Hi,
I was just diagnosed w/ LC after a BRUTAL colonoscopy. Still recovering from that. This all began in April when our home well got contaminated. While I am glad to have a diagnosis, I am just reeling. So many problems, so much frustration, so much to learn. I thought after a few days and more reading I'd kind of find a mental balance point, but I have not. I lie in bed at night thinking about it, afraid to sleep for fear of- yeah, you know what.
I've gotten Tex's book and started it, and reading the info here, but feel more discouraged by what I learn. Example- Dr. put me on Budesonide 9 mg for a month, then 6 mg for a month then 3 for a month. This does not sound like a good plan from what I've read about the tapering down. She's assuring me I can go on a 6 wk tent primitive camping trip Dec. 1! This just doesn't match the info from you guys. She promised to discuss my diagnosis but instead had an assistant send me a Cleveland Clinic link on LC. She is not someone who will discuss other ideas, but do I jump to another practice before following her plan? It doesn't sound likely another Dr would be any different.
My husband and I have spent the last 2 yrs eliminating all processed food from our diet and raising the majority of our food. I've lost 50 lbs, but fear it will come back from Rx and this less healthy diet. We've always been foodies and love to cook all kinds of cuisines. I love to travel to far off places.. I just can't wrap me head around ever being able to do any of this.....where to start to get a handle on this??
Newbie needing some help
Re: Newbie needing some help
Hi,
Welcome to the group. If you're being confused by what you're hearing from your gastroenterologists, her assistant, and what you're reading, maybe this will allow you to understand what this disease boils down to:
Medical treatments for MC typically focus on the use of anti-inflammatory medications, and doctors 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 gastroenterologists 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) is caused by chronic inflammation. There are two ways the symptoms can be controlled.
1. Medications such as budesonide, or immune system suppressants. Unfortunately, not all patients respond to budesonide, and published medical research shows that 80% 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. So-called "biologics" are not what they're claimed to be. Although biologics are very risky for long-term health, many doctors prescribe 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, and their efficacy is usually short to medium term. 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 (in case you're considering using a biologic treatment):
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. If you want to control the disease without using any medications, then it's necessary to track down and eliminate every food that's causing your immune system to produce antibodies. This is important, because if we overlook a single allergen, (even trace amounts) the inflammation, and therefore the disease, will continue, regardless of what else we might do.
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. And when gluten is digested, the process results in the creation of hundreds of peptides. But although no one can completely digest gluten, that usually that doesn't matter. It only matters if a person has one or both of the genes that predispose to celiac disease (DQ2 and DQ8), or increased intestinal permeability (commonly known as leaky gut). But research shows that 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.
note that while lactose is a problem, it only causes poor digestion, it doesn't cause the immune system to produce antibodies. The reason most of us have to avoid all dairy products is because all dairy products contain the protein casein. And note that we react to many of the proteins in the common foods that we have eaten all our lives. Interestingly, we rarely react to the proteins in foods that we have rarely eaten prior to developing MC.
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 totally 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
And you may find the newsletter at the following link to be helpful if you're running out of treatment ideas:
https://www.microscopiccolitisfoundatio ... mplate.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 on this discussion and support forum at this location (in case you haven't already come across this information):
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 the disease, in most 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 celiac 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.
To put the disease into remission we have to totally avoid (100%) all gluten, casein (the main protein in milk and all dairy products), soy, and chicken eggs. After we're in remission, we can experiment with dairy-based foods to see if we react to them, and if we don't react, they can be added back into our diet. The same can be done with products containing soy, and chicken eggs. But we have to test foods one at a time for three days, before we can judge them to be safe.
I hope this helps,
Tex
Welcome to the group. If you're being confused by what you're hearing from your gastroenterologists, her assistant, and what you're reading, maybe this will allow you to understand what this disease boils down to:
Medical treatments for MC typically focus on the use of anti-inflammatory medications, and doctors 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 gastroenterologists 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) is caused by chronic inflammation. There are two ways the symptoms can be controlled.
1. Medications such as budesonide, or immune system suppressants. Unfortunately, not all patients respond to budesonide, and published medical research shows that 80% 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. So-called "biologics" are not what they're claimed to be. Although biologics are very risky for long-term health, many doctors prescribe 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, and their efficacy is usually short to medium term. 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 (in case you're considering using a biologic treatment):
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. If you want to control the disease without using any medications, then it's necessary to track down and eliminate every food that's causing your immune system to produce antibodies. This is important, because if we overlook a single allergen, (even trace amounts) the inflammation, and therefore the disease, will continue, regardless of what else we might do.
