Happy I found y'all ... UNHAPPY about the reasoning behind the search! So here's the brief history: I've been diagnosed with IBS or "spastic colon" since childhood. However, I began having what your Board designates as "leaky gut" since hitting menopause. My internist was not concerned about fecal leakage, however, when I had a bout of explosive D upon returning from Costa Rica, she ordered stool sampling for giardiasis and a celiac disease test. Both came out negative. My gut settled down after I got off the high fiber diet that I had been following for 5 months. Yes, I gained all the weight that I'd lost back, however, I was no longer exploding! A good thing!!!!
Pushing out a few years later, I find I'm having several periodic exploding episodes over the course of each of those years. Internist informs me its my IBS kicking up.
Then this January, I drop into an everyday (and every night) routine of more episodes of exploding D than there are numbers in the national debt plus painful bloating. I meet with a gastroenterologist who does a stool sampling (negative) then a sigmoidoscopy (positive for LC). She places me on Budesonide 9mg daily for 4weeks, then 6mg daily for 2 weeks then 3mg for 2 weeks. After 96 hours from the first dose, I'm exploding D free!
For the next 8 weeks I eating my normal diet yet limiting spinach, lettuce, cheese and excluding all forms of alcohol as my doctor suggested. I finished my last pill and wait. 1 then 2 then 3 then OMG a full 14 days of no returning symptoms. I start making plans to see friends, family, etc. WHAMMY. On the 15th day, I am back to exploding D!
She's placed back on Budesonide. However, as I'm waiting for the script authorization, I started reading your posts:
1. How do I start an Elimination Diet if Budesonide, which is a corticosteroid, "masks" the reaction to a food?
2. Whose book is everyone talking about and what is its title? Where do I find it? Amazon?
3. Are there tests that provide an actual reliable list of food that I specifically cannot eat?
New to this!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome
and sympathies for your IBS/MC journey and you had to find us...
I will answer your questions:
1. easy!! stop all the known major MC triggers. Gluten, Dairy, Soy, Egg, Fibre (salads, raw fruit, raw veges)
the budesonide will be helping you but not fully masking reactions.
once you stop the major triggers, you will see small symptoms like discomfort, change in BM etc when you have too much of a trigger (rather than the major explosive D type reaction)
many here have major triggers, generally the gluten, dairy, etc that are avoided totally and most have sometimes triggers, foods that they can have small amounts of, but if they have large servings to too many servings in a short period, they will react.
in early days of healing we encourage bland, well cooked, small amount of ingredients type eating. Good protein sources with 2-3 safe vegetables.
soups and stews make good eating options (well cooked, easy to digest) avoid processed foods, and minimise intake of baked gluten free items
2. the book is Microscopic Colitis, written by Wayne Persky (user name on here as Tex) it is on the top right hand corner of the web page header, on every page of this forum
there is also info in the book section http://www.perskyfarms.com/phpBB2/viewforum.php?f=73
yes it is available on Amazon
3. there is enterolab testing that provides good guidelines of major triggers and some medium level triggers of common ingredients
here is the section of the forum with people results and discussions etc
http://www.perskyfarms.com/phpBB2/viewforum.php?f=67
http://www.perskyfarms.com/phpBB2/viewforum.php?f=56
not sure how much reading you have done, check out the posts aimed at new people, and the subsequent discussions. The success stories area is another good area to see what others did, how long it took etc..
hope this helps
and sympathies for your IBS/MC journey and you had to find us...
I will answer your questions:
1. easy!! stop all the known major MC triggers. Gluten, Dairy, Soy, Egg, Fibre (salads, raw fruit, raw veges)
the budesonide will be helping you but not fully masking reactions.
once you stop the major triggers, you will see small symptoms like discomfort, change in BM etc when you have too much of a trigger (rather than the major explosive D type reaction)
many here have major triggers, generally the gluten, dairy, etc that are avoided totally and most have sometimes triggers, foods that they can have small amounts of, but if they have large servings to too many servings in a short period, they will react.
in early days of healing we encourage bland, well cooked, small amount of ingredients type eating. Good protein sources with 2-3 safe vegetables.
soups and stews make good eating options (well cooked, easy to digest) avoid processed foods, and minimise intake of baked gluten free items
2. the book is Microscopic Colitis, written by Wayne Persky (user name on here as Tex) it is on the top right hand corner of the web page header, on every page of this forum
there is also info in the book section http://www.perskyfarms.com/phpBB2/viewforum.php?f=73
yes it is available on Amazon
3. there is enterolab testing that provides good guidelines of major triggers and some medium level triggers of common ingredients
here is the section of the forum with people results and discussions etc
http://www.perskyfarms.com/phpBB2/viewforum.php?f=67
http://www.perskyfarms.com/phpBB2/viewforum.php?f=56
not sure how much reading you have done, check out the posts aimed at new people, and the subsequent discussions. The success stories area is another good area to see what others did, how long it took etc..
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Disappointed,
Welcome to our Internet family. Your experience with the medical treatment of MC is very, very typical. Medications can mask the symptoms of MC, but they can't stop the inflammation that perpetuates the disease from being regenerated. That's why we've found a better way, by sharing our experiences here.
