I was diagnosed with lymphocytic MC after a colonoscopy (I am a 48 y/o woman). The doctors office prescribed budesonide for 2 weeks, then taper down for another 2. This was all left as a phone message without a word about dietary changes, and I didn't bother calling the office to get more info. Budesonide is helping some but I still have problems when I have milk. Haven't noticed a gluten connection but I see that it's very common.
What I'm reading here and elsewhere is confusing at best, and seems to leave rice, bananas and apple sauce as the only safe foods :(
Will it come back when I'm done with the medication? I don't know how to "test" certain foods because I don't know how quickly diarrhea occurs. For instance, if I have diarrhea at night, how do I know what, of everything I ate that day, is causing it?
This is part question/part venting I guess. This seems like a long healing process that I'm only at the beginning of.
Thanks for listening. :)
2 more weeks of budesonide (sp), then what?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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missbutterfly
- Posts: 15
- Joined: Tue Jun 28, 2016 8:19 pm
Welcome to the family, Miss Butterfly! I'm sorry you have MC, but this forum will give you lots of help and encouragement. Read as much as you can; there is so much good information here.
A two-week course of budesonide followed by a two-week taper is really far too short. I did 3 months, and when I stopped, the D came back within a month, so even that was too short.
Did your doctor tell you that budesonide only masks the symptoms? MC is an incurable disease. Everyone on this forum has found that the only way to really deal with it is to make diet changes. Budesonide (Entocort) suppresses symptoms so that we can have a half-decent life while making the diet changes that bring healing.
Antibodies to gluten have a 120-day half life, so it takes a long time of being totally off gluten-containing products before you see that it does make a difference. Most of us have to eliminate gluten, dairy, and soy, and many of us have to eliminate eggs. And it seems that each of us have different things in addition to those four that bother us. I myself can't eat any legumes--no beans, peas, peanuts.
There is a lab called EnteroLab that does stool tests for food intolerances. These are more reliable than the normal blood or skin prick tests that are done. You can order tests, and they send you a kit, and you send them back a stool sample. Many doctors won't order EnteroLab tests, and many insurances won't cover it. I had to pay out of pocket, and consider it some of the best money I have ever spent. It gave a a place to start on knowing what foods were a problem, and what to eliminate right away. Then I refined it by testing other foods, but knowing right off that gluten, dairy, and soy were off-limits to me was such a help.
Tex and Gabes and others will give you more information, and more detail than I can.
I'll just mention that when I by accident eat gluten, dairy, or soy, I don't see immediate problems. With gluten, about 18 hours later I'll get a bad headache and D. With soy, it's 3 or 4 days later, and I get terrible fatigue, sleepiness, and body aches, with a little D. I keep a "food and poop" diary, and write down everything I eat, and what my BMs are like, and any other things I notice, like headaches, fatigue, etc., so that I can see correlations. (I mistakenly ate a hamburger that contained textured vegetable protein--soy! on the 4th of July, so I'm expecting to be extra tired and achy later on this week.)
Martha
A two-week course of budesonide followed by a two-week taper is really far too short. I did 3 months, and when I stopped, the D came back within a month, so even that was too short.
Did your doctor tell you that budesonide only masks the symptoms? MC is an incurable disease. Everyone on this forum has found that the only way to really deal with it is to make diet changes. Budesonide (Entocort) suppresses symptoms so that we can have a half-decent life while making the diet changes that bring healing.
Antibodies to gluten have a 120-day half life, so it takes a long time of being totally off gluten-containing products before you see that it does make a difference. Most of us have to eliminate gluten, dairy, and soy, and many of us have to eliminate eggs. And it seems that each of us have different things in addition to those four that bother us. I myself can't eat any legumes--no beans, peas, peanuts.
There is a lab called EnteroLab that does stool tests for food intolerances. These are more reliable than the normal blood or skin prick tests that are done. You can order tests, and they send you a kit, and you send them back a stool sample. Many doctors won't order EnteroLab tests, and many insurances won't cover it. I had to pay out of pocket, and consider it some of the best money I have ever spent. It gave a a place to start on knowing what foods were a problem, and what to eliminate right away. Then I refined it by testing other foods, but knowing right off that gluten, dairy, and soy were off-limits to me was such a help.