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. And when gluten is digested, the process results in the creation of hundreds of peptides. But although no one can completely digest gluten, that usually that doesn't matter. It only matters if a person has one or both of the genes that predispose to celiac disease (DQ2 and DQ8), or increased intestinal permeability (commonly known as leaky gut). But research shows that 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.
note that while lactose is a problem, it only causes poor digestion, it doesn't cause the immune system to produce antibodies. The reason most of us have to avoid all dairy products is because all dairy products contain the protein casein. And note that we react to many of the proteins in the common foods that we have eaten all our lives. Interestingly, we rarely react to the proteins in foods that we have rarely eaten prior to developing MC.
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 totally 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
And you may find the newsletter at the following link to be helpful if you're running out of treatment ideas:
https://www.microscopiccolitisfoundatio ... mplate.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 on this discussion and support forum at this location (in case you haven't already come across this information):
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 the disease, in most 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 celiac 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.
To put the disease into remission we have to totally avoid (100%) all gluten, casein (the main protein in milk and all dairy products), soy, and chicken eggs. After we're in remission, we can experiment with dairy-based foods to see if we react to them, and if we don't react, they can be added back into our diet. The same can be done with products containing soy, and chicken eggs. But we have to test foods one at a time for three days, before we can judge them to be safe.
I hope this helps,
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: Newbie needing some help
Thanks Tex for all that info and links. I'll continue to read and educate myself.
A few more questions-
-how do you deal with a Dr. who doesn't know these things?
- should I be changing Dr.s already?
-Do you guys even use Drs?
Also, I am 68 and have looked forward to travel etc. for a long time. How do you accept that your goals are now out of reach? Just wondering how others cope....any tips appreciated.
Again, thanks so much.
A few more questions-
-how do you deal with a Dr. who doesn't know these things?
- should I be changing Dr.s already?
-Do you guys even use Drs?
Also, I am 68 and have looked forward to travel etc. for a long time. How do you accept that your goals are now out of reach? Just wondering how others cope....any tips appreciated.
Again, thanks so much.
Re: Newbie needing some help
I'll try to answer your questions as best I can, but remember, were all different.
I hope this helps,
Tex
We have to try to get along with our doctors as best we can, because we may need them to order tests for us at some point in the future, and we may need them to write prescriptions. So when they recommend something that we don't agree with, we try to look interested, and mumble something like, "Let me think about that". It rarely does any good to argue with one's doctor, because they automatically assume that they know far more about medical issues than any patient possibly could (and normally that's true, for almost any patient, except for certain MC patients).akawow wrote:-how do you deal with a Dr. who doesn't know these things?
If you can't get along with your current doctor, it might be advisable to switch, but switching in order to try to find a doctor who understands this disease better, is usually "mission impossible".akawow wrote:- should I be changing Dr.s already?
Yes, for the reasons stated above, most of us have primary care doctors, at least, because as we get up in age, especially, other health issues are likely to come along, and even if they don't, we need those tests that doctors can order, in order to keep tabs on our important lab results. So we try not to burn any bridges in case we need help from a doctor, clinic, or the healthcare system in general, in the future.akawow wrote:-Do you guys even use Drs?
After we fine tune our diet, and we're able to calm the inflammation, and allow our digestive system to heal, most of us tend to get on with our lives. And although we may need to make certain concessions, because we have to have a squeaky clean diet, we can usually find a way to to accomplish that so that if we want, we can travel, by planning ahead to make sure that we've always got safe food available.akawow wrote:Also, I am 68 and have looked forward to travel etc. for a long time. How do you accept that your goals are now out of reach? Just wondering how others cope....any tips appreciated.
I hope this helps,
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: Newbie needing some help
Ok, this is probably a dumb question, but why does the elimination process take so darn long?
Re: Newbie needing some help
Also, when the loud gurgling starts, will it help to just stop eating?
( I am being very careful about what I'm eating, and very small amounts)
( I am being very careful about what I'm eating, and very small amounts)
Re: Newbie needing some help
No, that's definitely not a dumb question, because most of us have probably wondered the same thing. You've asked a question that will be answered in the Microscopic Colitis Foundation's Newsletter published on October 1. Consequently, I can't go into detail here, since that would preempt the information in the newsletter. Suffice to say that the damage done by inflammatory bowel diseases causes intestinal stem cell damage, which alters our genes and has drastic effects on the intestinal cell healing process.
The newsletter will be published in three days, so you can read all the details, then.
Regarding your question:
I hope this helps,
Tex
The newsletter will be published in three days, so you can read all the details, then.
Regarding your question:
Unusually loud digestive system noises are a characteristic of active MC, known as Borborygmi. They slowly disappear as we gain control of this disease. We all experience them, and no, it won't help to just stop eating, because then you will slowly run out of energy, continue to lose weight, get weaker and weaker, and risk dying of complications, starvation, and/or dehydration.akawow wrote:Also, when the loud gurgling starts, will it help to just stop eating?
I hope this helps,
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.