FOOD TESTING & ROTATION
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
FOOD TESTING & ROTATION
I was diagnosed with MC officially in May 2014 & started on Budesonide in July 2014. Since I reacted right away with the diarrhea stoping within a couple of days my NT told me to start weaning from 3 pills (9mg) to 2 and after a few days go to 1 (3mg) and stay on that. I have been on 1 (3mg) since late August 2014. Doing very well, life is good. I will be seeing my NT at the end of this month and I know he is going to want me to start going every other day etc until I wean off. I noticed in reading Tex's book that most people were on 9 mg for many many months. I of course am so afraid of coming off this. I also was diagnosed with SIBO at the same time so I have been following a GF, DF, Soy Free, Grain Free diet since 7/2014. My question is was anyone else on the low dose of Budesonide for many months like me and if your off did you do ok? In regards to the Rotation question, I have been ok with eating eggs and butter. The NT told me if it didn't bother me then it was ok. With the restrictions of all the other things I cannot eat, eggs have been my main stay most mornings. I have found a Paleo granola (basically seeds and nuts) that are ok for me but I cannot eat this more than maybe once or twice a week as seeds & nuts are roughage that just doesn't work on a regular basis. Will I become sensitive to eggs because I'm eating them daily? If I have figured out without Food Testing what works, would it be beneficial to get these test's done? Hope this makes sense. Thanks in advance, Jan
Collagenous Colitis, Benign Cramp Fasciculations in lower legs, Thyroid and High Cholesterol
Hi Jan,
When I was recovering I had a problem deciding whether or not I was sensitive to eggs and soy. I kept getting mixed signals, so I ordered the EnteroLab tests. They confirmed that I was not sensitive to either of those foods, so that eliminated a lot of continued trial and error testing and indecision. If we're sure, one way or the other, then we probably won't benefit from the tests, but when we continue to wonder, the test results can save a lot time, aggravation, and angst.
Regarding budesonide, some of us are more sensitive/responsive to it than others. We have a few members (who no longer post) who were/are unable to use more than a single 3 mg capsule per day, right from the start of treatment. Any higher dose would either cause serious neurological side effects, or severe constipation. But the main point is that the 3 mg dose worked effectively, right from the start. So clearly budesonide is more effective for some of us, than for others. I don't recall the details of their treatment history otherwise, but presumably (at least in the cases that I can recall) they were able to slowly wean off the medication and maintain their remission by diet alone. The problem we have with verifying such information is that most members eventually stop posting after they have been in remission for a while, as they move on and begin to resume the lifestyle they were leading before MC derailed their lives.
You're very welcome,
Tex
When I was recovering I had a problem deciding whether or not I was sensitive to eggs and soy. I kept getting mixed signals, so I ordered the EnteroLab tests. They confirmed that I was not sensitive to either of those foods, so that eliminated a lot of continued trial and error testing and indecision. If we're sure, one way or the other, then we probably won't benefit from the tests, but when we continue to wonder, the test results can save a lot time, aggravation, and angst.
Regarding budesonide, some of us are more sensitive/responsive to it than others. We have a few members (who no longer post) who were/are unable to use more than a single 3 mg capsule per day, right from the start of treatment. Any higher dose would either cause serious neurological side effects, or severe constipation. But the main point is that the 3 mg dose worked effectively, right from the start. So clearly budesonide is more effective for some of us, than for others. I don't recall the details of their treatment history otherwise, but presumably (at least in the cases that I can recall) they were able to slowly wean off the medication and maintain their remission by diet alone. The problem we have with verifying such information is that most members eventually stop posting after they have been in remission for a while, as they move on and begin to resume the lifestyle they were leading before MC derailed their lives.
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.
That makes sense and I appreciate your input. Meant to ask you a question. The women in your book that had passed away too young ( I read her blog that you refer to). She commented that she changed diet etc but after coming off the Steroid she was on pre-Budesonide that it all came back with a vengeance! Her story was heartbreaking to me and depressing (again why I'm so scared to come off the Budesonide). Was she truly not following the diet that you and others have successfully done to keep this in remission?tex wrote:Hi Jan,
When I was recovering I had a problem deciding whether or not I was sensitive to eggs and soy. I kept getting mixed signals, so I ordered the EnteroLab tests. They confirmed that I was not sensitive to either of those foods, so that eliminated a lot of continued trial and error testing and indecision. If we're sure, one way or the other, then we probably won't benefit from the tests, but when we continue to wonder, the test results can save a lot time, aggravation, and angst.
Regarding budesonide, some of us are more sensitive/responsive to it than others. We have a few members (who no longer post) who were/are unable to use more than a single 3 mg capsule per day, right from the start of treatment. Any higher dose would either cause serious neurological side effects, or severe constipation. But the main point is that the 3 mg dose worked effectively, right from the start. So clearly budesonide is more effective for some of us, than for others. I don't recall the details of their treatment history otherwise, but presumably (at least in the cases that I can recall) they were able to slowly wean off the medication and maintain their remission by diet alone. The problem we have with verifying such information is that most members eventually stop posting after they have been in remission for a while, as they move on and begin to resume the lifestyle they were leading before MC derailed their lives.
You're very welcome,
Tex
Thanks,
Jan
Collagenous Colitis, Benign Cramp Fasciculations in lower legs, Thyroid and High Cholesterol
That makes sense and I appreciate your input. Meant to ask you a question. The women in your book that had passed away too young ( I read her blog that you refer to). She commented that she changed diet etc but after coming off the Steroid she was on pre-Budesonide that it all came back with a vengeance! Her story was heartbreaking to me and depressing (again why I'm so scared to come off the Budesonide). Was she truly not following the diet that you and others have successfully done to keep this in remission?
Thanks,
Jan
Thanks,
Jan
Collagenous Colitis, Benign Cramp Fasciculations in lower legs, Thyroid and High Cholesterol
Jan,
She was using prednisone, and the problem with prednisone is that after we use it for a while, it tends to take over the normal functions of our adrenals, and as a result our adrenals pretty much stop functioning in order to prevent our cortisol levels from reaching excessive levels. If we only take prednisone for a few weeks or so, it's no big deal to wean off the prednisone because as the corticosteroid levels from the prednisone come down, the adrenals will begin to function normally again, in order to maintain a normal cortisol level (actually, a normal range, because cortisol levels usually peak in the mornings, and then slowly decline as the day goes on).
But if prednisone is used for years, the adrenals tend to "forget" how to function normally. This is an example of the old "use it or lose it" saying. If we fail to use certain muscles for years, they will tend to atrophy. And the glands in our endocrine system slowly lose their ability to function normally if we don't use them for a long period of time. In most cases, the adrenals will eventually become functional again as prednisone is slowly withdrawn, but they may or may not be able to eventually return to their original production capacity. And while the adrenals are struggling to "relearn" how to be productive, the withdrawal symptoms (caused by a deficiency of cortisol and other hormones) can be horrific.
While withdrawal from long-term use of budesonide can be noticeable in some cases, it is never anywhere near as severe as withdrawal from prednisone or any of the other classic corticosteroids. Unlike conventional corticosteroids, less than 20 % of budesonide is absorbed into the bloodstream, so it is far less likely to have any of the strong systemic effects so common with prednisone. And slow withdrawal from budesonide will always allow the adrenals to return to their normal functional ability. The only problems that have occurred have been due to GI specialists advising patients to discontinue the use of budesonide without going through a period of dose tapering. We have one member who suffered very serious adrenal damage because her doctor made that mistake. He foolishly told her to stop taking it cold turkey, after she had been taking it for over a year (at full strength as I recall). That's a no-no.
But your point about diet is right on target. Polly was a member of the original discussion board long before I was, and she met Sally on a prior listserver, and if my memory is reliable on this, Polly mentioned that in the early days (this was back when Dr. Fine had just discovered the connection between MC and gluten and he posted information on that early listserver), no one was aware that additional food sensitivities were involved with the inflammation that causes MC. Consequently when Sally tried the diet early on, she was unable to achieve remission (because she almost surely had additional food sensitivities), so she eventually gave up on it when it didn't seem to work for her. Sadly, she was a victim of the times. She tried the diet and gave up on it because the original diet did not recognize the possibility of other food sensitivities.
And unfortunately, without cutting at least gluten out of the diet, in many cases budesonide is not enough to control the symptoms, so that's why she had so much trouble with prednisone. We have to keep in mind though that she was a pioneer in the treatment of MC, and many of the things that are so obvious to us now (in hindsight) were not so obvious in the early days. She paved the way for those of us who followed by teaching us to learn how to control our symptoms by sharing information on the internet. We will be eternally grateful to her.
You're very welcome,
Tex
She was using prednisone, and the problem with prednisone is that after we use it for a while, it tends to take over the normal functions of our adrenals, and as a result our adrenals pretty much stop functioning in order to prevent our cortisol levels from reaching excessive levels. If we only take prednisone for a few weeks or so, it's no big deal to wean off the prednisone because as the corticosteroid levels from the prednisone come down, the adrenals will begin to function normally again, in order to maintain a normal cortisol level (actually, a normal range, because cortisol levels usually peak in the mornings, and then slowly decline as the day goes on).
But if prednisone is used for years, the adrenals tend to "forget" how to function normally. This is an example of the old "use it or lose it" saying. If we fail to use certain muscles for years, they will tend to atrophy. And the glands in our endocrine system slowly lose their ability to function normally if we don't use them for a long period of time. In most cases, the adrenals will eventually become functional again as prednisone is slowly withdrawn, but they may or may not be able to eventually return to their original production capacity. And while the adrenals are struggling to "relearn" how to be productive, the withdrawal symptoms (caused by a deficiency of cortisol and other hormones) can be horrific.
While withdrawal from long-term use of budesonide can be noticeable in some cases, it is never anywhere near as severe as withdrawal from prednisone or any of the other classic corticosteroids. Unlike conventional corticosteroids, less than 20 % of budesonide is absorbed into the bloodstream, so it is far less likely to have any of the strong systemic effects so common with prednisone. And slow withdrawal from budesonide will always allow the adrenals to return to their normal functional ability. The only problems that have occurred have been due to GI specialists advising patients to discontinue the use of budesonide without going through a period of dose tapering. We have one member who suffered very serious adrenal damage because her doctor made that mistake. He foolishly told her to stop taking it cold turkey, after she had been taking it for over a year (at full strength as I recall). That's a no-no.
But your point about diet is right on target. Polly was a member of the original discussion board long before I was, and she met Sally on a prior listserver, and if my memory is reliable on this, Polly mentioned that in the early days (this was back when Dr. Fine had just discovered the connection between MC and gluten and he posted information on that early listserver), no one was aware that additional food sensitivities were involved with the inflammation that causes MC. Consequently when Sally tried the diet early on, she was unable to achieve remission (because she almost surely had additional food sensitivities), so she eventually gave up on it when it didn't seem to work for her. Sadly, she was a victim of the times. She tried the diet and gave up on it because the original diet did not recognize the possibility of other food sensitivities.
And unfortunately, without cutting at least gluten out of the diet, in many cases budesonide is not enough to control the symptoms, so that's why she had so much trouble with prednisone. We have to keep in mind though that she was a pioneer in the treatment of MC, and many of the things that are so obvious to us now (in hindsight) were not so obvious in the early days. She paved the way for those of us who followed by teaching us to learn how to control our symptoms by sharing information on the internet. We will be eternally grateful to her.
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.
Thank you for explaining that to me. I was a bit fretful after reading about her struggles. I do know my NT wants to wean me off slowly but I plan on making sure its very slow and I want to make sure he has your book as it is so very helpful. Thank you for taking the time (although I'm sure part of it helped to be doing something other than worrying about the MC) to write it.
Jan
Jan
Collagenous Colitis, Benign Cramp Fasciculations in lower legs, Thyroid and High Cholesterol
-
Sheila
- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
After months of WD, Entocort at 9 mg stopped the WD instantly and resulted very quickly in constipation. I asked for advice here and dropped to 3 mg a day without further problems. After a little over a year, I dropped to 3 mg every other day and finally 3 mg every third day. When I stopped Entocort entirely I had to modify my diet further. I've been off Entocort for several months and am doing well as long as I stick to my modified paleo diet. I took Entocort (budesonide) for about 2 1/2 years.
Despite being GF, DF, SF, EF I was still having WD. For me, Entocort was a miraculous.
Sheila W
Despite being GF, DF, SF, EF I was still having WD. For me, Entocort was a miraculous.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein
I read your input with great interest, regarding muscles that are not in use, will "die" and the importance of tapering slowly, even after having been on Entocort.tex wrote:Jan,
But if prednisone is used for years, the adrenals tend to "forget" how to function normally. This is an example of the old "use it or lose it" saying. If we fail to use certain muscles for years, they will tend to atrophy. And the glands in our endocrine system slowly lose their ability to function normally if we don't use them for a long period of time. In most cases, the adrenals will eventually become functional again as prednisone is slowly withdrawn, but they may or may not be able to eventually return to their original production capacity. And while the adrenals are struggling to "relearn" how to be productive, the withdrawal symptoms (caused by a deficiency of cortisol and other hormones) can be horrific.
While withdrawal from long-term use of budesonide can be noticeable in some cases, it is never anywhere near as severe as withdrawal from prednisone or any of the other classic corticosteroids. Unlike conventional corticosteroids, less than 20 % of budesonide is absorbed into the bloodstream, so it is far less likely to have any of the strong systemic effects so common with prednisone. And slow withdrawal from budesonide will always allow the adrenals to return to their normal functional ability. The only problems that have occurred have been due to GI specialists advising patients to discontinue the use of budesonide without going through a period of dose tapering.
You're very welcome,
Tex
As you may have noticed, I have had some serious sciatic pains. Now, as I'm tapering off Entocort (one capsule every 6th day, only have 5 capsules left), my awful sciatic pain is much better.
It could be a physcological effect, because this happened after my GP volunteered to send me to a specialist in back problems, but I think not. I think getting rid of Entocort in my body, gives my body and adrenal glands the possibility of "repairing" itself, in this case the sciatic problem.
I only have some leg calf cramps left, but I take a lot of magnesium both orally and in the form of foot soaks, and I have decided that my cramps will disappear, given time.
I appreciate all your knowledge, and your willingness to pass it on to all of us.
I'm sure that if I should meet you one day, I would see white angel wings on your shoulders.
Love,
Lilia
PS: I found this article, it doesn't point out much new to me, except this: "Studies have found associations between gluten sensitivity and disorders in every major part of the nervous system, including the spinal cord, and the nerves that extend into the arms and feet. ". So, let's hope that this is why I'm feeling less pain.
http://brainhealthbook.com/gluten-can-d ... us-system/
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Lilia,
That's wonderful news that your sciatic pain is fading away. Entocort is known to cause nerve pain, so it's certainly possible that it could adversely affect the sciatic nerve. Did you know that magnesium also helps to repair neurological damage, including restoring proper sciatic nerve function, and reducing sciatic nerve inflammation?
Magnesium supplement promotes sciatic nerve regeneration and down-regulates inflammatory response.
You may be pain-free in a few more months.
You're very kind, and I appreciate your kind words.
Love,
Tex
That's wonderful news that your sciatic pain is fading away. Entocort is known to cause nerve pain, so it's certainly possible that it could adversely affect the sciatic nerve. Did you know that magnesium also helps to repair neurological damage, including restoring proper sciatic nerve function, and reducing sciatic nerve inflammation?
Magnesium supplement promotes sciatic nerve regeneration and down-regulates inflammatory response.
You may be pain-free in a few more months.
You're very kind, and I appreciate your kind words.
Love,
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.
Wow, that's interesting! Thank you!tex wrote:Lilia,
That's wonderful news that your sciatic pain is fading away. Entocort is known to cause nerve pain, so it's certainly possible that it could adversely affect the sciatic nerve. Did you know that magnesium also helps to repair neurological damage, including restoring proper sciatic nerve function, and reducing sciatic nerve inflammation?
Magnesium supplement promotes sciatic nerve regeneration and down-regulates inflammatory response.
You may be pain-free in a few more months.
You're very kind, and I appreciate your kind words.
Love,
Tex
I will up my magnesium supplement. I take 400 mg magnesium citrate per day, in addition to foot soaks. I read your experience with the breathing and the good result you have from magnesium, and I understand you take 800 mg per day.
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Actually I'm taking 1,200 mg per day, now. 400 mg of magnesium citrate and 400 mg of magnesium glycinate after breakfast, and either 400 mg of magnesium glycinate before bedtime, or magnesium oil spray about 15 or 20 minutes before a pre-bedtime shower.Lilia wrote:I read your experience with the breathing and the good result you have from magnesium, and I understand you take 800 mg per day.
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.