read the posts aimed at new people?
It can be a bit overwhelming at first - hard to 'digest' (pun intended) at first - what is discussed about eating, and what people are doing seems so opposite what mainstream tells us about nutrition...albeit as you read the posts and see the success stories area, you will start to see that MC is not like other IBD's and embracing a different world is part of the process.
hope this helps
keep reading, and feel free to ask questions
welcome to the group, and sympathies that you had to find us
WOW!! that is a lot of supplements
I am similar age group and like you, have multiple health issues. Long story short, i resolved the fibromyalgia issues mostly with fixing major magnesium deficiency. ( i use the spray /lotion)
When MC is flaring, I can not handle lots of supplements.
It might be worth considering stopping the supps for a while , stick with the basics like vit D and safe magnesium and see if this settles your stomach/MC issues
Diet wise for you, my suggestions based on what we have learnt via a couple of thousand MC'ers and their journey ...I eat oatmeal every single morning. On weekdays I eat grilled nuggets and a fruit cup from Chick fil A or a salad with grilled chicken. If I deviate it is to leftovers from home of a grilled meat or fish and either spinach, asparagus or broccoli. Dinner can vary a bit more being on the run with the kids but we try to keep it clean. I don't allow my kids to eat heavy on baseball days (weekends) so we take veggie trays, fruit and protein bars, peanut butter and jelly sandwiches, etc. No greasy, heavy, fast food/pizza.
pass on the oatmeal, as per Tex's comments above
pass on the grilled nuggets (they would have additives like Soy)
pass on the salad (too much fibre)
veges wise, when we are inflammed, sweet potato, carrot, etc tend to be safer options for MC'ers
Pass on the fruit (too much fibre too much sugar)
check on the ingredients of the protein bars ( if it has nuts, soy, dried fruit, these are triggers for MC inflammation)
During your reading did you read the posts in the success stories area? this is a good way to see what others have done, and how long it took.
and have you read the posts aimed at new people?
It can be a bit overwhelming at first - hard to 'digest' (pun intended) at first - what is discussed about eating, and what people are doing seems so opposite what mainstream tells us about nutrition...albeit as you read the posts and see the success stories area, you will start to see that MC is not like other IBD's and embracing a different world is part of the process.
hope this helps
keep reading, and feel free to ask questions
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 guys,
The magnesium is oxide & citrate, 900 mg spread out throughout the day. 500 mg of it is in with my Calcium supplement and 400 of it I take at bedtime.
I don't eat the protein bars, they are for the kids, probably should have specified lol.
The oatmeal will be hard to kick but I can prob replace it with a protein shake and a some rice cakes. I am a creature of habit with a really busy morning schedule so trying to find a quick breakfast replacement isn't easy. The protein shake is developed by a doc here in town that is really health conscious so it is GF, DF, SF, sugar free, etc.
Some of the supplements I can stop, some I can't. I can't function without some of them and I have to keep moving. :/ I've gone off of them over the years to try to save money but I end up losing b/c I can't make it to work lol.
I've read a good bit but it's hard with such a busy schedule and I don't eat a lot of what you guys do. I don't eat potatoes and corn and beans (other than green beans, I like those lol). I am a really simple girl which I think is going to be a real challenge. I'm going to have to figure something out. I don't usually even eat rice, it's a grain and I don't usually do those. I'm going to go back and read the success stories and newbie stuff again and take more notes.
Any suggestions with glutamine?
So fruit is off limits?
I can handle no peanuts and legumes and gluten. I don't eat that much of it anyway, it's really no loss when you already don't eat it lol.
Thanks again!
The magnesium is oxide & citrate, 900 mg spread out throughout the day. 500 mg of it is in with my Calcium supplement and 400 of it I take at bedtime.
I don't eat the protein bars, they are for the kids, probably should have specified lol.
The oatmeal will be hard to kick but I can prob replace it with a protein shake and a some rice cakes. I am a creature of habit with a really busy morning schedule so trying to find a quick breakfast replacement isn't easy. The protein shake is developed by a doc here in town that is really health conscious so it is GF, DF, SF, sugar free, etc.
Some of the supplements I can stop, some I can't. I can't function without some of them and I have to keep moving. :/ I've gone off of them over the years to try to save money but I end up losing b/c I can't make it to work lol.
I've read a good bit but it's hard with such a busy schedule and I don't eat a lot of what you guys do. I don't eat potatoes and corn and beans (other than green beans, I like those lol). I am a really simple girl which I think is going to be a real challenge. I'm going to have to figure something out. I don't usually even eat rice, it's a grain and I don't usually do those. I'm going to go back and read the success stories and newbie stuff again and take more notes.
Any suggestions with glutamine?
So fruit is off limits?
I can handle no peanuts and legumes and gluten. I don't eat that much of it anyway, it's really no loss when you already don't eat it lol.
Thanks again!
Becky
Diagnosed Microscopic Lymphocytic Colitis 4/2016
DF, SF
Diagnosed Microscopic Lymphocytic Colitis 4/2016
DF, SF
Becky,
If you're taking that much magnesium, the magnesium oxide is very, very likely to be causing diarrhea. There are numerous forms of magnesium supplements and magnesium oxide is the one that is the poorest absorbed and the one most likely to cause diarrhea.
L-glutamine is used by weightlifters to rebuild/repair/enhance muscle tissue damaged by lifting excessive weights so many people assume that it should help to repair other smooth muscle tissue such as is found in the intestines. In the real world, a handful of members here say that they believe that it definitely helped their recovery while most can't detect any difference.
