Hello, I came across this board this week and did some browsing- what a great source. I look forward to having the chance to communicate with people who can relate and thank you in advance to those that will share their advice and knowledge with me.
In a nutshell...
Daily morning D started for me over the summer. There were two things that my Doc and myself felt could be major contributing factors. I had two back to back miscarriages and right in between the two I was put on a Z pak to treat bronchitis. I was beyond upset and surprised by these miscarriages (I have two healthy children and fortunately did not have to deal with this in the past.) So when I shared the GI issues I was having with my doc he said it could be from the stress and physical changes from the miscarriages and/or side effects from the antibiotic. When I realized these symptoms (also bloated a lot, at a healthy weight but always feel that I look 4 months pregnant!) weren't going anywhere I scheduled more appointments and tests which eventually led to a colonoscopy in January which showed MC, collagenous. Currently, I am not taking any medication and after reading some of your posts I will begin my food journal and begin to eliminate triggers. I first tried Questran which was not effective and am working with insurance to try and get better coverage for Asacol. The communication from my GI doctor and his staff has been terrible and I'm very upset that I still don't have a set treatment plan or much advice at all, when Ive been suffering with daily D for 5 months straight now! My doctor also said "We mainly see this in people in their 50s and 60s." Not really sure what his intentions were with this comment or how that is supposed to help a woman in her thirties who is desperate to get this condition under control and move on from this nightmare. Ive gotten other vague statements from doc like, "this isn't as concerning as Chrons or UC, it can resolve on its own, but you may or may not have to be on medication forever..."
-Anyone diagnosed in their 30s? I'm told the cause is still unknown...but what does this community feel the reason for this is?
-Anyone take Asacol during pregnancy? Any issues? (Doc said it is class B and has been used during pregnancy for years. This still is a concern for me.)
-The only relief I have is when I take Immodium...but I don't want to over do that (Or I should try this consistently for a set amount of time and see if I'm back to normal coming off it?!... I know I need to address the inflammation aspect. Any pointers for this as I wait for the medication end of things to be sorted out. Thank you!
Newbie, 32 years old, recently diagnosed
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hello and welcome. I'll defer to the experts on this board to answer your substantive questions, but I wanted to let you know that I was diagnosed at age 37. The only thing that stopped the D for me was Entocort.
Hope that helps. The advice on this forum is very valuable and is the reason I am on the track to improvement.
Hope that helps. The advice on this forum is very valuable and is the reason I am on the track to improvement.
Hello Z,
Welcome to our Internet family. Yes, we have many members here who were diagnosed in their 30s or earlier. Our youngest member (her mom joined for her) was only two and a half years old when she was diagnosed. Your doc apparently has not seen very many MC patients because his understanding of the disease seems to be very outdated, but then poor understanding of the disease is rather common among gastroenterologists, unfortunately.
Many things contribute to the development of MC, but based on the experiences of the many members here, chronic stress seems to be a primary cause, or at the very least an important contributing cause. Most of us were perfectionists, overachievers, and highly-motivated individuals, or else chronic stress was a persistent ingredient in our lifestyle for some other reason.
Yes, Asacol has been used during pregnancy, but typically, it's not particularly effective for treating MC. And personally I don't consider any of the prescription drugs currently prescribed to treat MC as a good idea during pregnancy. That said, in most cases they can be used without undue risk (at least on a statistical basis).
Imodium is one of the safest medications that's helpful for living with MC. It won't treat the cause of the disease (inflammation), but it will slow down motility to remove much of the urgency associated with bowel movements (BMs) when MC is active. Many members use it while recovering to allow them to get out of the house to run errands, attend meetings, etc., where a bathroom may not be immediately available.
FYI, the anti-inflammatory medications (including the corticosteroids), and any other medications for that matter, do not treat the disease itself — like most medications, they only treat the symptoms. To prevent the symptoms from developing in the first place, we have to stop the inflammation from being regenerated regularly. Meds can mask the symptoms of the disease, but soon after a treatment regimen is ended, the symptoms almost always relapse.
Unfortunately physicians are not trained to recognize that digestive system diseases are almost always due to diet issues, so it's not surprising that they don't have any training on how to properly treat diseases by means of diet changes. They're only trained to diagnose diseases and prescribe drugs to treat them.