To expand on what Gabes wrote about the elimination diet, the idea behind the diet is to systematically "force" remission by avoiding all foods that are known to trigger MC symptoms for most members here. This will leave a very simple, bland diet that will include only a few foods, and it will allow the inflammation to fade away so that your gut can begin to actually heal. You have to be in remission before you can begin to test foods back into your diet, and the budesonide has to be pretty much out of your system. The actually trial and error food testing goes something like this:
After you have been in remission for a while (the longer the better) you can experiment with adding certain foods back into your diet, one at a time, for about 3 days before moving on to another experimental food. Obviously if you react to that food within the 3 days, then you scratch it off your list of potential foods. And you wait until after your digestive system has settled down for a few days at least, before introducing another food. If you don't have any reaction to a food for 3 days, then you can usually consider it to be safe. But yes, the budesonide has to be out of your system before it's safe to try to experiment with reintroducing foods into your diet. It can take a couple of months or more for all of the budesonide to be eliminated, but as you have found, much of it is gone after a couple of weeks.
To prevent a relapse of symptoms when we stop taking budesoniede, we have to avoid most of the worst inflammatory foods while taking budesonide, otherwise the gut will not do any actual healing, and a couple of weeks or so after the drug treatment regimen is ended (as you have discovered) the symptoms will relapse. If we wait until after we stop taking budesonide to begin the diet, there's no time to heal, so a relapse is almost certain to occur.
The lab that Gabes mentioned was founded by a gastroenterologist who developed MC himself, so he began to research the disease, and eventually founded the Lab. Please be aware that these tests are based on ELISA testing methods that detect IgA antibodies in stool. IgA antibody detection is by far the most reliable and most sensitive way to detect food sensitivities that affect the gut.
But anyone who happens to have selective IgA deficiency cannot use the tests because without the ability to produce normal quantities of immunoglobulin A, the EneroLab stool tests can produce false negative results. So if you know you have selective IgA deficiency, these tests will not work. About 1 in 500 people in the general population has selective IgA deficiency, but that risk increases to 1 in 300 for those who are sensitive to gluten (and almost all of us here are sensitive to gluten). If you want to eliminate that risk before ordering any tests, you can ask your doctor to rule out selective IgA deficiency. It's a simple blood test.
The elimination diet works, provided that you have the patience and dedication to do it right, and not try to cut any corners. Many MC patients prefer the tests over an elimination diet though because it is much faster and easier and it pretty well eliminates any doubt about whether or not certain foods are a problem. The test results eliminate a lot of guesswork.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. Your experience with the medical treatment of MC is very, very typical. Medications can mask the symptoms of MC, but they can't stop the inflammation that perpetuates the disease from being regenerated. That's why we've found a better way, by sharing our experiences here.
To expand on what Gabes wrote about the elimination diet, the idea behind the diet is to systematically "force" remission by avoiding all foods that are known to trigger MC symptoms for most members here. This will leave a very simple, bland diet that will include only a few foods, and it will allow the inflammation to fade away so that your gut can begin to actually heal. You have to be in remission before you can begin to test foods back into your diet, and the budesonide has to be pretty much out of your system. The actually trial and error food testing goes something like this:
After you have been in remission for a while (the longer the better) you can experiment with adding certain foods back into your diet, one at a time, for about 3 days before moving on to another experimental food. Obviously if you react to that food within the 3 days, then you scratch it off your list of potential foods. And you wait until after your digestive system has settled down for a few days at least, before introducing another food. If you don't have any reaction to a food for 3 days, then you can usually consider it to be safe. But yes, the budesonide has to be out of your system before it's safe to try to experiment with reintroducing foods into your diet. It can take a couple of months or more for all of the budesonide to be eliminated, but as you have found, much of it is gone after a couple of weeks.
To prevent a relapse of symptoms when we stop taking budesoniede, we have to avoid most of the worst inflammatory foods while taking budesonide, otherwise the gut will not do any actual healing, and a couple of weeks or so after the drug treatment regimen is ended (as you have discovered) the symptoms will relapse. If we wait until after we stop taking budesonide to begin the diet, there's no time to heal, so a relapse is almost certain to occur.
The lab that Gabes mentioned was founded by a gastroenterologist who developed MC himself, so he began to research the disease, and eventually founded the Lab. Please be aware that these tests are based on ELISA testing methods that detect IgA antibodies in stool. IgA antibody detection is by far the most reliable and most sensitive way to detect food sensitivities that affect the gut.
But anyone who happens to have selective IgA deficiency cannot use the tests because without the ability to produce normal quantities of immunoglobulin A, the EneroLab stool tests can produce false negative results. So if you know you have selective IgA deficiency, these tests will not work. About 1 in 500 people in the general population has selective IgA deficiency, but that risk increases to 1 in 300 for those who are sensitive to gluten (and almost all of us here are sensitive to gluten). If you want to eliminate that risk before ordering any tests, you can ask your doctor to rule out selective IgA deficiency. It's a simple blood test.
The elimination diet works, provided that you have the patience and dedication to do it right, and not try to cut any corners. Many MC patients prefer the tests over an elimination diet though because it is much faster and easier and it pretty well eliminates any doubt about whether or not certain foods are a problem. The test results eliminate a lot of guesswork.
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.
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Disappointed
- Posts: 16
- Joined: Wed May 18, 2016 5:56 am
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
the combo of being in AUstralia and not having the money I did not do the Enterolab tests.
following the advice of the people here it didnt take long to figure out major and medium triggers..
have fun with the new eating plan.
following the advice of the people here it didnt take long to figure out major and medium triggers..
have fun with the new eating plan.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama