I know everyone is different but I have a question.
I stopped my Budesonide several weeks. My only issue was my Enterolab report showed a score of "14" for gluten and the top of normal is "10". Otherwise everything else I was tested for was in the 'ok' range.
I have been careful with food...testing GF foods but I am NOT completely gluten-free, although I do try to limit it and eat GF when I can. I eat GF for breakfast and usually lunch. Supper GF when we are home.
When do people typically relapse if it is going to be from food after discontinuing the meds?
The ONLY time I had an issue was last weekend when we went out to eat. I ordered a dish that came and I had one look at it and it gave me feelings that I shouldn't eat it. It was GREASY. It had a BUNCH of greasy french-fried onions on it, and the french fries that came with it were limp and greasy. I just kind of picked on it, tried to find and eat the chicken, but when I got home, I had "D" right away. I went right back to watching my diet and was fine. This doesn't appear to be a gluten issue, but a 'grease' issue.
Since then no flare ups at all. I've been testing the GF foods because I know it's better for me, plus if I need to go GF I will know what I can eat and what I like.
Opinions?
After Budesonide stops, when would I relapse?
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birdlover3
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After Budesonide stops, when would I relapse?
Diagnosed with Collagenous Colitis November 2012.
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wonderwoman
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Twice or three times I relapsed at about 7 or 8 weeks of being off Budesonide.
I went back on April 30th. I took 3 for 3 days, then 2 for 9 days and have taken 1 for the last 4 days and am still having one Norman every morning. I plan on staying on one for awhile and then will alternate days and see what happens. I have had one meal of turkey without a reaction but no carrots since my bad experience with turkey soup the last week of March. I have not supplimented with Imodium.
I went back on April 30th. I took 3 for 3 days, then 2 for 9 days and have taken 1 for the last 4 days and am still having one Norman every morning. I plan on staying on one for awhile and then will alternate days and see what happens. I have had one meal of turkey without a reaction but no carrots since my bad experience with turkey soup the last week of March. I have not supplimented with Imodium.
Charlotte
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
Hi Birdlover,
This is just my thoughts so perhaps others can chime in. I believe anyone who discontinues Budesonide is at higher risk of relapse in the first 8 weeks after the last pill. There are traces of Budesonide in our system for for 8 weeks. If you make it to week 9 you will be more in the clear. I got off of Budesonide in Jan 2012 and had about 6 mini flares in the last calendar year. One was a family stress flare, two were eating the wrong things at football game parties, three were eating the wroing things at restaurants, and I believe one was taking supplements in the evening without food and one was a stress flare when I changed from HRT to bioidenticals.
I knew when I took my last Budesonide that it would be my last pink pill forever. It was a strong drug for me to be on and I was really glad to be off of it so I think for that reason I try to be (except for football game parties) really careful with what I eat. Suggest being extra vigilant for the next 6 months or so and get good and healed---just my thoughts. I've only had mini flares but a lot of folks struggle with big time relapses of unknown origin that are tough to get out of.
I believe for most of us we'll need to be GF for life unless it was a drug caused case of CC or LC that was diagnosed and treated really really fast after MC started before the genes turned on the food sensitivities. (Hopefully I said that last sentence correctly.)
This is just my thoughts so perhaps others can chime in. I believe anyone who discontinues Budesonide is at higher risk of relapse in the first 8 weeks after the last pill. There are traces of Budesonide in our system for for 8 weeks. If you make it to week 9 you will be more in the clear. I got off of Budesonide in Jan 2012 and had about 6 mini flares in the last calendar year. One was a family stress flare, two were eating the wrong things at football game parties, three were eating the wroing things at restaurants, and I believe one was taking supplements in the evening without food and one was a stress flare when I changed from HRT to bioidenticals.
I knew when I took my last Budesonide that it would be my last pink pill forever. It was a strong drug for me to be on and I was really glad to be off of it so I think for that reason I try to be (except for football game parties) really careful with what I eat. Suggest being extra vigilant for the next 6 months or so and get good and healed---just my thoughts. I've only had mini flares but a lot of folks struggle with big time relapses of unknown origin that are tough to get out of.
I believe for most of us we'll need to be GF for life unless it was a drug caused case of CC or LC that was diagnosed and treated really really fast after MC started before the genes turned on the food sensitivities. (Hopefully I said that last sentence correctly.)
Birdlover, I don't think that your score indicates a slight gluten sensitivity. It seems to be pretty conclusive you react to gluten. The french fried onions and probably the french fries most likely had gluten. Good luck on your journey. DebMy only issue was my Enterolab report showed a score of "14" for gluten and the top of normal is "10".
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birdlover3
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Hi,
I relapsed immediatly... I tried to get off the budenofalk (entocort) 5 times. It worked the last time.
Don't worry about the relapses. Just don't stress about it. If it happens, it happens and you know now what to do. The more you stress, the worse you will feel.
I saw major improvement when I went completely GF, dairy free, soy free, egg free. I eat verry little amount of fat during the day.
This seems to do the trick for me.
Good luck!
Keep us posted.
Grts
Julie
I relapsed immediatly... I tried to get off the budenofalk (entocort) 5 times. It worked the last time.
Don't worry about the relapses. Just don't stress about it. If it happens, it happens and you know now what to do. The more you stress, the worse you will feel.
I saw major improvement when I went completely GF, dairy free, soy free, egg free. I eat verry little amount of fat during the day.
This seems to do the trick for me.
Good luck!
Keep us posted.
Grts
Julie
It doesn't matter how many times you fall, but how many times you get up en go for it again. HOPE !!!!
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birdlover3
- Adélie Penguin
- Posts: 202
- Joined: Mon Dec 31, 2012 2:04 pm
- Location: Illinois
Hi Birdlover.
it's great that you are off of the meds. Congratulations!
For me and grease, it really depends on the grease. I can eat the fat that is in meats with no problem, but certain vegetable oils do me in. Canola oil is terrible for me and I know that many restaurants use it... as does many chip companies.
I agree with everyone who says you react to gluten. it may not be the type of reaction that is spontaneous, but you already were tested and it's obvious that it will cause inflammation. My guess is if you continue to "get loose" with the amount of gluten you eat, you will probably relapse down the road. Only you can make that decision.
Good luck
Leah
it's great that you are off of the meds. Congratulations!
For me and grease, it really depends on the grease. I can eat the fat that is in meats with no problem, but certain vegetable oils do me in. Canola oil is terrible for me and I know that many restaurants use it... as does many chip companies.
I agree with everyone who says you react to gluten. it may not be the type of reaction that is spontaneous, but you already were tested and it's obvious that it will cause inflammation. My guess is if you continue to "get loose" with the amount of gluten you eat, you will probably relapse down the road. Only you can make that decision.
Good luck
Leah
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birdlover3
- Adélie Penguin
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- Joined: Mon Dec 31, 2012 2:04 pm
- Location: Illinois
Does GREASE mean gluten? That is the only problem I have had. I almost need a laxative otherwise...don't even go every day.Leah wrote:Hi Birdlover.
it's great that you are off of the meds. Congratulations!
For me and grease, it really depends on the grease. I can eat the fat that is in meats with no problem, but certain vegetable oils do me in. Canola oil is terrible for me and I know that many restaurants use it... as does many chip companies.
I agree with everyone who says you react to gluten. it may not be the type of reaction that is spontaneous, but you already were tested and it's obvious that it will cause inflammation. My guess is if you continue to "get loose" with the amount of gluten you eat, you will probably relapse down the road. Only you can make that decision.
Good luck
Leah
Diagnosed with Collagenous Colitis November 2012.
Hi BL.
No, grease is not gluten. There is a difference to what CAUSES inflammation and what foods gives us D. although most of us with MC are D dominant, there are some that are C dominant ( or bounce between D and C). Both are caused because of the inflammation. If you are slightly constipated, you may just need to put some fiber back in your diet... or add a little more healthy fat in. But you should still stay away from gluten because your test already told you that you react to it ( which means inflammation). it could slowly lead to another flare down the road...... Plus, once you are off the Entocort and then need to go back on it, for many who have done this, it doesn't work as well with each subsequent use.
Leah
No, grease is not gluten. There is a difference to what CAUSES inflammation and what foods gives us D. although most of us with MC are D dominant, there are some that are C dominant ( or bounce between D and C). Both are caused because of the inflammation. If you are slightly constipated, you may just need to put some fiber back in your diet... or add a little more healthy fat in. But you should still stay away from gluten because your test already told you that you react to it ( which means inflammation). it could slowly lead to another flare down the road...... Plus, once you are off the Entocort and then need to go back on it, for many who have done this, it doesn't work as well with each subsequent use.
Leah
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birdlover3
- Adélie Penguin
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What is a good sources of fiber to add? Yesterday I bought a box of flaxseed cereal that says it has fiber and added it to my Chex. I used to be so 'regular' before MC by eating my raisin bran every morning. I miss that. I certainly don't like the idea of having "C" and it's not good for me either. I am eating some fruits and eat veggies every night.
Diagnosed with Collagenous Colitis November 2012.
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birdlover3
- Adélie Penguin
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- Joined: Mon Dec 31, 2012 2:04 pm
- Location: Illinois
Barb,
Your constipation and your stomach noises are symptoms of active MC. Some of us have C rather than D when we react to certain foods, and you appear to be one of those. Are you eating any dairy products? For some people gluten can sometimes cause C (or alternating D and C).
Unfortunately, most of us can't cheat on our diet and expect to remain symptom free. We all wish we could do that, but it just doesn't work — if we do that, eventually we end up sick again just like we were when we first developed the disease.
The reason why you can't handle any significant amount of grease is because your digestive system has not been able to heal, so your digestive system is not able to produce enough of the enzymes necessary to be able to digest certain foods, such as fats/grease.
If we are sensitive to gluten, we have to totally avoid it, 100 % of the time, if we want to remain in remission.
Tex
Your constipation and your stomach noises are symptoms of active MC. Some of us have C rather than D when we react to certain foods, and you appear to be one of those. Are you eating any dairy products? For some people gluten can sometimes cause C (or alternating D and C).
Unfortunately, most of us can't cheat on our diet and expect to remain symptom free. We all wish we could do that, but it just doesn't work — if we do that, eventually we end up sick again just like we were when we first developed the disease.
The reason why you can't handle any significant amount of grease is because your digestive system has not been able to heal, so your digestive system is not able to produce enough of the enzymes necessary to be able to digest certain foods, such as fats/grease.
If we are sensitive to gluten, we have to totally avoid it, 100 % of the time, if we want to remain in remission.
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.