Hi everyone, I'm a new member but have been browsing the boards for a couple of months. I can't tell you what a great resource this has already been for me! Quick background: I've been symptomatic since fall 2009, was diagnosed fall 2010 and put on Entocort. The Entocort worked great and I weaned off of it in spring 2011 and was (I thought) in remission for a few months. We moved and I started a new job in August 2011 and symptoms came back, so I started back on the Entocort, which just hasn't worked quite as well this time around. I have been gf/df since Jan. 1 2012 (I am regretful that I didn't take advantage of the symptom-free period last year to go gluten-free.)
SO, here's my problem. I tried to cut back from 9 mg to 6 mg of the Entocort last week, and watery D has arrived! I immediately went back up to 9 mg but have yet to have any relief. It seems I'm in a full-on flare-up just by cutting back my dosage a tiny little bit. Needless to say, I'm discouraged, especially considering I thought I'd made the right diet choices to get on a path for healing. My symptoms are as bad as they were when I wasn't on Entocort. Has anyone experienced something like this? Should I stay on the Entocort and give it a shot to eventually kick in? Also, does it seem obvious to everyone but me that I have another food intolerance I'm not addressing? I'm wondering now what my next steps should be.
Also, and perhaps most urgently, does anyone have any advice on how I can end this flare-up? I have taken one immodium a day for two days to no avail. Is it Ok to increase the dosage on that? Other ideas are welcome.
I'm sure I'm not writing anything that's new to any of you, so if there's a thread that addresses this kind of thing, please refer me! Finally, I'm in the Raleigh/Durham/Chapel Hill, N.C., area. Nobody posted a recommended doc to the board in this area that I can find, but if any of you do have any experience with a practitioner you like in this area, please let me know. Thanks for any insight anyone might have.
New Member with Questions
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Welcome to our internet family. Your experience with Entocort is somewhat common. Many of us find that it works great the first time, but each succeeding occasion that we use it, it seems to be less effective. The body apparently builds up a tolerance for it, and this happens faster for some of us, than for others. Unfortunately, in your case, it apparently happened rather quickly. Still if helps at all, it's probably worth taking. Of course, if it provides no benefits at all, it may be doing more harm than good. If I read your post correctly, you've been taking it since August, with limited success.
This is just my opinion, and I'm not a doctor, so keep that in mind, but based on our accumulated experience among the members of this board, Entocort, in combination with the GF, DF diet, should normally bring remission within 8 weeks, (or less), so it certainly hasn't done that. That strongly suggests that you have one or more additional food sensitivities, preventing remission, (and it also suggests that Entocort is providing little benefit). The most likely suspect food is soy, since about half of us are sensitive to soy. Beyond that, the selections become more difficult, and more arbitrary, so stool tests at EnteroLab might be a big help, if you can afford them, and if following those results doesn't bring remission, then the mediator release testing/LEAP program would probably help to pinpoint the food-sensitivities that are less common, and therefore more difficult to track down.
You can safely take up to 8 Imodium per day, (it's a relatively safe medication for most of us), but let your body be your guide - if constipation becomes a problem, you're obviously taking too much.
Also, please be aware that gluten, (and casein), are found in many, many products, and cross-contamination with gluten is a very common problem. For most of us, all it takes is a trace amount, (such as a tiny crumb that falls off a crust of a slice of bread, for example), to cause a reaction. We have found that if we have normal products in our kitchen, that contain gluten, it is very difficult to prevent cross-contamination. If wheat flour is present in the kitchen, preventing cross-contamination is almost impossible.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. Your experience with Entocort is somewhat common. Many of us find that it works great the first time, but each succeeding occasion that we use it, it seems to be less effective. The body apparently builds up a tolerance for it, and this happens faster for some of us, than for others. Unfortunately, in your case, it apparently happened rather quickly. Still if helps at all, it's probably worth taking. Of course, if it provides no benefits at all, it may be doing more harm than good. If I read your post correctly, you've been taking it since August, with limited success.
This is just my opinion, and I'm not a doctor, so keep that in mind, but based on our accumulated experience among the members of this board, Entocort, in combination with the GF, DF diet, should normally bring remission within 8 weeks, (or less), so it certainly hasn't done that. That strongly suggests that you have one or more additional food sensitivities, preventing remission, (and it also suggests that Entocort is providing little benefit). The most likely suspect food is soy, since about half of us are sensitive to soy. Beyond that, the selections become more difficult, and more arbitrary, so stool tests at EnteroLab might be a big help, if you can afford them, and if following those results doesn't bring remission, then the mediator release testing/LEAP program would probably help to pinpoint the food-sensitivities that are less common, and therefore more difficult to track down.
You can safely take up to 8 Imodium per day, (it's a relatively safe medication for most of us), but let your body be your guide - if constipation becomes a problem, you're obviously taking too much.
Also, please be aware that gluten, (and casein), are found in many, many products, and cross-contamination with gluten is a very common problem. For most of us, all it takes is a trace amount, (such as a tiny crumb that falls off a crust of a slice of bread, for example), to cause a reaction. We have found that if we have normal products in our kitchen, that contain gluten, it is very difficult to prevent cross-contamination. If wheat flour is present in the kitchen, preventing cross-contamination is almost impossible.
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.
That's really helpful, Tex, and thanks for the thoughtful reply. To clarify, since August the Entocort has been helping but not to the extent it did the first round. Since I reduced the dosage last week, however, it's as if I'm not even on it, even after I kicked the dosage back up. We'll see if it kicks in here soon. Regardless, your point about the 8 week timeline to remission given the GF/DF diet and the Entocort is duly noted. Clearly there is still a problem. Also, it is entirely possible cross-contamination is an issue, given your last point. I'm trying to be very careful, but I have a two-year-old and a husband who are not gluten-free, and I'm cooking for both of them. There are plenty of crumbs around, I feel certain. I am picking Cheerios up everywhere! And I still do have a container of wheat flour on the counter (which I will promptly remove this evening!).
I think I will try to remove soy and see where that gets me, but I'm very tempted to go ahead and do the Enterolab testing.
Thanks again.
Allison
I think I will try to remove soy and see where that gets me, but I'm very tempted to go ahead and do the Enterolab testing.
Thanks again.
Allison
Welcome Allison,
Regarding cross-contamination, many here are weary of the pots and pans, spatulas, etc. that are used in the kitchen. Imagine how much gluten sticks to spoons and pots after you boil pasta for your family? I declared a dedicated pasta pot for regular pasta, so the rest of the pots would be safe. I was lucky to have my husband try the GF diet recently. Now we both cook GF, and the kids are doing well on a low gluten diet (they get school lunch and non GF snacks). I'm a little less careful about dairy and soy cross-contamination (butter is one that I don't totally avoid now that I'm feeling better, since it's low in casein, mostly fat).
Something else you might try is Pepto Bismol tablets (not chewables). It helps me when I flare, but it's a very individual thing.
Regarding cross-contamination, many here are weary of the pots and pans, spatulas, etc. that are used in the kitchen. Imagine how much gluten sticks to spoons and pots after you boil pasta for your family? I declared a dedicated pasta pot for regular pasta, so the rest of the pots would be safe. I was lucky to have my husband try the GF diet recently. Now we both cook GF, and the kids are doing well on a low gluten diet (they get school lunch and non GF snacks). I'm a little less careful about dairy and soy cross-contamination (butter is one that I don't totally avoid now that I'm feeling better, since it's low in casein, mostly fat).
Something else you might try is Pepto Bismol tablets (not chewables). It helps me when I flare, but it's a very individual thing.
testing
Hi Allison.
I am also pretty new to this site and at the beginning of it all, I thought I couldn't afford the Enterolab testing. After I started flaring again though, I thought to myself "how could I NOT afford to do these tests?". I just started Entocort a couple weeks ago and it is working like a champ. I may be stepping down to 6mg soon. I am GF/DF also while I am waiting for test results. I am suspecting that I might have a problem with night shades (potatoes, tomato,peppers....etc.) so I am also laying off those things until I know for sure ( also salad and beans which are irritants). I don't know if you have checked out Enterolab's web site yet, but if you haven't- you might want to. Reading all of the testimonies, made me want to do it right way! I chose the combination A and C tests and also yeast. Yes, it's expensive, but I think it will be so worth it to know for sure what I should stay away from.
I'm so sorry you are having such a bad flare and I wish you luck in your search for relief.
Leah
I am also pretty new to this site and at the beginning of it all, I thought I couldn't afford the Enterolab testing. After I started flaring again though, I thought to myself "how could I NOT afford to do these tests?". I just started Entocort a couple weeks ago and it is working like a champ. I may be stepping down to 6mg soon. I am GF/DF also while I am waiting for test results. I am suspecting that I might have a problem with night shades (potatoes, tomato,peppers....etc.) so I am also laying off those things until I know for sure ( also salad and beans which are irritants). I don't know if you have checked out Enterolab's web site yet, but if you haven't- you might want to. Reading all of the testimonies, made me want to do it right way! I chose the combination A and C tests and also yeast. Yes, it's expensive, but I think it will be so worth it to know for sure what I should stay away from.
I'm so sorry you are having such a bad flare and I wish you luck in your search for relief.
Leah
Zizzle, Thanks for the kitchen tips. I will set aside some cookware for pasta for sure. I've also seen a baking sheet liner I was thinking about getting for me. My husband eats whatever I make him, but he also makes sandwiches for lunch on "real" bread, so I know that will be a hard habit to break. As for the 2 yo...I'm just trying to get him to eat anything at all! Also, good to hear about the Pepto tablets. I have tried the chewables with little relief. I'll go out and get these.
Leah, when you put the enterolab question like that, it's hard to argue. I'm going to proceed, I think. A and C I understand, but can you tell me why you got tested for yeast?
Allison
Leah, when you put the enterolab question like that, it's hard to argue. I'm going to proceed, I think. A and C I understand, but can you tell me why you got tested for yeast?
Allison
yeast
Hi Allison
I guess I really wanted to cover all my bases. I figured if I want to bake GF bread or even eat the Gluten free bread on the market ( Udi's), I'd need to be sure the yeast wasn't the culprit. I guess if you stay away from yeast products all together, it's not necessary. However, now that I am reading every single label, I'm realizing that all the baked goods ( and pancake like mixes) have potato starch/flour in them and if it turns out that I can't do potatoes..... the yeast test would have been a waste of money
Keep us posted. Hope you feel better soon
Leah
I guess I really wanted to cover all my bases. I figured if I want to bake GF bread or even eat the Gluten free bread on the market ( Udi's), I'd need to be sure the yeast wasn't the culprit. I guess if you stay away from yeast products all together, it's not necessary. However, now that I am reading every single label, I'm realizing that all the baked goods ( and pancake like mixes) have potato starch/flour in them and if it turns out that I can't do potatoes..... the yeast test would have been a waste of money
Keep us posted. Hope you feel better soon
Leah
Hi Allison,
My mother has celiac disease and has been GF for about 25 years and in the big scheme of things it is not that big of a deal. My Dad does not like the GF bread or GF pasta so she buys separate breads for each of them. She also has two separate sets of crackers..i.e. Ritz for him and GF crackers for her. She also makes separate pasta batches. Other than that my Dad eats GF but he is just not aware of it. When she makes pancakes everyone gets GF pancakes etc.
I totally agree with Zizzle on the pasta pot and spring for a separate pasta strainer too. YOu can probably get one for under $3.00.
Hope you feel better, Brandy
My mother has celiac disease and has been GF for about 25 years and in the big scheme of things it is not that big of a deal. My Dad does not like the GF bread or GF pasta so she buys separate breads for each of them. She also has two separate sets of crackers..i.e. Ritz for him and GF crackers for her. She also makes separate pasta batches. Other than that my Dad eats GF but he is just not aware of it. When she makes pancakes everyone gets GF pancakes etc.
I totally agree with Zizzle on the pasta pot and spring for a separate pasta strainer too. YOu can probably get one for under $3.00.
Hope you feel better, Brandy
WELCOME, ALLISON! 
I have gone off and on Entocort for about 4 1/2 years. I responded pretty quickly the first few times I went back on it - within a few days. The past couple of years have been much different, however. I had to give up additional foods to see an improvement, but I eventually returned to having normal BMs. Last summer, like you, I deteriorated after being off of it, and reluctantly went back on a full dosage of 9 mg/day. I still am not having normal BMs after being on it for 6 months. I've eliminated additional foods, but apparently not enough. I continue to take it because it has helped reduce the urgency, one of the most frustrating aspects of MC. On the days that I have more severe and frequent symptoms, I take an Imodium like you. That helps me quite a bit.
I always suggest reducing the dosage of Entocort very slowly. Reducing one pill every other day or two seems to keep enough in our system without jolting it. Plus, it gives us more time to determine if there will be a problem with the lower dose.
I hope you can get the Enterolab testing. It was very helpful to me and many others here.
Gloria
I have gone off and on Entocort for about 4 1/2 years. I responded pretty quickly the first few times I went back on it - within a few days. The past couple of years have been much different, however. I had to give up additional foods to see an improvement, but I eventually returned to having normal BMs. Last summer, like you, I deteriorated after being off of it, and reluctantly went back on a full dosage of 9 mg/day. I still am not having normal BMs after being on it for 6 months. I've eliminated additional foods, but apparently not enough. I continue to take it because it has helped reduce the urgency, one of the most frustrating aspects of MC. On the days that I have more severe and frequent symptoms, I take an Imodium like you. That helps me quite a bit.
I always suggest reducing the dosage of Entocort very slowly. Reducing one pill every other day or two seems to keep enough in our system without jolting it. Plus, it gives us more time to determine if there will be a problem with the lower dose.
I hope you can get the Enterolab testing. It was very helpful to me and many others here.
Gloria
You never know what you can do until you have to do it.
Leah, That makes sense, regarding the yeast, and I hope it doesn't turn out you have a problem with potatoes! When do you expect your results to come back? I look forward to learning about the results.
Brandy, thanks for the GF tips. I've already made chocolate chip cookies with almond flour, and my husband loved them, so I can see us sharing a lot of the same foods. For those things we don't share, we'll just use separate tools.
And, thanks, Gloria for the welcome and for sharing your experience. If I can ever get back to something close to normal, I will not taper so abruptly next time. That's smart to taper more gradually. So, it has been common for you to not "recover" within a couple of days then after going on Entocort or increasing your dosage? I'm getting frustrated!
I thought I was getting better, but I'm clearly not there yet! I had a weird episode yesterday afternoon ... no GI issues ... but almost like extreme low blood sugar, or low blood pressure, or something. I hadn't eaten much all day because I was in a day-long training session, and around 5 p.m. I got weak and visibly shaky, and started sweating. I immediately grabbed a box of gluten free chocolate cookies (Lucky! I had stopped in TJ Maxx on the way home, and they had a whole section of GF stuff), and that seemed to help. Of course, now, my GI symptoms are back with a vengeance this morning. If I have a soy allergy, the cookies did have soy in the ingredients, so maybe that was the problem. At any rate, it was sort of scary and is making me wonder if I shouldn't get a check-up and some blood work done to make sure I don't have any major deficiencies.
It's been a week. TGIF!
Brandy, thanks for the GF tips. I've already made chocolate chip cookies with almond flour, and my husband loved them, so I can see us sharing a lot of the same foods. For those things we don't share, we'll just use separate tools.
And, thanks, Gloria for the welcome and for sharing your experience. If I can ever get back to something close to normal, I will not taper so abruptly next time. That's smart to taper more gradually. So, it has been common for you to not "recover" within a couple of days then after going on Entocort or increasing your dosage? I'm getting frustrated!
I thought I was getting better, but I'm clearly not there yet! I had a weird episode yesterday afternoon ... no GI issues ... but almost like extreme low blood sugar, or low blood pressure, or something. I hadn't eaten much all day because I was in a day-long training session, and around 5 p.m. I got weak and visibly shaky, and started sweating. I immediately grabbed a box of gluten free chocolate cookies (Lucky! I had stopped in TJ Maxx on the way home, and they had a whole section of GF stuff), and that seemed to help. Of course, now, my GI symptoms are back with a vengeance this morning. If I have a soy allergy, the cookies did have soy in the ingredients, so maybe that was the problem. At any rate, it was sort of scary and is making me wonder if I shouldn't get a check-up and some blood work done to make sure I don't have any major deficiencies.
It's been a week. TGIF!
low blood sugar
Hi Allison.
Scary, huh? You probably had low blood sugar or your blood pressure dropped too much because you were sitting all day. Both of those has happened to me. I usually get kind of shaky too ( like having too much caffeine). I hope nothing is seriously wrong.
Hey, did you check to make sure the cookies don't have dairy in them? If so, could be either soy or egg. Sorry you have had a flare up. I recently ( 2 days ago) tried to lower my dose of Entocort, and went backward also. Bummer. Back up to three a day. I won't be getting my results from Entoerlab for three weeks :( I will let you know what it says. Take Care
Leah
Scary, huh? You probably had low blood sugar or your blood pressure dropped too much because you were sitting all day. Both of those has happened to me. I usually get kind of shaky too ( like having too much caffeine). I hope nothing is seriously wrong.
Hey, did you check to make sure the cookies don't have dairy in them? If so, could be either soy or egg. Sorry you have had a flare up. I recently ( 2 days ago) tried to lower my dose of Entocort, and went backward also. Bummer. Back up to three a day. I won't be getting my results from Entoerlab for three weeks :( I will let you know what it says. Take Care
Leah
Allison,
As Leah suggested, it's a pretty safe bet that your body was just telling you that you shouldn't stay active all day without eating something once in a while. This disease, (and the D that's associated with it), impose major energy demands on our body, and many of us find that we do best with small, frequent meals, (or snacks), rather than just 2 or 3 bigger meals each day.
Another possibility is gastroparesis. As you are probably aware, gastroparesis, (slow or delayed stomach emptying), can cause hypoglycemia symptoms, and gastroparesis is often associated with diabetes. However, please be aware that many of us, (including myself), have had gastroparesis/hypoglycemia episodes associated with MC, even though we are not diabetic.
It's certainly a good idea to do a fasting blood test, especially if you haven't had one in a while, to make sure that diabetes, (or something else), is not indicated, but as long as your blood glucose levels, etc., are normal, on a complete blood test, please don't be stampeded into believing that you have diabetes, simply on the basis of episodes of gastroparesis and/or hyplglycemia, because others with MC have had this same experience. In fact, I had an episode late in the day, about a week ago, (and my last CBC results were fine, just a few months ago), so I just did what you did, and ate a little snack, and resolved the symptoms. Either such things are connected with MC, or they're common in the general population, and we just don't hear about them.
Tex
As Leah suggested, it's a pretty safe bet that your body was just telling you that you shouldn't stay active all day without eating something once in a while. This disease, (and the D that's associated with it), impose major energy demands on our body, and many of us find that we do best with small, frequent meals, (or snacks), rather than just 2 or 3 bigger meals each day.
Another possibility is gastroparesis. As you are probably aware, gastroparesis, (slow or delayed stomach emptying), can cause hypoglycemia symptoms, and gastroparesis is often associated with diabetes. However, please be aware that many of us, (including myself), have had gastroparesis/hypoglycemia episodes associated with MC, even though we are not diabetic.
It's certainly a good idea to do a fasting blood test, especially if you haven't had one in a while, to make sure that diabetes, (or something else), is not indicated, but as long as your blood glucose levels, etc., are normal, on a complete blood test, please don't be stampeded into believing that you have diabetes, simply on the basis of episodes of gastroparesis and/or hyplglycemia, because others with MC have had this same experience. In fact, I had an episode late in the day, about a week ago, (and my last CBC results were fine, just a few months ago), so I just did what you did, and ate a little snack, and resolved the symptoms. Either such things are connected with MC, or they're common in the general population, and we just don't hear about them.
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.
Thanks, Leah and Tex. Reassuring. I will still get a blood test to make sure everything's OK, as I'm overdue a check-up anyway, but it does sound pretty reasonable to me that it was a little hypoglycemia or something of that nature. Leah, the cookies were dairy free but did have soy, and eggs, too. Sorry your taper to 6 mg. didn't work but hopefully you can try again soon with better results.
The moral support provided this week has been much needed and appreciated!
The moral support provided this week has been much needed and appreciated!