This is rudi again:
I do not think I am gluten sensitive. I had noodles for dinner and no problem. Also when this first started that was one of the things I could eat. I will have to do an elimination of different foods, I guess. I am to
see my dr next month, maybe I will stop endocort to see what happens
Tapering off Entocort...Question??
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Rudi
gluten is inflammatory to everybody.
Once someone has an auto-immune condition, to continue eating high inflammation ingredients is putting alot of extra stress on your body.
you may not think the gluten is causing issues, but as we age, and with ongoing constant inflammation the body will be impacted by this - damage to the gut, reduction in key nutrients, etc. this can be happening with minimal to minor symptoms. then as we age (not sure how old you are) the ability to heal reduces and for some people no amount of medication, right eating plan and supplements can resolve this.
the other thing we have observed over the past 13 years or more here is that as time goes on, the effectiveness of cortisone treatments like budenside/entocort etc is reduced. there is quite a bit of risk to continue consuming gluten.
if you are not having D, but multiple BM's I would definately do some reading about BAM /bile acids
the treatment approach for this is one of the recommended medication options for MC and many here have had good results with it.
Please note, there is no one medication that will work for all for MC. everyone is different
some previous discussions about BAM/bile acid
https://perskyfarms.com/phpBB2/viewtopi ... light=bile
https://perskyfarms.com/phpBB2/viewtopi ... light=bile
gluten is inflammatory to everybody.
Once someone has an auto-immune condition, to continue eating high inflammation ingredients is putting alot of extra stress on your body.
you may not think the gluten is causing issues, but as we age, and with ongoing constant inflammation the body will be impacted by this - damage to the gut, reduction in key nutrients, etc. this can be happening with minimal to minor symptoms. then as we age (not sure how old you are) the ability to heal reduces and for some people no amount of medication, right eating plan and supplements can resolve this.
the other thing we have observed over the past 13 years or more here is that as time goes on, the effectiveness of cortisone treatments like budenside/entocort etc is reduced. there is quite a bit of risk to continue consuming gluten.
if you are not having D, but multiple BM's I would definately do some reading about BAM /bile acids
the treatment approach for this is one of the recommended medication options for MC and many here have had good results with it.
Please note, there is no one medication that will work for all for MC. everyone is different
some previous discussions about BAM/bile acid
https://perskyfarms.com/phpBB2/viewtopi ... light=bile
https://perskyfarms.com/phpBB2/viewtopi ... light=bile
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Rudi,
If you are not sensitive to gluten you will be the first member (who has MC) to hold that honor.
I initially thought that I was not sensitive to gluten, just like you. I reacted to anything and everything, at random, but gluten didn't seem to bother me. But after I cut gluten out of my diet and avoided it 100 % for a few months, all my other sensitivities began to make sense (I kept a log book). Cutting out gluten allowed me to figure out all my sensitivities, so that when I eventually cut them all out at one time, I was in remission in about a week. I never took budesonide.
Tex
If you are not sensitive to gluten you will be the first member (who has MC) to hold that honor.
I initially thought that I was not sensitive to gluten, just like you. I reacted to anything and everything, at random, but gluten didn't seem to bother me. But after I cut gluten out of my diet and avoided it 100 % for a few months, all my other sensitivities began to make sense (I kept a log book). Cutting out gluten allowed me to figure out all my sensitivities, so that when I eventually cut them all out at one time, I was in remission in about a week. I never took 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.
Hi Rudi,
I was on budesonide for about 4.5 months. For the first 2-1/2 months I ate gluten and dairy while I was on budesonide.
i.e. I was able to eat gluten and dairy on budesonide and have solid stool (but I had a lot of gas.)
It wasn't until I wanted to get off of budesonide, about 8 weeks before last pill that I went GF and DF.
I got off of budesonide and stayed GF and DF and never looked back.
The budesonide studies for MC show about 70-80% relapse within 2 weeks of last pill. This is for folks that are not
GF and not DF. The gastro docs should be familiar with these studies. They are in their gastro magazines.
Our forum members get close to 98% in getting off of budesonide by going GF and DF. WE have a few tough
cases that are not able to get off of budesonide even though they are GF and DF.
The bile acids worked for me but I was also GF and DF at the time. I used them a different time for about a month. I had side effects so honestly I stay in remission by GF and DF.
It sounds like to get off of budesonide you will need to go GF and DF since you have already relapsed.
The drugs don't heal us, they help with the symptoms while re reduce inflammation through our foods.
****Pick up a copy of TEx's book, upper right corner, the only book in the world on MC.
I was on budesonide for about 4.5 months. For the first 2-1/2 months I ate gluten and dairy while I was on budesonide.
i.e. I was able to eat gluten and dairy on budesonide and have solid stool (but I had a lot of gas.)
It wasn't until I wanted to get off of budesonide, about 8 weeks before last pill that I went GF and DF.
I got off of budesonide and stayed GF and DF and never looked back.
The budesonide studies for MC show about 70-80% relapse within 2 weeks of last pill. This is for folks that are not
GF and not DF. The gastro docs should be familiar with these studies. They are in their gastro magazines.
Our forum members get close to 98% in getting off of budesonide by going GF and DF. WE have a few tough
cases that are not able to get off of budesonide even though they are GF and DF.
The bile acids worked for me but I was also GF and DF at the time. I used them a different time for about a month. I had side effects so honestly I stay in remission by GF and DF.
It sounds like to get off of budesonide you will need to go GF and DF since you have already relapsed.
The drugs don't heal us, they help with the symptoms while re reduce inflammation through our foods.
****Pick up a copy of TEx's book, upper right corner, the only book in the world on MC.
Hi Rudi- I also took Budesonide for 4 1/2 months. During that time I eliminated gluten, dairy and soy from my diet. When I titrated off of Budesonide (like Brandy describes in her post) I did not relapse because I had eliminated the majority of my intolerances. In addition, what came to light was that I was reacting also to eggs but the Budesonide masked that. Budesonide/Entocort will hide sensitivities. It will be harder for you to know what all your sensitivities are while you are on Budesonide. To echo what others are saying here- the best way to start healing is to eliminate gluten and dairy to reduce the chance of relapse once you stop Entocort, then start further elimination diet measures to see what else is problematic. It’s very helpful to keep a food log to see the trends.
Wishing you the best-
Carol
Wishing you the best-
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Rudi,
If you have been taking budesonide for more than a few months, it is suppressing your immune system and your immune system may not be able to produce normal amounts of IgA antibodies. If that has happened, some of your negative results on the tests may be false (incorrect). Positive results would still be correct (they would be unaffected). Only the negative results might be incorrect.
If you only tested for gluten sensitivity, that result should still be correct (unless you have been taking budesonide for well over a year).
Tex
If you have been taking budesonide for more than a few months, it is suppressing your immune system and your immune system may not be able to produce normal amounts of IgA antibodies. If that has happened, some of your negative results on the tests may be false (incorrect). Positive results would still be correct (they would be unaffected). Only the negative results might be incorrect.
If you only tested for gluten sensitivity, that result should still be correct (unless you have been taking budesonide for well over a year).
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 Rudi,
What about dairy products? Are you avoiding them also? And Soy? Eggs could also be a problem. We have to track down all the problem foods. We're all different, so what works for some, won't work for everyone. If you keep a food diary, you should be able to track down the problem.
Tex
What about dairy products? Are you avoiding them also? And Soy? Eggs could also be a problem. We have to track down all the problem foods. We're all different, so what works for some, won't work for everyone. If you keep a food diary, you should be able to track down the problem.
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 Rudi,
‘Yuck’ is a good description of this disease in general.
I agree with Tex: You may have to eliminate all 4- gluten, dairy, soy and eggs- and then see if things settle down. Stick to meats and well cooked vegetables. If you can tolerate rice then keep it. But you may have to pare your diet down to a very basic diet to see progress. Keeping a journal of what you ate and how you felt after that can be very helpful. In my journal I also tracked how well I slept and how stressed I was to see if that also impacted my gut.
When I was reacting I had to give up sugar, fatty meats, caffeine, fiber and anything acidic, along with gluten, soy, dairy and eggs. It feels drastic but it’s well worth the sacrifice.
Carol
‘Yuck’ is a good description of this disease in general.
I agree with Tex: You may have to eliminate all 4- gluten, dairy, soy and eggs- and then see if things settle down. Stick to meats and well cooked vegetables. If you can tolerate rice then keep it. But you may have to pare your diet down to a very basic diet to see progress. Keeping a journal of what you ate and how you felt after that can be very helpful. In my journal I also tracked how well I slept and how stressed I was to see if that also impacted my gut.
When I was reacting I had to give up sugar, fatty meats, caffeine, fiber and anything acidic, along with gluten, soy, dairy and eggs. It feels drastic but it’s well worth the sacrifice.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou