How long have you been on the budesonide? You typically can't stop budesonide abruptly because it is a steroid but
you can do a fast taper off of it. I'd double check with your pharmacist and/or doctor for fast taper schedule.
Figuring out food triggers.
Hi Colleen,
Regarding Brandy's response just above, if you've only been on budesonide for about 4 weeks, it should be safe to stop cold turkey. If you've been taking it for 5 or 6 months or more, though, stopping abruptly would be risky.
Tex
Regarding Brandy's response just above, if you've only been on budesonide for about 4 weeks, it should be safe to stop cold turkey. If you've been taking it for 5 or 6 months or more, though, stopping abruptly would be risky.
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've been on budesonide for 6 weeks. I'll fast taper down. I don't need any more problems.
Everyone generally ok with white rice? Rice cakes?
I'm starting over with what I eat since I must be doing something wrong. I'm putting pork loin roast in the crockpot to cook with only sea salt, olive oil and water. I will do the same with cornish hens and then make bone broth from it. How long should I eat those 4 foods before adding an almond milk? I'm scared to eat anything. I'm eating pork or cornish hens, rice, rice cake, weak tea.
I want to add a multivitamin. Some have fish. Again, I'm afraid to eat anything but my nutrition has been so poor for so long, my hair has stopped growing again. I've ordered D3. Should I be using a probiotic? Culturelle? Should I wait til the flare ends to add anything or will it help the flare stop.?
Thanks so much for your wise words,
Colleen
Everyone generally ok with white rice? Rice cakes?
I'm starting over with what I eat since I must be doing something wrong. I'm putting pork loin roast in the crockpot to cook with only sea salt, olive oil and water. I will do the same with cornish hens and then make bone broth from it. How long should I eat those 4 foods before adding an almond milk? I'm scared to eat anything. I'm eating pork or cornish hens, rice, rice cake, weak tea.
I want to add a multivitamin. Some have fish. Again, I'm afraid to eat anything but my nutrition has been so poor for so long, my hair has stopped growing again. I've ordered D3. Should I be using a probiotic? Culturelle? Should I wait til the flare ends to add anything or will it help the flare stop.?
Thanks so much for your wise words,
Colleen
Usually, the fewer foods (and fewer or no supplements) we eat, the faster we recover. Most people are OK with white rice, but a few react to it. Most people are OK with potatoes or sweet potatoes. If you try potatoes, though, select red or yellow spuds. They're much easier to digest than Russets. Also, glutenous rice (waxy rice) from Southeast Asia is easier to digest than ordinary white rice.
We're all different, so there's a huge variation in time requirements. Stay on a recovery diet until you've recovered. The bone broth will provide you with many nutrients that you wouldn't ordinarily get. Most of us cannot tolerate a probiotic until after we're in remission. They're rarely helpful, and for many of us, they can prevent us from ever reaching remission.
I hope this helps.
Tex
We're all different, so there's a huge variation in time requirements. Stay on a recovery diet until you've recovered. The bone broth will provide you with many nutrients that you wouldn't ordinarily get. Most of us cannot tolerate a probiotic until after we're in remission. They're rarely helpful, and for many of us, they can prevent us from ever reaching remission.
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.
I wish you book would come so I could stop asking all these questions. Amazon said between the 14th to the 21st.
You said the fewer or no supplements the better, generally. Somewhere on this site I think I read the budesonide works by incorporating D3 into the cells to reduce inflammation. So if you are deficient in D3 it cannot work? Something like that - so I figured I should take that supplement.. No?
Also, is it possible to have this disease and NOT have a gluten intolerance? Or is that just part of the whole thing?
I know you'll be glad when I get the book so I'll leave all of you alone!!
Colleen
You said the fewer or no supplements the better, generally. Somewhere on this site I think I read the budesonide works by incorporating D3 into the cells to reduce inflammation. So if you are deficient in D3 it cannot work? Something like that - so I figured I should take that supplement.. No?
Also, is it possible to have this disease and NOT have a gluten intolerance? Or is that just part of the whole thing?
I know you'll be glad when I get the book so I'll leave all of you alone!!
Colleen
Hi Colleen,
Well, yes, budesonide works by suppressing mast cell activity, and It appears that it does this by exploiting the ability of the active version of D3 to actually perform the mast cell suppression. But you not only have to have vitamin D3, you also must have adequate magnesium to activate the D3 (turn the inactive form in supplements into the active form that the immune system can use it).
If the book doesn't show up PDQ, I'll be happy to attach a copy of the book in PDF format to an email and send it to you immediately so that you can start reading (on your computer or a digital device). If you want a digital copy formatted for a specific digital device, just tell me what type of device you use, and I can send you a copy of an ebook (or both, if you want them).
The reason why it's so obvious that we're all gluten-sensitive is because gluten sensitivity is the cause of leaky gut, and leaky gut is the cause of virtually all other food sensitivities.
Let me know if you want me to email one or more copies of the book.
Tex
Well, yes, budesonide works by suppressing mast cell activity, and It appears that it does this by exploiting the ability of the active version of D3 to actually perform the mast cell suppression. But you not only have to have vitamin D3, you also must have adequate magnesium to activate the D3 (turn the inactive form in supplements into the active form that the immune system can use it).
If the book doesn't show up PDQ, I'll be happy to attach a copy of the book in PDF format to an email and send it to you immediately so that you can start reading (on your computer or a digital device). If you want a digital copy formatted for a specific digital device, just tell me what type of device you use, and I can send you a copy of an ebook (or both, if you want them).
Most doctors certainly think so. A few years ago, they all thought so. These days, many of them are waking up and realizing that they've been wrong all these years. Our real-life experience (learned by comparing notes among members here) shows that we are virtually all gluten-sensitive. There may be a few who are not gluten-sensitive, because they possess a rather rare gene (HLA-DQ4). I've forgotten what the percentage might be, but it's only two or three percent, as I recall.Colleen wrote:Also, is it possible to have this disease and NOT have a gluten intolerance? Or is that just part of the whole thing?
The reason why it's so obvious that we're all gluten-sensitive is because gluten sensitivity is the cause of leaky gut, and leaky gut is the cause of virtually all other food sensitivities.
Let me know if you want me to email one or more copies of the book.
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 Colleen,
I think we've had a tiny tiny percentage who get MC as a side effect of a prescription drug. They stop the drug at first sign of WD.
They immediately get scoped. They test positive for MC in colonoscopy but may not in fact be or get gluten sensitive probably
from stopping the prescription at first incidence of WD. Again we've had a few folks in this category but I'd say it
is a very, very very tiny percent and whats to say they do not get MC later.
I think it is still kind of rare to have a GI doc tell a patient with MC to go GF. Sometimes the RN's whisper it to
the patient in the hallway. I had one of the rare ones tell me 9 years ago to go GF but I was already GF as a result of this board.
I think we've had a tiny tiny percentage who get MC as a side effect of a prescription drug. They stop the drug at first sign of WD.
They immediately get scoped. They test positive for MC in colonoscopy but may not in fact be or get gluten sensitive probably
from stopping the prescription at first incidence of WD. Again we've had a few folks in this category but I'd say it
is a very, very very tiny percent and whats to say they do not get MC later.
I think it is still kind of rare to have a GI doc tell a patient with MC to go GF. Sometimes the RN's whisper it to
the patient in the hallway. I had one of the rare ones tell me 9 years ago to go GF but I was already GF as a result of this board.
Hi Colleen,
It looks like you are really struggling.
I reread your thread.
Some answers to your questions:
1. I took pepto that came as the 1" round tablets. I would take 2 of them after a meal kind of like dessert.
2. I could not tolerate rice checks when I was struggling. I'd have more rice in lieu of the rice checks. Once
you are doing better add back the rice checks.
3. Maybe add a pinch of salt to some of your water for electrolytes since you have so much WD.
4. If you thought cholestyramine helped, maybe a retry of that.
5. Be aware there are a lot of ups and downs with MC healing.
6. You could try Uceris. It is still budesonide but travels through our system a bit differently.
7. You are on the right path. Those who go GF sooner will heal faster.
It looks like you are really struggling.
I reread your thread.
Some answers to your questions:
1. I took pepto that came as the 1" round tablets. I would take 2 of them after a meal kind of like dessert.
2. I could not tolerate rice checks when I was struggling. I'd have more rice in lieu of the rice checks. Once
you are doing better add back the rice checks.
3. Maybe add a pinch of salt to some of your water for electrolytes since you have so much WD.
4. If you thought cholestyramine helped, maybe a retry of that.
5. Be aware there are a lot of ups and downs with MC healing.
6. You could try Uceris. It is still budesonide but travels through our system a bit differently.
7. You are on the right path. Those who go GF sooner will heal faster.
This is generally a very very safe healing mc diet. Cook 3 cornish hens at a time in oven and freeze what you don't eat. Cook rice in big lots.'m putting pork loin roast in the crockpot to cook with only sea salt, olive oil and water. I will do the same with cornish hens and then make bone broth from it. How long should I eat those 4 foods before adding an almond milk? I'm scared to eat anything. I'm eating pork or cornish hens, rice, rice cake, weak tea.
Almond milk is the riskiest of your list due to the ingredients. I know you want the calcium. If you are having WD 10-20
times per day I'd skip the almond milk for now. If it is just shooting through us the calcium is not hitting our bones but
is just going through us. I'd think of adding the fortified almond milk when you have ribbon stool. When you get to WD
once a day perhaps consider citracal calcium supplement. It may be better tolerated than the almond milk ingredients. I would not take that with WD 10-20 times per day.
Do you put sugar in the weak tea? Sugar is kind of the enemy for now.
Normally I can tolerate olive oil but when I was in a 9 month reflare I could tolerate coconut oil but not olive oil.
It is something to think about.
If you are having WD I'd stay clear of an oral multivitamin for now. The ingredients just shoot right through us. There
are some Patch multis on the market. I think it is called Patch MD? https://www.patchmd.com/All-Products_c_1-1-14.html
https://www.patchmd.com/MultiVitamin-Pl ... Patch.html
This patch has calcium in it along with the other vitamins.
Also I think I saw you mention blueberries. Avoid blueberries for now until you get solid stool.
This patch has calcium in it along with the other vitamins.
Also I think I saw you mention blueberries. Avoid blueberries for now until you get solid stool.
The book just came! Yay! I got LC from taking NSAIDs for 2 weeks when I had a bad headache in late Oct. It wasn't anything I'd not taken before- only this time it got me. The D wasn't watery, just more like ribbon or bullets. Late December I was diagnosed after the colonoscopy. Immediately after the colonoscopy the WD started really bad. GI doc said fodmap diet. So I started that. Quickly I found I could only eat a few things. Absolutely no fiber. Gi doc had recommended fiber supplements. He was surprised when I said it nearly killed me when I took it. That was when I knew he would be very little or no help.
Before I was diagnosed I was eating gluten with no ill affects. Dairy killed me. Back then I was cutting out 1 thing at a time to see if it was a food allergy. That's why I asked about gluten.
Switching to NOW: I eat no sugar. Stopped any fruit- tho I may add back greenish banana half at breakfast. Eating only jasmin rice, meats you suggested, weak tea.
Brandy thank you too for your thoughts. I too thought the pepto was like a dessert! So sad. Struggling is such an understatement of how I feel but I'm sure you all know that.
Im grateful to know that I'm waiting for some type of normalcy before I add foods. I've decided to do the rest of this budesonide I have. In for a penny in for a pound. The odds favor it working on most people it seems.
Before I was diagnosed I was eating gluten with no ill affects. Dairy killed me. Back then I was cutting out 1 thing at a time to see if it was a food allergy. That's why I asked about gluten.
Switching to NOW: I eat no sugar. Stopped any fruit- tho I may add back greenish banana half at breakfast. Eating only jasmin rice, meats you suggested, weak tea.
Brandy thank you too for your thoughts. I too thought the pepto was like a dessert! So sad. Struggling is such an understatement of how I feel but I'm sure you all know that.
Im grateful to know that I'm waiting for some type of normalcy before I add foods. I've decided to do the rest of this budesonide I have. In for a penny in for a pound. The odds favor it working on most people it seems.
Book questions
Hi Tex & All,
I am half way thru the book and I totally understand why everyone says to read it! All my questions were answered! But of course I have more! I'm reading the 'Understanding MC' book.
1. On pg. 61 it's mentioned that going on a gluten free diet can cause a person's body to lose their tolerance to it. It will then provoke an increased response if/when they resume gluten. Is this also true for other foods- dairy, soy, corn etc?
2. City water being regulated and treated with the multitudes of chemicals that it is, I'd was wondering if well water is better?
3. Previously, I was advised to not take vitamins and supplements until i was further into the recovery stage/diet. After reading the book I completely understand why. However, I'm unsure how to get to the remission stage when vit D3 and mg are so vital to recovery. Not to mention all the other nutrients I obviously need.
I don't believe its possible to obtain these eating only 4 foods as I am now.
I am improving everyday now that I have followed the advice recieved here and look forward to continue improvement. I have a long way to go
Thank you all from the bottom of my heart. I seriously don't know where I'd be without this forum!
Colleen
I am half way thru the book and I totally understand why everyone says to read it! All my questions were answered! But of course I have more! I'm reading the 'Understanding MC' book.
1. On pg. 61 it's mentioned that going on a gluten free diet can cause a person's body to lose their tolerance to it. It will then provoke an increased response if/when they resume gluten. Is this also true for other foods- dairy, soy, corn etc?
2. City water being regulated and treated with the multitudes of chemicals that it is, I'd was wondering if well water is better?
3. Previously, I was advised to not take vitamins and supplements until i was further into the recovery stage/diet. After reading the book I completely understand why. However, I'm unsure how to get to the remission stage when vit D3 and mg are so vital to recovery. Not to mention all the other nutrients I obviously need.
I don't believe its possible to obtain these eating only 4 foods as I am now.
I am improving everyday now that I have followed the advice recieved here and look forward to continue improvement. I have a long way to go
Thank you all from the bottom of my heart. I seriously don't know where I'd be without this forum!
Colleen
Yes it is. An old trick that naturopaths sometimes use to identify foods that are problematic is to advise the patient to avoid a suspected food for 5 or 6 days, and then reintroduce it. A food that's causing problems will be much easier to identify then. This works because the half-life of most food antibodies is only 5 or 6 days. The half-life of anti-gliadin (gluten) antibodies is 120 days, so you have to avoid gluten for a much longer time in order to notice the effect.1. On pg. 61 it's mentioned that going on a gluten free diet can cause a person's body to lose their tolerance to it. It will then provoke an increased response if/when they resume gluten. Is this also true for other foods- dairy, soy, corn etc?
Some of us do indeed react to certain water samples. Some of us do better with filtered water, but this is not a common issue. Issues such as this are best considered as a last resort, after trying the solutions that work for most of us.2. City water being regulated and treated with the multitudes of chemicals that it is, I'd was wondering if well water is better?
You are reading a book that was written for people who have tried the solutions offered in the first book (Microscopic Colitis) and found that doing everything suggested there was not enough to carry them to remission. IOW, Understanding Microscopic Colitis was written for the toughest cases who need additional help, or for those who just want to learn more about the disease. For most of us, the suggestions in the first book are adequate. Some of that information (such as vitamin and mineral supplementation) may not be exactly the same in the second book, because the second books targets special cases for whom normal dietary treatments don't work. IOW, if you can tolerate vitamin D and magnesium, then you will heal faster with those supplements. If you can't tolerate them, don't take them. The longer we have been reacting, the more deficient we will become in vitamin D and magnesium. This will eventually severely compromise our immune system, and since the immune system is in charge of healing, recovery will be more difficult. The reason that MC exists in the first place is because healing cannot keep up with the damage done by the inflammation. This is all explained in detail in the first book.3. Previously, I was advised to not take vitamins and supplements until i was further into the recovery stage/diet. After reading the book I completely understand why.
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.
Thank you very much for the response. I'm learning so much.
I've read many of the other threads on this site. If I understand the explanation, the gluten response creating the inflammation half life is 120 days. Is that then how long one can expect symptoms to last after consumption? That's just depressing.
Something else I've been looking for and can't seem to find is - Why/How does pepto work? I always want to know why. All the explanation says what it does - not how/why it does it. I was probably a very annoying 2 year old always asking WHY?
I am currently soaking up the sun on the beach. But I need Mg to process it in my body. Can I use the lotions so I don't have to worry about gastro symptoms? I'm going to get the vitamin patch cuz it really bothers me how completely vitamin deficient I know I am.
Thanks for your help. I'm learning more everyday tho part of me wishes I didn't have to know this....
Colleen
I've read many of the other threads on this site. If I understand the explanation, the gluten response creating the inflammation half life is 120 days. Is that then how long one can expect symptoms to last after consumption? That's just depressing.
Something else I've been looking for and can't seem to find is - Why/How does pepto work? I always want to know why. All the explanation says what it does - not how/why it does it. I was probably a very annoying 2 year old always asking WHY?
I am currently soaking up the sun on the beach. But I need Mg to process it in my body. Can I use the lotions so I don't have to worry about gastro symptoms? I'm going to get the vitamin patch cuz it really bothers me how completely vitamin deficient I know I am.
Thanks for your help. I'm learning more everyday tho part of me wishes I didn't have to know this....
Colleen