Hi Dogwood,
I found the drugs tough too. Here is Gabes suggested eating plan.
https://perskyfarms.com/phpBB2/viewtopic.php?t=22328
I highly recommend Tex's book. Link is in the top right hand corner.
Welcome to the forum.
Brandy
Some Thoughts On Treating Microscopic Colitis
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
My name is Karen and I live in Ohio. I decided today to stop the meds. The side effects are just too much. I went to the health food store and got some aloe Vera juice, a powder intestinal lining support drink, and some magnesium citrate. I’m cutting even more from my diet even though for me any and all foods are bad. One day I may be able to eat something and the next day not. Has anyone tried any of these things? Is there something that can help the inflammation other than the awful drugs. My medical doctor tells me this is the only way and she’s not against natural medicine. I’ve been fighting this for ten years but never ever have I been this bad this long. I’m not myself, I’m always in a fog or just absent I think because I’m always sick. I’ve been told magnesium can help and that my body is depleted of it. I find it makes the diarrhea much worse. The woman at the health food store said this citrate is easier on a body and told me to only take half a dose. I laugh at the potty people signature because that’s what I have called myself for some time . Or made fun of the song party all the time changing it to potty all the time . Have to smile sometimes . If anyone has tried any of these things or has other suggestions please let me know. Thank you Karen
Hi Karen,
Welcome to the group. You can stop the inflammation and heal your digestive system if you avoid all foods and all medications that cause your immune system to produce antibodies. Obviously that's easy to say and tough to do, but it's doable because virtually all of us here have done it (or are in the process of doing it). It takes a while to recover, but a safe diet is the surest way to recover. I agree with Brandy — the eating plan she suggested is the fastest way to get this disease under control.
I believe the lady in the health food store may have had good intentions, but she misinformed you. Magnesium citrate may be easier on the body than some types of magnesium supplements, but it's also a laxative. Most of us take magnesium glycinate (chelated magnesium) because it's the type of magnesium that's easily absorbed and the least likely to cause diarrhea.
MC depletes magnesium and vitamin D, so if you haven't been taking them, yes, you are probably very deficient in magnesium and vitamin D. Vitamin D is necessary to fuel our immune system so that it can heal our intestines. And magnesium is used by the body to convert vitamin D into the active chemical form so that our immune system can use it. MC also depletes many other vitamins, especially some of the important "B" vitamins. The liver can store vitamin B for up to 5 years, but as long as you have been reacting, you are probably short of several B vitamins, especially vitamin B-12, and a deficiency of vitamin B-12 can cause many neurological issues. But first we need to stop the diarrhea, so that your digestive system can heal before we worry very much about vitamins and minerals, because any type of supplements that you use can prevent you from getting better. Intestinal lining support drinks are more likely to cause problems than to help healing for most of us. We do better without them. At this point, almost anything you eat or drink can make you react, so you need to avoid everything except a few safe foods while you are recovering.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. You can stop the inflammation and heal your digestive system if you avoid all foods and all medications that cause your immune system to produce antibodies. Obviously that's easy to say and tough to do, but it's doable because virtually all of us here have done it (or are in the process of doing it). It takes a while to recover, but a safe diet is the surest way to recover. I agree with Brandy — the eating plan she suggested is the fastest way to get this disease under control.
I believe the lady in the health food store may have had good intentions, but she misinformed you. Magnesium citrate may be easier on the body than some types of magnesium supplements, but it's also a laxative. Most of us take magnesium glycinate (chelated magnesium) because it's the type of magnesium that's easily absorbed and the least likely to cause diarrhea.
MC depletes magnesium and vitamin D, so if you haven't been taking them, yes, you are probably very deficient in magnesium and vitamin D. Vitamin D is necessary to fuel our immune system so that it can heal our intestines. And magnesium is used by the body to convert vitamin D into the active chemical form so that our immune system can use it. MC also depletes many other vitamins, especially some of the important "B" vitamins. The liver can store vitamin B for up to 5 years, but as long as you have been reacting, you are probably short of several B vitamins, especially vitamin B-12, and a deficiency of vitamin B-12 can cause many neurological issues. But first we need to stop the diarrhea, so that your digestive system can heal before we worry very much about vitamins and minerals, because any type of supplements that you use can prevent you from getting better. Intestinal lining support drinks are more likely to cause problems than to help healing for most of us. We do better without them. At this point, almost anything you eat or drink can make you react, so you need to avoid everything except a few safe foods while you are recovering.
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.
I went back the next day and returned the things I had bought. Your book came today and I can’t put it down. After reading I’ve decided to give the endocort a chance to give my body a chance to heal. I’m having a bad week only leaving the house two days. I’m tired of being sick. As of yesterday I’ve made a commitment to stop all gluten and many other things. I’m a cook and this is not going to be easy but I’m sure I will adjust. My mental well being is suffering because of all of this. I cry all the time. I can’t enjoy much of anything because of the diarrhea. It’s never been this bad. I know I sound down and I just am. I’m normally not like this at all. It’s all just so much. I appreciate the book and hope it helps me understand.
Boy does this resonate so well with how I began my LC journey, and even though I have accepted a whole lot of food changes I still have my bad days (mentally and physically) so don't beat yourself up about this ok.
None of us asked for this so every one of us has had lots of grieving to go thru....how dare sour bodies play such a cruel trick on us when we were just starting to really enjoy anything and everything we wanted to eat and do in life.
There are plenty of times I ask myself why was I and thousands of others chosen to have to be different, perhaps there is a silver lining to all this and we just aren't aware of it yet
I have to stay positive or I will forever despair down a rabbit hole if I don't.
Chin up, you can do this!
Hugs
Erica
None of us asked for this so every one of us has had lots of grieving to go thru....how dare sour bodies play such a cruel trick on us when we were just starting to really enjoy anything and everything we wanted to eat and do in life.
There are plenty of times I ask myself why was I and thousands of others chosen to have to be different, perhaps there is a silver lining to all this and we just aren't aware of it yet
I have to stay positive or I will forever despair down a rabbit hole if I don't.Chin up, you can do this!
Hugs
Erica
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
Re: Some Thoughts On Treating Microscopic Colitis
Thank you for your comments/info. I have been thinking about going to EnteroLabs to find out what foods to avoid. How helpful are they in determining what to avoid? I have been on and off Budesinide. It was helpful for a short time. I am convinced that I am eating my way onto the potty. Any comments are greatly appreciated.
Blessings to all,
Rusty
Blessings to all,
Rusty
Rusty
Re: Some Thoughts On Treating Microscopic Colitis
Hi Rusty,
If you've been taking budesonide for longer than 6 months or so, it will begin to suppress your immune system, so the EnteroLab tests may show some false negative results. On the other hand, if the budesonide is not working very well, anyway, or you haven't used any in a couple of months or more, it may not make much difference (if any) on your EnteroLab results.
Other than that, we have found the EnteroLab stool tests to be the most accurate tests currently available anywhere in the world, for detecting the type of food sensitivities associated with MC. Most of us who have ordered a kit, consider it to be some of the best money we have ever spent to resolve our health problems.
I hope this helps.
Tex
If you've been taking budesonide for longer than 6 months or so, it will begin to suppress your immune system, so the EnteroLab tests may show some false negative results. On the other hand, if the budesonide is not working very well, anyway, or you haven't used any in a couple of months or more, it may not make much difference (if any) on your EnteroLab results.
Other than that, we have found the EnteroLab stool tests to be the most accurate tests currently available anywhere in the world, for detecting the type of food sensitivities associated with MC. Most of us who have ordered a kit, consider it to be some of the best money we have ever spent to resolve our health problems.
I hope this helps.
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.
Re: Some Thoughts On Treating Microscopic Colitis
Hi Tex,
Thank you again. I was on Budesonide for perhaps a year. It wasn't working very well after awhile. I just started it again about a week ago, and it seems to be working. Would it be better if I stopped it again for about a week or so before using EnteroLabs?
Rusty
Thank you again. I was on Budesonide for perhaps a year. It wasn't working very well after awhile. I just started it again about a week ago, and it seems to be working. Would it be better if I stopped it again for about a week or so before using EnteroLabs?
Rusty
Rusty
Re: Some Thoughts On Treating Microscopic Colitis
As long as you were off the budesonide for at least several months after you took It for a year, restarting a treatment after only a week or two shouldn't matter, as far as the EnteroLab tests are concerned. But if there was only an interval of a few weeks, or even a month or so between the year-long treatment, and resuming a new treatment, you would probably have to allow about 4 to 6 months without budesonide before the EnteroLab tests would be accurate. But I'm just guessing here. It would be better to call the lab and get a professional opinion on how long you need to stay away from budesonide after a year-long treatment. I've never seen an exact timing requirement on a situation such as this.
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.
Re: Some Thoughts On Treating Microscopic Colitis
Great post Tex...completely agree! Change is hard and many can never accept it completely. I cannot believe how much better I am feeling! I was already living on a very limited diet when I first read your book. My daily body aches have almost disappeared, my Tylenol doses have decreased dramatically, my psoriatic arthritis symptoms are becoming much milder and my skin psoriasis is also improving greatly, this is just of the few benefits apart from clearing up endless watery D. The changes I adapted since the book have been so helpful....the changes that needed to be made to bring a healthy balance back to my gut are completely worth it :) So thankful for your advice Tex and for the support of this group.
