Need help with microscopic colitis p
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Need help with microscopic colitis p
Please can anybody give me support with coping with microscopic colitis. I have been diagnosed with it and i am very frightened.
Re: Need help with microscopic colitis p
Microscopic colitis (MC) is a rather complex disease, but here's some basic information about it, in a nutshell:
Medical treatments for MC typically focus on the use of anti-inflammatory medications, and either minimize, or totally avoid treatments that properly incorporate dietary changes. Medications are only temporary treatments. They only address the symptoms, not the cause of MC. To stop the inflammation from recurring with each meal, we have to avoid every food or medication antigen that causes our immune system to produce antibodies. Some physicians are beginning to learn this but many of them are still way behind on the learning curve and they incorrectly insist that diet has nothing to do with the disease. In fact it has everything to do with not only microscopic colitis, but all inflammatory bowel diseases. Claiming that food has nothing to do with digestive diseases is a lot like claiming that breathing polluted air has nothing to do with respiratory diseases like asthma, COPD, and lung cancer.
For example, we've always recommended a low fiber diet, at least when trying to recover from microscopic colitis, to achieve remission. The medical community has continued to recommend fiber, although it's clearly contraindicated for treating an IBD. Recently, medical researchers have finally published some research data which proves that fiber increases the inflammation level, and therefore the severity of the disease, for patients who have an IBD. So probably, in about 10 years, most gastroenterologists will begin to recognize that fiber should not be recommended when treating inflammatory bowel diseases.
Microscopic colitis (MC), once diagnosed, is a lifetime disease. The disease is caused by chronic inflammation. There are two ways the symptoms can be controlled.
1. Medications such as budesonide. Unfortunately, published medical research shows that 85% of patients who respond to budesonide, relapse soon after the treatment is ended. And other research shows that budesonide becomes less effective each time a treatment is stopped and restarted, so that it eventually becomes ineffective. Therefore, medications are only temporary treatments. They only address the symptoms, not the cause of MC. Although many doctors prescribed one of the Biologics after budesonide fails to provide long-term relief, published research shows that only a relatively small percentage of MC patients are actually helped by this class of drugs. The Microscopic Colitis Foundation (MCF) published a newsletter on May 1, 2022 that analyzed the possible use of these drugs for treating MC. For your convenience, here's a link where you can either read or download a copy of that newsletter:
https://www.microscopiccolitisfoundatio ... fcb80f.pdf
2. Diet changes that eliminate the foods that are causing the inflammation. This is the only way of which we're aware, to safely provide reliable, long-term control of the disease. Diet changes can be used with or without medications.
The disease is caused by chronic inflammation of the mucosal lining of the intestines, but in many cases, the inflammation can be found at any point in the digestive tract, from mouth to anus, including any and all organs in the digestive system. The initial inflammation can be caused by infection, parasites, stress, certain medications, and a few other things. Research shows that the inflammation triggers increased intestinal porosity (leaky gut), and leaky gut leads to the development of food sensitivities. Once the inflammation triggers the disease, then the disease tends to perpetuate itself, due to the food sensitivities that are created as a result of the inflammation. To stop the inflammation from recurring with each meal, we have to avoid every food, medication, and supplement that's causing our immune system to produce antibodies. MC, including collagenous colitis (CC), lymphocytic colitis (LC), and at least 10 other known types of the disease, is usually not caused by food sensitivities, but food sensitivities tend to develop after the disease begins. The molecules of which food is composed, are long chains of amino acids. Normally, proper digestion reduces those long chains of amino acids to individual amino acids, or short chains of them, so that our body can then use them as nutrition, or building materials for new cells.
Peptides are simply medium-length chains of amino acids that are the result of incomplete digestion of a food molecule. No one can completely digest gluten, for example. But usually that doesn't matter. It only matters if a person has increased intestinal permeability (commonly known as leaky gut). But gluten sensitivity can cause leaky gut and this can allow partially-digested peptides from certain foods to enter the bloodstream, which provokes an immune system response (because those peptides are obviously not supposed to be in the blood). The immune system then begins to react to certain proteins in those foods every time they are eaten, thus causing chronic inflammation . This is why some of the foods that we have been eating for most of our life can suddenly begin to cause chronic inflammation by provoking our immune system to produce antibodies against them. Because of the inability to digest gluten, leaky gut makes all of us with this condition sensitive to gluten, which means that we have to totally avoid all foods that contain wheat, rye, barley, and for most of us, also oats. About two-thirds of us are also sensitive to cow's milk, which means that we have to avoid all dairy products. Over half of us are sensitive to soy and/or chicken eggs.
Similar to food sensitivities, certain drugs can also cause the immune system to produce antibodies that trigger MC symptoms. In some cases, just stopping the use of those drugs can bring remission of the MC symptoms. These drugs include antibiotics, NSAIDs, PPIs, SSRIs, SNRIs, statins, bisphosphonates, ACE inhibitors, beta blockers, and others. But in many cases, food sensitivities develop before the use of the drug is stopped, so the diet must also be changed in addition to avoiding the drug that causes the inflammation. But the bottom line is that if we stop the antibodies from being produced by avoiding the offending foods or drugs, then we can stop the inflammation from being produced and the symptoms will begin to fade away, as our digestive system heals. And the symptoms will stay away as long as we are very careful with our diet (and the medications we use).
The MCF has also published a newsletter with details on how to properly select a safe recovery diet. If you are interested in controlling your disease symptoms by diet changes, you might find the information in this newsletter to be helpful, for fine-tuning your diet. You can download or read a copy of that newsletter by clicking on the link below:
https://www.microscopiccolitisfoundatio ... 479987.pdf
You might find other issues of the newsletter to be helpful. Newsletters are published monthly, on or about the first of the month. You can sign up to receive the newsletters in an email, or read (or download) any of the back issues, on the newsletter page of our website. For your convenience, here's a direct link to that page:
https://www.microscopiccolitisfoundatio ... etter.html
Also, there are diet guidelines posted In another section of this forum:
viewforum.php?f=79
There is no one-size-fits-all diet that will control the disease, but contrary to the claims of the medical "experts", virtually every MC patient is sensitive to gluten. For most, it's a form of non-celiac gluten sensitivity, so that the celiac screening tests used by doctors are worthless for detecting the type of gluten sensitivity that is typically associated with MC or other IBDs. But non-celiac gluten sensitivity causes basically the same symptoms as celiac disease. Every patient has to customize their diet to fit their own specific food sensitivities. And note that stress (whether physical, chemical, or mental/psychological) has a major effect on MC. Very intense stress, or in many cases, chronic stress. can even trigger a relapse of symptoms in many cases. Therefore it's also important to find ways to minimize stress, otherwise stress can perpetuate the symptoms.
Many, many doctors have mistakenly informed many, many MC patients that they are not sensitive to gluten based on a negative celiac blood test result. The claim that a negative celiac test result means that a patient cannot be sensitive to gluten simply is not true, because doctors have no way to officially diagnose non-celiac gluten sensitivity. A positive celiac test result can confirm gluten sensitivity, but a negative celiac test result cannot rule out gluten sensitivity. Many doctors mistakenly believe that a negative celic blood test result rules out gluten sensitivity, but there is no medical justification for making that assumption, it's simply incorrect.
Not everyone loses weight because of MC, but it can cause severe weight loss for some patients. Regaining that weight is virtually impossible until the inflammation is brought under control. Once the inflammation is controlled, then healing will begin and it becomes much easier to gain weight.
Regardless of who is doing the cooking, be sure that there is no wheat flour in the house, because when the bag is opened, the dust goes everywhere, and everything is automatically contaminated with gluten, whether you realize it or not. If anyone in the house is still eating gluten, you may need to keep your plates, cooking utensils, etc. separate, in order to minimize the risk of cross-contamination with gluten. Never use the same cutting board, or wooden spoons, for example, because there are porous enough to become contaminated.
Welcome to the group, and I hope that some of this is helpful.
Tex
Medical treatments for MC typically focus on the use of anti-inflammatory medications, and either minimize, or totally avoid treatments that properly incorporate dietary changes. Medications are only temporary treatments. They only address the symptoms, not the cause of MC. To stop the inflammation from recurring with each meal, we have to avoid every food or medication antigen that causes our immune system to produce antibodies. Some physicians are beginning to learn this but many of them are still way behind on the learning curve and they incorrectly insist that diet has nothing to do with the disease. In fact it has everything to do with not only microscopic colitis, but all inflammatory bowel diseases. Claiming that food has nothing to do with digestive diseases is a lot like claiming that breathing polluted air has nothing to do with respiratory diseases like asthma, COPD, and lung cancer.
For example, we've always recommended a low fiber diet, at least when trying to recover from microscopic colitis, to achieve remission. The medical community has continued to recommend fiber, although it's clearly contraindicated for treating an IBD. Recently, medical researchers have finally published some research data which proves that fiber increases the inflammation level, and therefore the severity of the disease, for patients who have an IBD. So probably, in about 10 years, most gastroenterologists will begin to recognize that fiber should not be recommended when treating inflammatory bowel diseases.
Microscopic colitis (MC), once diagnosed, is a lifetime disease. The disease is caused by chronic inflammation. There are two ways the symptoms can be controlled.
1. Medications such as budesonide. Unfortunately, published medical research shows that 85% of patients who respond to budesonide, relapse soon after the treatment is ended. And other research shows that budesonide becomes less effective each time a treatment is stopped and restarted, so that it eventually becomes ineffective. Therefore, medications are only temporary treatments. They only address the symptoms, not the cause of MC. Although many doctors prescribed one of the Biologics after budesonide fails to provide long-term relief, published research shows that only a relatively small percentage of MC patients are actually helped by this class of drugs. The Microscopic Colitis Foundation (MCF) published a newsletter on May 1, 2022 that analyzed the possible use of these drugs for treating MC. For your convenience, here's a link where you can either read or download a copy of that newsletter:
https://www.microscopiccolitisfoundatio ... fcb80f.pdf
2. Diet changes that eliminate the foods that are causing the inflammation. This is the only way of which we're aware, to safely provide reliable, long-term control of the disease. Diet changes can be used with or without medications.
The disease is caused by chronic inflammation of the mucosal lining of the intestines, but in many cases, the inflammation can be found at any point in the digestive tract, from mouth to anus, including any and all organs in the digestive system. The initial inflammation can be caused by infection, parasites, stress, certain medications, and a few other things. Research shows that the inflammation triggers increased intestinal porosity (leaky gut), and leaky gut leads to the development of food sensitivities. Once the inflammation triggers the disease, then the disease tends to perpetuate itself, due to the food sensitivities that are created as a result of the inflammation. To stop the inflammation from recurring with each meal, we have to avoid every food, medication, and supplement that's causing our immune system to produce antibodies. MC, including collagenous colitis (CC), lymphocytic colitis (LC), and at least 10 other known types of the disease, is usually not caused by food sensitivities, but food sensitivities tend to develop after the disease begins. The molecules of which food is composed, are long chains of amino acids. Normally, proper digestion reduces those long chains of amino acids to individual amino acids, or short chains of them, so that our body can then use them as nutrition, or building materials for new cells.
Peptides are simply medium-length chains of amino acids that are the result of incomplete digestion of a food molecule. No one can completely digest gluten, for example. But usually that doesn't matter. It only matters if a person has increased intestinal permeability (commonly known as leaky gut). But gluten sensitivity can cause leaky gut and this can allow partially-digested peptides from certain foods to enter the bloodstream, which provokes an immune system response (because those peptides are obviously not supposed to be in the blood). The immune system then begins to react to certain proteins in those foods every time they are eaten, thus causing chronic inflammation . This is why some of the foods that we have been eating for most of our life can suddenly begin to cause chronic inflammation by provoking our immune system to produce antibodies against them. Because of the inability to digest gluten, leaky gut makes all of us with this condition sensitive to gluten, which means that we have to totally avoid all foods that contain wheat, rye, barley, and for most of us, also oats. About two-thirds of us are also sensitive to cow's milk, which means that we have to avoid all dairy products. Over half of us are sensitive to soy and/or chicken eggs.
Similar to food sensitivities, certain drugs can also cause the immune system to produce antibodies that trigger MC symptoms. In some cases, just stopping the use of those drugs can bring remission of the MC symptoms. These drugs include antibiotics, NSAIDs, PPIs, SSRIs, SNRIs, statins, bisphosphonates, ACE inhibitors, beta blockers, and others. But in many cases, food sensitivities develop before the use of the drug is stopped, so the diet must also be changed in addition to avoiding the drug that causes the inflammation. But the bottom line is that if we stop the antibodies from being produced by avoiding the offending foods or drugs, then we can stop the inflammation from being produced and the symptoms will begin to fade away, as our digestive system heals. And the symptoms will stay away as long as we are very careful with our diet (and the medications we use).
The MCF has also published a newsletter with details on how to properly select a safe recovery diet. If you are interested in controlling your disease symptoms by diet changes, you might find the information in this newsletter to be helpful, for fine-tuning your diet. You can download or read a copy of that newsletter by clicking on the link below:
https://www.microscopiccolitisfoundatio ... 479987.pdf
You might find other issues of the newsletter to be helpful. Newsletters are published monthly, on or about the first of the month. You can sign up to receive the newsletters in an email, or read (or download) any of the back issues, on the newsletter page of our website. For your convenience, here's a direct link to that page:
https://www.microscopiccolitisfoundatio ... etter.html
Also, there are diet guidelines posted In another section of this forum:
viewforum.php?f=79
There is no one-size-fits-all diet that will control the disease, but contrary to the claims of the medical "experts", virtually every MC patient is sensitive to gluten. For most, it's a form of non-celiac gluten sensitivity, so that the celiac screening tests used by doctors are worthless for detecting the type of gluten sensitivity that is typically associated with MC or other IBDs. But non-celiac gluten sensitivity causes basically the same symptoms as celiac disease. Every patient has to customize their diet to fit their own specific food sensitivities. And note that stress (whether physical, chemical, or mental/psychological) has a major effect on MC. Very intense stress, or in many cases, chronic stress. can even trigger a relapse of symptoms in many cases. Therefore it's also important to find ways to minimize stress, otherwise stress can perpetuate the symptoms.
Many, many doctors have mistakenly informed many, many MC patients that they are not sensitive to gluten based on a negative celiac blood test result. The claim that a negative celiac test result means that a patient cannot be sensitive to gluten simply is not true, because doctors have no way to officially diagnose non-celiac gluten sensitivity. A positive celiac test result can confirm gluten sensitivity, but a negative celiac test result cannot rule out gluten sensitivity. Many doctors mistakenly believe that a negative celic blood test result rules out gluten sensitivity, but there is no medical justification for making that assumption, it's simply incorrect.
Not everyone loses weight because of MC, but it can cause severe weight loss for some patients. Regaining that weight is virtually impossible until the inflammation is brought under control. Once the inflammation is controlled, then healing will begin and it becomes much easier to gain weight.
Regardless of who is doing the cooking, be sure that there is no wheat flour in the house, because when the bag is opened, the dust goes everywhere, and everything is automatically contaminated with gluten, whether you realize it or not. If anyone in the house is still eating gluten, you may need to keep your plates, cooking utensils, etc. separate, in order to minimize the risk of cross-contamination with gluten. Never use the same cutting board, or wooden spoons, for example, because there are porous enough to become contaminated.
Welcome to the group, and I hope that some of this is helpful.
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.
Re: Need help with microscopic colitis p
Hi, Worthy. MC is a scary disease but you're come to the right place for help on your journey. Feel free to ask questions and search the forums. I learned so much from this group and I am in remission because of them. I know it's difficult to imagine that you can get your life back, but you can. It takes persistence & determination, but you can do it!
Marcia
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou