The entocort does seem to be helping no real diarrhea since I started and things are more normal,
Many have mentioned diet control, I was tested last week for celiac and was negative.......more info on diet???
Thanks for your help and listening
more help
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Thanks to all that responded to my previous "help" message, I am one week on the entocort and down to Asacol 2 twice a day, I still have unbelievable nausea seems to hit me in the afternoon, no vomiting since starting the Entocort, but still have the nausea, which lucky for me is in the p.m., I take Zofran in the daytime if I am at work,
The entocort does seem to be helping no real diarrhea since I started and things are more normal,
Many have mentioned diet control, I was tested last week for celiac and was negative.......more info on diet???
Thanks for your help and listening
The entocort does seem to be helping no real diarrhea since I started and things are more normal,
Many have mentioned diet control, I was tested last week for celiac and was negative.......more info on diet???
Thanks for your help and listening
LWalker
Did you have the blood test for celiac?
Unfortunately a negative celiac blood test doesn't really mean much. Mine is negative, but because I have a low IgA count anyway, false negatives are common. I also had the gastroscopy, which found my villi are still upright, so therefore I don't have celiac disease according to that measure. But even my GP is sensible enough to know that some people will react to gluten without being positive to the tests. Her response is simple - if you feel better without gluten, then go for it.
Many people here use the enterolabs testing to identify food intolerances based on a stool sample. Type enterolab into the google search bar and you'll get them. If you don't want to go to that expense, or it isn't practical for you, then trial and error seems to work well.
Common intolerances amongst potty people are gluten, dairy, soy and corn, but there are others. Eliminating some or all of these may help. If the nausea is always in the afternoon, it might be worthwhile to look at what you have been eating and drinking during the morning. If you exclude all gluten and dairy for a couple of days does it make a difference?
Tex and the others will no doubt join in with heaps of information for you. In the meantime have a look at some of the older threads, particularly those from other people new to the group, and you will find a lot of information that can help.
Good to hear your D has settled, at least you are on the way to recovery.
Lyn
Unfortunately a negative celiac blood test doesn't really mean much. Mine is negative, but because I have a low IgA count anyway, false negatives are common. I also had the gastroscopy, which found my villi are still upright, so therefore I don't have celiac disease according to that measure. But even my GP is sensible enough to know that some people will react to gluten without being positive to the tests. Her response is simple - if you feel better without gluten, then go for it.
Many people here use the enterolabs testing to identify food intolerances based on a stool sample. Type enterolab into the google search bar and you'll get them. If you don't want to go to that expense, or it isn't practical for you, then trial and error seems to work well.
Common intolerances amongst potty people are gluten, dairy, soy and corn, but there are others. Eliminating some or all of these may help. If the nausea is always in the afternoon, it might be worthwhile to look at what you have been eating and drinking during the morning. If you exclude all gluten and dairy for a couple of days does it make a difference?
Tex and the others will no doubt join in with heaps of information for you. In the meantime have a look at some of the older threads, particularly those from other people new to the group, and you will find a lot of information that can help.
Good to hear your D has settled, at least you are on the way to recovery.
Lyn
I hope you will keep on improving. I doubt that you have to taper down on Asacol if you goal is to go off it. I've never heard of tapering down on it except for people who want to find out the minimum they can take and still control the symptoms. Not sure what you goal is about that. 
Entocort, in my opinion, should be tapered off.
for 'ya
Shirley
Entocort, in my opinion, should be tapered off. for 'yaShirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Hi Laura,
I'm glad to hear that the Entocort is already helping. Hopefully, the nausea will begin to diminish, as the inflammation slowly goes away.
Like Lyn, I assume that you probably had the standard blood tests that are used to screen for celiac disease. I agree with what she said, 100%. All of us with this disease virtually always show a negative result to those tests, except for those of us who also have fully-developed celiac disease. Despite the negative test results, most of us are just as sensitive to gluten as most celiacs, and some of us are even more sensitive. The only tests sensitive enough to detect the antibodies that we produce, were recently developed, (within the last 10 years), and as she pointed out, they are only offered by a lab in Dallas, TX, known as Enterolab. They offer mail order kits, and their tests are several orders of magnitude more sensitive that the blood tests. We have found them to be extremely reliable for detecting food sensitivities. Unfortunately, though, most doctors are not familiar with these tests, so they will automatically claim that the tests are worthless, when asked. Also, most insurance companies will not yet pay for these tests. A few doctors, however are beginning to learn about them, and if a doctor orders the tests, some insurance companies will pay for them. Hopefully, this situation will improve, as time goes on.
https://www.enterolab.com/Home.htm
Many members control their symptoms with Entocort, and then they use a reduced dosage treatment to maintain remission. Some members, who are extremely sensitive to their food intolerances, find that they also have to restrict their diet, in order to achieve remission, and eventually, most of them are able to discontinue the Entocort, and maintain remission by diet alone. Many of us, just use the diet alone, but it usually takes longer to achieve remission this way.
As Lyn mentioned, most all of us are intolerant of gluten, (the gene for gluten-sensitivity is apparently triggered when MC is initially triggered), and almost as many are intolerant of casein, (the primary protein in milk). About half of us are also soy-intolerant, and a few of us have many more intolerances, such as eggs, corn, yeast, etc.
Most of us are able to achieve and maintain remission by removing all traces of gluten, (wheat, barley, rye, and oats), dairy products, and soy from our diets. We either get the tests at Entorolab, or we determine our intolerances by trial and error, as Lyn pointed out.
Currently, most GI docs are very poorly informed about effective methods for treating MC. Most of them will still insist that if a patient tests negative to the celiac blood tests, then it is impossible for them to be gluten-sensitive. We have actually had members who achieved remission by diet alone, tell their GI docs how they did it, and many/most of those doctors have rolled their eyes, laughed, and told the patient to go back to eating gluten, and anything else they want to eat, because "diet has nothing to do with MC", (in their opinion). That's sad, but more GI docs are learning about this food connection every day, so hopefully, their patients will eventually have a much better chance at achieving remission, without having to go to internet discussion boards, in order to learn that information. If you are interested, there is a lot of information about the diet in this forum:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=6
and there are hundreds of delicious gluten-free, dairy-free, and soy-free recipes here:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
Dee is a professional chef who also has MC. She is currently writing a cook book, based on these recipes, for people with multiple intolerances.
By the way, I tried to respond to your e-mail, but my response "bounced", so I'd like to take this opportunity to relay what I wanted to say in that e-mail:
Tex
I'm glad to hear that the Entocort is already helping. Hopefully, the nausea will begin to diminish, as the inflammation slowly goes away.
Like Lyn, I assume that you probably had the standard blood tests that are used to screen for celiac disease. I agree with what she said, 100%. All of us with this disease virtually always show a negative result to those tests, except for those of us who also have fully-developed celiac disease. Despite the negative test results, most of us are just as sensitive to gluten as most celiacs, and some of us are even more sensitive. The only tests sensitive enough to detect the antibodies that we produce, were recently developed, (within the last 10 years), and as she pointed out, they are only offered by a lab in Dallas, TX, known as Enterolab. They offer mail order kits, and their tests are several orders of magnitude more sensitive that the blood tests. We have found them to be extremely reliable for detecting food sensitivities. Unfortunately, though, most doctors are not familiar with these tests, so they will automatically claim that the tests are worthless, when asked. Also, most insurance companies will not yet pay for these tests. A few doctors, however are beginning to learn about them, and if a doctor orders the tests, some insurance companies will pay for them. Hopefully, this situation will improve, as time goes on.
https://www.enterolab.com/Home.htm
Many members control their symptoms with Entocort, and then they use a reduced dosage treatment to maintain remission. Some members, who are extremely sensitive to their food intolerances, find that they also have to restrict their diet, in order to achieve remission, and eventually, most of them are able to discontinue the Entocort, and maintain remission by diet alone. Many of us, just use the diet alone, but it usually takes longer to achieve remission this way.
As Lyn mentioned, most all of us are intolerant of gluten, (the gene for gluten-sensitivity is apparently triggered when MC is initially triggered), and almost as many are intolerant of casein, (the primary protein in milk). About half of us are also soy-intolerant, and a few of us have many more intolerances, such as eggs, corn, yeast, etc.
Most of us are able to achieve and maintain remission by removing all traces of gluten, (wheat, barley, rye, and oats), dairy products, and soy from our diets. We either get the tests at Entorolab, or we determine our intolerances by trial and error, as Lyn pointed out.
Currently, most GI docs are very poorly informed about effective methods for treating MC. Most of them will still insist that if a patient tests negative to the celiac blood tests, then it is impossible for them to be gluten-sensitive. We have actually had members who achieved remission by diet alone, tell their GI docs how they did it, and many/most of those doctors have rolled their eyes, laughed, and told the patient to go back to eating gluten, and anything else they want to eat, because "diet has nothing to do with MC", (in their opinion). That's sad, but more GI docs are learning about this food connection every day, so hopefully, their patients will eventually have a much better chance at achieving remission, without having to go to internet discussion boards, in order to learn that information. If you are interested, there is a lot of information about the diet in this forum:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=6
and there are hundreds of delicious gluten-free, dairy-free, and soy-free recipes here:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
Dee is a professional chef who also has MC. She is currently writing a cook book, based on these recipes, for people with multiple intolerances.
By the way, I tried to respond to your e-mail, but my response "bounced", so I'd like to take this opportunity to relay what I wanted to say in that e-mail:
Please don't hesitate to ask anything that comes to mind. MC is a very poorly understood disease, (especially by the medical community), considering that it is so debilitating.You're most welcome, and thank you for the kind words. I hope that the next few months are much "kinder and gentler", and I hope that you will be able to fine tune a treatment plan that will allow you to get your life back.
We appreciate you joining our online family.
Tex
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.