While i was on Entocort i was beginning to branch out beyond the bananas, chicken, and rice, adding a few things - still no dairy, no soy, and nothing really bad like tomatoes or any insoluble fiber, and tho i did eat a couple of peaches because i couldn't imagine a summer going by without them, basically NO fruit except bananas and no veggies except zucchini and green beans. Yet, when i quit the Entocort, everything started back up again. So, i'm not understanding the mechanism. Does the Entocort just mask the symptoms while it's trying to heal things? When you wean off of Entocort should you go back to strictly only the basics for a while and assume you still need to heal to the extent that Entocort may have hidden the symptoms? Or, does it mean that even tho they didn't cause a problem on Entocort, i may still be sensitive to those foods? And yet another quandry - it seems that NOT eating at least a little of the foods that i've been avoiding for 5 months now, will make me even more sensitive to them so that the longer i avoid them, the harder it will be to tolerate them in the long run - ???? And, i'm getting really worried about nutrition - how many months can i depend on supplements to do the job of "real" food when i'm not eating fruits and vegetables? Just doesn't seem that my overwhelmingly predominate starch diet can be that good for me...???
Any helpful hints out there....
Question about diet after Entocort
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Question about diet after Entocort
The Lord never said it would be easy - He only said it would be worth it!
Hi Carole,
This disease creates quite a dilemma for most of us, because of what it does to/with our immune system. You are correct in noticing that we become more sensitive to our intolerances, as time goes on, but I suspect that we continue to become more sensitive, whether we avoid those foods or not, regardless of whether our clinical symptoms indicate that trend or not. The immune system naturally becomes more sensitive to "allergens" with each additional exposure, and this is true whether it is a true allergic reaction, based on histamine release, or an autoimmune reaction, caused by an ingested food intolerance.
The reactions seem to be worse, if we are exposed to an "allergen" after avoiding it for a period of time, and I think that's probably due to a "shock" effect, caused by the sudden extreme escalation in antibody production, when a new reaction begins. Any sudden change in body chemistry, of that significance, can't help but have an effect. After a reaction has been going on for a while, antibody production is steady, so a short-term avoidance will make little to no difference in how we perceive the effect, because the additional antibody production caused by an exposure will be insignificant, compared with the residual level of antibodies, already in the blood. The immune system continues to produce antibodies for some time after an exposure, and the length of time depends on the particular allergen. Gluten, for example, will cause high levels of antibodies in the blood, for several weeks after an exposure. Significant levels of gluten antibodies can still be detected in the intestines, for over a year, after the last exposure to gluten. Plus, we are all different in how we react, and some of us probably produce antibodies longer than others. Anyway, this long persistence of gluten antibody production by the immune system, may be why many of us do not notice any reaction to gluten, if only short-term avoidance is practiced. Some of us may have to avoid it for a very long period of time, to allow the serum antibody level to decline, before we will notice an obvious reaction to an exposure, simply because antibody levels stay high for such a long period - it confounds our ability to detect changes in symptoms.
Yes, Entocort, (budesonide), only masks the problem, (neither budesonide, nor any of the other corticosteroids, can completely control inflammation - they only reduce it). Budesonide reduces inflammation, and so it will prevent reactions to existing inflammation, (by suppressing the inflammation), as long as a sufficient quantity of budesonide remains available in the body. The underlying cause of the inflammation is not affected, however, so once enough of the budesonide exits the body, if the cause of the inflammation has not been removed, (such as food intolerances), then the inflammation will begin to increase again, and clinical symptoms will increase. That can also happen if the budesonide is discontinued before the intestines have had sufficient time to heal from the damage caused by the intolerances, in the first place. As obvious as all of this is, most GI docs do not comprehend it, and proceed as if it doesn't exist.
If you are intolerant of gluten, casein, soy, or whatever, you will probably be sensitive to those proteins for the rest of your life, unless something happens to change your genes. Problems due to fiber, sugars, (carbs), etc., are usually only temporary, in most cases, (with the possible exception of the sugar alcohols, and a few other items).
Supplements work, if they are in a form that can be absorbed even when a small intestine malabsorption problem exists, (because as long as you are reacting, you are probably malabsorbing - the villi of the small intestine take a while to recover).
As for helpful hints - I don't see gluten mentioned in your post, there is a very small possibility that you might not be gluten-sensitive, but the odds that you are indeed gluten sensitive, are almost overwhelming, particularly if you are dairy and soy intolerant.
Unless you can discover and remove all intolerances from your diet, Entocort is the easiest way to maintain remission.
Tex
This disease creates quite a dilemma for most of us, because of what it does to/with our immune system. You are correct in noticing that we become more sensitive to our intolerances, as time goes on, but I suspect that we continue to become more sensitive, whether we avoid those foods or not, regardless of whether our clinical symptoms indicate that trend or not. The immune system naturally becomes more sensitive to "allergens" with each additional exposure, and this is true whether it is a true allergic reaction, based on histamine release, or an autoimmune reaction, caused by an ingested food intolerance.
The reactions seem to be worse, if we are exposed to an "allergen" after avoiding it for a period of time, and I think that's probably due to a "shock" effect, caused by the sudden extreme escalation in antibody production, when a new reaction begins. Any sudden change in body chemistry, of that significance, can't help but have an effect. After a reaction has been going on for a while, antibody production is steady, so a short-term avoidance will make little to no difference in how we perceive the effect, because the additional antibody production caused by an exposure will be insignificant, compared with the residual level of antibodies, already in the blood. The immune system continues to produce antibodies for some time after an exposure, and the length of time depends on the particular allergen. Gluten, for example, will cause high levels of antibodies in the blood, for several weeks after an exposure. Significant levels of gluten antibodies can still be detected in the intestines, for over a year, after the last exposure to gluten. Plus, we are all different in how we react, and some of us probably produce antibodies longer than others. Anyway, this long persistence of gluten antibody production by the immune system, may be why many of us do not notice any reaction to gluten, if only short-term avoidance is practiced. Some of us may have to avoid it for a very long period of time, to allow the serum antibody level to decline, before we will notice an obvious reaction to an exposure, simply because antibody levels stay high for such a long period - it confounds our ability to detect changes in symptoms.
Yes, Entocort, (budesonide), only masks the problem, (neither budesonide, nor any of the other corticosteroids, can completely control inflammation - they only reduce it). Budesonide reduces inflammation, and so it will prevent reactions to existing inflammation, (by suppressing the inflammation), as long as a sufficient quantity of budesonide remains available in the body. The underlying cause of the inflammation is not affected, however, so once enough of the budesonide exits the body, if the cause of the inflammation has not been removed, (such as food intolerances), then the inflammation will begin to increase again, and clinical symptoms will increase. That can also happen if the budesonide is discontinued before the intestines have had sufficient time to heal from the damage caused by the intolerances, in the first place. As obvious as all of this is, most GI docs do not comprehend it, and proceed as if it doesn't exist.
If you are intolerant of gluten, casein, soy, or whatever, you will probably be sensitive to those proteins for the rest of your life, unless something happens to change your genes. Problems due to fiber, sugars, (carbs), etc., are usually only temporary, in most cases, (with the possible exception of the sugar alcohols, and a few other items).
Supplements work, if they are in a form that can be absorbed even when a small intestine malabsorption problem exists, (because as long as you are reacting, you are probably malabsorbing - the villi of the small intestine take a while to recover).
As for helpful hints - I don't see gluten mentioned in your post, there is a very small possibility that you might not be gluten-sensitive, but the odds that you are indeed gluten sensitive, are almost overwhelming, particularly if you are dairy and soy intolerant.
Unless you can discover and remove all intolerances from your diet, Entocort is the easiest way to maintain 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.
Yes, malabsorption is a problem in my case. Maintaining or gaining weight has been a tremendous problem despite the volume of food, and since this started i've always had floating poopies which is apparently an indicator as well. I do take liquid minerals but a pill form of mulit-vitamin, D3, b12, and amino acid. Would you suggest liquid forms of these as well?
The Lord never said it would be easy - He only said it would be worth it!
To be honest, I don't know if liquid forms of vitamins would be more absorbable, (and I don't have time to look it up, because I have to get back to work), but they certainly might be. Maybe someone else has some good information on this.
The B-12 problem, along with folic acid, (which can be a very significant one), can be solved by using a sublingual lozonge, designed to dissolve under the tongue, where it will go directly into the blood stream, and I think that some other vitamins are available in this form. D3 might be, but I'm not sure. One way to improve the D3 uptake is to take large doses, since only a small fraction will be absorbed, if malabsorption is a problem.
Tex
The B-12 problem, along with folic acid, (which can be a very significant one), can be solved by using a sublingual lozonge, designed to dissolve under the tongue, where it will go directly into the blood stream, and I think that some other vitamins are available in this form. D3 might be, but I'm not sure. One way to improve the D3 uptake is to take large doses, since only a small fraction will be absorbed, if malabsorption is a 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.
Carole,
I agree with everything Tex has said, especially with regard to the gluten avoidance. I have never noticed a reaction to eating gluten, but I still avoid it completely because gluten intolerance and this disease go hand-in-hand.
Entocort is a great medication and I support it, but if you ever want to get off of it or reduce your dosage, you'll need to eliminate all offending foods. The best way to determine additional intolerances is to reduce Entocort slowly (and/or change your diet) to the point where you have Normans somewhat regularly, but notice a reaction to foods on other days. Maintaining a food/elimination diary helps you to see patterns in your reactions. This isn't an overnight process and, as Tex wrote, most GIs don't understand the connection at all. When I was still eating a lot of my unknown intolerances, reducing the level of Entocort caused reactions much sooner than it does now that I've eliminated most of them.
You mention eating bananas. They are supposed to be safe for us MCers, but I only recently realized that they were causing me problems. Since I've eliminated them, I've gone from 2 BMs per day to just one. I mention that because there are always exceptions to every rule. On the other hand, I've been able to eat tomatoes without any problems. We are all different and that's what makes this so hard to figure out.
I also think that anyone who is intolerant to soy should be suspicious of all legumes and test to see if they are a problem. It only took a couple of days for me to see an improvement once I eliminated green beans from my diet.
Gloria
I agree with everything Tex has said, especially with regard to the gluten avoidance. I have never noticed a reaction to eating gluten, but I still avoid it completely because gluten intolerance and this disease go hand-in-hand.
Entocort is a great medication and I support it, but if you ever want to get off of it or reduce your dosage, you'll need to eliminate all offending foods. The best way to determine additional intolerances is to reduce Entocort slowly (and/or change your diet) to the point where you have Normans somewhat regularly, but notice a reaction to foods on other days. Maintaining a food/elimination diary helps you to see patterns in your reactions. This isn't an overnight process and, as Tex wrote, most GIs don't understand the connection at all. When I was still eating a lot of my unknown intolerances, reducing the level of Entocort caused reactions much sooner than it does now that I've eliminated most of them.
You mention eating bananas. They are supposed to be safe for us MCers, but I only recently realized that they were causing me problems. Since I've eliminated them, I've gone from 2 BMs per day to just one. I mention that because there are always exceptions to every rule. On the other hand, I've been able to eat tomatoes without any problems. We are all different and that's what makes this so hard to figure out.
I also think that anyone who is intolerant to soy should be suspicious of all legumes and test to see if they are a problem. It only took a couple of days for me to see an improvement once I eliminated green beans from my diet.
Gloria
You never know what you can do until you have to do it.
Just want to say thanks for posting your question. I'm considering Entocort as I seem to be worsening in my symptoms despite increasing eliminations. Part of the reason I've not tried Entocort yet is my fear of feeling so much better, but knowing I'll probably have to get off of it at some time. I'd almost rather not know how much better I could feel.
Also, Gloria, thanks for mentioning the legumes and especially, green beans. I felt horrible Tuesday, after having a big mound of green beans with Monday's dinner. Reading your post reminded me also of a time last year when I was pregnant, and nothing tasted good one day. I had a huge plate of green beans, and had 2 very bad days afterwards. Drat. I really like green beans with lemon & garlic :( Were you tested for legumes or did you discover it yourself?
Also, Gloria, thanks for mentioning the legumes and especially, green beans. I felt horrible Tuesday, after having a big mound of green beans with Monday's dinner. Reading your post reminded me also of a time last year when I was pregnant, and nothing tasted good one day. I had a huge plate of green beans, and had 2 very bad days afterwards. Drat. I really like green beans with lemon & garlic :( Were you tested for legumes or did you discover it yourself?
Kimberley
MC diagnosed 2004
Suspected Eosinophilic Gastroenteritis...??
Meds/Supplements: Probiotics, Prenatal Vitamins, Vitamin D3.
MC diagnosed 2004
Suspected Eosinophilic Gastroenteritis...??
Meds/Supplements: Probiotics, Prenatal Vitamins, Vitamin D3.
Gloria and Tex,
Thanks for helpful info and suggestions. There is so much learning that goes on with this - just when i think i have something figured out, i figure out that i really don't!
I'm giving some thought to staying at this dosage of Entocort (6mg) and using this time to experiment with foods and hopefully to gain some more weight before i try weaning off again. I need to have some cushion (in more ways than one) in my weight - i don't feel healthy being this thin (nearly 5'11" and 125lb). I'm afraid of getting sick and not having any reserves. Just this past 2 weeks i've been able to get back to the gym regularly to do water exercises and am beginning to feel a lot stronger again.
You're right about legumes - i haven't been able to eat beans of any kind for years now so maybe i need to rethink the green-beans (never think of them as "beans"). Soy is a new intolerance for me - never bothered me before. And yes, i do feel better when i'm off of gluten. QUESTION: since it doesn't show in testing as being a problem, does that mean that if a have a gluten issue it is an intolerance that may improve as my condition improves? in other words, is it reasonable to think that i could possibly get to the point of being able to eat gluten products again after the inflammation heals?
ANOTHER QUESTION: As i branch out adding foods to my rice and meat diet, would it be best to stick with trying only soluble fiber foods?
Thanks for helpful info and suggestions. There is so much learning that goes on with this - just when i think i have something figured out, i figure out that i really don't!
I'm giving some thought to staying at this dosage of Entocort (6mg) and using this time to experiment with foods and hopefully to gain some more weight before i try weaning off again. I need to have some cushion (in more ways than one) in my weight - i don't feel healthy being this thin (nearly 5'11" and 125lb). I'm afraid of getting sick and not having any reserves. Just this past 2 weeks i've been able to get back to the gym regularly to do water exercises and am beginning to feel a lot stronger again.
You're right about legumes - i haven't been able to eat beans of any kind for years now so maybe i need to rethink the green-beans (never think of them as "beans"). Soy is a new intolerance for me - never bothered me before. And yes, i do feel better when i'm off of gluten. QUESTION: since it doesn't show in testing as being a problem, does that mean that if a have a gluten issue it is an intolerance that may improve as my condition improves? in other words, is it reasonable to think that i could possibly get to the point of being able to eat gluten products again after the inflammation heals?
ANOTHER QUESTION: As i branch out adding foods to my rice and meat diet, would it be best to stick with trying only soluble fiber foods?
That was always one of my big concerns, too, back when I was reacting.Carole wrote:I'm afraid of getting sick and not having any reserves.
I don't see any test result data listed for you in our "collection", so I assume that the negative test result you are referring to, was a blood test, and/or a small intestinal biopsy. Am I correct? If so, unfortunately, the blood tests used to detect celiac disease, are not sensitive enough to detect the type of gluten sensitivity that we have. The only test that is currently sensitive enough to detect sub-celiac level gluten sensitivity, is the stool tests offered by Enterolab, in Dallas. Also, damage to the villi of the small intestine is rarely detectable, unless fully-developed celiac disease is present.
I'm sorry to say that unless something happens to change the appropriate genes, gluten sensitivity is virtually always permanent, once the genes are triggered.
To be honest, I'm not sure, but I suspect that would probably be best. The main thing is to remember to keep fiber at a minimum, unless you are sure that you can handle increased amounts without unduly irritating your GI tract.Carole wrote:ANOTHER QUESTION: As i branch out adding foods to my rice and meat diet, would it be best to stick with trying only soluble fiber foods?
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.
Kimberley,
If you should decide to try Entocort, and you are still breastfeeding at the time, be sure to mention that to your doctor, because budesonide is transmitted in human milk, and the manufacturer advises against taking Entocort while breastfeeding. Obviously, only a relatively small percentage is transmitted, but since this phenomenon is largely unresearched, it should be discussed with your doctor.
http://www.drugs.com/pregnancy/budesonide.html
Note that research trials have been conducted with pregnant women who were using inhaled budesonide, and no teratogenic effects were noted, (teratogenic means of, or relating to, substances, or agents that can interfere with normal embryonic development). However, similar trials have not been conducted with oral budesonide, nor have relevant trials with oral budesonide been conducted, for women who were breastfeeding.
Tex
If you should decide to try Entocort, and you are still breastfeeding at the time, be sure to mention that to your doctor, because budesonide is transmitted in human milk, and the manufacturer advises against taking Entocort while breastfeeding. Obviously, only a relatively small percentage is transmitted, but since this phenomenon is largely unresearched, it should be discussed with your doctor.
http://www.drugs.com/pregnancy/budesonide.html
Note that research trials have been conducted with pregnant women who were using inhaled budesonide, and no teratogenic effects were noted, (teratogenic means of, or relating to, substances, or agents that can interfere with normal embryonic development). However, similar trials have not been conducted with oral budesonide, nor have relevant trials with oral budesonide been conducted, for women who were breastfeeding.
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.
Kimberly,
I didn't take any test for the green beans; I just noticed a pattern in my food diary. I also noticed that I reacted to peanut butter and made the connection to all legumes after reacting to baked beans. I no longer eat any of them. Yes, green beans were such an easy vegetable to fix. I can't say I was crazy about them, but I do miss their convenience.
Carole,
I agree with Tex about fiber. You're best staying away from as much fiber as possible while you're healing. That said, I've noticed that I can eat cooked broccoli, cauliflower and asparagus without having any reactions other than gas. I think that once they're cooked, they're easy on the gut.
Gloria
I didn't take any test for the green beans; I just noticed a pattern in my food diary. I also noticed that I reacted to peanut butter and made the connection to all legumes after reacting to baked beans. I no longer eat any of them. Yes, green beans were such an easy vegetable to fix. I can't say I was crazy about them, but I do miss their convenience.
Carole,
I agree with Tex about fiber. You're best staying away from as much fiber as possible while you're healing. That said, I've noticed that I can eat cooked broccoli, cauliflower and asparagus without having any reactions other than gas. I think that once they're cooked, they're easy on the gut.
Gloria
You never know what you can do until you have to do it.
