How do I begin getting healthy?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
How do I begin getting healthy?
I've been on and off Entocourt for over a year. Just finished up Uceris for 2 months and was feeling so good. I really get my hopes up and then boom, the D starts. I'm going crazy trying to figure out what to do. My doctor keeps telling me it is not what I am eating but I have to believe it is. I'm going to try a different GI doctor but I'm afraid it will take awhile to get an appointment. Any recommendations of where I should start helping myself? Should I order the lab tests before seeing another doctor? Frustrated for sure!
Hi, Mackey. I would start with gluten and dairy and go from there. Tex's book in the upper right hand corner was a big help to me in determining which other foods to eliminate from my diet. I did testing with EnteroLab which further helped me. I'm two years post diagnosis and still finding out which foods cause issues for me. We are all different and there isn't "one diet fits all" but you will find a lot of information on the boards to help you figure out what works for you. Good luck on your journey.
Marcia
Marcia
Hi,
Marcia's post is right on target. If you do much reading here you will notice that despite the negative celiac test results that our doctors claim proves that we are not sensitive to gluten, virtually all of us here are extremely sensitive to gluten.
Most of us were not gluten-sensitive to begin with, but when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered. The primitive tests used by doctors to detect celiac disease will not detect the type of gluten sensitivity that most of us have with MC. Those tests are so insensitive that they will only detect gluten sensitivity for those of us who also have fully-developed celiac disease, and it takes years for the damage to become severe enough that the tests will detect celic disease, even if we have it. Most of us do not have celiac disease, but we are just as sensitive to gluten as any celiac. And once gluten sensitivity develops, it causes increased intestinal permeability, which allows partially-digested peptides from certain other foods to pass into the bloodstream. The immune system knows that those peptides shouldn't be there, so it begins producing antibodies to those peptides, so that we then begin to react to some of those foods, also.
And when those peptides are circulated in the blood, and they settle out in various joints and organs, they cause inflammation there also, resulting in the aches and pains, headaches, migraines, etc., that so many of us suffer from. When gluten peptides cross the blood/brain barrier, they cause brain fog, and neurological issues, such as peripheral neuropathy for some of us.
Sure, your doctors will deny that diet has anything to do with treating MC, because that's how they were trained in med school, and that's why they are unable to successfully treat the disease. They prescribe budesionide (Entocort or Uceris), and when the patient is weaned off the medication, a relapse of symptoms almost always occurs. The doctor will act surprised and usually either renew the prescription, or prescribe something much stronger (and more risky), or tell the patient that there is nothing more they can do.
Medications can temporarily mask the symptoms of MC, but unless diet changes are also made, as soon as the patient weans off the meds, the symptoms relapse. The only way to stop the symptoms permanently is to change the diet so that the inflammation is no longer being generated by the foods being eaten. The EnteroLab tests make it much easier to determine which foods to avoid, but the foods causing the problems can also be tracked down by doing an elimination diet, eating only a few foods known to be safe for most of us, and then after remission is achieved, other foods can be tested in the diet (one at a time) by trial and error to see if they can be safely added back into the diet. As Marcia pointed out, most of us are sensitive to gluten and dairy, and many of us are also sensitive to soy and/or eggs. Some of us are also sensitive to additional foods.
I have never taken any medications to treat my symptoms, but I have been in remission for over 11 years by diet changes alone. Many others here have used medications to mask their symptoms while they made diet changes that allowed their gut to heal. Most of us here rely on our doctors to diagnose the disease, order tests, and prescribe medications if we choose to use them, and then we treat our MC ourselves (by diet changes), so that we can get our symptoms under control and get on with our life.
Tex
Marcia's post is right on target. If you do much reading here you will notice that despite the negative celiac test results that our doctors claim proves that we are not sensitive to gluten, virtually all of us here are extremely sensitive to gluten.
Most of us were not gluten-sensitive to begin with, but when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered. The primitive tests used by doctors to detect celiac disease will not detect the type of gluten sensitivity that most of us have with MC. Those tests are so insensitive that they will only detect gluten sensitivity for those of us who also have fully-developed celiac disease, and it takes years for the damage to become severe enough that the tests will detect celic disease, even if we have it. Most of us do not have celiac disease, but we are just as sensitive to gluten as any celiac. And once gluten sensitivity develops, it causes increased intestinal permeability, which allows partially-digested peptides from certain other foods to pass into the bloodstream. The immune system knows that those peptides shouldn't be there, so it begins producing antibodies to those peptides, so that we then begin to react to some of those foods, also.
And when those peptides are circulated in the blood, and they settle out in various joints and organs, they cause inflammation there also, resulting in the aches and pains, headaches, migraines, etc., that so many of us suffer from. When gluten peptides cross the blood/brain barrier, they cause brain fog, and neurological issues, such as peripheral neuropathy for some of us.
Sure, your doctors will deny that diet has anything to do with treating MC, because that's how they were trained in med school, and that's why they are unable to successfully treat the disease. They prescribe budesionide (Entocort or Uceris), and when the patient is weaned off the medication, a relapse of symptoms almost always occurs. The doctor will act surprised and usually either renew the prescription, or prescribe something much stronger (and more risky), or tell the patient that there is nothing more they can do.
Medications can temporarily mask the symptoms of MC, but unless diet changes are also made, as soon as the patient weans off the meds, the symptoms relapse. The only way to stop the symptoms permanently is to change the diet so that the inflammation is no longer being generated by the foods being eaten. The EnteroLab tests make it much easier to determine which foods to avoid, but the foods causing the problems can also be tracked down by doing an elimination diet, eating only a few foods known to be safe for most of us, and then after remission is achieved, other foods can be tested in the diet (one at a time) by trial and error to see if they can be safely added back into the diet. As Marcia pointed out, most of us are sensitive to gluten and dairy, and many of us are also sensitive to soy and/or eggs. Some of us are also sensitive to additional foods.
I have never taken any medications to treat my symptoms, but I have been in remission for over 11 years by diet changes alone. Many others here have used medications to mask their symptoms while they made diet changes that allowed their gut to heal. Most of us here rely on our doctors to diagnose the disease, order tests, and prescribe medications if we choose to use them, and then we treat our MC ourselves (by diet changes), so that we can get our symptoms under control and get on with our life.
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.
Elimination Diet
Where can I find the elimination diet? Thanks for all the info so far.
Elimination Diet
Note that since that description of the elimination diet was written, we have discovered that a few of us are sensitive to chicken. Keep that in mind in case you continue to have symptoms after a reasonable amount of time has passed. Turkey can be substituted for chicken, because so far at least, no one here seems to be sensitive to turkey. Also, virtually no one is sensitive to lamb. In addition, wild game such as venison, rabbit, quail, pheasant, duck, goose,etc., are safe.
Good luck with the diet, and please don't hesitate to ask, anytime you have any questions.
Tex
Note that since that description of the elimination diet was written, we have discovered that a few of us are sensitive to chicken. Keep that in mind in case you continue to have symptoms after a reasonable amount of time has passed. Turkey can be substituted for chicken, because so far at least, no one here seems to be sensitive to turkey. Also, virtually no one is sensitive to lamb. In addition, wild game such as venison, rabbit, quail, pheasant, duck, goose,etc., are safe.
Good luck with the diet, and please don't hesitate to ask, anytime you have any questions.
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.