Drugs are not necessary for controlling MC, but they can be used to mask the symptoms to make life much more pleasant while the diet changes are healing the gut. MC is usually not caused by food sensitivities, but food sensitivities tend to develop after the disease begins. This happens because the inflammation associated with the disease causes increased intestinal permeability (aka leaky gut), and leaky gut leads to food sensitivities. These food sensitivities cause the inflammation to be perpetuated because additional inflammation is generated with each meal that includes one or more food sensitivities. And even after the offending foods are removed form the diet, it takes some time for the inflammation to subside to a level where the symptoms will begin to fade away.
Gastroenterologists 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. And for many patients, either the medications do not help, or they cause more problems than they treat.
Here's more detailed information on how the food sensitivities actually begin, if you are interested in more information:
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.
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. And the symptoms will stay away as long as we are very careful with our diet (and the medications we use).
I apologize for such a long-winded response, but colitis tends to be a very complex disease, far more complex than meets the eye. And it's not easy to control because of the fact that reliable long-term control requires diet changes that 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 or other IBDs.
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.
Regarding your unfortunate miscarriages: Have your doctors shared with you the likely reasons why those recurring miscarriages have occurred? The most common cause of miscarriages is a deficiency of one or more essential nutrients, primarily zinc, copper and magnesium. Virtually everyone who has MC has a magnesium deficiency. This happens because magnesium deficiency is not on the radar of most doctors and the reason it isn't is because they don't understand that the test they always order to test magnesium levels in the blood (the serum test) is almost completely useless. That test will virtually always show a normal blood level of magnesium, now matter how depleted of magnesium the cells in the body may be (only about 1 % of our magnesium is in our blood).
Something like 80 % of the general population is magnesium deficient, and IBDs further deplete magnesium. Stress depletes magnesium. Pregnancy depletes magnesium. Antibiotics deplete magnesium. Even coffee depletes magnesium. You get the idea, I'm sure.
The other issue that comes to mind in your case is gluten sensitivity. Most of us here have been told by our doctors that we are not gluten-sensitive (based on a negative celiac test result). Yet virtually every one of us here is just as sensitive to gluten as the average celiac because our doctors have no official test that can diagnose non-celiac gluten sensitivity and they seem to be willing to ignore that little problem. But my point is that gluten sensitivity is strongly associated with miscarriages.
I hope that some of this is helpful. Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. Yes, we have many members here who were diagnosed in their 30s or earlier. Our youngest member (her mom joined for her) was only two and a half years old when she was diagnosed. Your doc apparently has not seen very many MC patients because his understanding of the disease seems to be very outdated, but then poor understanding of the disease is rather common among gastroenterologists, unfortunately.
Many things contribute to the development of MC, but based on the experiences of the many members here, chronic stress seems to be a primary cause, or at the very least an important contributing cause. Most of us were perfectionists, overachievers, and highly-motivated individuals, or else chronic stress was a persistent ingredient in our lifestyle for some other reason.
Yes, Asacol has been used during pregnancy, but typically, it's not particularly effective for treating MC. And personally I don't consider any of the prescription drugs currently prescribed to treat MC as a good idea during pregnancy. That said, in most cases they can be used without undue risk (at least on a statistical basis).
Imodium is one of the safest medications that's helpful for living with MC. It won't treat the cause of the disease (inflammation), but it will slow down motility to remove much of the urgency associated with bowel movements (BMs) when MC is active. Many members use it while recovering to allow them to get out of the house to run errands, attend meetings, etc., where a bathroom may not be immediately available.
FYI, the anti-inflammatory medications (including the corticosteroids), and any other medications for that matter, do not treat the disease itself — like most medications, they only treat the symptoms. To prevent the symptoms from developing in the first place, we have to stop the inflammation from being regenerated regularly. Meds can mask the symptoms of the disease, but soon after a treatment regimen is ended, the symptoms almost always relapse.
Unfortunately physicians are not trained to recognize that digestive system diseases are almost always due to diet issues, so it's not surprising that they don't have any training on how to properly treat diseases by means of diet changes. They're only trained to diagnose diseases and prescribe drugs to treat them.
Drugs are not necessary for controlling MC, but they can be used to mask the symptoms to make life much more pleasant while the diet changes are healing the gut. MC is usually not caused by food sensitivities, but food sensitivities tend to develop after the disease begins. This happens because the inflammation associated with the disease causes increased intestinal permeability (aka leaky gut), and leaky gut leads to food sensitivities. These food sensitivities cause the inflammation to be perpetuated because additional inflammation is generated with each meal that includes one or more food sensitivities. And even after the offending foods are removed form the diet, it takes some time for the inflammation to subside to a level where the symptoms will begin to fade away.
Gastroenterologists 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. And for many patients, either the medications do not help, or they cause more problems than they treat.
Here's more detailed information on how the food sensitivities actually begin, if you are interested in more information:
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.
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. And the symptoms will stay away as long as we are very careful with our diet (and the medications we use).
I apologize for such a long-winded response, but colitis tends to be a very complex disease, far more complex than meets the eye. And it's not easy to control because of the fact that reliable long-term control requires diet changes that 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 or other IBDs.
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.
Regarding your unfortunate miscarriages: Have your doctors shared with you the likely reasons why those recurring miscarriages have occurred? The most common cause of miscarriages is a deficiency of one or more essential nutrients, primarily zinc, copper and magnesium. Virtually everyone who has MC has a magnesium deficiency. This happens because magnesium deficiency is not on the radar of most doctors and the reason it isn't is because they don't understand that the test they always order to test magnesium levels in the blood (the serum test) is almost completely useless. That test will virtually always show a normal blood level of magnesium, now matter how depleted of magnesium the cells in the body may be (only about 1 % of our magnesium is in our blood).
Something like 80 % of the general population is magnesium deficient, and IBDs further deplete magnesium. Stress depletes magnesium. Pregnancy depletes magnesium. Antibiotics deplete magnesium. Even coffee depletes magnesium. You get the idea, I'm sure.
The other issue that comes to mind in your case is gluten sensitivity. Most of us here have been told by our doctors that we are not gluten-sensitive (based on a negative celiac test result). Yet virtually every one of us here is just as sensitive to gluten as the average celiac because our doctors have no official test that can diagnose non-celiac gluten sensitivity and they seem to be willing to ignore that little problem. But my point is that gluten sensitivity is strongly associated with miscarriages.
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.
Z,
I just wanted to say welcome. I have nothing to add, Wayne has summed it up. He along with this board of friends has saved my life with their experiences and knowledge. Please take your time, read, read and read. Getting your life back is very doable and you are young which is a plus in my opinion.
Love,
Connie
I just wanted to say welcome. I have nothing to add, Wayne has summed it up. He along with this board of friends has saved my life with their experiences and knowledge. Please take your time, read, read and read. Getting your life back is very doable and you are young which is a plus in my opinion.
Love,
Connie
Live, Laugh & Love Much
Thank you for the warm welcomes and thank you for all of that info. Tex! A question regarding your comment about magnesium deficiency - what is the best way to test the level if not the serum blood test? I read a few different methods, but was wondering if you have experience with one.
I'm disappointed to hear that asacol hasn't been successful treatment for many since I have been on countless phone calls with gi, insurance company, and pharm trying to work that out this past week. I'd rather go the non med route anyway but will likely give this a try too if possible. Crazy that my doctor gave no attention to dietary changes when I specifically asked if I should be making any changes. Have many of you found success strictly with dietary change?
Regarding the miscarriages- I have done the recurrent pregnancy loss panel, endometrial biopsy, and several ultrasounds. All looks normal but I did learn that I tested positive for the ANA test one week (borderline) was retested the following week and it was negative. This was a big concern to me due to a strong family history with thyroid disease and rheumatoid arthritis. I had not yet learned of the colleganous colitis at that time. Also learned I am positive for one copy of the c677t varaiant and one copy of the a1298c variant (doc said this would not contribute to pregnancy outcome), Low vitamin D, and low RDW.
Maybe I should request zinc and magnesium levels be checked? At this point doc has given the go ahead to try and conceive again.
I'm disappointed to hear that asacol hasn't been successful treatment for many since I have been on countless phone calls with gi, insurance company, and pharm trying to work that out this past week. I'd rather go the non med route anyway but will likely give this a try too if possible. Crazy that my doctor gave no attention to dietary changes when I specifically asked if I should be making any changes. Have many of you found success strictly with dietary change?
Regarding the miscarriages- I have done the recurrent pregnancy loss panel, endometrial biopsy, and several ultrasounds. All looks normal but I did learn that I tested positive for the ANA test one week (borderline) was retested the following week and it was negative. This was a big concern to me due to a strong family history with thyroid disease and rheumatoid arthritis. I had not yet learned of the colleganous colitis at that time. Also learned I am positive for one copy of the c677t varaiant and one copy of the a1298c variant (doc said this would not contribute to pregnancy outcome), Low vitamin D, and low RDW.