Diagnosed with CC, Hashimoto Thyroid, Costochondritis, psoriatic arthritis and psoriasis. Cannot eat gluten, dairy, nightshades, and high oxalate veggies.
Re: Some Thoughts On Treating Microscopic Colitis
Still in the bathroom manning the throne, reading random threads… nice to see such enthusiasm about trying to help MC with dietary modification, and it’s really nice to read when it is helping 
I’ve had steroid infusions (when the bowels are so bad they won’t absorb pills), been on micophenolate mofetil for 10 months, other immunomodulators, cholestyramine, mesalazine, and Budesonide (currently commencing tapering from a 7 month stint). I have side effects from the Budesonide, which are unavoidable (the saying that most of it stays in the bowel and what little is absorbed into the blood stream is metabolised quickly by first pass processes in the liver is questionable logic and flawed science when dealing with a gut that has no consistent barrier to absorption of all sorts of things that shouldn’t be - aka leaky gut), and causing me strife (eye and vision problems, hearing loss, etc). However, I did need to take it because my gut was so bad I was nil by mouth after a 5 month flare, and very unwell. No food was tolerable. So this made it impossible to follow a safe diet (of course!). So here I am, back to yet again doing my slow introduction of the safe foods, the ones that work for me. We all know what that’s like - there’s the general rule that some foods are worse than others for MC, however in addition there are individual sensitivities. I’m ok with my own yoghurt I make from goats milk, but if I sniff coconut oil my bowel blows up like I’ve just set off a grenade in my gut…thus demonstrating my anecdote that it’s not only the gut mucosa and cellular lining integrity that can be not intact; I personally believe that any membrane that isn’t intact can allow things that shouldn’t get on the other side, in, and once in the liquid shunting system (be it vascular or lymphatic) it goes where it wants to create havoc, and that’s usually in other areas that have poor integrity in their barrier matrices/wrong’un immune responses (like LC is a wrong’un when it comes to the immune cell behaviour). *A wrong’un (noun) is an Au colloquialism for a thing that is not performing as it should (just in case the term is unfamiliar).
I digress…
Getting back to the point (assuming there is one),I’ll be next trying Entyvio (knowing full well there are side effects, and weighing them up against the life of throne time I currently lead despite all other best intentions and efforts), in an attempt to get my bowel under some sort of state of reduced inflammation. I believe my body is non responsive to diet and steroids because I have a weird antibody situation with plasma cells in bone marrow making cells and other stuff that has gone rogue and is causing collateral damage (it really is: peripheral neuropathy; amongst other lovely things). So, it would be heavenly to have a dietary means of controlling inflammatory responses in bowel tissue, however sometimes there are the impacts of systemic intrinsic (in my case untreatable) dysfunction which limit or inhibit the effectiveness of such efforts.
I am hoping that once I can get some reduced inflammation from Entyvio, I might be able to use diet to maintain a state of bowel happiness
I’ve had steroid infusions (when the bowels are so bad they won’t absorb pills), been on micophenolate mofetil for 10 months, other immunomodulators, cholestyramine, mesalazine, and Budesonide (currently commencing tapering from a 7 month stint). I have side effects from the Budesonide, which are unavoidable (the saying that most of it stays in the bowel and what little is absorbed into the blood stream is metabolised quickly by first pass processes in the liver is questionable logic and flawed science when dealing with a gut that has no consistent barrier to absorption of all sorts of things that shouldn’t be - aka leaky gut), and causing me strife (eye and vision problems, hearing loss, etc). However, I did need to take it because my gut was so bad I was nil by mouth after a 5 month flare, and very unwell. No food was tolerable. So this made it impossible to follow a safe diet (of course!). So here I am, back to yet again doing my slow introduction of the safe foods, the ones that work for me. We all know what that’s like - there’s the general rule that some foods are worse than others for MC, however in addition there are individual sensitivities. I’m ok with my own yoghurt I make from goats milk, but if I sniff coconut oil my bowel blows up like I’ve just set off a grenade in my gut…thus demonstrating my anecdote that it’s not only the gut mucosa and cellular lining integrity that can be not intact; I personally believe that any membrane that isn’t intact can allow things that shouldn’t get on the other side, in, and once in the liquid shunting system (be it vascular or lymphatic) it goes where it wants to create havoc, and that’s usually in other areas that have poor integrity in their barrier matrices/wrong’un immune responses (like LC is a wrong’un when it comes to the immune cell behaviour). *A wrong’un (noun) is an Au colloquialism for a thing that is not performing as it should (just in case the term is unfamiliar).
I digress…
Getting back to the point (assuming there is one),I’ll be next trying Entyvio (knowing full well there are side effects, and weighing them up against the life of throne time I currently lead despite all other best intentions and efforts), in an attempt to get my bowel under some sort of state of reduced inflammation. I believe my body is non responsive to diet and steroids because I have a weird antibody situation with plasma cells in bone marrow making cells and other stuff that has gone rogue and is causing collateral damage (it really is: peripheral neuropathy; amongst other lovely things). So, it would be heavenly to have a dietary means of controlling inflammatory responses in bowel tissue, however sometimes there are the impacts of systemic intrinsic (in my case untreatable) dysfunction which limit or inhibit the effectiveness of such efforts.
I am hoping that once I can get some reduced inflammation from Entyvio, I might be able to use diet to maintain a state of bowel happiness
Upholding equity, encouraging kindness, and being brave enough to smile and have an open heart when you’re challenged…a work in progress that is worthy of persistence.
Re: Some Thoughts On Treating Microscopic Colitis
To shed a little light on a point you raised, regarding a "leaky" esophagus: A prompt (IgE-based) response to a protein exposure doesn't mean that you have a leaky (increased porosity) esophagus, it simply means that something you ingested activated one or more immune system receptors. The digestive tract is loaded with immune system receptors from mouth to anus. The receptors are at the surface of the mucosal lining, so no "leakage" is necessary for a reaction to occur. Only the bonding of an antigen to a receptor is needed, in order to trigger a reaction. Increased porosity (through the intestinal lining) is only necessary when generating a "new" food sensitivity. Existing food sensitivities are detected by receptors on the mucosal surface, anywhere in the digestive tract.
Are you in Australia? That never dawned on me until you mentioned the Au colloquialism. Or were you referring to a gold colloquialism? if you're from Australia, no wonder you've got such a great sense of humor. You're dealing with some tough issues, so I hope you can continue to find good solutions.
I recall seeing another of your posts asking about the experiences of MC patients who are using Entevio. I doubt there are very many of us on this board who are using Entevio. But the Microscopic Colitis Foundation published a newsletter on the use of Biologics to treat IBDs a couple of months ago. If you haven't seen it, you can read or download a copy at the link below:
https://www.microscopiccolitisfoundatio ... fcb80f.pdf
Most of the trials done with Biologics use cherry picked (known to be responsive) subjects for the trials, so that they can show a much better response rate, than actually occurs. As discussed in the newsletter, real world IBD patients show an actual response rate that's far below the claimed response rates. The actual efficacy of those products Is typically greatly exaggerated. If you decide to try Entyvio, please let us know how well it works (or doesn't work) for you.
Tex
Are you in Australia? That never dawned on me until you mentioned the Au colloquialism. Or were you referring to a gold colloquialism? if you're from Australia, no wonder you've got such a great sense of humor. You're dealing with some tough issues, so I hope you can continue to find good solutions.
I recall seeing another of your posts asking about the experiences of MC patients who are using Entevio. I doubt there are very many of us on this board who are using Entevio. But the Microscopic Colitis Foundation published a newsletter on the use of Biologics to treat IBDs a couple of months ago. If you haven't seen it, you can read or download a copy at the link below:
https://www.microscopiccolitisfoundatio ... fcb80f.pdf
Most of the trials done with Biologics use cherry picked (known to be responsive) subjects for the trials, so that they can show a much better response rate, than actually occurs. As discussed in the newsletter, real world IBD patients show an actual response rate that's far below the claimed response rates. The actual efficacy of those products Is typically greatly exaggerated. If you decide to try Entyvio, please let us know how well it works (or doesn't work) for 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.
-
dolson
- Gentoo Penguin
- Posts: 310
- Joined: Fri Mar 30, 2018 12:35 pm
- Location: Hilton Head, SC
- Contact:
Re: Some Thoughts On Treating Microscopic Colitis
Hi Tex, it's me again - Dorothy. Can't we use plantains? They are related to the banana family. The outside or skin is dark like it's been around a while. I don't like having to wait weeks for bananas to look almost rotten. I think it's for better for diabetics and you don't get spikes in your blood sugar plan. I can only find them at Publix. Haven't checked Whole PayCheck. Can't we eat this with no sugar, dairy-free yogurt. I make a fruit salad with this no sugar, and no cow's milk yogurt. I sprinkle on sliced almonds. It's delish!
Nobody talks about plantains. The outside looks black and almost rotten. Thanks, Dorothy
Nobody talks about plantains. The outside looks black and almost rotten. Thanks, Dorothy
Re: Some Thoughts On Treating Microscopic Colitis
Hi Dorothy,
Sure, plantations should be safe for most of us. As you say though, sometimes they're hard to find.
Tex
Sure, plantations should be safe for most of us. As you say though, sometimes they're hard to find.
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.