Hi! New to this group. I'm so glad I found it.
I was diagnosed 4 1/2 years ago and tried Pepto and Imodium without any relief. Dr put me on Entercort 9 mg. I had almost immediate relief. The years have went by and my symptoms started to show back up, but not really so much that it impacted my life. Two months ago I started having severe symptoms and having At least 10 watery stools, very dark in color (I describe as muddy water). The bowel movements (water) comes with cramping and my stomach makes strange noises. So basically I am back to where I was prior to getting diagnosed with CC but this time while on the medication!!! I'm feeling frustrated and worried. I started a GF diet 4 days ago to see if that is the cause. The quantity of my diarrhea has reduced a few times, my stool is lighter in color but besides that, still pain, strange noises and explosive diarrhea. I am worried about going anywhere that I am not close to a bathroom and it is effecting my quality of life again.
I guess my first question for this group is, how long did it take you on a GF diet for the diarrhea to stop and have a solid poop without the urgency to go immediately?
If I don't see results within a certain amount of time, what's next? I know I need to contact my GI doctor but I wanted to be able to show that I have made steps to relieve the issues before I went in and he told me to go GF.
I'm only 35 and don't want to live the rest of my life feeling like this and worrying how far away a restroom is!
Thanks for your help!
GF for 4 days- how long until see improvements?
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
P.S. I have high inflammation levels show up in blood work but they have no idea what is causing my most to attack itself... Haven't found a doctor to take me too seriously yet.
I've had massage therapist, chiropractors, etc say my entire body appears to have inflammation. I have back and shoulder problems and I wonder if it is related to CC.
I've had massage therapist, chiropractors, etc say my entire body appears to have inflammation. I have back and shoulder problems and I wonder if it is related to CC.
Hi. I took Pepto Bismol when I was diagnosed so I'm not sure how long it would have taken without the Pepto tablets. I would suggest, though that you eliminate dairy as well. Many of us cannot tolerate dairy in addition to gluten. Tex's book which is in the upper right hand corner of this page will be a big help to you as well.
Marcia
Marcia
Hi,
Welcome to our Internet family. Everyone has different recovery times, but if you are showing high inflammation levels, then you probably have a significant amount of intestinal damage, and it might take months to heal enough for the D to stop. It's impossible to predict a time, because we are all different. Gluten damage is very persistent, and can take a long time to heal. Being younger than most of us though, you should heal faster than those of us who are older.
If you remove all traces of your major food sensitivities from your diet, then that diet combination with the Entocort can bring remission within 2 or 3 weeks, in many cases. However, if you plan to eventually stop using the Entocort altogether, then you will need to remove all traces of all of your food sensitivities from your diet.
I didn't take Entocort, and it took me a year and a half for the gluten damage to heal enough for me to reach remission. But I had many years of accumulated damage.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. Everyone has different recovery times, but if you are showing high inflammation levels, then you probably have a significant amount of intestinal damage, and it might take months to heal enough for the D to stop. It's impossible to predict a time, because we are all different. Gluten damage is very persistent, and can take a long time to heal. Being younger than most of us though, you should heal faster than those of us who are older.
If you remove all traces of your major food sensitivities from your diet, then that diet combination with the Entocort can bring remission within 2 or 3 weeks, in many cases. However, if you plan to eventually stop using the Entocort altogether, then you will need to remove all traces of all of your food sensitivities from your diet.
I didn't take Entocort, and it took me a year and a half for the gluten damage to heal enough for me to reach remission. But I had many years of accumulated damage.
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.
do I understand correctly that you have been on entocort for over 4 years and it has stopped working?
If so it may take a long time to heal as meds just mask the symptoms while damage continues.
Many of us are also sensitive to soy and it is in everything.
If so it may take a long time to heal as meds just mask the symptoms while damage continues.
Many of us are also sensitive to soy and it is in everything.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
So sorry that your condition is causing ongoing problems.
I, too, was on Entecort for 4 years and it had stopped working. The doctor wanted to put me on something much stronger and that's when I decided that the diet had to be tried. This website is fantastic. You will see a lot of information here and it's important to realize that each of us is different and we each have different food sensitivities.
It can also be daunting to hear that it will take months to see a big difference in BM's. As my son, the recovering alcoholic, reminds me - one day at a time. I am now at 8 months on a strict diet - no gluten, soy, dairy, raw veggies, and low-fiber. The very good news is that my BM's have been normal for 2 months now and I have successfully tapered off of Entecort. In fact, I feel so much better that I have eliminated 3 other medications as well. The diet can be boring, for sure, but the pay-off is enormous.
Some things that worked for me: lots of meat and fish, sweet potato and some regular potatoes, well-cooked veggies (I mostly stick to carrots, green beans, beets, broccoli, squash), white rice once a day, rice crackers (for something crunchy and salty). I can now eat almond butter, almond milk and a couple of eggs/week.
Once the Entecort is fully out of my system, I will invest in the Enterolab testing to find out, for sure, what my food problems are.
Good luck to you. This could change your life for the better!
Chris
I, too, was on Entecort for 4 years and it had stopped working. The doctor wanted to put me on something much stronger and that's when I decided that the diet had to be tried. This website is fantastic. You will see a lot of information here and it's important to realize that each of us is different and we each have different food sensitivities.
It can also be daunting to hear that it will take months to see a big difference in BM's. As my son, the recovering alcoholic, reminds me - one day at a time. I am now at 8 months on a strict diet - no gluten, soy, dairy, raw veggies, and low-fiber. The very good news is that my BM's have been normal for 2 months now and I have successfully tapered off of Entecort. In fact, I feel so much better that I have eliminated 3 other medications as well. The diet can be boring, for sure, but the pay-off is enormous.
Some things that worked for me: lots of meat and fish, sweet potato and some regular potatoes, well-cooked veggies (I mostly stick to carrots, green beans, beets, broccoli, squash), white rice once a day, rice crackers (for something crunchy and salty). I can now eat almond butter, almond milk and a couple of eggs/week.
Once the Entecort is fully out of my system, I will invest in the Enterolab testing to find out, for sure, what my food problems are.
Good luck to you. This could change your life for the better!
Chris
Hi Overitmc:
Your dr will prob not tell you to go GF, if he hasn't suggested it already. Most GI docs do not advocate diet changes. You may find a lot of relief from the inflammation once you are GF for awhile. Since you were doing well for a long period of time on the Entocort before this, did your dr never suggest you try and drop the dose down to see how you do? Most people start at 9mg, go down to 6mg once doing better, then 3mg, then try to wean off.
Lisa
Your dr will prob not tell you to go GF, if he hasn't suggested it already. Most GI docs do not advocate diet changes. You may find a lot of relief from the inflammation once you are GF for awhile. Since you were doing well for a long period of time on the Entocort before this, did your dr never suggest you try and drop the dose down to see how you do? Most people start at 9mg, go down to 6mg once doing better, then 3mg, then try to wean off.
Lisa
Thanks for responding. Yes, 4 years ago when diagnosed I was on 9 mg of entocort, then 6 and I could never go lower than that. I just in the last 3 weeks went back up to 9 mg because my D was at the state it was when I was diagnosed. I have not reached out to my GI doctor yet since I have been experiencing this 2 month bout of D because in the past when I have talked to him he has said that Entrocort is my best option and he has recommended a GF diet, I was just too stubborn to listen. I haven't been in this bad of a situation since I was diagnosed so I will probably reach back out to him. I want to be able to go in and say "I have been GF for 2 weeks, what is your suggestion now?" I don't want to go in without doing anything and they send me home telling me to go GF and I waste my money. You know what I mean? I am on day 6 of being GF so I think I will call and make an appointment soon.
The D went out of remission when I came back from vacation in Jamaica so I wonder if I picked up a parasite or if it is just ironic timing.
Any advice anyone (on anything)? I will continue to read the posts and get well educated. I am considering the lab testing mentioned on this forum as well. Do you have to be off mess prior to testing or can it be any time?
Will the results still show that I have a GF intolerance if I have already gone GF?
Thanks again!
The D went out of remission when I came back from vacation in Jamaica so I wonder if I picked up a parasite or if it is just ironic timing.
Any advice anyone (on anything)? I will continue to read the posts and get well educated. I am considering the lab testing mentioned on this forum as well. Do you have to be off mess prior to testing or can it be any time?
Will the results still show that I have a GF intolerance if I have already gone GF?
Thanks again!
I am surprised your gi recommended gf! Many of them don't, but that is the first place to start. Many of us can't tolerate dairy or soy either.
IMHO the entocort has masked your symptoms from food intolerances for 4 years and now they have reached a level the med can't fix. Also damage has continued for 4 years, which will make it more difficult and take longer for diet changes to work. Also, I am amazed your GI would let you take it for that long. Uceris is supposed to have less side effects and my GI doesn't want me on it more than 2 months without coming off.
Or I could be all wet
I did say IMHO.
IMHO the entocort has masked your symptoms from food intolerances for 4 years and now they have reached a level the med can't fix. Also damage has continued for 4 years, which will make it more difficult and take longer for diet changes to work. Also, I am amazed your GI would let you take it for that long. Uceris is supposed to have less side effects and my GI doesn't want me on it more than 2 months without coming off.
Or I could be all wet
I did say IMHO.Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Maybe you didn't eat any gluten while you were in Jamaica.
The EnteroLab stool test will detect anti-gluten antibodies for at least a year after gluten is removed from the diet. However, Entocort can interfere with the results. IOW, Entocort can cause false negative test results, because it suppresses antibody production. In your case however, since the Entocort is not able to suppress your symptoms, the EnteroLab test might still work reliably. If you do the test and get a positive result for gluten sensitivity, you can be sure that the result is accurate. If the test were to yield a negative result though, it might be a false negative result, and therefore inconclusive.
And Theresa is correct. You almost surely have other food sensitivities by now. The EnteroLab tests will tell you which additional foods cause you to produce antibodies. But again, the Entocort might cause false negative results. One has to be off Entocort for at least a couple of months in order to be relatively free of it.
Tex
The EnteroLab stool test will detect anti-gluten antibodies for at least a year after gluten is removed from the diet. However, Entocort can interfere with the results. IOW, Entocort can cause false negative test results, because it suppresses antibody production. In your case however, since the Entocort is not able to suppress your symptoms, the EnteroLab test might still work reliably. If you do the test and get a positive result for gluten sensitivity, you can be sure that the result is accurate. If the test were to yield a negative result though, it might be a false negative result, and therefore inconclusive.
And Theresa is correct. You almost surely have other food sensitivities by now. The EnteroLab tests will tell you which additional foods cause you to produce antibodies. But again, the Entocort might cause false negative results. One has to be off Entocort for at least a couple of months in order to be relatively free of it.
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.
Overwhelmed and feel frozen with taking the next steps
I need advice. I feel kind of overwhelmed. I am doing to GF diet. In the mean time since I am still having issues while on 9 mg of Entocort, should I go to my GI? What should I ask him to do? Been on Entocort for 4 years.
Should I go to my primary doctor and ask for blood work for vitaminD and white blood count labs? What else? Anything?
I feel kind of stuck due to being so overwhelmed!
Thanks!
Should I go to my primary doctor and ask for blood work for vitaminD and white blood count labs? What else? Anything?
I feel kind of stuck due to being so overwhelmed!
Thanks!
Whether you go see your GI specialist should depend on whether you want to continue taking Entocort, or try to go in a different direction with the medical part of your treatment. Entocort is the best treatment your doctor has to offer. Virtually all other medical options are either risky, or less effective.
It's always a good idea to keep track of vitamin D level and vitamin B-12 level. If you're concerned about white blood cell counts, then ask for the test. Typically, with this disease all of the usual blood test results will be normal (or close enough for all practical purposes), except for vitamins D and B-12. And when all those results are normal, it's difficult for our doctors to consider us to be anywhere near as sick as we claim to be. That's the problem with this disease. We can be as sick as a dog, but we don't look sick to others, including our doctors.
Your best bet to get your life back is to carefully follow a diet that avoids all your food sensitivities. Your doctors can provide tests and drugs, but they cannot effectively treat MC, unless they recommend the proper diet changes.
Tex
It's always a good idea to keep track of vitamin D level and vitamin B-12 level. If you're concerned about white blood cell counts, then ask for the test. Typically, with this disease all of the usual blood test results will be normal (or close enough for all practical purposes), except for vitamins D and B-12. And when all those results are normal, it's difficult for our doctors to consider us to be anywhere near as sick as we claim to be. That's the problem with this disease. We can be as sick as a dog, but we don't look sick to others, including our doctors.
Your best bet to get your life back is to carefully follow a diet that avoids all your food sensitivities. Your doctors can provide tests and drugs, but they cannot effectively treat MC, unless they recommend the proper diet changes.
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 for responding. I guess where I am stuck is I am sticking to the GF diet without results. From what I understand, the lab tests to see which food sensitivities I have should be performed after being off Entocort because it can effect the results.
My problem is I have to work and I'm assuming the Entocort is somewhat masking the symptoms so if I were to go off of it completely I would be in the bathroom 24 x 7.
How long would I need to be off the Entocort to be able to get the tests? Been on it for 4 years...
So what is you advice in the steps I take from here?
Let's say I eat nothing but rice. How long before I introduce a new food to see if I have a sensitivity to it?
Will I know right away that I have a sensitivity to it?
Should I start by doing a cleanse as if I were prepping for a GI scope test?
Is there a list of foods that are typically "safe" that I would start with?
Sorry so many questions, I just want to get this right and get my life back.
Thank you!
My problem is I have to work and I'm assuming the Entocort is somewhat masking the symptoms so if I were to go off of it completely I would be in the bathroom 24 x 7.
How long would I need to be off the Entocort to be able to get the tests? Been on it for 4 years...
So what is you advice in the steps I take from here?
Let's say I eat nothing but rice. How long before I introduce a new food to see if I have a sensitivity to it?
Will I know right away that I have a sensitivity to it?
Should I start by doing a cleanse as if I were prepping for a GI scope test?
Is there a list of foods that are typically "safe" that I would start with?
Sorry so many questions, I just want to get this right and get my life back.
Thank you!