Fruit imposes a double whammy because of the fructose (a lot of negative research on fructose these days) and the fiber content. Fructose is relatively difficult for MC patients to digest, and the fiber is counterproductive for healing because of it's severe abrasiveness. Bananas are the only fruit that most of us can safely/efficiently digest. If you eat any fruit, make sure that it is peeled and well-cooked (canned fruit usually meets those criteria).
I certainly agree that you can't just stop taking all of those meds and supplements. The problem with taking so many is that you are almost guaranteed to be reacting to some of them simply by the laws of probability and statistics. At some point it will become necessary to track down and eliminate (or find substitutes for) those that are preventing you from reaching remission. With that many candidates, weeding out the bad ones will be quite a challenge. Some will be easy though — such as the probiotics. Most of us here cannot tolerate probiotics until after we are in remission. Probably less than 1 % actually find them to be helpful. So that makes avoiding probiotics a no-brainer. Even the American Gastroenterological Association Institute finally came to their senses in mid-December, 2015 when they issued new guidelines specifically recommending against the use of probiotics when attempting to treat MC. You can download a PDF copy of those recommendations if you want to see the details:
http://www.gastrojournal.org/article/S0 ... 1625-X/pdf
Here's the thing about food sensitivities — if you're going to eliminate the inflammation, it's all or nothing. "Reduced" gluten or "reduced" soy has no benefit. The only way to stop the inflammation from being regenerated by your immune system every time you eat something is to avoid those foods 100 % (and that means avoiding even tiny trace amounts such as a small crumb). Soy oil in pills is a problem. Gluten (or soy) in envelope glues, or in lipstick, or in toothpaste, is a problem. Despite expert claims to the contrary, soy lecithin in chocolate (or anything else) is a problem. Gluten in the flour dusted on chewing gum and other products to keep them from sticking together, or to keep them from sticking to a conveyor belt, is a problem. Those are the sort of things that can make keeping our diet clean quite a challenge if we're not careful.
Tex
If you're taking that much magnesium, the magnesium oxide is very, very likely to be causing diarrhea. There are numerous forms of magnesium supplements and magnesium oxide is the one that is the poorest absorbed and the one most likely to cause diarrhea.
L-glutamine is used by weightlifters to rebuild/repair/enhance muscle tissue damaged by lifting excessive weights so many people assume that it should help to repair other smooth muscle tissue such as is found in the intestines. In the real world, a handful of members here say that they believe that it definitely helped their recovery while most can't detect any difference.
Fruit imposes a double whammy because of the fructose (a lot of negative research on fructose these days) and the fiber content. Fructose is relatively difficult for MC patients to digest, and the fiber is counterproductive for healing because of it's severe abrasiveness. Bananas are the only fruit that most of us can safely/efficiently digest. If you eat any fruit, make sure that it is peeled and well-cooked (canned fruit usually meets those criteria).
I certainly agree that you can't just stop taking all of those meds and supplements. The problem with taking so many is that you are almost guaranteed to be reacting to some of them simply by the laws of probability and statistics. At some point it will become necessary to track down and eliminate (or find substitutes for) those that are preventing you from reaching remission. With that many candidates, weeding out the bad ones will be quite a challenge. Some will be easy though — such as the probiotics. Most of us here cannot tolerate probiotics until after we are in remission. Probably less than 1 % actually find them to be helpful. So that makes avoiding probiotics a no-brainer. Even the American Gastroenterological Association Institute finally came to their senses in mid-December, 2015 when they issued new guidelines specifically recommending against the use of probiotics when attempting to treat MC. You can download a PDF copy of those recommendations if you want to see the details:
http://www.gastrojournal.org/article/S0 ... 1625-X/pdf
Here's the thing about food sensitivities — if you're going to eliminate the inflammation, it's all or nothing. "Reduced" gluten or "reduced" soy has no benefit. The only way to stop the inflammation from being regenerated by your immune system every time you eat something is to avoid those foods 100 % (and that means avoiding even tiny trace amounts such as a small crumb). Soy oil in pills is a problem. Gluten (or soy) in envelope glues, or in lipstick, or in toothpaste, is a problem. Despite expert claims to the contrary, soy lecithin in chocolate (or anything else) is a problem. Gluten in the flour dusted on chewing gum and other products to keep them from sticking together, or to keep them from sticking to a conveyor belt, is a problem. Those are the sort of things that can make keeping our diet clean quite a challenge if we're not careful.
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Hi again Becky
keep in mind, while your gut is inflammed and there are loose BM's happening, you will have compromised absorption of the supplements.
I didnt say to stop all of them. there are a few in there that can cause issue for MC'ers. (fish oil and any of them that have soy in them)
I agree with Tex, the oral magnesium could be contributing to the BM issues.
not sure how much reading on the internet you have done but Gut Health is at the crux of wellness in the rest of our bodies. 2/3 of our immune system operates from the Gut. To help reduce the issues with the other health issues, fixing the gut becomes the priority.
MC is for life. long term wellness and keeping symptoms away is reliant on having the MC management plan that works for you.
for those with only MC issues, some diet modifications and low dose medication can bring results fairly quickly.
for those with multiple health issues, it takes alot more.
we cant postpone or deal with it later when we have more time. the issues you are having your body is sending a message.
I speak from experience, in the 6 years since my MC diagnosis, i also have had serious kidney issues (unknown cause), was chronically ill with Fibro and other health issues, so much so that i didnt work for 12 months and after 2 years only well enough to work part time.
re Glutamine, some people have had good success with it, and others no benefit. what we have found in the early days of inflammation the best approach is bland, well cooked easy to digest meals, good amounts of animal protein, Vit D and good levels of magnesium.
the sucky part of life with MC is that there is no 'one size fits all' solution, or fast track type solution. you dont eradicate MC.
You learn to live with it, love it, nurture it. Each person has to figure out their best management plan, via reading the discussions here, listening to their body with trial and error, time and patience and giving their body the right essential elements to heal
embracing the diet suggestions is a big change, albeit, it is what works.
keep in mind, while your gut is inflammed and there are loose BM's happening, you will have compromised absorption of the supplements.
I didnt say to stop all of them. there are a few in there that can cause issue for MC'ers. (fish oil and any of them that have soy in them)
I agree with Tex, the oral magnesium could be contributing to the BM issues.
not sure how much reading on the internet you have done but Gut Health is at the crux of wellness in the rest of our bodies. 2/3 of our immune system operates from the Gut. To help reduce the issues with the other health issues, fixing the gut becomes the priority.
MC is for life. long term wellness and keeping symptoms away is reliant on having the MC management plan that works for you.
for those with only MC issues, some diet modifications and low dose medication can bring results fairly quickly.
for those with multiple health issues, it takes alot more.
we cant postpone or deal with it later when we have more time. the issues you are having your body is sending a message.
I speak from experience, in the 6 years since my MC diagnosis, i also have had serious kidney issues (unknown cause), was chronically ill with Fibro and other health issues, so much so that i didnt work for 12 months and after 2 years only well enough to work part time.
re Glutamine, some people have had good success with it, and others no benefit. what we have found in the early days of inflammation the best approach is bland, well cooked easy to digest meals, good amounts of animal protein, Vit D and good levels of magnesium.
the sucky part of life with MC is that there is no 'one size fits all' solution, or fast track type solution. you dont eradicate MC.
You learn to live with it, love it, nurture it. Each person has to figure out their best management plan, via reading the discussions here, listening to their body with trial and error, time and patience and giving their body the right essential elements to heal
embracing the diet suggestions is a big change, albeit, it is what works.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Ok, so I don't mind the diet at all. I'm game for anything with that. I already eat such a limited variety that diet changes don't scare me.
Supplements scare me a little. I can weed out some for now. The biggest thing I am confused about is that I keep reading about needing magnesium but the suggestion that I cut it. I'm going to cut the extra I take and go back to just my calcium that has magnesium in it and see how that goes. I guess my biggest worry about stopping supplements is the fact that I don't eat very much to begin with and I am afraid that the lack of nutrition and then taking away the supplements plus the constant diarrhea will make me debilitated to a point where I can't work or take care of my family. I already suffer with dehydration on the regular. :/
One of my probiotics I can stop but the other has helped me with other issues so I don't want to stop both. One of my docs put me on Saccharomycin for yeast and it has worked wonders. I am very hesitant to stop that one. The other I've been on for over 15 years, was put on by my Naturopath and I'd be ok taking a break from that one. The fish oil I take as an anti-oxidant and anti-inflammatory, should I stop that one? I have Aquagenic Pruritis and I itch real bad so I take some of the vitamins to assist in my effort to keep my skin healthy. Most of my supplements are by Solgar so I'll look through them again to check for Gluten, Soy and Dairy but I'm pretty sure I'm safe with most of them. I never even thought to check toothpaste and what not! *Sigh
I'll be reviewing the diet and recipe section so I can get a good grip on what changes I can make immediately to get the ball rolling. Goodness knows I need to get on the horse here before there's nothin' left of me!
Thanks,
Supplements scare me a little. I can weed out some for now. The biggest thing I am confused about is that I keep reading about needing magnesium but the suggestion that I cut it. I'm going to cut the extra I take and go back to just my calcium that has magnesium in it and see how that goes. I guess my biggest worry about stopping supplements is the fact that I don't eat very much to begin with and I am afraid that the lack of nutrition and then taking away the supplements plus the constant diarrhea will make me debilitated to a point where I can't work or take care of my family. I already suffer with dehydration on the regular. :/
One of my probiotics I can stop but the other has helped me with other issues so I don't want to stop both. One of my docs put me on Saccharomycin for yeast and it has worked wonders. I am very hesitant to stop that one. The other I've been on for over 15 years, was put on by my Naturopath and I'd be ok taking a break from that one. The fish oil I take as an anti-oxidant and anti-inflammatory, should I stop that one? I have Aquagenic Pruritis and I itch real bad so I take some of the vitamins to assist in my effort to keep my skin healthy. Most of my supplements are by Solgar so I'll look through them again to check for Gluten, Soy and Dairy but I'm pretty sure I'm safe with most of them. I never even thought to check toothpaste and what not! *Sigh
I'll be reviewing the diet and recipe section so I can get a good grip on what changes I can make immediately to get the ball rolling. Goodness knows I need to get on the horse here before there's nothin' left of me!
Thanks,
Becky
Diagnosed Microscopic Lymphocytic Colitis 4/2016
DF, SF
Diagnosed Microscopic Lymphocytic Colitis 4/2016
DF, SF
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Sorry for causing confusion - Magnesium is available via a spray/lotion and used by many here. It is the safest way for a MC'er to get good doses of magnesium with minimal impact on our digestion. I have it in bottles around the house, spray my legs each time i go to the toilet, spray neck, shoulders arms when i am on the computer; spray neck, arms, stomach, legs before going to bed and when I wake up.
nutrition wise - whether it be food or supplements, if you are inflammed and having watery BM's you are not absorbing adequate nutrients well, hence why removing triggers, settling inflammation is the priority.
the hard part about MC is that it is not well understood by many practitioners, doctors, Functional practitioners, naturopaths etc. MC is not the same as other IBD's. the supplements that can help other IBD's do not work well for MC.
Fish oil may be an anti-inflammatory for other health issues - but it can be a trigger for MC. and many fish oils also have soy based ingredients in them. the best anti-inflammatory treatment is avoiding triggers that cause inflammation in the first place.
I understand your fear/unsettlement about health deteriorating, and for some people, things can get worse before they get better.
but given that MC has occurred, elements of your current protocol is causing the MC inflammation. it will be difficult to get management of the MC and BM's while you continue to have those ingredients.
you have mentioned that you dont have much time to do reading - what I am saying to you in these replies is the summary of what we know from the 2000 or so people that have been part of this forum, some of which spent years with chronic MC symptoms. if you do get time to read the posts and discussions you will see what has worked for others.
nutrition wise - whether it be food or supplements, if you are inflammed and having watery BM's you are not absorbing adequate nutrients well, hence why removing triggers, settling inflammation is the priority.
the hard part about MC is that it is not well understood by many practitioners, doctors, Functional practitioners, naturopaths etc. MC is not the same as other IBD's. the supplements that can help other IBD's do not work well for MC.
Fish oil may be an anti-inflammatory for other health issues - but it can be a trigger for MC. and many fish oils also have soy based ingredients in them. the best anti-inflammatory treatment is avoiding triggers that cause inflammation in the first place.
I understand your fear/unsettlement about health deteriorating, and for some people, things can get worse before they get better.
but given that MC has occurred, elements of your current protocol is causing the MC inflammation. it will be difficult to get management of the MC and BM's while you continue to have those ingredients.
you have mentioned that you dont have much time to do reading - what I am saying to you in these replies is the summary of what we know from the 2000 or so people that have been part of this forum, some of which spent years with chronic MC symptoms. if you do get time to read the posts and discussions you will see what has worked for others.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I understand .... you'll find this amusing ... we recently took evaluations at work to determine what "breed of dog" we all were. I am half border collie and half german shepherd. The german shepherd is the analytical that requires all the data, the border collie wants all the information RIGHT NOW as to make a quick, informed, correct decision to reach the appropriate conclusion lol. This is brutal for me. When I add a new supplement it usually takes me weeks to decide type, brand, quantity, etc. before I can make the actual purchase. It's like torture lol.
So right now, I am sitting here exhausted, in pain and needing to get to bed so I can start another day of work and kids. However, the German Shepherd in my head continues to read on this site while my body screams for my bed. I so need the help that only you guys can provide (yet goes against the grain of all I've been doing all these years to keep myself going) but my body can't keep up. I haven't been able to keep going without all these supplements so to give them up is going to be a great challenge. I've been at the same job for 15 years and my co-workers know that I have to have a lot of these pills just to keep going. So this is a huge struggle for me. The diet is a no brainer, the chemicals in our foods are ridiculous. I don't even give my kids milk, hardly ever have lol. Cows milk is for cows lol. I used to give them soy milk and now almond milk. Soy and dairy make me itch that's why I gave them up.
I've been reading online for weeks, I just now stumbled across this group this past weekend. I believed what I was reading at first and listened to my doctor b/c it was easier. I needed easier right now b/c I'm so sick. But at the end of the day I am someone who wants to heal things more naturally. I have a Lyrica prescription that I've been staring at for a month b/c I just don't want to take it. Man the pain is unreal but the side effects are unreal too. So I went back to Turmeric and Ginger. Now, I know they can upset my stomach but I figured it can't get any worse so what the hell lol. Truth be told I just don't want to be in pain anymore and I don't want to live in the bathroom anymore. I can do the diet but I can't just stop all the meds and I don't really want to add any new ones. And that is where my headline comes in ... Frustrated & Distraught ...
I guess I have some decisions to make. I just can't afford to lose my job though so I have to figure it out.
Thanks again for listening <3
So right now, I am sitting here exhausted, in pain and needing to get to bed so I can start another day of work and kids. However, the German Shepherd in my head continues to read on this site while my body screams for my bed. I so need the help that only you guys can provide (yet goes against the grain of all I've been doing all these years to keep myself going) but my body can't keep up. I haven't been able to keep going without all these supplements so to give them up is going to be a great challenge. I've been at the same job for 15 years and my co-workers know that I have to have a lot of these pills just to keep going. So this is a huge struggle for me. The diet is a no brainer, the chemicals in our foods are ridiculous. I don't even give my kids milk, hardly ever have lol. Cows milk is for cows lol. I used to give them soy milk and now almond milk. Soy and dairy make me itch that's why I gave them up.
I've been reading online for weeks, I just now stumbled across this group this past weekend. I believed what I was reading at first and listened to my doctor b/c it was easier. I needed easier right now b/c I'm so sick. But at the end of the day I am someone who wants to heal things more naturally. I have a Lyrica prescription that I've been staring at for a month b/c I just don't want to take it. Man the pain is unreal but the side effects are unreal too. So I went back to Turmeric and Ginger. Now, I know they can upset my stomach but I figured it can't get any worse so what the hell lol. Truth be told I just don't want to be in pain anymore and I don't want to live in the bathroom anymore. I can do the diet but I can't just stop all the meds and I don't really want to add any new ones. And that is where my headline comes in ... Frustrated & Distraught ...
I guess I have some decisions to make. I just can't afford to lose my job though so I have to figure it out.
Thanks again for listening <3
Becky
Diagnosed Microscopic Lymphocytic Colitis 4/2016
DF, SF
Diagnosed Microscopic Lymphocytic Colitis 4/2016
DF, SF
Becky,
After going through a long period of magnesium deficiency myself, I wouldn't recommend reducing magnesium supplementation unless you have compromised kidney function. What I do recommend is not using magnesium oxide, because it's such a poor source of magnesium. I get that you need extra magnesium because of some of the meds you're taking. Is the cholestyramine actually helping or do you just take it because it was prescribed. Bile acid sequestrants are some of the most magnesium-wasting drugs available. Corticosteroids run a close second. But the budesonide will help to suppress the inflammation and mask the symptoms while the diet changes stop the production of future inflammation.
Also, if you have pruritus, you may not be able to tolerate topically-applied magnesium oils or lotions, because they can be irritating for some people. You would have to experiment with it to see. If you can use it, it is the safest way to absorb magnesium, because it cannot cause diarrhea.
I agree with you and your doc that Saccharomyces is probably the least likely probiotic to cause digestive problems. If you've been taking the other for 15 years, your body is going to be shocked if you stop taking it. If you've had diarrhea for 15 years though, then maybe stopping it is worth a try, especially if it's cultured in dairy.
Fish oil shouldn't be a problem unless you're taking more than 1 or 2 mg, or unless it contains soy oil (which most of them do). As Gabes pointed out, soy oil in fish oil is a problem and too much fish oil can cause D as a lubricant. Soy-free fish oil is available at Vitamin Shoppe and other vendors. And I wouldn't recommend drastically cutting vitamins that help with skin health if you have pruritus. You might be able to do without some of them after you get all the gluten out of your diet and enjoy some healing. Gluten sensitivity (and sometimes other food sensitivities as you have noted) is probably the most common cause of most skin problems, and histamine (mast cell activation disorder) is the second most common cause of skin issues. The pruritus implies that you almost surely have major histamine/mast cell issues.
I believe that if I were in your situation I wouldn't make any drastic changes to cut supplements cold turkey. I would get my diet in order and then slowly wean off the most risky supplements as part of my recovery program. But every case is different, so we have to listen to our body. And no one knows your body better than you.
Tex
After going through a long period of magnesium deficiency myself, I wouldn't recommend reducing magnesium supplementation unless you have compromised kidney function. What I do recommend is not using magnesium oxide, because it's such a poor source of magnesium. I get that you need extra magnesium because of some of the meds you're taking. Is the cholestyramine actually helping or do you just take it because it was prescribed. Bile acid sequestrants are some of the most magnesium-wasting drugs available. Corticosteroids run a close second. But the budesonide will help to suppress the inflammation and mask the symptoms while the diet changes stop the production of future inflammation.
Also, if you have pruritus, you may not be able to tolerate topically-applied magnesium oils or lotions, because they can be irritating for some people. You would have to experiment with it to see. If you can use it, it is the safest way to absorb magnesium, because it cannot cause diarrhea.
I agree with you and your doc that Saccharomyces is probably the least likely probiotic to cause digestive problems. If you've been taking the other for 15 years, your body is going to be shocked if you stop taking it. If you've had diarrhea for 15 years though, then maybe stopping it is worth a try, especially if it's cultured in dairy.
Fish oil shouldn't be a problem unless you're taking more than 1 or 2 mg, or unless it contains soy oil (which most of them do). As Gabes pointed out, soy oil in fish oil is a problem and too much fish oil can cause D as a lubricant. Soy-free fish oil is available at Vitamin Shoppe and other vendors. And I wouldn't recommend drastically cutting vitamins that help with skin health if you have pruritus. You might be able to do without some of them after you get all the gluten out of your diet and enjoy some healing. Gluten sensitivity (and sometimes other food sensitivities as you have noted) is probably the most common cause of most skin problems, and histamine (mast cell activation disorder) is the second most common cause of skin issues. The pruritus implies that you almost surely have major histamine/mast cell issues.
I believe that if I were in your situation I wouldn't make any drastic changes to cut supplements cold turkey. I would get my diet in order and then slowly wean off the most risky supplements as part of my recovery program. But every case is different, so we have to listen to our body. And no one knows your body better than you.
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 Tex,
*******"After going through a long period of magnesium deficiency myself, I wouldn't recommend reducing magnesium supplementation unless you have compromised kidney function. What I do recommend is not using magnesium oxide, because it's such a poor source of magnesium. I get that you need extra magnesium because of some of the meds you're taking. Is the cholestyramine actually helping or do you just take it because it was prescribed. Bile acid sequestrants are some of the most magnesium-wasting drugs available. Corticosteroids run a close second. But the budesonide will help to suppress the inflammation and mask the symptoms while the diet changes stop the production of future inflammation"*******
So, I was put on Calcium by my Naturopath years ago, I added the magnesium myself b/c all the literature I had read said that it should be taken together and a lot of the supplements have them together. The most recent literature said that the ratio should be 1:1 so I increased my Magnesium at that time. The biggest plus I noticed was that I sleep better. I had kidney surgery when I was 8 (I have 3) and I went into kidney failure in 2010, unrelated. Kidneys have rebounded but I have to watch my sodium intake and I'm not supposed to take Nsaids. They are doing a lot of bloodwork now that this has cropped up. How much Magnesium do you suggest for one with MC to take daily and what form? You're right, I'm not sure I can take a spray on, I itch at the drop of a hat :(. I usually spray vinegar on my skin to stop the itch. It's a debilitating itch...that's a whole other problem...
The Cholestyramine I only take on an as needed basis. I find it hard to regulate. I can't find a happy medium, I'm either constipated with it or I still have diarrhea so I only take it when I have too. I was just diagnosed in April and have been self treating since October of 2015. (I don't like meds so I didn't use Immodium or Pepto to self treat lol) I started with soft stools last fall but not the crazy watery diarrhea that hit me in late February 2016. I had my Colonoscopy the first week in March and the diagnosis came the second week in April. They gave me the Cholestyramine in March. I take it once, once or twice a week. I was on Balsalazide 750 mg BID but it never firmed up my stools so they put me on the Budesonide last week. The Balsalazide made them hate the tiniest bit of shape but still really soft and I was still going really often. I'm still waiting for the Budesonide to start working (I started it Friday) so I had to take the Cholestyramine on Sunday. So I am on day 5 and the Budesonide still isn't quite working so I wait ever so patiently lol.