Tex and Gabes and others will give you more information, and more detail than I can.
I'll just mention that when I by accident eat gluten, dairy, or soy, I don't see immediate problems. With gluten, about 18 hours later I'll get a bad headache and D. With soy, it's 3 or 4 days later, and I get terrible fatigue, sleepiness, and body aches, with a little D. I keep a "food and poop" diary, and write down everything I eat, and what my BMs are like, and any other things I notice, like headaches, fatigue, etc., so that I can see correlations. (I mistakenly ate a hamburger that contained textured vegetable protein--soy! on the 4th of July, so I'm expecting to be extra tired and achy later on this week.)
Martha
Martha
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missbutterfly
- Posts: 15
- Joined: Tue Jun 28, 2016 8:19 pm
Hi Martha,
Thanks for your reply! The enterolab test sounds like a good idea. I'll look into that. I didn't think a month on budensonide sounded like enough either, although I'm not enjoying the side effects (starving all the time).
I know I have to eliminate dairy, and I will also try no-gluten. Thanks again for your help.
Thanks for your reply! The enterolab test sounds like a good idea. I'll look into that. I didn't think a month on budensonide sounded like enough either, although I'm not enjoying the side effects (starving all the time).
I know I have to eliminate dairy, and I will also try no-gluten. Thanks again for your help.
Hi and Welcome Butterfly,
Martha is right, 4 weeks not enough on budesonide. Four weeks is almost certain relapse. Typically in US budesonide is prescribed for 3 months and on the forum we find even that is not long enough. Forum members find better results with 4-5-6 months with long slow taper at low end.
Suggest talk with your nurse or MD maybe two weeks in and mention pharmacist said something about 3 months when you filled scrip and you need more time. Suggest don't mention learning this on forum. Doctors aren't real crazy about forums.
Sorry for short post, limited time.
Martha is right, 4 weeks not enough on budesonide. Four weeks is almost certain relapse. Typically in US budesonide is prescribed for 3 months and on the forum we find even that is not long enough. Forum members find better results with 4-5-6 months with long slow taper at low end.
Suggest talk with your nurse or MD maybe two weeks in and mention pharmacist said something about 3 months when you filled scrip and you need more time. Suggest don't mention learning this on forum. Doctors aren't real crazy about forums.
Sorry for short post, limited time.
Hello,
Welcome to the group. Martha did a good job of answering most of your questions. And her suggestion to keep a diary is right on target. It's the method used by most of us to help figure out what is causing our reactions. Without a diary, the varying time lags for the reactions can make correlating the foods with the reactions almost impossible. But if you want to make the job of figuring out which foods are problems and which ones are not, as Martha suggested, the EneroLab tests can greatly simplify the process.
It's not quite that bad. You can download a list of food guidelines at the following link:
Download diet guidelines
Again, welcome aboard and please feel free to ask anything.
Tex
Welcome to the group. Martha did a good job of answering most of your questions. And her suggestion to keep a diary is right on target. It's the method used by most of us to help figure out what is causing our reactions. Without a diary, the varying time lags for the reactions can make correlating the foods with the reactions almost impossible. But if you want to make the job of figuring out which foods are problems and which ones are not, as Martha suggested, the EneroLab tests can greatly simplify the process.
missbutterfly wrote:What I'm reading here and elsewhere is confusing at best, and seems to leave rice, bananas and apple sauce as the only safe foods :(
It's not quite that bad. You can download a list of food guidelines at the following link:Download diet guidelines
Unless you make the necessary diet changes in time to allow your intestines to heal, yes, the symptoms will probably return when the budesonide treatment is ended. But as Martha pointed out, the treatment program that your doctor prescribed is way too short to be very helpful anyway. It should be at least 5 to 6 times that long, or longer, in order to be effective.missbutterfly wrote:Will it come back when I'm done with the medication?
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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missbutterfly
- Posts: 15
- Joined: Tue Jun 28, 2016 8:19 pm
Ugh... disappointed to hear that 1) apparently my doctor doesn't know what he's doing and 2) I would have to be on budesonide for that long. I have to figure out what I'm going to do. I'd rather not take a steroid for so long (especially such an expensive one).
Thanks everyone for the wisdom and guidance -- I truly appreciate it.
P.S. how is everyone with caffeine? My only vice is 1 cup of coffee a day (lactose free milk now).
Thanks everyone for the wisdom and guidance -- I truly appreciate it.
P.S. how is everyone with caffeine? My only vice is 1 cup of coffee a day (lactose free milk now).
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missbutterfly
- Posts: 15
- Joined: Tue Jun 28, 2016 8:19 pm
Please don't feel like the Lone Ranger because there are very, very few physicians in this country who truly understand how to properly treat MC.
For most of us, if coffee didn't send us running to the bathroom before we developed MC, then it usually doesn't make much difference after we have MC. If it acted as a laxative before we developed MC, then it will continue to act as a laxative.
Please be aware that most of us who are sensitive to dairy products cannot tolerate lactose free milk. It's the casein in milk that causes our immune system to produce antibodies, not the lactose. We cannot digest lactose properly when our intestines are inflamed, but lactose does not trigger the production of antibodies. Lactose is a sugar — all immune system reactions are caused by proteins (with a single exception, known as Alpha-Gal). Most of us have to use Coconut Milk, Cashew Milk, Almond Milk, Rice Milk, or sugar in our coffee, or drink it black, because all of the so-called "Non-Dairy Creamers" contain casein, despite their name.
Most members here order the combination of the A1 Panel plus the C1 Panel from EnteroLab. If you cannot justify the cost of both panels, the A1 panel is the most important because it tests for gluten, casein, soy, and egg antibodies.
Tex
For most of us, if coffee didn't send us running to the bathroom before we developed MC, then it usually doesn't make much difference after we have MC. If it acted as a laxative before we developed MC, then it will continue to act as a laxative.
Please be aware that most of us who are sensitive to dairy products cannot tolerate lactose free milk. It's the casein in milk that causes our immune system to produce antibodies, not the lactose. We cannot digest lactose properly when our intestines are inflamed, but lactose does not trigger the production of antibodies. Lactose is a sugar — all immune system reactions are caused by proteins (with a single exception, known as Alpha-Gal). Most of us have to use Coconut Milk, Cashew Milk, Almond Milk, Rice Milk, or sugar in our coffee, or drink it black, because all of the so-called "Non-Dairy Creamers" contain casein, despite their name.
Most members here order the combination of the A1 Panel plus the C1 Panel from EnteroLab. If you cannot justify the cost of both panels, the A1 panel is the most important because it tests for gluten, casein, soy, and egg antibodies.
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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missbutterfly
- Posts: 15
- Joined: Tue Jun 28, 2016 8:19 pm
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome to the group....
Re coffee, I do ok with freshly ground beans, and make coffee with stovetop coffee maker.
Some instant coffees can have gluten and other ingredients.
With MC and wanting to avoid dairy, I transitioned to black coffee.
Life with MC can be a tough gig for some, as you have experienced not many practitioners are knowledgeable in good management plans.
Once you do some reading here, it can be overwhelming, and you may wonder about all the suggested changes. What you learn over time is that diet/lifestyle changes is the best way to optimise wellness and minimise symptoms. This can be tough to embrace....
Check out the guidelines for recovery section, we have put eating plan information and other resources in there to help you come up with a good MC management plan.
Re coffee, I do ok with freshly ground beans, and make coffee with stovetop coffee maker.
Some instant coffees can have gluten and other ingredients.
With MC and wanting to avoid dairy, I transitioned to black coffee.
Life with MC can be a tough gig for some, as you have experienced not many practitioners are knowledgeable in good management plans.
Once you do some reading here, it can be overwhelming, and you may wonder about all the suggested changes. What you learn over time is that diet/lifestyle changes is the best way to optimise wellness and minimise symptoms. This can be tough to embrace....
Check out the guidelines for recovery section, we have put eating plan information and other resources in there to help you come up with a good MC management plan.
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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missbutterfly
- Posts: 15
- Joined: Tue Jun 28, 2016 8:19 pm
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missbutterfly
- Posts: 15
- Joined: Tue Jun 28, 2016 8:19 pm
Normally that shouldn't be a problem with less than a year of use unless you happen to be abnormally sensitive to budesonide.
Tex
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.