HI there Gergley
belated welcome - and sympathies that you had to find us.
I will do my best to answer some of your questions.
(preface, I have just worked 60 hours plus, 7 days straight so have not read all the posts/discussions and I am a bit tired answers may sound brief/short )
psyllium husk - may absorb water, but your excess WD is due to inflammation
what works for other IBD's may not work so well for MC - CC
carrots
each person has different triggers. some people are ok with carrots, some aren't. cant give you the science or technical explaination
listen to your body and go with what works best for you
beef
is it organic grass fed beef you are having?
if not - grain fed beef is fed a lot of wheat, corn and soy. and you may be reacting to that
ALSO cows have had quite a bit of genetic modification over the past 20 years. beef now is not the same as beef 20-30 years ago.
many here do better on game/wild - rarer meats - venison, duck etc as there is less genetic modification and they are grass fed animals.
omega 3
taking a capsule is not the same as eating omega rich foods. ALSO supplements can have lots of fillers like soy, etc AND taking high dose oil supps is not ideal when inflamed
how is it possible, well you are super inflamed and too many different things, changes at once also causes issues for your body.
like we mention in the stage one eating plan, bland, low amount of ingredients is how to reduce inflammation.
don't make too many changes at once, trying something one day and something else the next day is causing too much stress on your gut!
fatty foods
there is good fat and bad fat
chicken from KFC, has gluten, soy, spices, and used grain fed meat - multiple triggers
good fats are things like coconut oil, fatty serves of grass fed meats - no wheat, no soy, no spices.
the T-bone steak - if it was cooked rare (and was not grass fed) then it is hard work for your body to digest it - this leads to more inflammation (when you are already inflamed)
as we mention in the stage one eating plan, having well cooked ground meats as in casseroles, stews etc - is a much better option. easy for your body to digest, less inflammation
if you go back to the stage one eating plan first post (page one of this thread) there are links to articles/science about GLUTEN - why it is highly inflammatory
it also has link to why the current day gluten testing is not thorough and valid.
antibiotics for Hpylori - many here get short term improvements from antiobiotics. this short term improvement will last longer if you are following the low inflammation gut healing eating plan we suggest -
avoid takeaway, avoid your major triggers and give your body time to heal.
SUPPLEMENTS - as we suggest in the post, at first we encourage you to start with Vit D3 and magnesium. with time and healing then look at other supplements.
re the multivitamin - my only comment is, if there is an ingredient in there that may be causing issues it is hard to identify. for now best to minimise things and ensure there are not hidden triggers
hope this helps
Suggested Eating Plan - Stage ONE
Thanks, I try to do my best.
In Hungary, we don't know if the cows were grass feeded or not, no such information... But if I`m not reacting to normal gluten (bread), I don't think that it can be a problem throughout the meet. Soy can be different because I not usually eat anything with soy.
Today I start to eat GF again, and follow stage 1 eating plan. Let's see... At least it will not hurt, that`s sure.
In Hungary, we don't know if the cows were grass feeded or not, no such information... But if I`m not reacting to normal gluten (bread), I don't think that it can be a problem throughout the meet. Soy can be different because I not usually eat anything with soy.
Today I start to eat GF again, and follow stage 1 eating plan. Let's see... At least it will not hurt, that`s sure.
Male. | Age of onset: 31. | Diagnosis of collagenous colitis at the age of 33. (A few days ago.) | Symptoms: mild morning diarrhea or loose stool once a day. Severe watery diarrhea (3-4 times after eating triggering food) once or twice in a month.
-
charliemudcat
- Posts: 18
- Joined: Wed Sep 20, 2017 4:02 pm
- Location: Minnesota
Beef
I am currently in full blown diarrhea mode--slightly controlled by 3 mg budesonide every other day, loperamide every other day that I don't take the budesonide. I have been trying to eat per the elimination diet guidelines, but for some reason, decided beef was an option. Is it not?
And, if I am having literally no form to my stool at all, should I be back on bone broth and white rice?
Or should I go ahead with my beef stew that I just made with carrots, potatoes and green beans, all organic, some from my garden? Beef is also grassfed and organic and hella expensive! I decided not to share the price with my husband as he is somewhat of a cheapskate when it comes to food prices...
And, if I am having literally no form to my stool at all, should I be back on bone broth and white rice?
Or should I go ahead with my beef stew that I just made with carrots, potatoes and green beans, all organic, some from my garden? Beef is also grassfed and organic and hella expensive! I decided not to share the price with my husband as he is somewhat of a cheapskate when it comes to food prices...
Katie
Katie,
You are probably OK with the beef, but some of us are intolerant of beef. The safest meats are lamb, turkey, venison, goose, duck, rabbit, etc.
Regarding your meds: I'm curious why you're taking a subtheraputic dose of budesonide if you are having diarrhea. Subtheraputic doses during a flare are almost always ineffective — it takes a full dose to get results.
Tex
You are probably OK with the beef, but some of us are intolerant of beef. The safest meats are lamb, turkey, venison, goose, duck, rabbit, etc.
Regarding your meds: I'm curious why you're taking a subtheraputic dose of budesonide if you are having diarrhea. Subtheraputic doses during a flare are almost always ineffective — it takes a full dose to get results.
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.
-
charliemudcat
- Posts: 18
- Joined: Wed Sep 20, 2017 4:02 pm
- Location: Minnesota
So, I have been tapering the budesonide for several months. I began in May with 9 mg. I tapered to 6 mg and stayed on that dosage for a month. I then tapered to 3 mg and stayed on that dosage for a month or more. I then went to 1 3 mg capsule every other day.
With each tapering, my bowels got steadily worse. In a nutshell, I have not been able to sustain staying off budesonide for the past two years! This is my problem. I feel like I'm between a rock and a hard place.
It is almost as if the medicine, unless taken at 9 mg daily, makes my situation worse. I don't want to be on the meds for the rest of my life and suffer the side effects. I would like to find out what is making me so sick.
If I take a full dosage, it will mask my symptoms to the degree that I will never be able to tell what it is that irritates my colon so much.
So, since we're treating ourselves and no physicians can help, I am sort of at my wit's end. If budesonide masks the symptoms, it makes sense that I must suffer the symptoms in order to find out what is the problem, right?
I am confused.
With each tapering, my bowels got steadily worse. In a nutshell, I have not been able to sustain staying off budesonide for the past two years! This is my problem. I feel like I'm between a rock and a hard place.
It is almost as if the medicine, unless taken at 9 mg daily, makes my situation worse. I don't want to be on the meds for the rest of my life and suffer the side effects. I would like to find out what is making me so sick.
If I take a full dosage, it will mask my symptoms to the degree that I will never be able to tell what it is that irritates my colon so much.
So, since we're treating ourselves and no physicians can help, I am sort of at my wit's end. If budesonide masks the symptoms, it makes sense that I must suffer the symptoms in order to find out what is the problem, right?
I am confused.
Katie
-
charliemudcat
- Posts: 18
- Joined: Wed Sep 20, 2017 4:02 pm
- Location: Minnesota
Hi Katie,
I hear you — it's confusing at best. Here's the bottom line. If you are going to use diet changes to treat MC (which is the best choice), then the purpose of the budesonide is simply to mask the symptoms while the diet heals your intestines. But if you begin to taper the dose and you begin to have diarrhea, then three possibilities exist:
1. You are tapering the dose too soon — the diet changes haven't had sufficient time to heal the gut.
2. Your diet is either cross-contaminated by a known food sensitivity or contaminated by an unrecognized food sensitivity.
3. A combination of the first two possibilities exists.
The only reason for taking budesonide is to mask/prevent the symptoms. It only treats the symptoms, not the root cause of the symptoms. But if you don't want to mask the symptoms because you want to be able to detect food sensitivities so that you can fine-tune your diet, then there's no reason to take the budesonide because it does not speed up healing. In fact, published research shows that corticosteroids slow down healing. They can make life more pleasant during recovery, but they do it at the expense of extended healing time.
Loperamide (imodium) simply slows down motility. It's a relatively safe way to postpone bowel movements. It won't stop diarrhea, or treat the cause, but in most cases, it will reduce motility enough to allow one to get out and about with more security for a while. IOW, it will buy you some time without the constant threat of urgent diarrhea
On the other hand, if you do want to stop the diarrhea while you are waiting for the diet to heal your gut, then you need to increase the budesonide dose back to a theraputic dose. The time to reach remission can vary by a great deal, but it usually ranges from three to six months. For that reason, most people who successfully use budesoniode to mask the symptoms while they are healing the intestinal damage by following a restricted diet, begin to slowly taper the dose of budesonide after at least three months at full dose (unless constipation prompts them to reduce the dose sooner), and they complete the taper to end the treatment about three months later, for a full treatment regimen of about six months.
Do you understand what I'm trying to say? You might have begun to taper the dose too soon, because ideally, you should be D-free, while still being able to detect food sensitivities by taking just enough budesonide to prevent D, but only taking enough to prevent D if you avoid all your food sensitivities. It's a fine distinction. The proper way (or at least the optimum way) to taper budesonide is to reduce the dose as soon as you become constipated, rather than reducing the dose based on a time schedule. Following a set time schedule rarely works well, because we are all different in how we respond to budesonide.
Tex
I hear you — it's confusing at best. Here's the bottom line. If you are going to use diet changes to treat MC (which is the best choice), then the purpose of the budesonide is simply to mask the symptoms while the diet heals your intestines. But if you begin to taper the dose and you begin to have diarrhea, then three possibilities exist:
1. You are tapering the dose too soon — the diet changes haven't had sufficient time to heal the gut.
2. Your diet is either cross-contaminated by a known food sensitivity or contaminated by an unrecognized food sensitivity.
3. A combination of the first two possibilities exists.
The only reason for taking budesonide is to mask/prevent the symptoms. It only treats the symptoms, not the root cause of the symptoms. But if you don't want to mask the symptoms because you want to be able to detect food sensitivities so that you can fine-tune your diet, then there's no reason to take the budesonide because it does not speed up healing. In fact, published research shows that corticosteroids slow down healing. They can make life more pleasant during recovery, but they do it at the expense of extended healing time.
Loperamide (imodium) simply slows down motility. It's a relatively safe way to postpone bowel movements. It won't stop diarrhea, or treat the cause, but in most cases, it will reduce motility enough to allow one to get out and about with more security for a while. IOW, it will buy you some time without the constant threat of urgent diarrhea
On the other hand, if you do want to stop the diarrhea while you are waiting for the diet to heal your gut, then you need to increase the budesonide dose back to a theraputic dose. The time to reach remission can vary by a great deal, but it usually ranges from three to six months. For that reason, most people who successfully use budesoniode to mask the symptoms while they are healing the intestinal damage by following a restricted diet, begin to slowly taper the dose of budesonide after at least three months at full dose (unless constipation prompts them to reduce the dose sooner), and they complete the taper to end the treatment about three months later, for a full treatment regimen of about six months.
Do you understand what I'm trying to say? You might have begun to taper the dose too soon, because ideally, you should be D-free, while still being able to detect food sensitivities by taking just enough budesonide to prevent D, but only taking enough to prevent D if you avoid all your food sensitivities. It's a fine distinction. The proper way (or at least the optimum way) to taper budesonide is to reduce the dose as soon as you become constipated, rather than reducing the dose based on a time schedule. Following a set time schedule rarely works well, because we are all different in how we respond to budesonide.
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.
-
charliemudcat
- Posts: 18
- Joined: Wed Sep 20, 2017 4:02 pm
- Location: Minnesota
So, if I understand you, I need to go back on the budesonide full strength (9 mg a day)' continue on the dairy-free, gluten free and all other potentially offending foods for a period of several months while I very slowly taper off the budesonide? I confess I was looking for a quicker fix. In my dream scenario, I would heal the gut in two to three weeks, discover I was perhaps not intolerant to my favorite foods and be able to live a relatively normal life. Obviously overly optimistic.
Alternatively, could I continue off the budesonide, take Imodium to control the volitility of the D and hope that it doesn't take months to start feeling better? Maybe what you're very kindly telling me is that I need to just continue with the diet changes until I have a semi-solid BM regardless. And it's likely going to take a while.
I do understand that medication doesn't heal it. I am having difficulty striking a balance between wanting to get to the test phase of the elimination diet and having the patience to let my body heal.
Thanks for your very thoughtful and patient responses.
Alternatively, could I continue off the budesonide, take Imodium to control the volitility of the D and hope that it doesn't take months to start feeling better? Maybe what you're very kindly telling me is that I need to just continue with the diet changes until I have a semi-solid BM regardless. And it's likely going to take a while.
I do understand that medication doesn't heal it. I am having difficulty striking a balance between wanting to get to the test phase of the elimination diet and having the patience to let my body heal.
Thanks for your very thoughtful and patient responses.
Katie
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Katie
you are not alone with your dream scenario for quick healing and not wanting to give up favourite foods. many come to this group with same goal.
keep in mind that with a broken bone, it takes 8-12 weeks to heal that (and that is via 6 weeks or so of immobilisation with a cast)
and the gut takes longer.
and the other reality to this, MC is for life. yes, many here get a good remission 'minimal symptoms etc' albeit if they consume too many trigger foods and/or have a highly stressful life event MC returns (and for many way worse than the first time)
yes Tex is kindly telling you that you need to continue with the eating plan changes
and to expand on this, I will also encourage you to do some mental and emotional work about 'life with MC' - things like mindfulness, meditation, yoga etc are good resources to expand our patience levels and 'acceptance' levels of the challenges that come with life with MC.
within this guidelines section there is a topic with good reads and resources etc that may assist you.
you are not alone with your dream scenario for quick healing and not wanting to give up favourite foods. many come to this group with same goal.
keep in mind that with a broken bone, it takes 8-12 weeks to heal that (and that is via 6 weeks or so of immobilisation with a cast)
and the gut takes longer.
and the other reality to this, MC is for life. yes, many here get a good remission 'minimal symptoms etc' albeit if they consume too many trigger foods and/or have a highly stressful life event MC returns (and for many way worse than the first time)
yes Tex is kindly telling you that you need to continue with the eating plan changes
and to expand on this, I will also encourage you to do some mental and emotional work about 'life with MC' - things like mindfulness, meditation, yoga etc are good resources to expand our patience levels and 'acceptance' levels of the challenges that come with life with MC.
within this guidelines section there is a topic with good reads and resources etc that may assist you.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
charliemudcat
- Posts: 18
- Joined: Wed Sep 20, 2017 4:02 pm
- Location: Minnesota
So I just bought Tex's book. Thanks all, for your help and advice. I think I made the decision to do the elimination diet without much thought, but now that I'm here, I'm going to learn as much as I can and see if I can come to peace with it.
I'm sure I'll have more questions. Thanks again for your support!
I'm sure I'll have more questions. Thanks again for your support!
Katie
Katie,
Yes, if the diarrhea is not debilitating, I would just continue with the diet because you're getting closer to remission every day. If the diarrhea interferes with your work or your lifestyle in general, more than you care to put up with, then you need to start over with the budesonide dose and begin to decrease the dose when you notice constipation symptoms.
You're very welcome.
Tex
Yes, if the diarrhea is not debilitating, I would just continue with the diet because you're getting closer to remission every day. If the diarrhea interferes with your work or your lifestyle in general, more than you care to put up with, then you need to start over with the budesonide dose and begin to decrease the dose when you notice constipation symptoms.
You're very welcome.
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.
-
charliemudcat
- Posts: 18
- Joined: Wed Sep 20, 2017 4:02 pm
- Location: Minnesota
Confusion
So, after reading on this website for a few days and online in general, striving to understand the way forward, I'm wondering if I should go back on a full dose of budesonide and plan on being on it while I do the elimination diet. I have been awfully depleted since I started it and battling D with imodium, which always seems to take away my appetite.
My question is this: should I perform some food sensitivity testing before I eliminate things that I may not have a sensitivity to? I'm assuming I'm probably gluten intolerant at the very least, and maybe dairy, but I would love to know definitively about other foods too. What if I am confining myself to rice and have a rice sensitivity?
My problem is the expense and the rather complex array of testing available. Can't really afford all the testing, but worried I would leave something out and that would be the offending food.
In short, I'm still confused about the way forward. I know Wayne is not my doctor (or even a doctor!) but as a fellow sufferer who has determined the causes of so much suffering, I tend to trust him more than my doctor at this point, who has not offered much of anything in terms of healing, just medication to treat the symptoms.
So, the question is this:
1) Budesonide, normal diet and testing?
2) Budesonide and continued diet that restrict everything?
3) Budesonide and diet that restricts gluten and dairy only?
4) Budesonide, restrictive diet and testing?
5) Budesonide, gluten and dairy only restricted and testing?
I'm currently eating the following:
rice, chicken, bone and chicken broth, rice cereal, almond milk, cooked carrots and cooked green beans, potatoes, olive oil, salt and pepper.
Thanks again for your response,
My question is this: should I perform some food sensitivity testing before I eliminate things that I may not have a sensitivity to? I'm assuming I'm probably gluten intolerant at the very least, and maybe dairy, but I would love to know definitively about other foods too. What if I am confining myself to rice and have a rice sensitivity?
My problem is the expense and the rather complex array of testing available. Can't really afford all the testing, but worried I would leave something out and that would be the offending food.
In short, I'm still confused about the way forward. I know Wayne is not my doctor (or even a doctor!) but as a fellow sufferer who has determined the causes of so much suffering, I tend to trust him more than my doctor at this point, who has not offered much of anything in terms of healing, just medication to treat the symptoms.
So, the question is this:
1) Budesonide, normal diet and testing?
2) Budesonide and continued diet that restrict everything?
3) Budesonide and diet that restricts gluten and dairy only?
4) Budesonide, restrictive diet and testing?
5) Budesonide, gluten and dairy only restricted and testing?
I'm currently eating the following:
rice, chicken, bone and chicken broth, rice cereal, almond milk, cooked carrots and cooked green beans, potatoes, olive oil, salt and pepper.
Thanks again for your response,
Katie
Katie,
Thank you for the kind words. I'm not sure I understand your question, but here's an attempt to answer it anyway:
Your specified diet might work, because that diet would work for most people. If you find the diarrhea and other symptoms debilitating, you can probably (it works for most patients, not all) stop the symptoms within a week or two by taking budesonide while waiting for the diet to work. Budesonide slows down healing slightly (usually not by much) and the dose will have to be slowly tapered when ending the treatment to prevent a relapse of symptoms.
If you decide to order any tests (to remove any doubt about food sensitivities), the tests most people use are the A1 and C1 panels (link below), with a combined (discounted) price of $539. For vegetarians or vegans the correct tests are the A2 and C2 Panels.
https://www.enterolab.com/StaticPages/T ... #PanelA1C1
I hope this is helpful.
Tex
Thank you for the kind words. I'm not sure I understand your question, but here's an attempt to answer it anyway:
Your specified diet might work, because that diet would work for most people. If you find the diarrhea and other symptoms debilitating, you can probably (it works for most patients, not all) stop the symptoms within a week or two by taking budesonide while waiting for the diet to work. Budesonide slows down healing slightly (usually not by much) and the dose will have to be slowly tapered when ending the treatment to prevent a relapse of symptoms.
If you decide to order any tests (to remove any doubt about food sensitivities), the tests most people use are the A1 and C1 panels (link below), with a combined (discounted) price of $539. For vegetarians or vegans the correct tests are the A2 and C2 Panels.
https://www.enterolab.com/StaticPages/T ... #PanelA1C1
I hope this is helpful.
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.
-
charliemudcat
- Posts: 18
- Joined: Wed Sep 20, 2017 4:02 pm
- Location: Minnesota
Thanks, Tex.
When I take 9mg budesonide a day, my symptoms pretty much disappear within a few days. So my plan is to continue with the foods I listed and when I have the cash, I’ll get those two tests done so I know where I stand.
Have you or the people on this forum ever had an experience where Enterolab was wrong and a food they said registered as a sensitivity was not? I have been reading about the lab and although I have not read much negative about it, I do get that their research has not been peer reviewed, correct?
That being said, I don’t have much faith in the medical establishment when it comes to MC, so even given some misgivings I would likely go ahead with the tests.
Again, thanks for sharing!
When I take 9mg budesonide a day, my symptoms pretty much disappear within a few days. So my plan is to continue with the foods I listed and when I have the cash, I’ll get those two tests done so I know where I stand.
Have you or the people on this forum ever had an experience where Enterolab was wrong and a food they said registered as a sensitivity was not? I have been reading about the lab and although I have not read much negative about it, I do get that their research has not been peer reviewed, correct?
That being said, I don’t have much faith in the medical establishment when it comes to MC, so even given some misgivings I would likely go ahead with the tests.
Again, thanks for sharing!
Katie
EnteroLab might have an occasional false negative test result but I don't recall ever hearing of a false positive result. If they claim you have a certain food sensitivity, you have a sensitivity to that food. But no lab in the world gets perfect results. Skin tests are little better than 50-50 accuracy, for example. And blood tests are not much better, despite claims to the contrary. Why would you expect/demand perfect results from EnteroLab? That's not possible.
The establishment has a silent (hidden) boycott against Dr. Fine, and they refuse to publish his work because he took the tests to the Internet and offered them straight to patients, cutting out the good old boys in the white coats. That made them mad as wet hens, many years ago, and they have never forgiven him. Until he did that, they were publishing his research.
Tex
The establishment has a silent (hidden) boycott against Dr. Fine, and they refuse to publish his work because he took the tests to the Internet and offered them straight to patients, cutting out the good old boys in the white coats. That made them mad as wet hens, many years ago, and they have never forgiven him. Until he did that, they were publishing his research.
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.