*******"I agree with you and your doc that Saccharomyces is probably the least likely probiotic to cause digestive problems. If you've been taking the other for 15 years, your body is going to be shocked if you stop taking it. If you've had diarrhea for 15 years though, then maybe stopping it is worth a try, especially if it's cultured in dairy."*******
He put me on the Saccharomyces b/c I was on a lot of abx at the time and I had a huge yeast build up to get rid of. It did the trick :) The other, my Naturopath put me on over 15 years ago b/c I had a sensitivity to beef and dairy. Back then, as long as I didn't eat beef I didn't get diarrhea. So as long as I stay on it I can eat beef lol. I am willing to give it up though if you think I should. I'm just nervous of course. All the things that have worked for me all this time seem to be things I need to stop taking. :/ And to be honest, I eat so little variety when it comes to meat I don't want to give up beef. I only eat beef and chicken so I don't know what to do. Maybe I will stop it and see what happens when I eat beef. I don't eat it super often but with the new diet it will be more frequently than before.
As far as my fish oil goes I am taking way more than 1 or 2 mg. I take 2 g of a Flax/Fish blend by Twinlab. I don't see soy on the label but I will give them a call and see if it is in there. I've been taking this for years too. The anti oxidants are the most recently added supplements. The vitamins and fish oil are what I've been on forever. I already ditched the Magnesium Oxide last night. :) Flushed it lol. I don't remember why I picked it but I'm sure I researched it first so I'm discouraged to hear that the oxide version is not the best one. I know for a fact I need calcium supplementation so I'll need to research the topical magnesiums. Can you recommend a brand or two of topical magnesium?
I started Glutamine again last week. I've watched it work wonders in my dogs so I'm trying it. My current dog was able to come off Flagyl and only be on a very low dose of Pred and some supplements that include Glutamine & SamE. Her bloodwork is beautiful and she's still with me. My last cancer dog was able to build his muscle back before we lost him after much muscle wasting. I've seen many, many dogs in the last 25 years of working at a high volume vet clinic that have had to stay on drugs to survive so I do my best to avoid that route with mine.
Thanks again for all the info!
*******"After going through a long period of magnesium deficiency myself, I wouldn't recommend reducing magnesium supplementation unless you have compromised kidney function. What I do recommend is not using magnesium oxide, because it's such a poor source of magnesium. I get that you need extra magnesium because of some of the meds you're taking. Is the cholestyramine actually helping or do you just take it because it was prescribed. Bile acid sequestrants are some of the most magnesium-wasting drugs available. Corticosteroids run a close second. But the budesonide will help to suppress the inflammation and mask the symptoms while the diet changes stop the production of future inflammation"*******
So, I was put on Calcium by my Naturopath years ago, I added the magnesium myself b/c all the literature I had read said that it should be taken together and a lot of the supplements have them together. The most recent literature said that the ratio should be 1:1 so I increased my Magnesium at that time. The biggest plus I noticed was that I sleep better. I had kidney surgery when I was 8 (I have 3) and I went into kidney failure in 2010, unrelated. Kidneys have rebounded but I have to watch my sodium intake and I'm not supposed to take Nsaids. They are doing a lot of bloodwork now that this has cropped up. How much Magnesium do you suggest for one with MC to take daily and what form? You're right, I'm not sure I can take a spray on, I itch at the drop of a hat :(. I usually spray vinegar on my skin to stop the itch. It's a debilitating itch...that's a whole other problem...
The Cholestyramine I only take on an as needed basis. I find it hard to regulate. I can't find a happy medium, I'm either constipated with it or I still have diarrhea so I only take it when I have too. I was just diagnosed in April and have been self treating since October of 2015. (I don't like meds so I didn't use Immodium or Pepto to self treat lol) I started with soft stools last fall but not the crazy watery diarrhea that hit me in late February 2016. I had my Colonoscopy the first week in March and the diagnosis came the second week in April. They gave me the Cholestyramine in March. I take it once, once or twice a week. I was on Balsalazide 750 mg BID but it never firmed up my stools so they put me on the Budesonide last week. The Balsalazide made them hate the tiniest bit of shape but still really soft and I was still going really often. I'm still waiting for the Budesonide to start working (I started it Friday) so I had to take the Cholestyramine on Sunday. So I am on day 5 and the Budesonide still isn't quite working so I wait ever so patiently lol.
*******"I agree with you and your doc that Saccharomyces is probably the least likely probiotic to cause digestive problems. If you've been taking the other for 15 years, your body is going to be shocked if you stop taking it. If you've had diarrhea for 15 years though, then maybe stopping it is worth a try, especially if it's cultured in dairy."*******
He put me on the Saccharomyces b/c I was on a lot of abx at the time and I had a huge yeast build up to get rid of. It did the trick :) The other, my Naturopath put me on over 15 years ago b/c I had a sensitivity to beef and dairy. Back then, as long as I didn't eat beef I didn't get diarrhea. So as long as I stay on it I can eat beef lol. I am willing to give it up though if you think I should. I'm just nervous of course. All the things that have worked for me all this time seem to be things I need to stop taking. :/ And to be honest, I eat so little variety when it comes to meat I don't want to give up beef. I only eat beef and chicken so I don't know what to do. Maybe I will stop it and see what happens when I eat beef. I don't eat it super often but with the new diet it will be more frequently than before.
As far as my fish oil goes I am taking way more than 1 or 2 mg. I take 2 g of a Flax/Fish blend by Twinlab. I don't see soy on the label but I will give them a call and see if it is in there. I've been taking this for years too. The anti oxidants are the most recently added supplements. The vitamins and fish oil are what I've been on forever. I already ditched the Magnesium Oxide last night. :) Flushed it lol. I don't remember why I picked it but I'm sure I researched it first so I'm discouraged to hear that the oxide version is not the best one. I know for a fact I need calcium supplementation so I'll need to research the topical magnesiums. Can you recommend a brand or two of topical magnesium?
I started Glutamine again last week. I've watched it work wonders in my dogs so I'm trying it. My current dog was able to come off Flagyl and only be on a very low dose of Pred and some supplements that include Glutamine & SamE. Her bloodwork is beautiful and she's still with me. My last cancer dog was able to build his muscle back before we lost him after much muscle wasting. I've seen many, many dogs in the last 25 years of working at a high volume vet clinic that have had to stay on drugs to survive so I do my best to avoid that route with mine.
Thanks again for all the info!
Becky
Diagnosed Microscopic Lymphocytic Colitis 4/2016
DF, SF
Diagnosed Microscopic Lymphocytic Colitis 4/2016
DF, SF
Usually, 400–600 mg should be sufficient, but that's assuming that most of it is not being wasted by 1 or more drugs. And as I've pointed out many, many times on this forum, the safest, most effective form of oral magnesium supplement is chelated magnesium (magnesium glycinate), but make sure that it is not "Buffered" chelated magnesium.Becky wrote:How much Magnesium do you suggest for one with MC to take daily and what form?
Why do you take so much calcium? Are you aware that the residents of the countries with the highest calcium intake have the highest rates of osteoporosis? If you have an adequate intake of vitamin D and magnesium, you shouldn't need any calcium supplements. If your diet were absolutely devoid of calcium, you might need a calcium supplement, but I would be very surprised if that's actually the case. Calcium is in a lot of foods. And some foods are enriched with calcium to add to the mix. Do you use any almond milk or any other milk substitute? Most contain at least as much calcium as cow's milk. Without so much calcium supplement, you wouldn't need as much magnesium supplement. Most excess vitamins and minerals have to be removed from the body by the kidneys (to prevent a toxic buildup) and this imposes a huge, constant, unnecessary, workload on the kidneys. There are no free lunches. All surplus supplements have to be purged from the body and that means that the liver or kidneys (or both) may have to work overtime to keep the rest of your body systems safe from toxic buildups.
Occasional use of cholestyramine at least doesn't cause chronic magnesium loss, but it's not a very effective way to use the drug, either. Typically, it takes at least a couple of weeks for a cholestyramine treatment program to reach homeostasis (equilibrium). If I couldn't find a dose that worked, I would be much more inclined to forget cholestyramine and use Imodium or Pepto-Bismol when I needed to slow down my motility. Both have far fewer side effects than cholestyramine. It's safe to take up to 8 or more Imodium tablets per day for as long as needed, without any known significant health risks, for example. But as always, never use more than it takes to do the job because too much can cause constipation.
This scenario eloquently describes the main problem with the treatment policies of virtually all medical disciplines (including allopathic, naturopathic, and homeopathic) — treat the symptoms while disregarding the main problem. Call me weird, but I fail to see the logic in that approach (except that it sells billions of dollars worth of drugs, supplements, and probiotics). IMO the proper way to correct your problem would have been to simply avoid eating beef and dairy products. Not only is this an elegant solution to the problem, but it avoids all possible side effects from any drugs, probiotics, or supplements used in the treatment program. But the primary benefit of avoiding inflammatory foods is that avoiding them eliminates the production of antibodies by our immune system, which preempts the production of proinflammatory agents, thereby eliminating the risk of perpetuating a state of chronic inflammation that virtually guarantees the development over time of additional autoimmune-type diseases. Masking symptoms does not prevent inflammation — it merely masks it.Becky wrote:The other, my Naturopath put me on over 15 years ago b/c I had a sensitivity to beef and dairy. Back then, as long as I didn't eat beef I didn't get diarrhea. So as long as I stay on it I can eat beef lol. I am willing to give it up though if you think I should.
But masking symptoms doesn't work very will with mast cell issues. IOW, taking antihistamines is not nearly as effective as preventing high histamine levels in the first place. There is a connection among MC, gut bacteria, and histamine that I am currently researching and describing in Edition II of Microscopic Colitis. Your case is almost surely affected by that association. Medical experts have long suspected that MC may be caused by adverse gut bacteria populations, but no one has ever discovered or defined the mechanism by which this happens. I believe that I have figured out how it works, but I need to do some more research to verify my theory.
You say you "know" that you need calcium supplementation. How do you know that? Is your serum calcium low?
I use Ancient Minerals magnesium oil or Life-Flo magnesium chloride brine, but there are many others that work well.
I certainly agree with you that anytime supplementing with an amino acid or 2 will preempt the need for a powerful drug, that choice is a no-brainer.
You're most welcome,
Tex
Hi Becky,
First, welcome to the forum. I've been in remission for several years. In order to get into remission it took eating the few food regimen....like chicken, rice and overcooked squash 5 meals per day for like 8 weeks. My chicken portions were large. I had to force myself to eat. It takes a lot of protein to heal.
I also had to eliminate everything but vitamin D and magnesium (as epsom salt bath). I also took Entocort but the few food regimen plus eliminating supplements were really key.
Supplements are tough on us. I think sometimes they are too concentrated. They can be contaminated. I think the little pellets going through are gut are just tough to digest.
Now I can eat a broad variety of foods and also supplements.
Example in my life. I can't tolerate tumeric/curcumin or ginger as supplements but I can tolerate them in foods as a spice. I think the supplement form is too concentrated for me to digest.
Check out Tex's book at upper right corner if you don't already have it. It is worth it.
I've had several mini flares since I got into remission. It always takes me eliminating supplements to kick back into remission.
Who doesn't like Chik Filet! It used to be my fave. The problem with the grilled chicken is that even if it is gluten and soy free and I'm not sure that it is there is too much flour (gluten) flying around in the restaurant that can cause contamination. I don't eat at those type of places anymore. Safest thing for us to order at chik filet would be coffee or iced tea. It is helpful for us to reduce sugar. If you can wean down to 1/3 sweet tea and the rest unsweet tea that would be beneficial.
Timetable on Entocort, I responded to it in 3 days and had constipation in two weeks and had to step down to two pills then. I've seen several folks on here on 3 pills for 8-10-12 weeks, mostly the Europeans. The European docs don't seem to have problems with folks being on Entocort for awhile but the American docs want shorter stay on Entocort. The board finds it usually takes longer than what the American docs want. If you don't have serious side effects on the Entocort with all that you have going on I'd probably give 3 pills in morning 6-8 weeks before throwing in the towel. There are some studies out there on Entocort efficacy for MC but I don't have time to look them up now. I think it is something like 70 or 80% of folks respond to Entocort but please note that not everyone does. Hopefully this provides insight. I was age 50 and on no other prescription drugs, the few food regimen, and maybe 2-3 supplements when I was on Entocort as a reference.
You will get there and you have youth on your side. We have been in your shoes. MC is rough early on. I'd recommend reading as many of the old threads as you can in your free time. Most folks drop off the board when they are in remission.
Here is a recent success story. http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22256
First, welcome to the forum. I've been in remission for several years. In order to get into remission it took eating the few food regimen....like chicken, rice and overcooked squash 5 meals per day for like 8 weeks. My chicken portions were large. I had to force myself to eat. It takes a lot of protein to heal.
I also had to eliminate everything but vitamin D and magnesium (as epsom salt bath). I also took Entocort but the few food regimen plus eliminating supplements were really key.
Supplements are tough on us. I think sometimes they are too concentrated. They can be contaminated. I think the little pellets going through are gut are just tough to digest.
Now I can eat a broad variety of foods and also supplements.
Agree with Tex in the above statement.I certainly agree that you can't just stop taking all of those meds and supplements. The problem with taking so many is that you are almost guaranteed to be reacting to some of them simply by the laws of probability and statistics.
Example in my life. I can't tolerate tumeric/curcumin or ginger as supplements but I can tolerate them in foods as a spice. I think the supplement form is too concentrated for me to digest.
Check out Tex's book at upper right corner if you don't already have it. It is worth it.
I've had several mini flares since I got into remission. It always takes me eliminating supplements to kick back into remission.
Who doesn't like Chik Filet! It used to be my fave. The problem with the grilled chicken is that even if it is gluten and soy free and I'm not sure that it is there is too much flour (gluten) flying around in the restaurant that can cause contamination. I don't eat at those type of places anymore. Safest thing for us to order at chik filet would be coffee or iced tea. It is helpful for us to reduce sugar. If you can wean down to 1/3 sweet tea and the rest unsweet tea that would be beneficial.
Timetable on Entocort, I responded to it in 3 days and had constipation in two weeks and had to step down to two pills then. I've seen several folks on here on 3 pills for 8-10-12 weeks, mostly the Europeans. The European docs don't seem to have problems with folks being on Entocort for awhile but the American docs want shorter stay on Entocort. The board finds it usually takes longer than what the American docs want. If you don't have serious side effects on the Entocort with all that you have going on I'd probably give 3 pills in morning 6-8 weeks before throwing in the towel. There are some studies out there on Entocort efficacy for MC but I don't have time to look them up now. I think it is something like 70 or 80% of folks respond to Entocort but please note that not everyone does. Hopefully this provides insight. I was age 50 and on no other prescription drugs, the few food regimen, and maybe 2-3 supplements when I was on Entocort as a reference.
You will get there and you have youth on your side. We have been in your shoes. MC is rough early on. I'd recommend reading as many of the old threads as you can in your free time. Most folks drop off the board when they are in remission.
Here is a recent success story. http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22256
Please stop the oatmeal ASAP - I used to eat it daily and it was killing me. Don't even eat gluten free oatmeal. And you have to stop the sweet tea, not even artificially sweetened tea. Go to water water water. Must be 100% gluten free and that means reading every label of every food you put in your mouth. Critically important. It is a huge switch in how you eat. But it works. And don't touch gluten foods. Don't touch products with gluten in them (hand creams, tooth paste, etc.) Gluten is in everything. It is hard to figure out at first. But your food must be separate from everyone else's in your family unless entire family goes gluten free. But it is far more than that. Read food lists here.
I have fibromyalgia and have had it for 15 years. You learn to live with it. Feel like crap many many days. Don't sleep most of the time. But I just cannot overload on meds. And I can't overload on supplements either as they can be dangerous.
I'll leave it to Tex and the experts to tell you the rest. But you can survive fibro and MC but must change what you eat first. No gluten, no dairy.
I have fibromyalgia and have had it for 15 years. You learn to live with it. Feel like crap many many days. Don't sleep most of the time. But I just cannot overload on meds. And I can't overload on supplements either as they can be dangerous.
I'll leave it to Tex and the experts to tell you the rest. But you can survive fibro and MC but must change what you eat first. No gluten, no dairy.