Hi, all,
I started on the strict MC stage one diet back on October 11 (I was diagnosed back in 2010, but have been largely in remission since then; my MC was caused initially by NSAIDS. Once I stopped them, I got better nearly immediately). I have been in a flare since February 2017. I started treating myself by just cutting out gluten, which had worked for me when I had minor flares in the past. However, this time, it didn't work. After 8 months, I finally "got serious" and started on this diet. I've been living on meat (mostly turkey and pork), potatoes, squash, rice chex, rice, applesauce, and bananas (but not many bananas, because seriously they make me gag.) I am taking 5000 units of Vitamin D, and because I was worried about oral Magnesium, I have been soaking my feet in Epsom salts every night and using magnesium lotion. I tried oil and hated it.
After 6-7 weeks, I thought I'd gone into remission. I was even constipated. So I started to slowly add in fiber (had some brown rice, ate some raspberries for breakfast). I also tried taking Magnesium Glycerinate (Doctor's best). I believe the Doctor's Best caused me to have diarrhea (WD!! UGH). I have had a few normans in there, but a lot of WD over the past 2 weeks. (I've also had a lot of stress...had to take a major test, and hubby is retiring, so there's that). I was also feeling pretty good on Saturday, so I tried some cooked spinach. A very small amount, mind you, but oh my goodness, I started feeling terrible almost immediately. I've stopped the magnesium supplement and I've reverted back to the stage one diet. Today I thought I was getting better, but nope, just had more WD.
Last time I went to my GI doc, I told him I was going to try this diet for a couple of months before going on Budesonide. He said that if the diet worked, he wanted to know what it was because he'd share it with other patients. I truly wanted this to work, but I'm very discouraged right now. Should I give it some more time? It seems a waste to give up now!
I DO NOT WANT to go on Budesonide. I want my body to get better on its own. I want to be able to know what foods are making me react and it seems like at this point budesonide will make things even more prolonged. I won't know if the diet is working or if I'm being lulled into complacency. I'm also worried about the cost. I've seen that budesonide could cost hundreds of dollars and I could have to be on it for months! That doesn't sound good, especially since my hubby isn't going to be bringing in a good income any more.
My doc appointment is Friday. I know I'm going to ask about getting an Enterolab test done.
Thoughts?
What would you do?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
-
arizwldcat
- Little Blue Penguin
- Posts: 35
- Joined: Thu Oct 14, 2010 4:31 pm
- Location: Arizona
What would you do?
Kris
Hi Kris,
It sounds like you're trying to select a diet by trial and error. Do you know exactly which foods cause you to react? Have you ever had any EnteroLab stool tests to actually pinpoint which foods cause your immune system to produce antibodies, or are you guessing? No one enjoys spending money on EnteroLab tests, but for most of us, it's by far the best money we ever spent on our healthcare. The EnteroLab test results remove most of the doubt we might have about which foods cause us to react and which ones don't.
Most of us waste thousands of dollars on medical care (and medical insurance), but we get very little help with our MC in return. Most of the advice we get from our GI docs about treating MC is wrong. Based on EnteroLab test results, we can at least select a diet with confidence. By itself, that doesn't guarantee success, but at least it keeps us aimed in the right direction.
Tex
It sounds like you're trying to select a diet by trial and error. Do you know exactly which foods cause you to react? Have you ever had any EnteroLab stool tests to actually pinpoint which foods cause your immune system to produce antibodies, or are you guessing? No one enjoys spending money on EnteroLab tests, but for most of us, it's by far the best money we ever spent on our healthcare. The EnteroLab test results remove most of the doubt we might have about which foods cause us to react and which ones don't.
Most of us waste thousands of dollars on medical care (and medical insurance), but we get very little help with our MC in return. Most of the advice we get from our GI docs about treating MC is wrong. Based on EnteroLab test results, we can at least select a diet with confidence. By itself, that doesn't guarantee success, but at least it keeps us aimed in the right direction.
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.
-
arizwldcat
- Little Blue Penguin
- Posts: 35
- Joined: Thu Oct 14, 2010 4:31 pm
- Location: Arizona
I thought I was cutting most things out by just eating meat, rice, squash, and potatoes (and rice Chex)....and I do want to get tested. If the doc says he won’t order the tests, I will get what I can afford.
I have cut out gluten, soy, eggs, and dairy. Haven’t had any of those since October 11. I didn’t add anything in till I thought I was in remission ( ie, the diarrhea stopped). And as soon as I started reacting, I reverted to stage 1.
I am thinking the test will help, but if I haven’t had the 4 big offenders, won’t that skew the Test?
I have cut out gluten, soy, eggs, and dairy. Haven’t had any of those since October 11. I didn’t add anything in till I thought I was in remission ( ie, the diarrhea stopped). And as soon as I started reacting, I reverted to stage 1.
I am thinking the test will help, but if I haven’t had the 4 big offenders, won’t that skew the Test?
Kris
Hi Kris,
A lot of members eat Chex cereal without any problem. I don't know what is the trigger is for me (I can't eat gluten, casein, soy or egg), but when I ate Chex cereal, I had a cramping and WD -
(other than the day of my colonoscopy, it's the only day I had to miss work). I tried them again a week later as a snack to see if it was a fluke, but I had a reaction. I can eat rice cereal (I think the brand I usually get is Erehorn and the only ingredients are puffed rice and sea salt). I know in the beginning (for months), all I ate was safe protein/white rice or sweet potato - three meals a day. I'm still a bit of new with all of this and I'm sure that others will be able to offer more than I can.
Wishing you all the best -
Pam
A lot of members eat Chex cereal without any problem. I don't know what is the trigger is for me (I can't eat gluten, casein, soy or egg), but when I ate Chex cereal, I had a cramping and WD -
(other than the day of my colonoscopy, it's the only day I had to miss work). I tried them again a week later as a snack to see if it was a fluke, but I had a reaction. I can eat rice cereal (I think the brand I usually get is Erehorn and the only ingredients are puffed rice and sea salt). I know in the beginning (for months), all I ate was safe protein/white rice or sweet potato - three meals a day. I'm still a bit of new with all of this and I'm sure that others will be able to offer more than I can.
Wishing you all the best -
Pam
-
arizwldcat
- Little Blue Penguin
- Posts: 35
- Joined: Thu Oct 14, 2010 4:31 pm
- Location: Arizona
What’s weird is that I got to “Norman” once by eating that simple diet for 6-7 weeks, just as predicted. It doesn’t seem likely that any of those foods are not safe.
Did I totally misread the instructions for the stage one diet? I thought I was following them to the letter. Now I am very discouraged.
Did I totally misread the instructions for the stage one diet? I thought I was following them to the letter. Now I am very discouraged.
Kris
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Healing takes time - lots of time... 6-7 weeks is short period.
especially if there is external stress and other things going on.
the various things that I think have caused you the issues
- once you remove major triggers from your eating plan, other items can become major triggers after a few weeks (this is where the enterolab testing is beneficial as it will give better indication of what can be causing hte issues)
- adding in fibre - doing this by safe veges rather than berries may have been the better option. berries are too fibrous and fruits sugars upset the digestion process
- swapping from topical magnesium to oral at the same time as the two events above would have contributed to the set back.
- one, some or all of the above coupled with the stress
have you read some of the posts in the 'members success stories' area - here you will see what others have done and how long it took. the healing journey takes months (not years) a 'stable' remission takes most people 6-12 months on limited diet.
if you want to heal without meds, then be ready for long haul jouney, it will be 2 steps forward and 1 step back for many many months (that is semi normal) we have to patient, kind to ourselves, listen to our body and dont rush to add things, change things in our eating plan and routines.
implement lifestyle changes so we can minimise impact of stress, meditation, yoga, other relaxation activities to calm the body and mind and optimise healing.
the mental and emotional aspects of the journey are just as important as the eating plan and supplements.
we have some good links to info in the guidelines to recovery section that can help with this aspect of the journey
especially if there is external stress and other things going on.
the various things that I think have caused you the issues
- once you remove major triggers from your eating plan, other items can become major triggers after a few weeks (this is where the enterolab testing is beneficial as it will give better indication of what can be causing hte issues)
- adding in fibre - doing this by safe veges rather than berries may have been the better option. berries are too fibrous and fruits sugars upset the digestion process
- swapping from topical magnesium to oral at the same time as the two events above would have contributed to the set back.
- one, some or all of the above coupled with the stress
have you read some of the posts in the 'members success stories' area - here you will see what others have done and how long it took. the healing journey takes months (not years) a 'stable' remission takes most people 6-12 months on limited diet.
if you want to heal without meds, then be ready for long haul jouney, it will be 2 steps forward and 1 step back for many many months (that is semi normal) we have to patient, kind to ourselves, listen to our body and dont rush to add things, change things in our eating plan and routines.
implement lifestyle changes so we can minimise impact of stress, meditation, yoga, other relaxation activities to calm the body and mind and optimise healing.
the mental and emotional aspects of the journey are just as important as the eating plan and supplements.
we have some good links to info in the guidelines to recovery section that can help with this aspect of the journey
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
The stage 1 diet is designed for most people, but that doesn't mean that it will work for everyone. There's no guarantee that everyone can tolerate all of those foods Some people have uncommon or rare food sensitivities. Look at your meat choices carefully. Keep a daily food/reaction diary.
If you're already avoiding "the big four", then there's no point in ordering that test (the A1 Panel). But the C1 Panel might reveal the problem. Pam is right, some people cannot handle the Chex cereals because they are low-gluten, not necessarily gluten-free. They have less than 20 ppm of gluten, so they meet the legal definition of GF, but some people react to that level or less, or to some other ingredient in the cereal. Some of us (a surprising number of us) can't tolerate rice, or potatoes, or chicken, or . . . Don't assume that you are like most of us, or even like any of us. You might have a really unusual sensitivity.
Almost always, when someone has trouble tracking down a food (or medication, or cosmetic product, or whatever) that's preventing them from reaching remission, it's a food (or something) that they trust and they eat it (or use it) every day. Those are the ones that get us, because we never suspect them. When you're serious about tracking down a problem, suspect everything, and look at everything carefully, very carefully. Don't give anything a free pass. You'll find it, if you look critically enough.
There are a lot of tough cases, but the tough cases that reach remission and stay in remission are those who have become master detectives.
Tex
If you're already avoiding "the big four", then there's no point in ordering that test (the A1 Panel). But the C1 Panel might reveal the problem. Pam is right, some people cannot handle the Chex cereals because they are low-gluten, not necessarily gluten-free. They have less than 20 ppm of gluten, so they meet the legal definition of GF, but some people react to that level or less, or to some other ingredient in the cereal. Some of us (a surprising number of us) can't tolerate rice, or potatoes, or chicken, or . . . Don't assume that you are like most of us, or even like any of us. You might have a really unusual sensitivity.
Almost always, when someone has trouble tracking down a food (or medication, or cosmetic product, or whatever) that's preventing them from reaching remission, it's a food (or something) that they trust and they eat it (or use it) every day. Those are the ones that get us, because we never suspect them. When you're serious about tracking down a problem, suspect everything, and look at everything carefully, very carefully. Don't give anything a free pass. You'll find it, if you look critically enough.
There are a lot of tough cases, but the tough cases that reach remission and stay in remission are those who have become master detectives.
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.
And another important item:
The 6–7 week point marks the approximate time frame when most people stop reacting to gluten. So many of us go into remission at that point. But when we stop reacting to gluten, our immune system is no longer dominated by gluten, so it begins to look around for other food sensitivities. And often it finds them, and eventually begins to react to them. So remission at 6–7 weeks, is not necessarily complete remission. IOW, there may still be other undiscovered food sensitivities out there with our name on them.
Tex
The 6–7 week point marks the approximate time frame when most people stop reacting to gluten. So many of us go into remission at that point. But when we stop reacting to gluten, our immune system is no longer dominated by gluten, so it begins to look around for other food sensitivities. And often it finds them, and eventually begins to react to them. So remission at 6–7 weeks, is not necessarily complete remission. IOW, there may still be other undiscovered food sensitivities out there with our name on them.
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.
-
arizwldcat
- Little Blue Penguin
- Posts: 35
- Joined: Thu Oct 14, 2010 4:31 pm
- Location: Arizona
Thank you, Gabes and Tex, that was very helpful. I've been so discouraged. My husband is urging me to go ahead with the enterolab testing, so regardless of whether the doc will order it, I will. (But first I'll see if I can get part of it paid for!!) I didn't switch from topical to oral mag...I just added the oral mag. I'm still doing the epsom salts and the lotion. But I've stopped the oral because I'm pretty sure that's adding to my problem. I'm not eating berries any more (I truly wanted relief from the C ...weirdly enough...and I thought adding in fiber slowly would help. But I guess I added it too quickly).
Haven't discovered another safe veggie yet. After my spinach scare, I'm a little gun shy. I may just stick with squash until I get the enterolab results back.
I like posting on here...good or bad, just so that in the future I can refer back to what was going on. I had no idea what year I was diagnosed till I came back here and looked :)
You're right about yoga...I almost never have to run out of yoga class to the bathroom because I think the breathing really helps me relax.
Haven't discovered another safe veggie yet. After my spinach scare, I'm a little gun shy. I may just stick with squash until I get the enterolab results back.
I like posting on here...good or bad, just so that in the future I can refer back to what was going on. I had no idea what year I was diagnosed till I came back here and looked :)
You're right about yoga...I almost never have to run out of yoga class to the bathroom because I think the breathing really helps me relax.
Kris
I'm discouraged too. Last week had nocturnal D after taking Benefiber the day before. 3 weeks on gr. beef, gr turkey, rice, banana (once in a while), olive oil, very little and Earth balance soy free. DX was Oct 24th. Making bone broth this weekend. That's it! Lialda samples from GI, immodium, pepto (4 a day).
Nocturnal D incontinence last night
Got up at 430 this morning, took immodium and Lialda. I'm thinking of switching from rice to potato? Little less fiber.
I'm stumped!
Good day, D in the AM, once and that's it. Get 2 or 3 of those in a row.
Nocturnal D incontinence last night
Got up at 430 this morning, took immodium and Lialda. I'm thinking of switching from rice to potato? Little less fiber.I'm stumped!
Good day, D in the AM, once and that's it. Get 2 or 3 of those in a row.
White rice shouldn't cause a fiber problem. Brown rice will. If the olive oil is imported, it could be contaminated with soy.
When you're trying to recover by eating a simple, safe, diet, why on earth would you even consider putting a product such as this in your digestive system?
I doubt that Benefiber is actually beneficial for anyone (other than the manufacturer), whether they have MC or not.
Tex
Benefiber Powder, which contains less than 20 ppm of gluten and is therefore considered "gluten-free," based on both the FDA and the Codex Alimentarius Commission's proposed definition of less than 20 ppm. However, people who experience gluten intolerance should not consume any products, including Benefiber, that contain any level of gluten unless otherwise directed by their doctor.
https://www.drugs.com/drp/benefiber-supplement.htmlBenefiber Orange also conatains Wheat dextrin, citric acid, natural orange flavor, potassium citrate, aspartame, gum acacia, acesulfame potassium, maltodextrin, lactose (milk), triglycerides, sucrose acetate isobutyrate (adds a trivial amount of sugar), modified cornstarch, yellow 6, red 40
When you're trying to recover by eating a simple, safe, diet, why on earth would you even consider putting a product such as this in your digestive system?
I doubt that Benefiber is actually beneficial for anyone (other than the manufacturer), whether they have MC or not.
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.
The GI ordered ittex wrote:White rice shouldn't cause a fiber problem. Brown rice will. If the olive oil is imported, it could be contaminated with soy.
Benefiber Powder, which contains less than 20 ppm of gluten and is therefore considered "gluten-free," based on both the FDA and the Codex Alimentarius Commission's proposed definition of less than 20 ppm. However, people who experience gluten intolerance should not consume any products, including Benefiber, that contain any level of gluten unless otherwise directed by their doctor.https://www.drugs.com/drp/benefiber-supplement.htmlBenefiber Orange also conatains Wheat dextrin, citric acid, natural orange flavor, potassium citrate, aspartame, gum acacia, acesulfame potassium, maltodextrin, lactose (milk), triglycerides, sucrose acetate isobutyrate (adds a trivial amount of sugar), modified cornstarch, yellow 6, red 40
When you're trying to recover by eating a simple, safe, diet, why on earth would you even consider putting a product such as this in your digestive system?
I doubt that Benefiber is actually beneficial for anyone (other than the manufacturer), whether they have MC or not.
Tex
You have to use your best judgement when following GI docs' orders. Most gastroenterologists don't have the slightest idea how to properly treat MC. You have to know better than they do or you will be the one suffering, not them.
Tex
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.
I'm sensing alot of frustration....and by all means I get it!
It has taken me from May 2015 until just recently November 2017 to finally get a good healing on my gut.
It has been a viscous roller coaster of detective work. It can be done...I've done it, Gabes has done it, so has Tex that is why he is such a fountain of knowledge at this site and why everyone needs to ponder his words.
I have had Enterolab A1-C1 (yes it is $539...yes it has been the most valuable info for me).
I have also had my DNA read and I know even more about myself, and why some medications may just not work and why some may work too well! This is just another piece of my puzzle to learning about myself and why I have to eat certain things.
I had to introduce Cholystramine in order to absorb the bile that was making its way into my intestines and causing WD when I thought I had done everything under the sun to get to a remission point....but I wasn't quite healed yet....8 months on the Cholest powder regular formula not sugar free and I turned another healing corner....my healing didn't stop there, I had to tweak the food a bit more after that too...my staple has been cornish hen bone broth with rice noodle and carrot soup for 2.5 years now. Something has worked, healed etc...and now I tweak my life with histamine situations and take antihistamine accordingly as needed. I have done this medication free...FYI.
I do not know if I am a common healer and if my time being loyal to the diet and finding things to be less stressed about are actually what helped me get to a Norman state of mind now I don't know, but I have gotten here with lots of tears, hard work, many conversations at this forum and plenty of bathroom trips and tweaking of my last 2.5 years.
I have the utmost confidence that anyone reading this and is here learning will find their sweet spot for healing as long as they stick to their guns about it.
It has taken me from May 2015 until just recently November 2017 to finally get a good healing on my gut.
It has been a viscous roller coaster of detective work. It can be done...I've done it, Gabes has done it, so has Tex that is why he is such a fountain of knowledge at this site and why everyone needs to ponder his words.
I have had Enterolab A1-C1 (yes it is $539...yes it has been the most valuable info for me).
I have also had my DNA read and I know even more about myself, and why some medications may just not work and why some may work too well! This is just another piece of my puzzle to learning about myself and why I have to eat certain things.
I had to introduce Cholystramine in order to absorb the bile that was making its way into my intestines and causing WD when I thought I had done everything under the sun to get to a remission point....but I wasn't quite healed yet....8 months on the Cholest powder regular formula not sugar free and I turned another healing corner....my healing didn't stop there, I had to tweak the food a bit more after that too...my staple has been cornish hen bone broth with rice noodle and carrot soup for 2.5 years now. Something has worked, healed etc...and now I tweak my life with histamine situations and take antihistamine accordingly as needed. I have done this medication free...FYI.
I do not know if I am a common healer and if my time being loyal to the diet and finding things to be less stressed about are actually what helped me get to a Norman state of mind now I don't know, but I have gotten here with lots of tears, hard work, many conversations at this forum and plenty of bathroom trips and tweaking of my last 2.5 years.
I have the utmost confidence that anyone reading this and is here learning will find their sweet spot for healing as long as they stick to their guns about it.
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007