Maybe I should request zinc and magnesium levels be checked? At this point doc has given the go ahead to try and conceive again.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome to our group (our family!)
and sympathies that you had to find us
-
Cause of MC- Tex has provided great info on this
in relation to the miscarrage - there is strong indications that methylation issues (ie nutrient deficiencies) are key element.
we have info on methylation in this section http://www.perskyfarms.com/phpBB2/viewforum.php?f=78
-
-
we have some guidelines written out that can help with this
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79
hope this helps
and sympathies that you had to find us
-
we have many people of all ages! I was 39 when diagnosed, there are babies, toddlers, people in their 20's and 30's that have been part of this group over the past 10 yearsAnyone diagnosed in their 30s? I'm told the cause is still unknown...but what does this community feel the reason for this is?
Cause of MC- Tex has provided great info on this
in relation to the miscarrage - there is strong indications that methylation issues (ie nutrient deficiencies) are key element.
we have info on methylation in this section http://www.perskyfarms.com/phpBB2/viewforum.php?f=78
-
for this one, it might be worth using our search function to find previous discussions / people. in the search function use word 'Asacol' and then 'Pregnancy'Anyone take Asacol during pregnancy? Any issues? (Doc said it is class B and has been used during pregnancy for years. This still is a concern for me.)
-
to address the inflammation aspect - bland low inflammation eating plan and as Tex mentions above Vit D3 and magnesium supplementation.The only relief I have is when I take Immodium...but I don't want to over do that (Or I should try this consistently for a set amount of time and see if I'm back to normal coming off it?!... I know I need to address the inflammation aspect. Any pointers for this as I wait for the medication end of things to be sorted out. Thank you!
we have some guidelines written out that can help with this
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79
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
Z,
Precious few labs in this country offer the best tests for magnesium level, but the red blood cell (RBC) test is readily available (even at walk-in labs, I believe), though doctors rarely order it. As I mentioned, about 1 % or our magnesium is in our blood (serum), a little over 60 % is stored in bone, and the rest is stored in other cells in the body, including the red blood cells in our blood. The RBC test gives a much more reliable estimate of magnesium levels in the body. But don't take a magnesium supplement before the blood draw on the day of the test because it will skew the results.
I didn't mean to imply that Asacol wasn't helpful. It's just not as effective as budesonide, and it's usually slower to work. It's not ideal for long-term use because mesalamine (the active ingredient in Asacol) carries a slight risk of causing pancreatitis, but most doctors probably aren't even aware of that because it's only a slight risk. A number of case studies have been published about the problem, but the FDA has never ordered a black box warning so it must be considered rare. It's not a risk for short or medium-term use, so you should be OK with it.
A high percentage of us successfully use diet changes to control our MC. I've used it for over 13 years now. I've never used any meds for MC because MC is very closely related to celiac disease. We're just sensitive to more foods in addition to gluten. Some members use a med to help mask their symptoms while their diet changes are healing their gut. It can take 6 months to a year for the intestines to heal enough for stable remission in many cases (though some are much luckier), so taking a med to help suppress the symptoms initially can make life much more pleasant. But we have to make the diet change early on, or we will relapse when we wean off the med.
You're very welcome.
Tex
Precious few labs in this country offer the best tests for magnesium level, but the red blood cell (RBC) test is readily available (even at walk-in labs, I believe), though doctors rarely order it. As I mentioned, about 1 % or our magnesium is in our blood (serum), a little over 60 % is stored in bone, and the rest is stored in other cells in the body, including the red blood cells in our blood. The RBC test gives a much more reliable estimate of magnesium levels in the body. But don't take a magnesium supplement before the blood draw on the day of the test because it will skew the results.
I didn't mean to imply that Asacol wasn't helpful. It's just not as effective as budesonide, and it's usually slower to work. It's not ideal for long-term use because mesalamine (the active ingredient in Asacol) carries a slight risk of causing pancreatitis, but most doctors probably aren't even aware of that because it's only a slight risk. A number of case studies have been published about the problem, but the FDA has never ordered a black box warning so it must be considered rare. It's not a risk for short or medium-term use, so you should be OK with it.
A high percentage of us successfully use diet changes to control our MC. I've used it for over 13 years now. I've never used any meds for MC because MC is very closely related to celiac disease. We're just sensitive to more foods in addition to gluten. Some members use a med to help mask their symptoms while their diet changes are healing their gut. It can take 6 months to a year for the intestines to heal enough for stable remission in many cases (though some are much luckier), so taking a med to help suppress the symptoms initially can make life much more pleasant. But we have to make the diet change early on, or we will relapse when we wean off the med.
You're very welcome.
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.
Hi Z,
You have gotten some really good information from Tex and Gabes.
I had written an answer for you, but when I hit the «submit»-button I was sent to the log in page, and it turned out that I had not been logged in, so all I had written disappeared. But, I’ll try to memorize.
The three most important things on the road to healing – in my opinion – are:
Magnesium, Vitamin D3, B-vitamins.
You may take all these with supplements, but the most successful way is to achieve healing through nutrient dense food.
Make bone broth, from either oxtails, marrow bones or simply cattle bones. Broth is a tremendous source of healthy nutrients. Besides vitamins and mainly minerals, bone broth is a very good source of glycosaminglycants, like chondroitin, glucosamine, hyaluronic acid, heparine, keratane etc which are not broken down in the body to smaller peptides or simple amino acids, but survive our stomach acid in intact form and goes directly from our blood to our skeleton and all over in our body, where these are needed.
Spray magnesium oil on your body; 30-40 splashes per day, or take Epsom salt baths or foot soaks. There is also a liquid magnesium oil to be taken orally on the market. Vanessa has made us aware of a very good product, that I have been taking for 4 months now with very good results. Also, unrefined sea salt is a good source. I take 3-4 teaspoons each day with some fruit beverage. Take the opportunity to swim in the ocean as soon as you get the possibility!
Vitamin D3 is vital, and fermented cod liver oil is a very good source. Also, stay outside in the sun as much as you can.
B-vitamins: Raw egg yolks from organic eggs. 3-4 yolks per day has helped me getting my B12 up to a good level.
I’m not sure which of these three things turned my digestion to solid stools and ended my problems, but after having been sitting on the porcelaine for a couple of years the above, together with a gluten free and casein free diet and eating mostly well cooked protein rich food, I am finally able to live a «normal» life. As healing continues, I am also capable of digesting meat that has just been cooked a few seconds! As we know, heat destroys many of the good nutrition in all food.
Lilja
You have gotten some really good information from Tex and Gabes.
I had written an answer for you, but when I hit the «submit»-button I was sent to the log in page, and it turned out that I had not been logged in, so all I had written disappeared. But, I’ll try to memorize.
The three most important things on the road to healing – in my opinion – are:
Magnesium, Vitamin D3, B-vitamins.
You may take all these with supplements, but the most successful way is to achieve healing through nutrient dense food.
Make bone broth, from either oxtails, marrow bones or simply cattle bones. Broth is a tremendous source of healthy nutrients. Besides vitamins and mainly minerals, bone broth is a very good source of glycosaminglycants, like chondroitin, glucosamine, hyaluronic acid, heparine, keratane etc which are not broken down in the body to smaller peptides or simple amino acids, but survive our stomach acid in intact form and goes directly from our blood to our skeleton and all over in our body, where these are needed.
Spray magnesium oil on your body; 30-40 splashes per day, or take Epsom salt baths or foot soaks. There is also a liquid magnesium oil to be taken orally on the market. Vanessa has made us aware of a very good product, that I have been taking for 4 months now with very good results. Also, unrefined sea salt is a good source. I take 3-4 teaspoons each day with some fruit beverage. Take the opportunity to swim in the ocean as soon as you get the possibility!
Vitamin D3 is vital, and fermented cod liver oil is a very good source. Also, stay outside in the sun as much as you can.
B-vitamins: Raw egg yolks from organic eggs. 3-4 yolks per day has helped me getting my B12 up to a good level.
I’m not sure which of these three things turned my digestion to solid stools and ended my problems, but after having been sitting on the porcelaine for a couple of years the above, together with a gluten free and casein free diet and eating mostly well cooked protein rich food, I am finally able to live a «normal» life. As healing continues, I am also capable of digesting meat that has just been cooked a few seconds! As we know, heat destroys many of the good nutrition in all food.
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Lilja,
If your browser ever logs you out like that again, here's how to save your post:
1. Your post is still there, you just have to back up in order to see it.
2. Hit the "Back button" in your browser to take you back to the page with your post and leave that page open.
3 Open a new browser tab.
4. Open a second copy of this website in that new browser tab either by clicking on a shortcut that you have saved, or by doing a search for it.
5. Log in to the forum in the new tab.
6. Go back to the first tab where your post is located and submit the post. You will see a message that says (I don't recall the exact details) something about your post not being allowed, or being incomplete, with instructions to submit it again. Submit it again and your post will be entered.
7. If you want to read the other new posts that you missed by being logged out, hit the back button again (as many times as necessary) to get back to the page where you can select another new post (flagged as new) to read. And you can repeat that until you're able to read all the posts. If you go forward though (instead of backing up), you will lose the ability to read those posts that were flagged as new when you were logged out, and you will only see the posts that are flagged as new after you were logged in the second time.
I hope I haven't just confused the issue.
By the way, your post was excellent.
Tex
If your browser ever logs you out like that again, here's how to save your post:
1. Your post is still there, you just have to back up in order to see it.
2. Hit the "Back button" in your browser to take you back to the page with your post and leave that page open.
3 Open a new browser tab.
4. Open a second copy of this website in that new browser tab either by clicking on a shortcut that you have saved, or by doing a search for it.
5. Log in to the forum in the new tab.
6. Go back to the first tab where your post is located and submit the post. You will see a message that says (I don't recall the exact details) something about your post not being allowed, or being incomplete, with instructions to submit it again. Submit it again and your post will be entered.
7. If you want to read the other new posts that you missed by being logged out, hit the back button again (as many times as necessary) to get back to the page where you can select another new post (flagged as new) to read. And you can repeat that until you're able to read all the posts. If you go forward though (instead of backing up), you will lose the ability to read those posts that were flagged as new when you were logged out, and you will only see the posts that are flagged as new after you were logged in the second time.
I hope I haven't just confused the issue.
By the way, your post was excellent.
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.
Dear Z,
I am able to manage MC and control my symptoms better with diet than with medication. I feel very fortunate because I don't have to deal with any medication side effects. Aside from the valuable advice on here I found the Enterolab tests (stool tests for food sensitivities that you can order yourself) and Tex' book (you can see it in the upper right hand corner, as far as I know still the only book about MC) the most helpful.
I am on a strict diet, take vitamin D and magnesium, and I am able to lead a very active life.
Good luck with everything!
Love, Patricia
I am able to manage MC and control my symptoms better with diet than with medication. I feel very fortunate because I don't have to deal with any medication side effects. Aside from the valuable advice on here I found the Enterolab tests (stool tests for food sensitivities that you can order yourself) and Tex' book (you can see it in the upper right hand corner, as far as I know still the only book about MC) the most helpful.
I am on a strict diet, take vitamin D and magnesium, and I am able to lead a very active life.
Good luck with everything!
Love, Patricia
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UkuleleLady
- Gentoo Penguin
- Posts: 383
- Joined: Sun Jun 23, 2013 4:45 pm
- Location: Texas
Re: Newbie, 32 years old, recently diagnosed
Hi there, I was in my late thirties when I received my diagnosis.zmakj wrote: I know I need to address the inflammation aspect. Any pointers for this as I wait for the medication end of things to be sorted out. Thank you!
Stress is a major part of this. I did a lot of affirmation work and meditation in an attempt to 'rewire' my brain from being a type-a control freak. Being a 'driven' person lead to many symptoms.
If immodium gives you some help with urgency, keep taking it. Being desperate to get it under control is not going to help and will probably make things worse.
Most of us react to many, many common foods when the disease hits its crisis. I highly recommend going gluten, dairy and egg free, at the very least to see if that helps. Focus on eating a lot of protein, e.g., turkey sausage for breakfast, plain burger for lunch (venison or bison or turkey) and lamb for dinner. I am suggesting meats that are more infrequently consumed because there is a likelihood you react to beef, pork or chicken. But I never stopped eating beef & pork, I found chicken was the worst for me.
I can eat chicken and some dairy again, after a few years (and my life is normal now), but I'll never eat gluten again. Eggs I can eat a couple of times a week.
Everyone has a different experience with this, but, I highly recommend going high protein and cutting back on all veggies and fruits for a while.
Entocort will help you get the inflammation down to baseline, and resolving your stress and diet will solve the problem.
This is a new way of life, and you will get your life back and it will be better than ever.
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama