Attn newbies or anyone struggling....
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Caroline,
Welcome to the group. And thanks for the kind words about the book. I was sorry to hear that even after you finally received a diagnosis, your doctor chose to try to ignore the disease, rather than try to treat it. I suppose that's just additional evidence that some doctors still haven't bothered to learn much about the disease. I'll bet you already know more than she or he will ever learn about MC and how to treat it.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. And thanks for the kind words about the book. I was sorry to hear that even after you finally received a diagnosis, your doctor chose to try to ignore the disease, rather than try to treat it. I suppose that's just additional evidence that some doctors still haven't bothered to learn much about the disease. I'll bet you already know more than she or he will ever learn about MC and how to treat it.
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.
Hi, Paul here,
I got an email "ad" just now. Does anyone know anything about this Doctor and what she may or may not be peddling? Here's the main page of her email:
Every day, new patients come to me with puzzling digestion and elimination issues that don’t go away or keep coming back no matter what they do.
I’ve helped them, and I know I can help you! My name is Dr. Drew Sinatra and I’m a board-certified, practicing naturopathic doctor who specializes in digestive health.
Let me be clear. Digestive trouble is not just uncomfortable, it’s unhealthy. As a naturopathic doctor, I treat the digestive system as the foundation for health and well-being.
The key to ALL of it is your MICROBIOME!
Your microbiome is the vast community of bacteria, yeast, fungi, and other microbes (both good and bad) that live throughout your body, but primarily in your gut.
You may know about the benefits of consuming healthy bacteria (thanks to the popularity of probiotics). But there’s a lot MORE TO THE STORY…
The NEWEST RESEARCH reveals that a variety of microbes—including bacteria and yeast—play a huge role in keeping your gut and body healthy.
Like a rainforest depends on its highly diverse inhabitants to thrive, so does your body. But that’s simply not happening these days…
I got an email "ad" just now. Does anyone know anything about this Doctor and what she may or may not be peddling? Here's the main page of her email:
Every day, new patients come to me with puzzling digestion and elimination issues that don’t go away or keep coming back no matter what they do.
I’ve helped them, and I know I can help you! My name is Dr. Drew Sinatra and I’m a board-certified, practicing naturopathic doctor who specializes in digestive health.
Let me be clear. Digestive trouble is not just uncomfortable, it’s unhealthy. As a naturopathic doctor, I treat the digestive system as the foundation for health and well-being.
The key to ALL of it is your MICROBIOME!
Your microbiome is the vast community of bacteria, yeast, fungi, and other microbes (both good and bad) that live throughout your body, but primarily in your gut.
You may know about the benefits of consuming healthy bacteria (thanks to the popularity of probiotics). But there’s a lot MORE TO THE STORY…
The NEWEST RESEARCH reveals that a variety of microbes—including bacteria and yeast—play a huge role in keeping your gut and body healthy.
Like a rainforest depends on its highly diverse inhabitants to thrive, so does your body. But that’s simply not happening these days…
I've never heard of that practitioner, but it sounds like she advocates trying to heal the gut by using supplements and the "right" probiotiocs (whatever that might be). Our collective experience on this forum has been that for the vast majority of us, we are far more successful at recovering from MC by putting less into our digestive system, not more. The more variety we ingest, the more likely we are to be using one of more ingredients that cause us to react. And it only takes one ingredient to which we react, to prevent us from ever reaching remission, if we continue to use that ingredient.
After we're in remission for a while, most of us can tolerate probiotics without any problems. But do we actually need them then? Not according to published research.
A very small percentage of us claim to have benefited from a probiotic during recovery, for example. But for every person who has benefited from a probiotic, probably about 10 or 15 have experienced worse symptoms. I have nothing against naturopaths in general, because some of them do seem to understand MC and they're able to treat it successfully. But like most MDs, most of them only think that they understand the disease and they go overboard and prescribe far too many supplements that prevent MC patients from ever reaching remission. We have many members who have spent thousands of dollars on supplements that never provided an ounce of benefit.
But that's just my opinion, and as I mentioned, I've never heard of that particular practitioner.
Tex
After we're in remission for a while, most of us can tolerate probiotics without any problems. But do we actually need them then? Not according to published research.
A very small percentage of us claim to have benefited from a probiotic during recovery, for example. But for every person who has benefited from a probiotic, probably about 10 or 15 have experienced worse symptoms. I have nothing against naturopaths in general, because some of them do seem to understand MC and they're able to treat it successfully. But like most MDs, most of them only think that they understand the disease and they go overboard and prescribe far too many supplements that prevent MC patients from ever reaching remission. We have many members who have spent thousands of dollars on supplements that never provided an ounce of benefit.
But that's just my opinion, and as I mentioned, I've never heard of that particular practitioner.
Tex
There are a lot of hucksters trying to make money on the internet from those suffering.
If you decide to try a probiotic (not that I'm recommending them) the ones generally talked about
on this forum are VSL-3 (heavily tested for UC) and culturelle. Make sure both are dairy free.
VSL-3 has to be ordered in by your drug store (no prescription necessary). Takes about a day to get it in.
This one has been studied in those with UC.
VSL-3 is high price point, culturelle low price point.
That said.....I do better without probiotics until I am in remission.
If you decide to try a probiotic (not that I'm recommending them) the ones generally talked about
on this forum are VSL-3 (heavily tested for UC) and culturelle. Make sure both are dairy free.
VSL-3 has to be ordered in by your drug store (no prescription necessary). Takes about a day to get it in.
This one has been studied in those with UC.
VSL-3 is high price point, culturelle low price point.
That said.....I do better without probiotics until I am in remission.
Brandy,
It's good to see you posting again. Apparently you survived the storm without a power loss, or else it's already been restored.
Tex
It's good to see you posting again. Apparently you survived the storm without a power loss, or else it's already been restored.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Tex,tex wrote:Brandy,
It's good to see you posting again. Apparently you survived the storm without a power loss, or else it's already been restored.
Tex
Really the whole state of Florida was pretty fortunate. In my area we were as close as you could get to
a hurricane without having a drop of rain or even any wind issues.
Mom's neighborhood on the eastern shore of Maryland got a lot of rain.
Brandy,
That's kind of amazing. I never cease to be surprised at how unpredictable the weather can be.
Tex
That's kind of amazing. I never cease to be surprised at how unpredictable the weather can be.
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.
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zeb fontaine
- Posts: 3
- Joined: Sun Oct 04, 2020 8:29 pm
thank you
Thanks so much for your encouragement and careful information. I'm new to this cite and just posted my 'inaugural' message. I thought I was in control of MC when I was first diagnosed at start of 2019, but over the past 4 months it has gone helter-skelter on me, and lacking any reasonable response from specialists except the treadmill of drugs, I was glad to find this community, and such generous advice. About to go on the diet adventures cutting out this and that to detect the combination of triggers. I have always trusted my body's intuition.
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julieh2195
- Posts: 22
- Joined: Wed Apr 07, 2021 8:57 am
- Location: MN
Re: Attn newbies or anyone struggling....
Hi,
Thank you for your info. I truly appreciate it all! I am a newbie to this site and it already has been a help for me! Yes I am overwhelmed, but have been for years. I think my "gut problems" started when I was around 7 y.o. and was in hospital for 2 weeks with a bleeding ulcer. They diagnosed the ulcer with upper GI with dye and said it was due to stress!
I worked as an RN for 15 years, so have some medical knowledge, but haven't worked for 20 years, stayed home to raise my boys. Seems like I have always dealt with gut aches and diarrhea!!! I was raised on a dairy farm, drinking fresh cows milk (and Maalox) 
for most of my life!
Quit dairy several years ago after much bloating and diarrhea, with great results. (Colonoscopy at that time was negative for everything and gluten blood test was also negative) Diagnosed with IBS and Lactose intolerance at that time. Then developed same symptoms, only much worse diarrhea, a couple years later (also much stress in life at that time which lasted for a few years) and was diagnosed with collagenous colitis (same as my mom) after my second colonoscopy.
So, for the last 5 or so years I have been trying to find the right foods to eat. I am on my fourth round of Budesonide within the last 2 years (current tapering dose 9mg/21 days, 6mg/21 days, 3mg/21days) but symptoms start coming back once I get to the 3mg/day. Stress is much better (we just had our first grandbaby
) I wish I could stay on it for a longer period of time! I am currently on the 9mg/day for 21 days tapering dose, (within 24 hours of starting the Budesonide my symptoms greatly improve!) I also started the Gluten free diet, unsweetened Almond milk and staying away from other common triggers mentioned on here. But last few days have been developing sharp gut pains and much gas.
I will continue to listen to my body as I try different foods! MC has been a life changer for me, literally days I can't leave the house
! Anyway, I'm not giving up and am thankful for this forum!
Thank you for your info. I truly appreciate it all! I am a newbie to this site and it already has been a help for me! Yes I am overwhelmed, but have been for years. I think my "gut problems" started when I was around 7 y.o. and was in hospital for 2 weeks with a bleeding ulcer. They diagnosed the ulcer with upper GI with dye and said it was due to stress!
I worked as an RN for 15 years, so have some medical knowledge, but haven't worked for 20 years, stayed home to raise my boys. Seems like I have always dealt with gut aches and diarrhea!!! I was raised on a dairy farm, drinking fresh cows milk (and Maalox) for most of my life! Quit dairy several years ago after much bloating and diarrhea, with great results. (Colonoscopy at that time was negative for everything and gluten blood test was also negative) Diagnosed with IBS and Lactose intolerance at that time. Then developed same symptoms, only much worse diarrhea, a couple years later (also much stress in life at that time which lasted for a few years)
and was diagnosed with collagenous colitis (same as my mom) after my second colonoscopy. So, for the last 5 or so years I have been trying to find the right foods to eat. I am on my fourth round of Budesonide within the last 2 years (current tapering dose 9mg/21 days, 6mg/21 days, 3mg/21days) but symptoms start coming back once I get to the 3mg/day. Stress is much better (we just had our first grandbaby
) I wish I could stay on it for a longer period of time! I am currently on the 9mg/day for 21 days tapering dose, (within 24 hours of starting the Budesonide my symptoms greatly improve!) I also started the Gluten free diet, unsweetened Almond milk and staying away from other common triggers mentioned on here. But last few days have been developing sharp gut pains and much gas. I will continue to listen to my body as I try different foods! MC has been a life changer for me, literally days I can't leave the house
! Anyway, I'm not giving up and am thankful for this forum!Re: Attn newbies or anyone struggling....
Hi Julie,
Welcome to the group. I'm curious about the onset of your gas and got pains. Did they begin after you started drinking almond milk? If so, you might try switching to cashew milk. Frankly, I don't see how you can stand the flavor of the unsweetened version. I use the vanilla flavored versions of the milk substitutes. They taste great.
Regarding the use of budesonide: published medical research shows that 85% of MC patients relapse after their budesonide treatment ends. So that's only a temporary treatment. Changing your diet as you begin the treatment this time, so that you're now avoiding gluten and dairy products, should allow your digestive system to heal. When you reach the end of your budesonide treatment, continue the taper past one capsule per day to one every other day for a week or so, Then one every two days for a week or so, followed by one every three days, etc. some members here go as far as one capsule every five or six days before ending the treatment. This extended taper will help to prevent a relapse. You need to get into stable remission, and stay there, because every time you stop and restart a budesonide treatment, research shows that it becomes less effective in most cases. Eventually, it's no longer effective.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. I'm curious about the onset of your gas and got pains. Did they begin after you started drinking almond milk? If so, you might try switching to cashew milk. Frankly, I don't see how you can stand the flavor of the unsweetened version. I use the vanilla flavored versions of the milk substitutes. They taste great.
Regarding the use of budesonide: published medical research shows that 85% of MC patients relapse after their budesonide treatment ends. So that's only a temporary treatment. Changing your diet as you begin the treatment this time, so that you're now avoiding gluten and dairy products, should allow your digestive system to heal. When you reach the end of your budesonide treatment, continue the taper past one capsule per day to one every other day for a week or so, Then one every two days for a week or so, followed by one every three days, etc. some members here go as far as one capsule every five or six days before ending the treatment. This extended taper will help to prevent a relapse. You need to get into stable remission, and stay there, because every time you stop and restart a budesonide treatment, research shows that it becomes less effective in most cases. Eventually, it's no longer effective.
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.
-
julieh2195
- Posts: 22
- Joined: Wed Apr 07, 2021 8:57 am
- Location: MN
Re: Attn newbies or anyone struggling....
Hi,
Thank you for your response!
About the sharp gut pains and gas, I've been trying to figure that out, if it is the Almond milk or the many other "new" foods I'm eating, such as Cheerios, Rice (only had it one time), gluten free pasta (only one time) Gluten free (free of literally almost everything) cookies, gluten free white bread and gluten free oatmeal. I started the Budesonide April 1, same day I started the gluten, dairy free diet. I did not realize that we can be sensitive to the Casein, so even though I thought I was doing good staying away from dairy, I wasn't. I was mainly looking at the Lactose part of it, taking my Lactaid pills as needed! I've ,been living on Malt o Meal, Oatmeal, toast, bagels, water, beef, chicken, potatoes, for a long time now (years), (feeling miserable when not on the budesonide) trying to stay away from all spices, red sauces, fried foods, sweets, dairy, sodas, etc.; not realizing it was probably the gluten and casein as the main culprits!
It feels so good to eat some different tasting foods, but at the same time I know I've tried too many new things at once. My bad!
The last carton of milk I bought has coconut milk mixed with the almond milk, (I didn't realize when I bought it) which I don't like as much. I am willing to try cashew milk. I just don't know what to eat anymore, I stand in the kitchen so frustrated, and end up eating just a bowl of cheerios topped with with pure turbinado cane sugar, unsweetened almond milk with my gluten free white toast and sugar free, seedless strawberry jam.
I also tried powdered colostrum for a week, (advice from a lady in our church) which is when the sharp pains and gas started. So I quit that when I realized it probably has casein in it! 
But I haven't had the Colostrum for a week or so now, so I'm thinking that wasn't the culprit?? It's hard to be patient, to try one thing at a time when I just want to feel better. I have lost 15 lbs in the several months, I am 5'4", 115 lb now.
I realize the Budesonide is just a "band-aid" for the time being, but helps me maintain my sanity. And yes, I think it is becoming less effective for me as the last time I was on it I was still having some diarrhea. After I was done with it, my diarrhea came back with a vengeance, worse than ever! I suffered with it for over 2 months before asked for another refill. So now I am hoping with my "new" diet changes (Gluten free, casein free) my guts can start to heal while I'm on the Budesonide!?!?!
Thank you again for listening, feels good to talk to people who actually know how I feel and know how to help!
Thank you for your response!
About the sharp gut pains and gas, I've been trying to figure that out, if it is the Almond milk or the many other "new" foods I'm eating, such as Cheerios, Rice (only had it one time), gluten free pasta (only one time) Gluten free (free of literally almost everything) cookies, gluten free white bread and gluten free oatmeal. I started the Budesonide April 1, same day I started the gluten, dairy free diet. I did not realize that we can be sensitive to the Casein, so even though I thought I was doing good staying away from dairy, I wasn't. I was mainly looking at the Lactose part of it, taking my Lactaid pills as needed!
I've ,been living on Malt o Meal, Oatmeal, toast, bagels, water, beef, chicken, potatoes, for a long time now (years), (feeling miserable when not on the budesonide) trying to stay away from all spices, red sauces, fried foods, sweets, dairy, sodas, etc.; not realizing it was probably the gluten and casein as the main culprits! It feels so good to eat some different tasting foods, but at the same time I know I've tried too many new things at once.
My bad!The last carton of milk I bought has coconut milk mixed with the almond milk, (I didn't realize when I bought it) which I don't like as much. I am willing to try cashew milk. I just don't know what to eat anymore, I stand in the kitchen so frustrated, and end up eating just a bowl of cheerios topped with with pure turbinado cane sugar, unsweetened almond milk with my gluten free white toast and sugar free, seedless strawberry jam.
I also tried powdered colostrum for a week, (advice from a lady in our church) which is when the sharp pains and gas started. So I quit that when I realized it probably has casein in it! But I haven't had the Colostrum for a week or so now, so I'm thinking that wasn't the culprit?? It's hard to be patient, to try one thing at a time when I just want to feel better. I have lost 15 lbs in the several months, I am 5'4", 115 lb now. I realize the Budesonide is just a "band-aid" for the time being, but helps me maintain my sanity. And yes, I think it is becoming less effective for me as the last time I was on it I was still having some diarrhea. After I was done with it, my diarrhea came back with a vengeance, worse than ever! I suffered with it for over 2 months before asked for another refill. So now I am hoping with my "new" diet changes (Gluten free, casein free) my guts can start to heal while I'm on the Budesonide!?!?!
Thank you again for listening, feels good to talk to people who actually know how I feel and know how to help!
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julieh2195
- Posts: 22
- Joined: Wed Apr 07, 2021 8:57 am
- Location: MN
Re: Attn newbies or anyone struggling....
I also forgot to say that I haven't eaten fresh fruits or vegetables for years but was eating a lot of eggs, but have recently quit the eggs too!