Rose, I'm glad that you have made the decisions that you have made.
Please know that most GI's do not know about the food intolerances and pretty much refuse to listen to their patients on that subject. They roll their eyes and say diet has nothing to do with it. We KNOW otherwise.
Camryn's doctor gets it and even wants her Mom to write up a case study! Some doctors don't believe but they say it can't hurt. One doctor told a PP that she had just gone into remission and diet had nothing to do with it.
My doctor said I could be her test patient! She is having one of her MC patients who didn't respond to Entocort try going GF. I hope that person can do it well. A lot is riding on it. I think that person may be older because when I asked the GI if that person used the computer, she said no. (I also told my doc about dairy and soy.)
Entocort Side Effects
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Joan,
I take it you do not live in Knoxville, Tennessee. I would love to have a GI that would listen to me and try to understand what it is we are going through. The problem I have here is that my GI is part of a big practice, although I think that UT Hospital has a practice. The hunt is on.
And yes, I still have not heard from my doctor's office.
Alive and kicking, for now.
Rose
I take it you do not live in Knoxville, Tennessee. I would love to have a GI that would listen to me and try to understand what it is we are going through. The problem I have here is that my GI is part of a big practice, although I think that UT Hospital has a practice. The hunt is on.
And yes, I still have not heard from my doctor's office.
Alive and kicking, for now.
Rose
Hi Rose,
I'm one of those who couldn't handle Entocort - extreme achiness, headaches and then chest pains, I honestly thought I was having a heart attack. I've been gf for over a year and GI for almost as long (GI - I don't go to my GI anymore since he looks at me like I have 3 heads). Diet alone has helped so much, I'm still in trials, just figured out oat is out too. Good luck, hang in there.
I'm one of those who couldn't handle Entocort - extreme achiness, headaches and then chest pains, I honestly thought I was having a heart attack. I've been gf for over a year and GI for almost as long (GI - I don't go to my GI anymore since he looks at me like I have 3 heads). Diet alone has helped so much, I'm still in trials, just figured out oat is out too. Good luck, hang in there.
Becky
I totally disliked my GI at first because she gave me such a hard time about writing an order for EnteroLab. I hated the fact that I met her at my colonoscopy. She told me she had so many patients she couldn't and/or wouldn't read at EnteroLab.com. She finally spoke to the EL nurse on the phone.
I stopped my husband from going to her. I tried to get DH's new doc to take me but he wouldn't. He said I was already under treatment. HA, only by Tex and the PP.
I stopped my husband from going to her. I tried to get DH's new doc to take me but he wouldn't. He said I was already under treatment. HA, only by Tex and the PP.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Well I finally heard from my GI's office - at 3:30 pm yesterday and the nurse was of no help at all. She told me that my dr left town for a week yesterday morning (even though I called Wednesday morning) and said that she did not know what the s/e were for Entocort and that she would have to talk to the NP. I told her that I wanted off the stuff and she said that she would talk to another GI in the office and "get back to me in a little bit." What a joke, I still have not heard from her.
Anyway, thanks for all of you thoughts on this.
Love Rose
Anyway, thanks for all of you thoughts on this.
Love Rose
Wow!
All I can do is shake my head after reading that, as I wonder about all the patients who trust him with their health, and their life, in some cases. What he did is totally irresponsible.
Love,
Tex
All I can do is shake my head after reading that, as I wonder about all the patients who trust him with their health, and their life, in some cases. What he did is totally irresponsible.
Love,
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.
Tex,
I would agree and how I wish you made house calls. I have learned so much from you and the PP. As you probably have guessed, I have still not heard back. I did not take any Entocort today and I still feel lousy (this morning I was dizzy and almost fell down the stairs), but I know it will take a couple of days to get this junk out of my system.
I was suppose to go to a follow up appointment on 3/3, but I have cancelled that one. I am just going to keep to a strict diet and hopefully "firm up."
Love,
Rose
I would agree and how I wish you made house calls. I have learned so much from you and the PP. As you probably have guessed, I have still not heard back. I did not take any Entocort today and I still feel lousy (this morning I was dizzy and almost fell down the stairs), but I know it will take a couple of days to get this junk out of my system.
I was suppose to go to a follow up appointment on 3/3, but I have cancelled that one. I am just going to keep to a strict diet and hopefully "firm up."
Love,
Rose
Rose,
Yes, the side effects should slowly disappear. After a few days they should be mostly gone, but there may still be a slight effect for a week or more. Please be very careful until it wears off. I believe that the main reason why Maggie stopped taking Entocort, is because she actually fell, and she was injured in the fall. That type of side effect can be very dangerous, obviously, especially if you're using a stairway.
The diet has worked very well for many of us. The key is to figure out all of your intolerances, and totally avoid them. Anytime you're not sure whether a particular food is safe, or if you have a question about anything else, please don't hesitate to ask, before you try it.
Hopefully, you'll be feeling much better by the time the weekend is over.
Love,
Tex
Yes, the side effects should slowly disappear. After a few days they should be mostly gone, but there may still be a slight effect for a week or more. Please be very careful until it wears off. I believe that the main reason why Maggie stopped taking Entocort, is because she actually fell, and she was injured in the fall. That type of side effect can be very dangerous, obviously, especially if you're using a stairway.
The diet has worked very well for many of us. The key is to figure out all of your intolerances, and totally avoid them. Anytime you're not sure whether a particular food is safe, or if you have a question about anything else, please don't hesitate to ask, before you try it.
Hopefully, you'll be feeling much better by the time the weekend is over.
Love,
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.
Tex,
I hope so, right now I feel really drugged and out there. Our house has 3 levels so I am always up and down the stairs. I am just being very careful and I am definitely not getting behind the wheel of the car. I use the hand rails anyway, but I am making sure of my footing. I am ordering the EL test this weekend. I just need to figure out what panel I need (a complete analysis I would think).
Love,
Rose
I hope so, right now I feel really drugged and out there. Our house has 3 levels so I am always up and down the stairs. I am just being very careful and I am definitely not getting behind the wheel of the car. I use the hand rails anyway, but I am making sure of my footing. I am ordering the EL test this weekend. I just need to figure out what panel I need (a complete analysis I would think).
Love,
Rose
Rose,
If you've been 100% gluten-free for a year or more, your body may not be producing any more gluten/gliadin antibodies, so that test wouldn't be able to detect any antibodies, even if you're sensitive to gluten. Of course, it would tell you if you are still unintentionally eating something that contains gluten, so that's one way to tell if your diet still contains any foods that contain traces of gluten.
The other tests, (for casein, eggs, soy, etc.), will only detect those antibodies if you have been eating those foods up to the previous week or two before you take the sample. IOW, if you stop eating dairy products, then about two weeks later, your body will no longer be producing a detectable level of antibodies to them, so the test would be worthless - it would show a false negative result. The fecal fat test is always valid, since it shows the amount of residual damage that is present in your intestines, based on fat absorption. And, the gene test is always accurate, of course, but it doesn't show that you actually have a disease, instead, it shows how susceptible you might be, to gluten-sensitive diseases.
Be aware that many/most insurance companies will not pay for stool tests, and the ones that do pay, require that the tests be ordered by a doctor. Most of us end up having to pay for the tests ourselves, but that situation is slowly changing, as more insurance companies become willing to pay for the tests.
Love,
Tex
If you've been 100% gluten-free for a year or more, your body may not be producing any more gluten/gliadin antibodies, so that test wouldn't be able to detect any antibodies, even if you're sensitive to gluten. Of course, it would tell you if you are still unintentionally eating something that contains gluten, so that's one way to tell if your diet still contains any foods that contain traces of gluten.
The other tests, (for casein, eggs, soy, etc.), will only detect those antibodies if you have been eating those foods up to the previous week or two before you take the sample. IOW, if you stop eating dairy products, then about two weeks later, your body will no longer be producing a detectable level of antibodies to them, so the test would be worthless - it would show a false negative result. The fecal fat test is always valid, since it shows the amount of residual damage that is present in your intestines, based on fat absorption. And, the gene test is always accurate, of course, but it doesn't show that you actually have a disease, instead, it shows how susceptible you might be, to gluten-sensitive diseases.
Be aware that many/most insurance companies will not pay for stool tests, and the ones that do pay, require that the tests be ordered by a doctor. Most of us end up having to pay for the tests ourselves, but that situation is slowly changing, as more insurance companies become willing to pay for the tests.
Love,
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.
Tex,
I have been GF & DF for 5 years and I just started eliminating soy last week (per you and Polly). I don't eat any products with eggs (I don't like them), so I guess EL tests aren't going to do me any good. I did do a 72 hour fecal fat analysis last May (let me tell you how much fun that was with 2 kids - they had a hay day with Mom's poop bucket) and it showed that I was malabsorbing fats.
Are there any other tests you can think of that would help me?
thanks,
Love,
Rose
I have been GF & DF for 5 years and I just started eliminating soy last week (per you and Polly). I don't eat any products with eggs (I don't like them), so I guess EL tests aren't going to do me any good. I did do a 72 hour fecal fat analysis last May (let me tell you how much fun that was with 2 kids - they had a hay day with Mom's poop bucket) and it showed that I was malabsorbing fats.
Are there any other tests you can think of that would help me?
thanks,
Love,
Rose
Rose,
I was thinking that you had told us that you had been on the diet for a number of years, already. I agree that the tests probably wouldn't be worth the cost and effort, unless you happen to be overlooking something in your diet, that might show up in the test results.
I'll bet the kids did get a kick out of that 72 hour sample collection project.
Since it showed that you were still malabsorbing fats after 5 years on the diet, obviously you still had a significant amount of small intestinal residual damage, (and probably still do, at this point). It's possible that soy, or some other allergen is/was causing that, but if avoiding soy doesn't bring some noticeable improvement in a few weeks, then obviously something else is causing that damage, and you might be ahead testing to see if some gluten is somehow sneaking into your diet. Unless you are cooking everything you eat from scratch, and everyone in the household is eating the same diet that you are, the risk of cross-contamination is rather high. It only takes a few specks of wheat flour dust in the air, to settle on some of your food, to cause significant intestinal damage. A few members have discovered that their symptoms were caused by using the same pots and pans for cooking their own food, that were used for someone else's food, that contained gluten. No matter how carefully dishes are washed, often tiny particles get by, and cause problems. Pans or dishes used for baking, are especially difficult to completely clean. Most of us find it necessary to use dedicated pots and pans, for the GF food.
Did your doctor do an upper endoscopy, and take biopsy samples of your duodenum, before you started the GF diet, in order to rule out celiac disease? With so much residual SI damage, I'm wondering if you might be a celiac. Of course, it's a moot point, now, since the treatment is the same. Anyway, the point is, if he used the classic celiac blood tests to rule out celiac disease, they are so notorious for giving false negative results, that the only truly reliable way to check for celiac disease, is by means of analyzing biopsy samples under the microscope, to look for damage to the villi of your small intestine.
I'm hoping that avoiding soy will do the trick, because if you already avoid eggs, about the only risk left is corn and yeast. Enterolab doesn't have a corn test, (yet), and I believe that it's generally true that the only way someone can test positive for yeast intolerance, is if they actually have a yeast overgrowth, (candida albicans), at the time of the test. Other than that, any other intolerances would put you in the rare category of those with the most severe intolerances. Individuals in that category almost always have double DQ genes, (such as double DQ1, or double DQ2, for example). IOW, Enterolab's gene molecular test might be beneficial, to rule out that possibililty. It's a simple test - all you do is rub a cotton swab on the inside of your cheeks, to gather DNA material, let it dry, and then put in in a special envelope and send it to the lab for analysis. As I recall, the test costs roughly $150. If you would like to see what the results of that test look like for some of us, you can see a compilation of results for some of our members who have had the test done, here:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=2645
As you can see from that data, the members who have double DQ genes, virtually always have the longest lists of intolerances listed in their profiles, and they have the most difficult times achieving remission, since they have so many intolerances to be tracked down, and eliminated from their diets. It doesn't do any good to ask any doctors about this issue, because I'll bet there aren't more than 5 or 6 of them in the entire world, who are aware of this genetic relationship, as it pertains to inflammatory bowel disease, let alone MC. Anyway, the gene test is one that can sometimes be very enlightening, when we're trying to figure out what other food intolerances we might need to consider, in order to achieve remission.
Love,
Tex
I was thinking that you had told us that you had been on the diet for a number of years, already. I agree that the tests probably wouldn't be worth the cost and effort, unless you happen to be overlooking something in your diet, that might show up in the test results.
I'll bet the kids did get a kick out of that 72 hour sample collection project.
Since it showed that you were still malabsorbing fats after 5 years on the diet, obviously you still had a significant amount of small intestinal residual damage, (and probably still do, at this point). It's possible that soy, or some other allergen is/was causing that, but if avoiding soy doesn't bring some noticeable improvement in a few weeks, then obviously something else is causing that damage, and you might be ahead testing to see if some gluten is somehow sneaking into your diet. Unless you are cooking everything you eat from scratch, and everyone in the household is eating the same diet that you are, the risk of cross-contamination is rather high. It only takes a few specks of wheat flour dust in the air, to settle on some of your food, to cause significant intestinal damage. A few members have discovered that their symptoms were caused by using the same pots and pans for cooking their own food, that were used for someone else's food, that contained gluten. No matter how carefully dishes are washed, often tiny particles get by, and cause problems. Pans or dishes used for baking, are especially difficult to completely clean. Most of us find it necessary to use dedicated pots and pans, for the GF food.Did your doctor do an upper endoscopy, and take biopsy samples of your duodenum, before you started the GF diet, in order to rule out celiac disease? With so much residual SI damage, I'm wondering if you might be a celiac. Of course, it's a moot point, now, since the treatment is the same. Anyway, the point is, if he used the classic celiac blood tests to rule out celiac disease, they are so notorious for giving false negative results, that the only truly reliable way to check for celiac disease, is by means of analyzing biopsy samples under the microscope, to look for damage to the villi of your small intestine.
I'm hoping that avoiding soy will do the trick, because if you already avoid eggs, about the only risk left is corn and yeast. Enterolab doesn't have a corn test, (yet), and I believe that it's generally true that the only way someone can test positive for yeast intolerance, is if they actually have a yeast overgrowth, (candida albicans), at the time of the test. Other than that, any other intolerances would put you in the rare category of those with the most severe intolerances. Individuals in that category almost always have double DQ genes, (such as double DQ1, or double DQ2, for example). IOW, Enterolab's gene molecular test might be beneficial, to rule out that possibililty. It's a simple test - all you do is rub a cotton swab on the inside of your cheeks, to gather DNA material, let it dry, and then put in in a special envelope and send it to the lab for analysis. As I recall, the test costs roughly $150. If you would like to see what the results of that test look like for some of us, you can see a compilation of results for some of our members who have had the test done, here:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=2645
As you can see from that data, the members who have double DQ genes, virtually always have the longest lists of intolerances listed in their profiles, and they have the most difficult times achieving remission, since they have so many intolerances to be tracked down, and eliminated from their diets. It doesn't do any good to ask any doctors about this issue, because I'll bet there aren't more than 5 or 6 of them in the entire world, who are aware of this genetic relationship, as it pertains to inflammatory bowel disease, let alone MC. Anyway, the gene test is one that can sometimes be very enlightening, when we're trying to figure out what other food intolerances we might need to consider, in order to achieve remission.
Love,
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.
Tex,
I did have an endoscopy about 4 1/2 years ago, but when it was done I was GF for about 6 months. I do not know if he did a biopsy or not. I also had a small bowel series done last May and the barium took a long time to get to my colon, but it did not show anything in the small bowel. When I had my blood test for celiac about 5 years ago, it came back negative, but at the time I took the test I was already gluten free (I had suspected celiac and went GF before I went to the dr).
I am sure that I have a lot of cross-contamination in my home. I am forever getting the kids sandwiches and snacks. I am the only one with the problems and the rest of the family eats gluten, dairy, you name it. I do use separate pots, pans, dishes and silverware than the rest of the family. I am constantly washing my hands and cleaning the kitchen.
Thanks for your input.
Love,
Rose
I did have an endoscopy about 4 1/2 years ago, but when it was done I was GF for about 6 months. I do not know if he did a biopsy or not. I also had a small bowel series done last May and the barium took a long time to get to my colon, but it did not show anything in the small bowel. When I had my blood test for celiac about 5 years ago, it came back negative, but at the time I took the test I was already gluten free (I had suspected celiac and went GF before I went to the dr).
I am sure that I have a lot of cross-contamination in my home. I am forever getting the kids sandwiches and snacks. I am the only one with the problems and the rest of the family eats gluten, dairy, you name it. I do use separate pots, pans, dishes and silverware than the rest of the family. I am constantly washing my hands and cleaning the kitchen.
Thanks for your input.
Love,
Rose