At my last GI visit in March, his synopsis was "Cured"! I was to taper off Entocort over a few weeks to none at all. At first, I was symptom free and felt "born again". I enjoyed a doughnut here and there. You can't beat a fresh, warm flour tortilla. I had a hamburger, with the BUN. Now, weeks later after living like I've been on a cruise with 24 hour buffets, I'm up 5 pounds and ALL the symptoms at the time of my mc diagnosis are back. I guess I'm not surprised, but I was hoping.
So, I see my ...(doctor doesn't seem right. Websters says a doctor is someone who is skilled in the art of healing, lol) I see my GI on Monday and we'll see what he has up his sleeve this time. I know I need to go the Enterolab route. It's just hard to send off the money.
~Hope everyone has a fabulous weekend.
I was just looking on the Enterolab site. I would appreciate input into which tests I should have.
Back to square one
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Becky!!
I'm sorry to hear that you are back to having your symptoms again.
Usually anyone that is taking Entocort or Pred that tries to taper down or go off of them relapses.
As far as Dr. Fine's testing, I remember ordering the one that cost $369.
It checked for gluten sensitivity, malabsorption, caesin intolerance.
If you don't want to spend the money, and if you want to, see how you do if you start eliminating foods that you know cause you problems.
Dee~~~~~
I'm sorry to hear that you are back to having your symptoms again.
Usually anyone that is taking Entocort or Pred that tries to taper down or go off of them relapses.
As far as Dr. Fine's testing, I remember ordering the one that cost $369.
It checked for gluten sensitivity, malabsorption, caesin intolerance.
If you don't want to spend the money, and if you want to, see how you do if you start eliminating foods that you know cause you problems.
Dee~~~~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
Becky sorry about the relapse-----but *cured* is a *yippee* word 
cant ROCK the boat too soon 
MY GI said to me *there is no cure BUT we can get U a better life* As I have posted a zillion times---I have been very fortunate compared to many here--
I never suffered with many of the issues that others have spoken about---
As DEE said---go back to elimination time again---and see what happens-
Trial and error is the name of getting back to the *wellness road*
Get to feeling better---
Barbara
cant ROCK the boat too soon MY GI said to me *there is no cure BUT we can get U a better life* As I have posted a zillion times---I have been very fortunate compared to many here--
I never suffered with many of the issues that others have spoken about---
As DEE said---go back to elimination time again---and see what happens-
Trial and error is the name of getting back to the *wellness road*
Get to feeling better---
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
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harvest_table
- Rockhopper Penguin
- Posts: 1509
- Joined: Wed May 25, 2005 6:29 pm
- Location: Fergus Falls, Minnesota
Becky,
I'm so sorry to hear that, but not surprised either. You had put so much time and energy into your med/diet trial and I was really hoping you would at least continue to maintain a gf diet once you weaned off the Entocort- it just might have made a difference, but who knows for sure.
Dee is right, once a persons weans off pred, or entocort they will generally relapse - that's why it is so important to have a diet plan in place while weaning off treatment with these medications. As for Enterolab testing, that will confirm your sensitivities but it will still be up to you to make another plan and take action.
The good news is your really not back to square one since you already have had 6 months of Entocort along with a gf diet under your belt and know it worked well for you. So, like mentioned try diet restrictions again alone and see if that brings you back around or if your symptoms are really out of control you could consider another shorter round of Entocort to give you a jump start with dieting.
Hang in there and thanks for posting, were all pulling for you!
Love,
Joanna
I'm so sorry to hear that, but not surprised either. You had put so much time and energy into your med/diet trial and I was really hoping you would at least continue to maintain a gf diet once you weaned off the Entocort- it just might have made a difference, but who knows for sure.
Dee is right, once a persons weans off pred, or entocort they will generally relapse - that's why it is so important to have a diet plan in place while weaning off treatment with these medications. As for Enterolab testing, that will confirm your sensitivities but it will still be up to you to make another plan and take action.
The good news is your really not back to square one since you already have had 6 months of Entocort along with a gf diet under your belt and know it worked well for you. So, like mentioned try diet restrictions again alone and see if that brings you back around or if your symptoms are really out of control you could consider another shorter round of Entocort to give you a jump start with dieting.
Hang in there and thanks for posting, were all pulling for you!
Love,
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
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annie oakley
- King Penguin
- Posts: 3859
- Joined: Fri May 13, 2011 5:56 pm
Becky,
Well, that's a bummer, but as Joanna mentioned, you're not really starting over, because you've learned a lot of valuable information in the past few months. You now obviously know more than your "doctor", about treating MC, and as the saying goes, knowledge is power. The fact that you're not really surprised, and your "doctor" probably will be, is proof that you really do know more about treating this disease than he does.
As everyone who posted ahead of me here has already said, if you don't want to spend the money, just cut the suspect foods out of your diet, and see what happens. The odds are pretty good that you may have to only cut out gluten and dairy. Anyway, I'd start with those two, and if you can't see any improvement in two or three weeks, then cut out everything that Polly has listed under her avatar. (You might see improvement in a few days, but it will probably take much longer - it might take months). After you're back to normal for about a week, or so, then you can try adding back in some of the items that are on Polly's list, but do it one at a time, and allow enough time for each item, to be sure that it is OK, before trying the next item.
