Hi, I am new to this support group and very grateful to have found it.
I was diagnosed with LC in November 2019 and was put onto Entocord (Budesonide), 9mg pd for two months and then 6mg and finally 3mg. For two months after that I was in remission and then the D raised it's ugly head and I was back onto 9mg pd. Since March 2020 I have been on 6mg day having tried to wean myself off to 3mg with no luck. I have followed a strict LF & GF diet which helped but I still experienced the odd flair up and my gut did not always feel happy. I just knew I was not winning. So I started an elimination diet which I have been on for two days, chicken, beans, carrots, squash, rice, potato, sweet potato and 1 banana a day. My question is how long can one stay on this diet without too much detriment to ones health, and what supplements could you recommend?
I am also concerned about my weight which has dropped considerably since the start of my LC. I currently weigh 106 lbs and am 5ft 5in, any advice as to how to gain weight on the elimination diet. I am eating good size portions of the ingredients mentioned above three times a day? Is there a limit to how much one should eat per meal?
Elimination Diet and Weaning off of Budesonide
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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lindalemon
- Posts: 9
- Joined: Sat Jan 23, 2021 10:51 pm
Re: Elimination Diet and Weaning off of Budesonide
Hello Linda,
Welcome to the board. To answer your question — basically, we stay on our chosen recovery diet until we recover — until the disease is in remission. And after we're in remission, we allow a few more weeks, so that our intestines can begin to heal. That may take a few weeks, a few months, or for many of us, a year or more. We're all different in the amount of damage that must be healed. It took me two years (20 years ago). I don't recall ever worrying about nutrition — my main worry was survival — I was one sick puppy.
The intestines heal slowly. It takes adults from 2 to 5 years to completely heal the damage caused by gluten. Kids heal quickly — they can heal in a year or less,
Published medical research shows that 85 % of MC patients who successfully control their MC using budesonide, suffer a relapse of the disease soon after they discontinue their budesonide treatment. Yet doctors continue to prescribe it and naively pretend that it's going to "cure" most cases of MC. Sure it will — when pigs fly.
There's nothing wrong with prescribing it — it's a good anti-inflammatory drug. But pretending that it's going to cure the disease is wishful thinking.
Unless you're very deficient in vitamin D and magnesium, you'll recover faster if you take no supplements during recovery. Many a recovery journey has been derailed by patients taking one or more supplements to speed their healing, only to discover later that those supplements were preventing them from reaching remission. Almost every new member worries about not getting proper nutrition while on their recovery diet. They're all worrying about the wrong thing. As long as MC is not under control and the intestines are still inflamed, proper nutrition is the least of their worries. Why? Because as long as the digestive system is inflamed, there's no possibility of absorbing nutrients properly, anyway, no matter how hard you might try to overcome the problem. A relatively high percentage of those nutrients are going straight into the toilet, whether we like it or no. And there's precious little that we can do about it, on a practical level.
The focus of your concern should be on getting the disease under control as promptly as possible, and then your ability to absorb nutrients properly will be restored as your digestive system heals, and any nutrition issues that you might have will take care of themselves, automatically. Controlling the disease should take priority. When that's accomplished, everything else will be resolved automatically.
You mention being on a LF & GF diet. If LF stands for lactose-free, lactose is not the problem (although it is indeed a minor part of our problems). Most of us are sensitive to the casein in all dairy products, so avoiding only the lactose is ignoring the larger problem.
All that said, here's my opinion:
If you have been truly gluten free for 6 months or more, then you should see a significant improvement within less than a week. If that doesn't happen, either some ingredient is still sneaking into your diet (cross-contamination) to frustrate your recovery efforts, or you haven't been GF long enough for your intestines to heal sufficiently.
I hope this helps.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. To answer your question — basically, we stay on our chosen recovery diet until we recover — until the disease is in remission. And after we're in remission, we allow a few more weeks, so that our intestines can begin to heal. That may take a few weeks, a few months, or for many of us, a year or more. We're all different in the amount of damage that must be healed. It took me two years (20 years ago). I don't recall ever worrying about nutrition — my main worry was survival — I was one sick puppy.
The intestines heal slowly. It takes adults from 2 to 5 years to completely heal the damage caused by gluten. Kids heal quickly — they can heal in a year or less,
Published medical research shows that 85 % of MC patients who successfully control their MC using budesonide, suffer a relapse of the disease soon after they discontinue their budesonide treatment. Yet doctors continue to prescribe it and naively pretend that it's going to "cure" most cases of MC. Sure it will — when pigs fly.
There's nothing wrong with prescribing it — it's a good anti-inflammatory drug. But pretending that it's going to cure the disease is wishful thinking.Unless you're very deficient in vitamin D and magnesium, you'll recover faster if you take no supplements during recovery. Many a recovery journey has been derailed by patients taking one or more supplements to speed their healing, only to discover later that those supplements were preventing them from reaching remission. Almost every new member worries about not getting proper nutrition while on their recovery diet. They're all worrying about the wrong thing. As long as MC is not under control and the intestines are still inflamed, proper nutrition is the least of their worries. Why? Because as long as the digestive system is inflamed, there's no possibility of absorbing nutrients properly, anyway, no matter how hard you might try to overcome the problem. A relatively high percentage of those nutrients are going straight into the toilet, whether we like it or no. And there's precious little that we can do about it, on a practical level.
The focus of your concern should be on getting the disease under control as promptly as possible, and then your ability to absorb nutrients properly will be restored as your digestive system heals, and any nutrition issues that you might have will take care of themselves, automatically. Controlling the disease should take priority. When that's accomplished, everything else will be resolved automatically.
You mention being on a LF & GF diet. If LF stands for lactose-free, lactose is not the problem (although it is indeed a minor part of our problems). Most of us are sensitive to the casein in all dairy products, so avoiding only the lactose is ignoring the larger problem.
All that said, here's my opinion:
If you have been truly gluten free for 6 months or more, then you should see a significant improvement within less than a week. If that doesn't happen, either some ingredient is still sneaking into your diet (cross-contamination) to frustrate your recovery efforts, or you haven't been GF long enough for your intestines to heal sufficiently.
I hope this helps.
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.
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lindalemon
- Posts: 9
- Joined: Sat Jan 23, 2021 10:51 pm
Re: Elimination Diet and Weaning off of Budesonide
Thank you so much Tex for coming back to me so soon and with so much information!! I have a clearer picture now. For some reason I thought that Wayne Persky had an 'Elimination Diet' which I picked up through reading posts on a Face Book support group. My next question was going to be is this diet in Wayne's book, or should one have to devise an elimination diet of their own? I feel that this would be difficult when still on budesonide?
From what you are saying, I feel I will have to get off the Entocord before I will be able to assess weather my gut is healing or not, would you agree with this?
From what you are saying, I feel I will have to get off the Entocord before I will be able to assess weather my gut is healing or not, would you agree with this?
Re: Elimination Diet and Weaning off of Budesonide
Hi,
A specific diet is not in the book because each of us usually requires a slightly different diet, depending on our personal sensitivities, our lifestyle, and our diet preferences, so listing a specific diet might be misleading for most patients. You've probably already checked this out, but if you haven't, you can find guidelines on how to narrow down your recovery diet choices to only safe ones in the topic posted at the link below. At least, this is what works for most of us. An elimination diet is an overkill for many of us, because it avoids some foods that might be safe for some of us, but the point is, it avoids foods that usually cause us to react. Once we're in remission, we can add back any foods that we find to be safe (after "testing" them).
https://www.perskyfarms.com/phpBB/viewt ... 79&t=22328
Don't experiment to find safe foods — follow the guidelines. Yes, budesonide will mask reactions that would be caused by certain foods, but this is irrelevant, because the main reason for taking budesonide is to stop the diarrhea and mask the symptoms (so that we can function somewhat normally) while the elimination diet is healing our digestive system. If you don't stick carefully to the diet, then when you wean off the budesonide, you will be back at square one again, in a full flare. The diet will heal your gut. Healing takes time. The budesonide just makes life more pleasant while the diet is healing the gut.
Tex
A specific diet is not in the book because each of us usually requires a slightly different diet, depending on our personal sensitivities, our lifestyle, and our diet preferences, so listing a specific diet might be misleading for most patients. You've probably already checked this out, but if you haven't, you can find guidelines on how to narrow down your recovery diet choices to only safe ones in the topic posted at the link below. At least, this is what works for most of us. An elimination diet is an overkill for many of us, because it avoids some foods that might be safe for some of us, but the point is, it avoids foods that usually cause us to react. Once we're in remission, we can add back any foods that we find to be safe (after "testing" them).
https://www.perskyfarms.com/phpBB/viewt ... 79&t=22328
Don't experiment to find safe foods — follow the guidelines. Yes, budesonide will mask reactions that would be caused by certain foods, but this is irrelevant, because the main reason for taking budesonide is to stop the diarrhea and mask the symptoms (so that we can function somewhat normally) while the elimination diet is healing our digestive system. If you don't stick carefully to the diet, then when you wean off the budesonide, you will be back at square one again, in a full flare. The diet will heal your gut. Healing takes time. The budesonide just makes life more pleasant while the diet is healing the gut.
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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lindalemon
- Posts: 9
- Joined: Sat Jan 23, 2021 10:51 pm
Re: Elimination Diet and Weaning off of Budesonide
Thanks again Tex for your time and patience!! Looking at Gabes's stage 1 eating plan is actually what I am doing at the moment, but it also gives me a few other choices. Cant express just how grateful I am!!
Linda
Linda
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lindalemon
- Posts: 9
- Joined: Sat Jan 23, 2021 10:51 pm
Re: Elimination Diet and Weaning off of Budesonide
Hi Tex, I have been on the stage 1 elimination diet for just over 4 months and have been Gluten free & Lactose free for 6 1/2 months. Thanks to you for your invaluable advise I feel I am definitely on the right track and my LC has improved considerably. After two weeks of the ED and on 6mg Entocord I decided to go onto 3mg of Entocord because of constipation. I am still on 3mg of Entocord and the Elimination diet. I have been free from diarrhea ever since I started the ED, however, I feel that I cannot come off the Entocord yet as at the end of the day there are ever so slight feelings of diarrhea. I have three good platefuls of food a day, free range breast chicken slightly fried in a pan with a little olive oil, mash potato, sweet potato, well cooked green beans and carrots, homemade bone broth and nutritional yeast sprinkled on top of my serving. I have two bananas a day and four cups of Rooibos tea. I don't know if you have heard of Rooibos tea, but it’s a caffeine-free alternative to black and green tea and has several potential health benefits and of course water. As I'm eager obviously to wean myself off the 3mg of Entocord I decided that maybe I have the slightly unhappy stomach at the end of the day because I'm having too much per plateful, so I cut down a bit which did make a difference but I started loosing more weight!! Do you think I should remain on the Entocord for the time being and slowly introduce some new foods, or carry on with the same diet until such time I get signs of constipation and come off the Entocord entirely?
I apologies for the lengthy question, but I would really appreciate you take on the above.
I apologies for the lengthy question, but I would really appreciate you take on the above.
Re: Elimination Diet and Weaning off of Budesonide
Hi Linda,
If your bowel movements are not back to completely normal, you're not ready to introduce any new foods, and probably not ready to wean off of budesonide. The tea-you're drinking may be responsible for your digestive system problems later in the day. Pure green or black tea is usually safe for most of us, but blended teas, or teas with added ingredients, especially, are frequently not safe for us. Any commercially processed product that you're putting in your mouth is always highly suspect. They're probably the biggest roadblock to remission, for most of us, when we're initially trying to recover.
If digesting bigger meals is a problem, Then eat smaller meals, more frequently, rather than to lose weight simply because you're not taking in enough calories. Eating more frequent, smaller meals, and more snacks, Is a strategy used by many MC patients when recovering.
Tex
If your bowel movements are not back to completely normal, you're not ready to introduce any new foods, and probably not ready to wean off of budesonide. The tea-you're drinking may be responsible for your digestive system problems later in the day. Pure green or black tea is usually safe for most of us, but blended teas, or teas with added ingredients, especially, are frequently not safe for us. Any commercially processed product that you're putting in your mouth is always highly suspect. They're probably the biggest roadblock to remission, for most of us, when we're initially trying to recover.
If digesting bigger meals is a problem, Then eat smaller meals, more frequently, rather than to lose weight simply because you're not taking in enough calories. Eating more frequent, smaller meals, and more snacks, Is a strategy used by many MC patients when recovering.
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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lindalemon
- Posts: 9
- Joined: Sat Jan 23, 2021 10:51 pm
Re: Elimination Diet and Weaning off of Budesonide
Yes, thanks Tex, that does make sense, will carry on with the ED and cut out the Rooibos tea. Thank you for coming back to me so promptly, you are an absolute God send!!
. Linda
. Linda