Hi, I'm new to this forum and am very glad I found it, but I'm pretty overwhelmed with the amount of information and am not sure where to start!
I was diagnosed with MC back in August after finally caving and seeing a GI doc. I had half-heartedly tried the FODMAP diet back when my primary care doc thought it might be IBS, but I didn't see much in the way of results, and it was super hard to follow. After my MC diagnosis, I was put on Budesonide and responded pretty well to it, but the symptoms came back pretty much as soon as I stopped taking it, and I'm now back to where I was, going multiple times a day and not being able to really tie it to any particular food or type of food. I tested negative for celiac and other autoimmune diseases, as well as for bile acid malabsorption. I'm pretty sure I'm lactose intolerant, but I only eat small amounts of cheese and yogurt, which doesn't have a lot of lactose anyway.
I have no desire to go back on steroids long-term; I guess I'd be willing to try it again, but since I relapsed right away, it seems like just a temporary fix. I'm interested in trying diet and lifestyle alterations, but I don't know where to start, since I can't seem to find a correlation between symptoms and particular foods. I also am not historically very good at serious elimination diets -- my husband and I like to eat too much, and I can't ever seem to stick to a serious elimination diet like FODMAP.
Any tips about where I should start? There's a ton of good information on this forum, but there's SO much of it, I can't even find where to begin. Any help would be so appreciated -- and I'm so glad to find a group of people who know how frustrating this disease is, even if it isn't as "bad" as other IBDs.
New and overwhelmed
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Welcome to our Internet family. It's true that MC is not as bad as Crohn's and UC, but it's worse than celiac disease (which most people don't even realize is an IBD). And as "bad" diseases go, it's bad enough, for all practical purposes, because it's definitely a life-altering disease. Here's some basic information to get you headed in the right direction for your recovery program.
Drugs are not necessary for controlling MC, and as you have found, they are only able to temporarily mask the symptoms anyway, because they do not address the cause of the problem. Drugs can suppress the inflammation (after the inflammation is created), but the only way to get meaningful relief from the symptoms is to stop the inflammation from being generated in the first place
First, here's some background information about the disease:
Microscopic colitis is usually not caused by food sensitivities, but food sensitivities tend to develop after the disease begins. The foods that are responsible cause inflammation in the digestive system, and this causes the symptoms to continue as long as these particular foods remain in the diet. Gastroenterologists tend to prescribe one medication after another, hoping to somehow "cure" the disease, but they fail to treat the cause of the symptoms. So after the treatment ends, the symptoms relapse, almost every time.
The bottom line is, unfortunately, no medication can cure MC. In some cases, one or more of the medications commonly prescribed to treat the disease can mask the symptoms, but after the treatment ends, the symptoms almost always return. The only way to actually stop the inflammation that causes the disease and prevent it from reoccurring is to make diet changes that prevent the inflammation from being regenerated with each meal.
Here's how the food sensitivities begin:
Research shows that when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered. Gluten sensitivity causes increased intestinal permeability (also known as "leaky gut") and this allows 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. 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. Physicians are trained to treat disease by prescribing drugs, and none of them receive any significant amount of formal training in dietary treatment methods, so they are pretty much forced to treat MC by prescribing drugs. Fortunately, here and there a few gastroenterologists are beginning to learn about the diet connection, but in most areas of the country, progress is still very slow. Most doctors will deny that food or diet has anything to do with MC, and that is completely incorrect.
The inflammation that perpetuates the symptoms for MC patients is due to T cell infiltration into the intestinal lining (the mucosa) of the colon. These lymphocytes are expressed in response to antibodies produced as a result of food sensitivities. In most cases food sensitivities probably are not the reason why the disease developed initially, but once the sensitivities develop, then they tend to perpetuate the symptoms. This makes the disease very difficult to control unless certain diet changes are made.
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. And the symptoms will stay away as long as we are very careful with our diet (and the medications we use).
MC is a very complex disease, and it is not easy to control because of the fact that reliable long-term control requires diet changes that are are often unique to the individual. In other words, there is no one-size-fits-all diet that will control the disease. But 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.
Many, many doctors have mistakenly informed many, many MC patients that they are not sensitive to gluten based on a negative celiac test result. That 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. 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.
Treating this disease is rarely easy. For many of us it may be the biggest challenge that we will ever face. It requires major lifestyle changes and discipline in order to achieve and maintain remission by diet. Some patients find it very difficult to accept and adhere to the strict diet changes necessary to control the disease. For them, medications are their only option. And if medications are the only option to be considered, then experience shows that budesonide is currently the most practical choice for treating the disease. But unfortunately it doesn't work for everyone, and even when it does, it loses effectiveness with repeat treatments.
I have been able to stop my symptoms and maintain remission for almost 13 years now, by diet changes alone. I have never found it necessary to take a medication to treat MC. If you are interested in learning how to control your symptoms by diet alone, you can download some guidelines for getting started at the link below,
http://www.microscopiccolitisfoundation ... 070516.pdf
And there is a section on this forum with guidelines for recovery. Here's a link:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79
Yes, drastically changing our diet is something that all of us hate to do. We are creatures of habit, and we don't like to be forced to change. But choosing to change our diet in order to get our life back is not as unpalatable as being forced to change. And controlling the disease is far, far better than being afraid to leave the house. Basically we have a choice of changing our diet and getting our life back, or eating whatever we want and living close to the bathroom at all times.
Once we come to the realization that many of the foods that we used to eat are now poison to our body, it's easier to appreciate why we have to avoid them at all costs. Trust me, we can still enjoy life with MC. We have to focus on the foods that we can eat, and forget the foods that we cannot eat, because they are no longer a part of a healthy lifestyle.
And another important reason for changing our diet in order to prevent the inflammation from being regenerated with each meal is the fact that if we do not control the inflammation, we will almost surely continue to develop additional autoimmune diseases as time goes on. Inflammation is the basic cause of all disease, and for most people, food sensitivities are the main cause of system-wide inflammation.
I hope that some of this is helpful. Again, welcome aboard and please feel free to ask anything.
Tex
Welcome to our Internet family. It's true that MC is not as bad as Crohn's and UC, but it's worse than celiac disease (which most people don't even realize is an IBD). And as "bad" diseases go, it's bad enough, for all practical purposes, because it's definitely a life-altering disease. Here's some basic information to get you headed in the right direction for your recovery program.
Drugs are not necessary for controlling MC, and as you have found, they are only able to temporarily mask the symptoms anyway, because they do not address the cause of the problem. Drugs can suppress the inflammation (after the inflammation is created), but the only way to get meaningful relief from the symptoms is to stop the inflammation from being generated in the first place
First, here's some background information about the disease:
Microscopic colitis is usually not caused by food sensitivities, but food sensitivities tend to develop after the disease begins. The foods that are responsible cause inflammation in the digestive system, and this causes the symptoms to continue as long as these particular foods remain in the diet. Gastroenterologists tend to prescribe one medication after another, hoping to somehow "cure" the disease, but they fail to treat the cause of the symptoms. So after the treatment ends, the symptoms relapse, almost every time.
The bottom line is, unfortunately, no medication can cure MC. In some cases, one or more of the medications commonly prescribed to treat the disease can mask the symptoms, but after the treatment ends, the symptoms almost always return. The only way to actually stop the inflammation that causes the disease and prevent it from reoccurring is to make diet changes that prevent the inflammation from being regenerated with each meal.
Here's how the food sensitivities begin:
Research shows that when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered. Gluten sensitivity causes increased intestinal permeability (also known as "leaky gut") and this allows 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. 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. Physicians are trained to treat disease by prescribing drugs, and none of them receive any significant amount of formal training in dietary treatment methods, so they are pretty much forced to treat MC by prescribing drugs. Fortunately, here and there a few gastroenterologists are beginning to learn about the diet connection, but in most areas of the country, progress is still very slow. Most doctors will deny that food or diet has anything to do with MC, and that is completely incorrect.
The inflammation that perpetuates the symptoms for MC patients is due to T cell infiltration into the intestinal lining (the mucosa) of the colon. These lymphocytes are expressed in response to antibodies produced as a result of food sensitivities. In most cases food sensitivities probably are not the reason why the disease developed initially, but once the sensitivities develop, then they tend to perpetuate the symptoms. This makes the disease very difficult to control unless certain diet changes are made.
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. And the symptoms will stay away as long as we are very careful with our diet (and the medications we use).
MC is a very complex disease, and it is not easy to control because of the fact that reliable long-term control requires diet changes that are are often unique to the individual. In other words, there is no one-size-fits-all diet that will control the disease. But 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.
Many, many doctors have mistakenly informed many, many MC patients that they are not sensitive to gluten based on a negative celiac test result. That 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. 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.
Treating this disease is rarely easy. For many of us it may be the biggest challenge that we will ever face. It requires major lifestyle changes and discipline in order to achieve and maintain remission by diet. Some patients find it very difficult to accept and adhere to the strict diet changes necessary to control the disease. For them, medications are their only option. And if medications are the only option to be considered, then experience shows that budesonide is currently the most practical choice for treating the disease. But unfortunately it doesn't work for everyone, and even when it does, it loses effectiveness with repeat treatments.
I have been able to stop my symptoms and maintain remission for almost 13 years now, by diet changes alone. I have never found it necessary to take a medication to treat MC. If you are interested in learning how to control your symptoms by diet alone, you can download some guidelines for getting started at the link below,
http://www.microscopiccolitisfoundation ... 070516.pdf
And there is a section on this forum with guidelines for recovery. Here's a link:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79
Yes, drastically changing our diet is something that all of us hate to do. We are creatures of habit, and we don't like to be forced to change. But choosing to change our diet in order to get our life back is not as unpalatable as being forced to change. And controlling the disease is far, far better than being afraid to leave the house. Basically we have a choice of changing our diet and getting our life back, or eating whatever we want and living close to the bathroom at all times.
Once we come to the realization that many of the foods that we used to eat are now poison to our body, it's easier to appreciate why we have to avoid them at all costs. Trust me, we can still enjoy life with MC. We have to focus on the foods that we can eat, and forget the foods that we cannot eat, because they are no longer a part of a healthy lifestyle.
And another important reason for changing our diet in order to prevent the inflammation from being regenerated with each meal is the fact that if we do not control the inflammation, we will almost surely continue to develop additional autoimmune diseases as time goes on. Inflammation is the basic cause of all disease, and for most people, food sensitivities are the main cause of system-wide inflammation.
I hope that some of this is helpful. 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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8330
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
hello and welcome!!
Tex has provided the info and links that I would reply with
take a deep breath, take your time to read through the posts etc.
another good area is our members success stories area, here you will see what others have done, how long it took and the benefits it provided.
Alot of us were big 'foodies' before MC came along - so yes it is a big adjustment for you and your husband, but life with minimal symptoms is worth the change.
hope this helps
Tex has provided the info and links that I would reply with
take a deep breath, take your time to read through the posts etc.
another good area is our members success stories area, here you will see what others have done, how long it took and the benefits it provided.
Alot of us were big 'foodies' before MC came along - so yes it is a big adjustment for you and your husband, but life with minimal symptoms is worth the change.
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
Thank you so much for this information and just for your general understanding and sympathy! I'm actually relieved to hear that the typical GI doc line of "diet doesn't help" is incorrect, because it doesn't make sense. I'm actually currently taking an SSRI, which might be one big factor. And I'm very willing to try a gluten-free diet given how it seems to be closely related. I hope I can take some steps to making this really, truly better -- I'm still a student now, but I'm graduating in May and will begin working full-time in August, so I want to get this dealt with before then!!
Again, thank you guys for your support and information. Very, very glad to have found this forum.
Again, thank you guys for your support and information. Very, very glad to have found this forum.
A New Member With Questions
I feel so fortunate to have found you all! I was diagnosed with LC in late May after 4-6 weeks of sudden watery d. I have been taking 9 mg/day of Budesonide since 5/23 and will be following up with my GI this Thursday. Since taking Budesonide, poops have been more normal - formed but still more soft/wet. When I started having issues in mid-April, my only symptom was watery d, generally once/day. The lab report from my colonoscopy stated that there was "mild" lymphocytic cells as a result of medication, infection or LC. I'm planning on asking my GI why we aren't looking into whether there is an infection... Any thoughts? I'm eating dairy/gluten/soy/egg free - I had been eating gluten free cereal/almond milk in the morning, turkey sandwich on gluten free bread, and chicken/turkey/beef with rice or baked potato and sometimes mushy green beans at night. After reading some of the posts, I switched it up today to try and get more protein - had chicken/rice for breakfast and lunch. A different way to start the day, but it was okay.
I got Wayne's book on Saturday and read it straight through in one sitting. I'm wondering - is it advisable to begin trying things like Allegra, Vit D, etc. now or should I hold off until I am at the point where I am tapering off of Budesonide. I bought some Epsom Salts yesterday and took a bath last night. I'm a little nervous about taking Magnesium as I don't want to initiate diarrhea. I'd love your suggestions on that. I had been taking Calcium/Vit D in chocolate form, which I now can't take (dairy), so I bought some capsules and have added them back into my routine. Any advice that you have for newbies is greatly appreciated. I have been reading through the message board checking other posts related to newcomers - I hope you don't mind me asking you all again.
I honestly have felt so alone trying to figure out the best way to proceed. I'm grateful to have found you all -
Pam
I got Wayne's book on Saturday and read it straight through in one sitting. I'm wondering - is it advisable to begin trying things like Allegra, Vit D, etc. now or should I hold off until I am at the point where I am tapering off of Budesonide. I bought some Epsom Salts yesterday and took a bath last night. I'm a little nervous about taking Magnesium as I don't want to initiate diarrhea. I'd love your suggestions on that. I had been taking Calcium/Vit D in chocolate form, which I now can't take (dairy), so I bought some capsules and have added them back into my routine. Any advice that you have for newbies is greatly appreciated. I have been reading through the message board checking other posts related to newcomers - I hope you don't mind me asking you all again.
I honestly have felt so alone trying to figure out the best way to proceed. I'm grateful to have found you all -
Pam
-
Gabes-Apg
- Emperor Penguin
- Posts: 8330
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Pam
welcome to the forum
(sympathies that you had to find us)
re your eating plan, I would avoid having too much processed items like cereal and gluten free bread for now. you are on the right track increasing protein, but your digestion will benefit from having well cooked vegetables instead
we have a suggested eating plan in our guidelines to recovery.
it may seem weird at first to have protein and rice /veges for breakfast but in time you will see the benefits. It takes 21 days to embrace 'new habits' so please stick with it.
http://perskyfarms.com/phpBB2/viewforum.php?f=79
For now, I would pass on the calcium supplement and focus on good quality Vit D3 and magnesium.
hope this helps.
keep reading and keep asking questions
happy healing
welcome to the forum
(sympathies that you had to find us)
re your eating plan, I would avoid having too much processed items like cereal and gluten free bread for now. you are on the right track increasing protein, but your digestion will benefit from having well cooked vegetables instead
we have a suggested eating plan in our guidelines to recovery.
it may seem weird at first to have protein and rice /veges for breakfast but in time you will see the benefits. It takes 21 days to embrace 'new habits' so please stick with it.
http://perskyfarms.com/phpBB2/viewforum.php?f=79
For now, I would pass on the calcium supplement and focus on good quality Vit D3 and magnesium.
hope this helps.
keep reading and keep asking questions
happy healing
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hello Pam,
Welcome to our Internet family. If you're concerned about oral magnesium possibly causing D, use topical magnesium. Either magnesium oil, or lotion, or Epsom foot soaks or adding Epsom salts to your bath water works, and it bypasses the digestive system, so it won't cause D.
Again, welcome aboard, and please feel free to ask anything.;
Tex
Welcome to our Internet family. If you're concerned about oral magnesium possibly causing D, use topical magnesium. Either magnesium oil, or lotion, or Epsom foot soaks or adding Epsom salts to your bath water works, and it bypasses the digestive system, so it won't cause D.
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.