Or, if you don't want to go through a long trial, another option would be to cut out gluten and dairy, and if you're not at least a little better, in a couple of weeks or so, then try the Enterolab tests.
The Enterolab tests are nice, (and save some time), but even Dr. Fine will tell you that you don't really have to have them, if you're willing to do a trial and error test.
Tex
P S Don't be so hard on your GI doc - he might have a half-way decent track record at "curing" simpler problems, such as hemorrhoids, constipation, etc. Hahahahaha.
Well, that's a bummer, but as Joanna mentioned, you're not really starting over, because you've learned a lot of valuable information in the past few months. You now obviously know more than your "doctor", about treating MC, and as the saying goes, knowledge is power. The fact that you're not really surprised, and your "doctor" probably will be, is proof that you really do know more about treating this disease than he does.
As everyone who posted ahead of me here has already said, if you don't want to spend the money, just cut the suspect foods out of your diet, and see what happens. The odds are pretty good that you may have to only cut out gluten and dairy. Anyway, I'd start with those two, and if you can't see any improvement in two or three weeks, then cut out everything that Polly has listed under her avatar. (You might see improvement in a few days, but it will probably take much longer - it might take months). After you're back to normal for about a week, or so, then you can try adding back in some of the items that are on Polly's list, but do it one at a time, and allow enough time for each item, to be sure that it is OK, before trying the next item.
Or, if you don't want to go through a long trial, another option would be to cut out gluten and dairy, and if you're not at least a little better, in a couple of weeks or so, then try the Enterolab tests.
The Enterolab tests are nice, (and save some time), but even Dr. Fine will tell you that you don't really have to have them, if you're willing to do a trial and error test.
Tex
P S Don't be so hard on your GI doc - he might have a half-way decent track record at "curing" simpler problems, such as hemorrhoids, constipation, etc. Hahahahaha.
HI Becky....I'm so sorry that you have relapsed....what a bummer....I guess it takes some of us a whille to really believe that what we eat or more to the point what we don't eat does make a difference. My GI doc says it isn't the food....you have probably read of my struggles to make the switch from dairy to none....that is what is so powerful about denial ...we want so badly to believe that we are really OK now and can go back to the old ways....from all the input I have gotten...not so!! I did the entero lab ( the one that is $369 ...I wanted to be sure what exactly I was dealing with....I was so surprised that once i got my test results, I got discouraged because here it was in black and white....I can't fool myself any longer. Polly and others have written aobut doing well on the Paleo diet and my DH & I have tried it a few days at a time... so I am thining that may be the easiest route for me....good luck...you will find your way thru this, I know it!!
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair
Hi Becky
Sorry to read things seem to be going backwards my story so far has been much the same as yours, although the 'D' has not returned bathroom visits have increased etc so now I am back on the Entocort. Keep smiling we will both get there at some point and in the mean time we have something to take to provide a better quality of life.
Thinking of you
Sorry to read things seem to be going backwards my story so far has been much the same as yours, although the 'D' has not returned bathroom visits have increased etc so now I am back on the Entocort. Keep smiling we will both get there at some point and in the mean time we have something to take to provide a better quality of life.
Thinking of you
Hey, Becky...it dawned on me this afternoon that you really aren't back to square one at all....square one was when you didn't know all that you know now and were totally in the dark....so it's like the game of Life ....so many moves forward and then a few back and then a few more forward...you are still going around the game board...learning as you go..so you will never go back to square one after all!!
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair
I agree with Sunny...I think we are all in denial at first about the food relationship to this disease. I felt that the Enterolab results were worthwhile because they saved me from guessing about five of my intolerances. After 10 months, I'm still working on determining the rest, but I'm an unusual case.
My symptoms reappeared when I had reduced to 3 mg. of Entocort. I've never been able to successfully get below 6 mg., but hope springs eternal.
So Tex, you think that one can begin reintroducing suspect foods after just one week of normal BMs? If I ever get to that point, I can use that as a guideline.
My symptoms reappeared when I had reduced to 3 mg. of Entocort. I've never been able to successfully get below 6 mg., but hope springs eternal.
So Tex, you think that one can begin reintroducing suspect foods after just one week of normal BMs? If I ever get to that point, I can use that as a guideline.
You never know what you can do until you have to do it.
Gloria,
One week is probably rushing things a bit, but I find that most of us, (myself included), are usually so impatient to see if we are "cured yet", so to speak, that we have a tough time doing it "right". I remember after I first cut out gluten, I was keeping a diary, and I could see that dairy products and corn, were causing problems, (among other things, such as fruit, nuts, sugar, and some veggies, especially lettuce), sooooo about every two or three weeks, I couldn't resist "testing" myself, to see if my gut was "healed" well enough to begin eating them again. Consequently, every two or three weeks, I got sick again. LOL.
I wasn't a big fan of the other intolerances anyway, so I never tried them, and at the time, my best guess was that I might be a celiac, so I wasn't about to eat any gluten, but I had read that any type of enteritis can cause temporary lactose intolerance, so I incorrectly assumed that my dairy problem was due to lactose intolerance, and therefore it should be temporary. At the time, I couldn't find any references to corn intolerances, (only corn allergies), so I assumed that it was temporary, also, and I hadn't run across any discussion boards that made any sense to me, since I didn't really know what I had, anyway, (I couldn't find any celiacs talking about corn intolerances.
Anyway, I finally figured out that it was the casein that was causing the problem, so I quit testing myself, and things went much better after that. LOL.
The thing about food testing, though, if you're taking a med, is that meds change the way that we respond to them. Without meds, it's pretty straightforward. The consensus of opinion on this board, in the past, (among those of us using diet alone, to control our symptoms), has been that remission can always be achieved by diet alone. We've had so many tough cases to come along lately, though, that now, that position has been called into question. Deep down, I still believe that diet alone can do the job. The problem is, if there is one single confounding element in the diet, then the whole effort is a lost cause. Stories like the one that Carey posted, about coffee laced with corn, for example, illustrate how easy it can be to be "stumped" by a diet, even though you might be doing everything right.
Sorry, I got sidetracked - didn't mean to write a book.
Tex
One week is probably rushing things a bit, but I find that most of us, (myself included), are usually so impatient to see if we are "cured yet", so to speak, that we have a tough time doing it "right". I remember after I first cut out gluten, I was keeping a diary, and I could see that dairy products and corn, were causing problems, (among other things, such as fruit, nuts, sugar, and some veggies, especially lettuce), sooooo about every two or three weeks, I couldn't resist "testing" myself, to see if my gut was "healed" well enough to begin eating them again. Consequently, every two or three weeks, I got sick again. LOL.
I wasn't a big fan of the other intolerances anyway, so I never tried them, and at the time, my best guess was that I might be a celiac, so I wasn't about to eat any gluten, but I had read that any type of enteritis can cause temporary lactose intolerance, so I incorrectly assumed that my dairy problem was due to lactose intolerance, and therefore it should be temporary. At the time, I couldn't find any references to corn intolerances, (only corn allergies), so I assumed that it was temporary, also, and I hadn't run across any discussion boards that made any sense to me, since I didn't really know what I had, anyway, (I couldn't find any celiacs talking about corn intolerances.
Anyway, I finally figured out that it was the casein that was causing the problem, so I quit testing myself, and things went much better after that. LOL.
The thing about food testing, though, if you're taking a med, is that meds change the way that we respond to them. Without meds, it's pretty straightforward. The consensus of opinion on this board, in the past, (among those of us using diet alone, to control our symptoms), has been that remission can always be achieved by diet alone. We've had so many tough cases to come along lately, though, that now, that position has been called into question. Deep down, I still believe that diet alone can do the job. The problem is, if there is one single confounding element in the diet, then the whole effort is a lost cause. Stories like the one that Carey posted, about coffee laced with corn, for example, illustrate how easy it can be to be "stumped" by a diet, even though you might be doing everything right.
Sorry, I got sidetracked - didn't mean to write a book.
Tex
Hi Becky,
Just wanted to weigh in to offer my sympathy too! I can feel your frutration.....we just don't have time in our busy lives to be sick. Not to mention extra time to try and tease out any food intolerances.
I also want to share my experience with you. When I first found this website and learned about the relationship between gluten and MC, I decided to just go ahead and eliminate gluten on my own. However, Alice here urged me to get Dr. Fine's tests first in order to have scientific validation. At that time, he was only testing for gluten and yeast, I believe. (Both were positive in my case). I have never regretted getting those tests. I think it is reassuring to have the scientific evidence before making a major lifestyle change. Plus, if you eliminate certain foods and then later decide to get the tests, you may have to start eating them again for the tests to be positive. I believe the $$$$ was extremely well-spent in my case. My only regret is that he wasn't testing at that time for MORE intolerances.....it took me forever to figure them all out piecemeal on my own.
Some folks have been able to get their insurance to cover Enterolab's tests. Have you checked into it? His lab is fully accredited and meets all federal and state standards.
Good luck, and I hope you are feeling better soon.
Love,
Polly
Just wanted to weigh in to offer my sympathy too! I can feel your frutration.....we just don't have time in our busy lives to be sick. Not to mention extra time to try and tease out any food intolerances.
I also want to share my experience with you. When I first found this website and learned about the relationship between gluten and MC, I decided to just go ahead and eliminate gluten on my own. However, Alice here urged me to get Dr. Fine's tests first in order to have scientific validation. At that time, he was only testing for gluten and yeast, I believe. (Both were positive in my case). I have never regretted getting those tests. I think it is reassuring to have the scientific evidence before making a major lifestyle change. Plus, if you eliminate certain foods and then later decide to get the tests, you may have to start eating them again for the tests to be positive. I believe the $$$$ was extremely well-spent in my case. My only regret is that he wasn't testing at that time for MORE intolerances.....it took me forever to figure them all out piecemeal on my own.
Some folks have been able to get their insurance to cover Enterolab's tests. Have you checked into it? His lab is fully accredited and meets all federal and state standards.
Good luck, and I hope you are feeling better soon.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.