Hi, I've been taking entocort for the past 6 months, but continue to experience lower abdominal pain, nausea, and occasional diarrhea. I tried asacol, but couldn't tolerate it. A recent sigmoidoscopy didn't show any evidence (via biopsy) of the lymphocytic colitis that was diagnosed in March. It did show "focal active colitis," which the dr said was just irritation. The dr has therefore suggested that I start tapering off entocort, which I am hesitant to do since I don't yet feel healed. Has anyone experience stomach pain as a side effect of entocort? I'm very sensitive to medications and trying to determine if the entocort is helping or hurting at this point. I discussed the enterolab tests with my dr and he felt strongly that they were not reliable. Any idea why doctors are so opposed to these tests? I am going to order them anyway, but am quite concerned about further limiting my diet.
I currently follow a strict gluten free diet (diagnosed with celiac 11 years ago) and am a vegetarian who recently started eating fish. I tried eliminating dairy for two weeks, but didn't notice any difference in my symptoms. I'm having a lot of trouble thinking of easy to digest food, as I've eliminated most of my staples due to difficulty digesting them/high fiber content (e.g. beans, nuts, salads). I've lost 35 pounds this year. I'm only 33 and have been unable to work all year. I'm eager to get my life back and would love any advice about healing!
Thank you!
Help with diet and entocort!
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Miriam,
I'm sorry that a young person can get so sick from the symptoms of this disease. I hope you find some help and comfort from this site. If you have inflammation then even on the entocort you will want to stick with foods easily digested. I can't eat high fiber, seeds, and most herbs. We are all different but what I eat to avoid fiber is:
No Processed Foods
Homemade Chicken soup with well cooked carrots and white rice
Mashed Potatoes
Canned Green Beans
Banana
GF bread made in Bread Maker
GF pasta with Tomato Sauce (not spaghetti sauce)
Organic beef
Turkey sausage
Applesauce in crock pot
Squash/Pumpkin well cooked
Chex GF Cinnamon Cereal
Rice Crackers
Corn tortillas & corn chips
Do keep in my mind what works for me may not work for you so slowly test each new food item. I hope you can succeed in gaining some weight back.
Cory
I'm sorry that a young person can get so sick from the symptoms of this disease. I hope you find some help and comfort from this site. If you have inflammation then even on the entocort you will want to stick with foods easily digested. I can't eat high fiber, seeds, and most herbs. We are all different but what I eat to avoid fiber is:
No Processed Foods
Homemade Chicken soup with well cooked carrots and white rice
Mashed Potatoes
Canned Green Beans
Banana
GF bread made in Bread Maker
GF pasta with Tomato Sauce (not spaghetti sauce)
Organic beef
Turkey sausage
Applesauce in crock pot
Squash/Pumpkin well cooked
Chex GF Cinnamon Cereal
Rice Crackers
Corn tortillas & corn chips
Do keep in my mind what works for me may not work for you so slowly test each new food item. I hope you can succeed in gaining some weight back.
Cory
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Hi Miriam,
I'm afraid that your GI doc is pretty much lost. He doesn't appear to understand MC, nor how to even diagnose it properly, so he surely couldn't be expected to understand how to test for food sensitivities and how to properly treat MC. While a sigmoidscope can be successfully used to diagnose a majority of MC patients (if their inflammation is sufficiently widespread in their colon), it will definitely miss many diagnoses, because it simply can't reach far enough into the colon to detect the areas likely to have the most inflamed patches. In most cases of MC, most of the inflammation seems to be centered around the right-side colon and the ileum. A sigmoidscope won't even come close to reaching that far.
Trust me, if you were originally diagnosed with MC as a result of a pathology report based on an examination of your biopsy slides under the microscope, then you do indeed have MC, and you will always have MC (though obviously it may not always be active, assuming that you take steps to properly treat it at all times).
When I was reacting, I had not only intense pains in my abdomen, but various aches and pains all over my body. MC can affect every organ in the body for some of us.
It's tough to have to eliminate additional foods from our diet, but it pays dividends, because once the inflammation fades away, we will begin to absorb much more of the nutrients in our food, and that is the key to getting our life back. As long as we have a malabsorption problem, it doesn't make much difference how much we eat, because we will not derive much benefit from our food until the inflammation subsides.
I'm not an authority on vegetarian diets, so I'm glad to see that Cory has offered some diet suggestions for you. In your case, as a vegetarian, the most important test may be for soy, because most people who are sensitive to soy are also sensitive to most legumes, and that covers the majority of protein sources for a vegetarian diet. Therefore, IMO the EnteroLab test results will be likely to be especially important for your recovery.
If you are motivated, and willing to do what has to be done with your diet and your lifestyle, you will get your life back.
Tex
I'm afraid that your GI doc is pretty much lost. He doesn't appear to understand MC, nor how to even diagnose it properly, so he surely couldn't be expected to understand how to test for food sensitivities and how to properly treat MC. While a sigmoidscope can be successfully used to diagnose a majority of MC patients (if their inflammation is sufficiently widespread in their colon), it will definitely miss many diagnoses, because it simply can't reach far enough into the colon to detect the areas likely to have the most inflamed patches. In most cases of MC, most of the inflammation seems to be centered around the right-side colon and the ileum. A sigmoidscope won't even come close to reaching that far.
Trust me, if you were originally diagnosed with MC as a result of a pathology report based on an examination of your biopsy slides under the microscope, then you do indeed have MC, and you will always have MC (though obviously it may not always be active, assuming that you take steps to properly treat it at all times).
When I was reacting, I had not only intense pains in my abdomen, but various aches and pains all over my body. MC can affect every organ in the body for some of us.
It's tough to have to eliminate additional foods from our diet, but it pays dividends, because once the inflammation fades away, we will begin to absorb much more of the nutrients in our food, and that is the key to getting our life back. As long as we have a malabsorption problem, it doesn't make much difference how much we eat, because we will not derive much benefit from our food until the inflammation subsides.
I'm not an authority on vegetarian diets, so I'm glad to see that Cory has offered some diet suggestions for you. In your case, as a vegetarian, the most important test may be for soy, because most people who are sensitive to soy are also sensitive to most legumes, and that covers the majority of protein sources for a vegetarian diet. Therefore, IMO the EnteroLab test results will be likely to be especially important for your recovery.
If you are motivated, and willing to do what has to be done with your diet and your lifestyle, you will get your life back.
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.
Hi Miriam,
Cory has some good suggestions, can you add olive oil and coconut oil for extra calories. Have you tried baking with almond flour, there is a good morning glory muffins recipe as well as others on this website.
You may want to wait until you have been off the Entocort for several months before you do the Enterolab tests. My Enterolab test results changed significantly when I rechecked them 6 months after stopping Entocort.
Cory has some good suggestions, can you add olive oil and coconut oil for extra calories. Have you tried baking with almond flour, there is a good morning glory muffins recipe as well as others on this website.
You may want to wait until you have been off the Entocort for several months before you do the Enterolab tests. My Enterolab test results changed significantly when I rechecked them 6 months after stopping Entocort.
Donna
Diagnosed with CC August 2011
Diagnosed with CC August 2011
Thanks! Just to clarify, the doctor didn't say that I no longer have LC-- just that the inflammation appeared to have healed and I could therefore try weaning off the entocort (I've been having some difficult side effects when on it). The other puzzling aspect is that after taking a multivitamin, extra vitamin d, and doing some iron transfusions, my vitamin levels are all normal, which appears to indicate absorption, despite my massive weight loss. I ordered the enterolab vegetarian panel this morning.
Miram,
The first test I did was after I discontinued Entocort, which I was on for 6 months, and I was positive only to Gluten. I decided to do the test 6 months later, because I was not getting better, and I tested positive to all but 3 foods. So I think the first test was a waste of money for me.
The first test I did was after I discontinued Entocort, which I was on for 6 months, and I was positive only to Gluten. I decided to do the test 6 months later, because I was not getting better, and I tested positive to all but 3 foods. So I think the first test was a waste of money for me.
Donna
Diagnosed with CC August 2011
Diagnosed with CC August 2011
Miriam,
That was a good catch by Donna — I overlooked the fact that you had been using Entocort for so long. After several months of use, it can suppress the immune system enough to where antibody production may be limited. This will tend to cause false negative results on any food that didn't have an exceptionally high antibody level to begin with.
The anti-gliadin test result (for gluten) will usually still be reliable, because anti-gliadin antibodies have a half-life of 120 days, so they are very persistent. But the half-life of antibodies to most other foods is only about 6 days, so they fade away relatively quickly, by comparison. In your case though, since you have followed the GF diet for so long, even your anti-gliadin antibody test results might be negative by now.
Tex
That was a good catch by Donna — I overlooked the fact that you had been using Entocort for so long. After several months of use, it can suppress the immune system enough to where antibody production may be limited. This will tend to cause false negative results on any food that didn't have an exceptionally high antibody level to begin with.
The anti-gliadin test result (for gluten) will usually still be reliable, because anti-gliadin antibodies have a half-life of 120 days, so they are very persistent. But the half-life of antibodies to most other foods is only about 6 days, so they fade away relatively quickly, by comparison. In your case though, since you have followed the GF diet for so long, even your anti-gliadin antibody test results might be negative by now.
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.
Hi Miriam:
I'm sorry that you are so sick, and hope you can start to get your life back soon. Is all of your weight loss due to not eating that much as you are nauseous, or to continued diarrhea? Enterolab is definitely a good idea, once off Entecort for several months. I tested intolerant to gluten, soy and eggs. I've eliminated dairy, as well, despite test results, as that can be difficult to digest with an inflamed gut. As you will probably figure out from other posts on the this board, animal protein will help you heal. Too many vegetables, even well cooked ones, can be tough for many of us here, as well as fruit. I eat cooked veggies every day, but never raw anymore, and i don't overdo it on the cooked veggies. Are you eating things like white rice, sweet potatoes, white/red potatoes? You want to get enough carbs. Being a vegetarian you might have a high reliance on eggs. Some of us (unfortunately me) are intolerant to eggs. Soy, too, I know you may eat a lot of as a vegetarian. The big 4 are gluten, dairy, soy and eggs. The Enterolab test will tell you. Donna's suggestion of using more oils, and trying to make muffins is good, to have more calories and fat.
Regarding the Entocort, are you on 1 a day now? If you do wean, you will want to do it slowly-go to 1 every other day for a few weeks, 1 every third day and then stop it.
Hope you start improving.
HUGS
Lisa
I'm sorry that you are so sick, and hope you can start to get your life back soon. Is all of your weight loss due to not eating that much as you are nauseous, or to continued diarrhea? Enterolab is definitely a good idea, once off Entecort for several months. I tested intolerant to gluten, soy and eggs. I've eliminated dairy, as well, despite test results, as that can be difficult to digest with an inflamed gut. As you will probably figure out from other posts on the this board, animal protein will help you heal. Too many vegetables, even well cooked ones, can be tough for many of us here, as well as fruit. I eat cooked veggies every day, but never raw anymore, and i don't overdo it on the cooked veggies. Are you eating things like white rice, sweet potatoes, white/red potatoes? You want to get enough carbs. Being a vegetarian you might have a high reliance on eggs. Some of us (unfortunately me) are intolerant to eggs. Soy, too, I know you may eat a lot of as a vegetarian. The big 4 are gluten, dairy, soy and eggs. The Enterolab test will tell you. Donna's suggestion of using more oils, and trying to make muffins is good, to have more calories and fat.
Regarding the Entocort, are you on 1 a day now? If you do wean, you will want to do it slowly-go to 1 every other day for a few weeks, 1 every third day and then stop it.
Hope you start improving.
HUGS
Lisa
weaning Entecort to get good labs
Thanks for bringing up some questions that I have been having.
I was diagnosed with CC 2 years ago and have not been able to get off of Entecort. Sometimes I can get down to 3mg. a day, but always relapse. I also take 2 Lialda a day. Currently in a flare.
Largely due to the inspiration I have drawn from this forum, I'm ready to find out my food culprits and more than willing to follow a strict diet to get some relief. I decided to spring for the Enterolab testing only to face 2 roadblocks.
1. I live in NY state (against the law here).
2. Lab results will be skewed by the Entecort.
So, how can I wean off of medication (Lialda, too??) and not be immobilized by D. And, is there a way with an elimination diet, that I can figure out my own sensitivities until the meds leave my body completely?
And, if I follow the strictest elim. diet - how long before I introduce wheat, etc to test myself for that sensitivity? Do I test one food and then wait a while to test another?
Any helpful advise would be appreciated her. I've been over 6 decades on the downward slope of so many CC symptoms and I'm committed to getting better!
Thanks!
I was diagnosed with CC 2 years ago and have not been able to get off of Entecort. Sometimes I can get down to 3mg. a day, but always relapse. I also take 2 Lialda a day. Currently in a flare.
Largely due to the inspiration I have drawn from this forum, I'm ready to find out my food culprits and more than willing to follow a strict diet to get some relief. I decided to spring for the Enterolab testing only to face 2 roadblocks.
1. I live in NY state (against the law here).
2. Lab results will be skewed by the Entecort.
So, how can I wean off of medication (Lialda, too??) and not be immobilized by D. And, is there a way with an elimination diet, that I can figure out my own sensitivities until the meds leave my body completely?
And, if I follow the strictest elim. diet - how long before I introduce wheat, etc to test myself for that sensitivity? Do I test one food and then wait a while to test another?
Any helpful advise would be appreciated her. I've been over 6 decades on the downward slope of so many CC symptoms and I'm committed to getting better!
Thanks!
Yes, the doctors' lobby is very powerful in NY and Maryland, where a similar law is in place, to protect doctors and their chosen labs from competition . . . er, I mean, to protect patients from unscrupulous laboratories and to protect patients from themselves, lest in their ignorance they misinterpret a lab result.Hopeful wrote:1. I live in NY state (against the law here).
Some members here have had friends or relatives in adjacent states order the test kits, and then ship them back to the lab. In some cases where that wasn't possible, members here have been willing to help.
Yes, that's a definite problem, and it will probably take at least 6 or 8 weeks to get all of the medication out of your system, so that your immune system will function more normally again.Hopeful wrote:2. Lab results will be skewed by the Entecort.
The best solution would be to just do the elimination diet while you are on the Entocort, and then begin to test foods when you get down to 3 mg of Entocort per day and below. That should spare you most of the misery of trying to do an elimination diet au naturel. If you do it carefully, you may not even need the EnteroLab tests.Hopeful wrote:So, how can I wean off of medication (Lialda, too??) and not be immobilized by D. And, is there a way with an elimination diet, that I can figure out my own sensitivities until the meds leave my body completely?
As I posted to someone else's question about testing gluten earlier this afternoon, if you have MC, the odds of you not being sensitive to gluten are almost as good as your chances of winning the lottery. That is a very low-priority item, because I can virtually guarantee that you will fail that test.Hopeful wrote:And, if I follow the strictest elim. diet - how long before I introduce wheat, etc to test myself for that sensitivity? Do I test one food and then wait a while to test another?
As for the other foods, it usually works best to try them one at at time of course, for at least 3 days in a row, starting with a relatively small helping and increasing the "dose" each day. If you haven't reacted by the 4th day, it's probably a safe food. But note that you may begin to react after the Entocort wears off, so testing early on can be a waste of time. It's best to view the drug-tapering period as a good time to remove foods that are still in your diet that might be causing problems that the corticosteroid has been masking, and not necessarily a good time to reintroduce foods into the diet.
IOW, most of the serious food testing should begin after the Entocort has been completely discontinued. If you begin testing too soon, and suffer a relapse, you might end up having to abort the entire process and reinstate the Entocort treatment, and start over. That could definitely happen if you introduce gluten into your diet, either intentionally or accidentally. If you feel obligated to test gluten, please don't mess with it for at least 2 or 3 months after your last Entocort pill, because that's how long budesonide can have a minor residual protective effect. If you can reach the 8-week point after discontinuing the Entocort treatment, without a relapse (or symptoms), your diet is probably safe. That would be the safest point at which to begin testing new foods, but most people don't have the patience to wait that long.
Good luck with this, and feel free to ask questions about anything, anytime.
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, Tex
...for all your helpful information.
I will follow your advise and start tapering the Entecort very slowly while eliminating foods from my diet and not try to push things too fast.
Just anxious to know what my food culprits are. Patience is not always my virtue.
Right now, though, I am a baker (artisan breads, english muffins, baked goods) and around flour all the time. When the farmer's market season is over (soon!), I'll give away remaining large bags of flour, clean my kitchen thoroughly, and start from scratch.
Hopefully, in about 6 months, I'll be able to contact Enterolab. Sigh...
I will follow your advise and start tapering the Entecort very slowly while eliminating foods from my diet and not try to push things too fast.
Just anxious to know what my food culprits are. Patience is not always my virtue.
Right now, though, I am a baker (artisan breads, english muffins, baked goods) and around flour all the time. When the farmer's market season is over (soon!), I'll give away remaining large bags of flour, clean my kitchen thoroughly, and start from scratch.
Hopefully, in about 6 months, I'll be able to contact Enterolab. Sigh...
Hi, thanks for your help! I actually did the enterolab testing before I got your responses and the results came back positive for everything (I did the vegetarian panel). I'm having trouble wrapping my head around these results-- that my system can't tolerate any major food group. Any suggestions on how to proceed? These results are even more alarming because I've been on entocort for almost 7 months now!
Hi Miriam,
I'm sorry to hear that your results show so many food sensitivities, but unfortunately that seems to be pretty common with this disease. The good news is that while we will always be sensitive to the main protein problems (gluten, casein, soy, and eggs), if we do a good job of avoiding our food sensitivities long enough for our digestive system to heal properly, we can usually reintroduce many of the other foods back into our diet eventually. We have to test them one at a time, of course, and it helps to start with relatively small portions, and work our way back up, but at least we do not have to avoid all of those foods forever.
In the meantime, we have to settle on a healing diet that avoids the foods that cause us to react, so that the inflammation will slowly fade away. As the inflammation subsides, the Entocort should be able to do a better job of suppressing your symptoms, and that will give you more time to fine tune your diet so that when you finally wean off the medication, your intestines should have healed sufficiently that your new diet will allow you to maintain remission by diet alone. After half a year or more of healing, you should be able to successfully reintroduce some foods.
There should be some types of fish that you can eat, and this is important, because it takes adequate protein to heal the gut. If we are sensitive to soy, then we are usually sensitive to most legumes also, and so it becomes impossible to get enough protein on a strict vegetarian diet. If eggs are an option, they are a good source of protein.
Just because we are sensitive to a food, does not mean that we are sensitive to all foods in that group. Often, we can tolerate other foods in the group. In order to make specific suggestions though, we would need to know more details of the test results.
Tex
I'm sorry to hear that your results show so many food sensitivities, but unfortunately that seems to be pretty common with this disease. The good news is that while we will always be sensitive to the main protein problems (gluten, casein, soy, and eggs), if we do a good job of avoiding our food sensitivities long enough for our digestive system to heal properly, we can usually reintroduce many of the other foods back into our diet eventually. We have to test them one at a time, of course, and it helps to start with relatively small portions, and work our way back up, but at least we do not have to avoid all of those foods forever.
In the meantime, we have to settle on a healing diet that avoids the foods that cause us to react, so that the inflammation will slowly fade away. As the inflammation subsides, the Entocort should be able to do a better job of suppressing your symptoms, and that will give you more time to fine tune your diet so that when you finally wean off the medication, your intestines should have healed sufficiently that your new diet will allow you to maintain remission by diet alone. After half a year or more of healing, you should be able to successfully reintroduce some foods.
There should be some types of fish that you can eat, and this is important, because it takes adequate protein to heal the gut. If we are sensitive to soy, then we are usually sensitive to most legumes also, and so it becomes impossible to get enough protein on a strict vegetarian diet. If eggs are an option, they are a good source of protein.
Just because we are sensitive to a food, does not mean that we are sensitive to all foods in that group. Often, we can tolerate other foods in the group. In order to make specific suggestions though, we would need to know more details of the test results.
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.
Hi, I'm pasting my results below:
Food to which there was no significant immunological reactivity: none
Food to which there was some immunological reactivity (1+): milk
Food to which there was moderate immunological reactivity (2+):
Rice
Cashew
Walnut
White potato
Sesame Seed
Food to which there was significant and/or the most immunological reactivity (3+):
Egg
Almond
Corn
Soy
Garbonzo Bean
Food to which there was no significant immunological reactivity: none
Food to which there was some immunological reactivity (1+): milk
Food to which there was moderate immunological reactivity (2+):
Rice
Cashew
Walnut
White potato
Sesame Seed
Food to which there was significant and/or the most immunological reactivity (3+):
Egg
Almond
Corn
Soy
Garbonzo Bean