Soo.... If I started the Entocort last week and this week start with the GF/kinda bland diet for a while... If my tummy calms down.... How do I know if its the Entocort or the diet? Can the med mask some of the milder reactions? Or will I just not really know for sure until I wean off the med in a few months?
AmyNicki
PS... Are raisins an issue for some? I think it was a handful of raisens that gave me the waves of sweat/nausea last night but w/o the D?
med or diet?
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Hi AmyNicki.
Yes, the Entocort will mask reactions ( if it's working for you), so this is the time to just eat "bland"/GF knowing that by doing so you are not stressing your gut so it can heal. When you start to feel almost constipated, that would be a good time to try to step down the dose. The better your diet, the faster this will probably happen.
For me, it took about a month before I went to 9mg one day and 6 the next and so forth. Did that for a month or so. That's when it was 6mg a day....you get the idea. When I got to one ( 3mg) a day, my BMs did loosen up, but I was still only going once a day. This stage is a good time to pay attention to what foods you are reacting to. I was at this dose for a good two months. This was when I realized that soy was giving me a little trouble. This was also the time I started to test some foods one at a time that I had previously took out. I was able to add some things back in in moderation.
I was completely off in about 6-7 months. I have been drug free ( except for an anthistamine) now for a few months. I am able to take more risks with food now. Sometime I pay for it with looser BM, bloating...etc., but still only go once a day. I can live with that :)
I hope the drugs work for you as well as they did for me.
Happy Thanksgiving
Leah
Yes, the Entocort will mask reactions ( if it's working for you), so this is the time to just eat "bland"/GF knowing that by doing so you are not stressing your gut so it can heal. When you start to feel almost constipated, that would be a good time to try to step down the dose. The better your diet, the faster this will probably happen.
For me, it took about a month before I went to 9mg one day and 6 the next and so forth. Did that for a month or so. That's when it was 6mg a day....you get the idea. When I got to one ( 3mg) a day, my BMs did loosen up, but I was still only going once a day. This stage is a good time to pay attention to what foods you are reacting to. I was at this dose for a good two months. This was when I realized that soy was giving me a little trouble. This was also the time I started to test some foods one at a time that I had previously took out. I was able to add some things back in in moderation.
I was completely off in about 6-7 months. I have been drug free ( except for an anthistamine) now for a few months. I am able to take more risks with food now. Sometime I pay for it with looser BM, bloating...etc., but still only go once a day. I can live with that :)
I hope the drugs work for you as well as they did for me.
Happy Thanksgiving
Leah
Hi AmyNicki,
The med will help get your system calmed down and reduce inflammation in the short term, but the diet will get you to remission for the long term. When I took Entocort I considered it 'buying time'. It got me back on my feet and able to get through a day of demands (work, etc). I used that time to figure out what it meant to go gluten free, dairy free and later soy free. The only thing it masked for me was a reaction to eggs. I could tolerate them on Entocort, but not after I was off. But overall I had my diet mostly figured out so I was ready to titrate off the Entocort.
Raisins can be a problem for some people. They are high in sugar and any dried fruit is considered to be a high histamine food. For some people that's an issue. You may be better off with peeled apples, maybe even cooked apples, to give your gut a rest.
Initially that's what I did--- looked for any food I could tolerate that would also give my gut a rest.
Good luck and feel free to ask anything,
Carol
The med will help get your system calmed down and reduce inflammation in the short term, but the diet will get you to remission for the long term. When I took Entocort I considered it 'buying time'. It got me back on my feet and able to get through a day of demands (work, etc). I used that time to figure out what it meant to go gluten free, dairy free and later soy free. The only thing it masked for me was a reaction to eggs. I could tolerate them on Entocort, but not after I was off. But overall I had my diet mostly figured out so I was ready to titrate off the Entocort.
Raisins can be a problem for some people. They are high in sugar and any dried fruit is considered to be a high histamine food. For some people that's an issue. You may be better off with peeled apples, maybe even cooked apples, to give your gut a rest.
Initially that's what I did--- looked for any food I could tolerate that would also give my gut a rest.
Good luck and feel free to ask anything,
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
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
AmyNicki
welcome, i dont think i said g'day when you first joined
the answer to your question is 'it depends'
as you may have seen from reading some of the posts/threads. We are all very different. What works for one person may not work for another. That is the really crappy part of this condition (pun intended) and why the medical profession struggles to support MC patients.
the tag line i offer to new people is 'there is no right way or wrong way, there is your way'
the decisions that each person makes about their MC management plan is dependant on quite a few factors
- budget, doing what they can afford
- dependants, do they have to care for an elderly relative, look after a family, or do they live alone
- lifestyle - work commitments, hobbies etc
- availability - using the meds/foods/treatments that are readily available to them
- beliefs - decisions about making changes how adaptable to change they are, using treatments and practitioners that suits them
- knowledge - as we learn about this condition and ourselves, we make changes to our management plan
the one common thing amongst the group is that no matter what the matrix of the items above, it takes determination, tenancity and patience.
Depending on the range of symptoms you are having, the entocort will minimise/stop the D. Other symptoms like brain fog, joint aches, will go once the major trigger elements are removed (mindful that major trigger elements are not always food....) and you may not become aware of minor trigger elements until you wean off the entocort.
Sorry there is not 'sure way' or guaranteed solution that we can offer.
welcome, i dont think i said g'day when you first joined
the answer to your question is 'it depends'
as you may have seen from reading some of the posts/threads. We are all very different. What works for one person may not work for another. That is the really crappy part of this condition (pun intended) and why the medical profession struggles to support MC patients.
the tag line i offer to new people is 'there is no right way or wrong way, there is your way'
the decisions that each person makes about their MC management plan is dependant on quite a few factors
- budget, doing what they can afford
- dependants, do they have to care for an elderly relative, look after a family, or do they live alone
- lifestyle - work commitments, hobbies etc
- availability - using the meds/foods/treatments that are readily available to them
- beliefs - decisions about making changes how adaptable to change they are, using treatments and practitioners that suits them
- knowledge - as we learn about this condition and ourselves, we make changes to our management plan
the one common thing amongst the group is that no matter what the matrix of the items above, it takes determination, tenancity and patience.
Depending on the range of symptoms you are having, the entocort will minimise/stop the D. Other symptoms like brain fog, joint aches, will go once the major trigger elements are removed (mindful that major trigger elements are not always food....) and you may not become aware of minor trigger elements until you wean off the entocort.
Sorry there is not 'sure way' or guaranteed solution that we can offer.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
AmyNiki, as mentioned both are key parts of feeling better and more importantly to finding remmision. The meds can kick start the process of reducing the inflammation of your GI tract. Once the meds are stopped the symptoms will return if you have not addressed whats causing the symptoms in the first place.
With MC what causes the inflammation is a reaction to dietary elements that our systems can no longer deal with. With MC statistically about 97% of the time that means gluten, about 80% of the time it means soy and about 66% of the time it means dairy products
These stats are not exact but are a good guide as to what we all seem to deal with. In addition to these, many or most of us have a few other trigger foods, some more than others. To determine this there is testing by Enterolab or by Signet Diagnostics with the MRT testing or just keeping a careful food diary.
I know you may be aware of these issues already but I did want to summarize this one more time. As far as when you will know, it will be after you stop the meds.
As a matter of practicality, I would at least eliminate the gluten and soy for now and then after stopping the Entocort, you could challenge these foods slowly one at a time.
By eliminating these foods and taking the meds, it will give you the quickest path to feeling better and put you in a position to carefully test the foods later in a controlled fashion.
As far as the foods seeming to be bland, well until you learn how to cook GF and SF it does seem different, it's been well over 2 years for me and I've gotten to the point that my cooking is better than before I was diagnosed...now in all fairness I just started really learning how to cook in general after I met some folks on this site. After a bit I found that going GF while it took a bit of effort, there was nothing bland about it at all.
I hope you can find alongtermsolution that works for you
Take care :-)
With MC what causes the inflammation is a reaction to dietary elements that our systems can no longer deal with. With MC statistically about 97% of the time that means gluten, about 80% of the time it means soy and about 66% of the time it means dairy products
These stats are not exact but are a good guide as to what we all seem to deal with. In addition to these, many or most of us have a few other trigger foods, some more than others. To determine this there is testing by Enterolab or by Signet Diagnostics with the MRT testing or just keeping a careful food diary.
I know you may be aware of these issues already but I did want to summarize this one more time. As far as when you will know, it will be after you stop the meds.
As a matter of practicality, I would at least eliminate the gluten and soy for now and then after stopping the Entocort, you could challenge these foods slowly one at a time.
By eliminating these foods and taking the meds, it will give you the quickest path to feeling better and put you in a position to carefully test the foods later in a controlled fashion.
As far as the foods seeming to be bland, well until you learn how to cook GF and SF it does seem different, it's been well over 2 years for me and I've gotten to the point that my cooking is better than before I was diagnosed...now in all fairness I just started really learning how to cook in general after I met some folks on this site. After a bit I found that going GF while it took a bit of effort, there was nothing bland about it at all.
I hope you can find alongtermsolution that works for you
Take care :-)
Joe