Hello,
I am new to this forum.
My name is Jonas 38år and comes from Sweden. I was diagnosed with microscopic colitis 4 months ago. And I read the book about 3 months ago.
I have since 2003 been diagnosed with celiac disease and eating gluten-free.
Since I read the book I eat no dairy products, peppers or chili.
Trying to also stay away from soy, corn, yeast, cabbage, beans, oats, raw vegetables, etc..
I've gotten better, but not as good as I have been. I still have gripes some evenings, the stools are rarely good, although I usually only go 1 time per day.
My doctor wants to put me on medication, but I have told him that I do not think the symptoms are so severe anymore. Still he thinks that this would be best for me, since he do not think food changes will help much at all.
Should I wait and see if the food changes will help more or should I try the medicine together with food change?
What would you recommend?
Below you can see the medical advice that doctors in Sweden goes after, for those interested.
I guess Budenofalk and Entocort are the same.
Microscopic Colitis
Guidelines for the investigation and treatment in primary care
Background
Microscopic colitis is a benign condition that can usefully be evaluated and treated in primary care.
For the microscopic colitis counted collagenous colitis and lymphocytic colitis. Occurs in both sexes but is most common in women over 60.
Cause
• Reason is that in most cases unknown.
• Certain drugs (NSAIDs, SSRIs, lansoprazole) have been reported to trigger the disease.
• Gallsaltsmalabsorption and celiac disease may occur simultaneously with microscopic colitis.
Symptoms
• The predominant symptom is a chronic diarrhea, which often debuts acute.
• Weight loss, diffuse abdominal pain and incontinence is often seen.
Investigation
• On suspicion of microscopic colitis patient is referred to coloskopi. The diagnosis can only be made using biopsies from kolonslemhirman.
• Laboratory tests usually normal - mild anemia, and easy-CRP may occur.
• Careful drug history. If necessary, the suspect drug (see above).
Treatment
• First-line agents are budesonide (Budenofalk) at a starting dose of 3 capsules daily for 2 months (more than 80% respond to this treatment).
• Patients who responded to treatment, then continue with a maintenance dose of 2 capsules daily for at least 6 months.
• The majority of patients may be a disease relapse when the medication is terminated. Continued treatment with budesonide is almost always successful. Titrate slowly down to the lowest dose which keeps the patient free of diarrhea.
• At this time, it is reasonable to continue treatment for another 12-24 months, when symptoms disappear and histology normalized in 80% of patients within 3 years.
• If the patient does not improve on treatment with budesonide father concomitant disease considered (gallsaltsmalabsorption and celiac disease).
Follow-up
• Symptom-free patients can be monitored on an annual basis.
• The duration of treatment with budesonide is individual (see above), but the majority of patients with collagenous colitis should be treated for 24-36 months.
• The rest of the patients should be referred to a specialist for a decision on more powerful treatment.
My doctor wants to put me on medication, should I wait?
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Dear Jonas,
first of all: welcome to this forum. You will see that a lot of people will try to help you.
I don't really know if it is better to take medecine.
I've been on entocort for a year and I've seen some changes. The problem is: entocort is a corticoid. You can have a lot of side effects from it. I did get better after a while, but my symptoms of lymphocytic colitis were severe. I had to go to the bathroom all the time (10 to 30 times a day). I couldn't eat and drink properly because of the pain and the nausea.
You will see that changes in your diet will help. Most doctors don't believe that diet changes can help you, but we are living proof that it does help.
My questions to you are: can you function? Can you still go to work? Is the pain severe or not? Can you still eat? Do you have an appetite for food?
I'm sorry I can't give you a clear answer. Medecine works for some people, and for others, it doesn't work. Keep us posted.
Good luck.
Julie
first of all: welcome to this forum. You will see that a lot of people will try to help you.
I don't really know if it is better to take medecine.
I've been on entocort for a year and I've seen some changes. The problem is: entocort is a corticoid. You can have a lot of side effects from it. I did get better after a while, but my symptoms of lymphocytic colitis were severe. I had to go to the bathroom all the time (10 to 30 times a day). I couldn't eat and drink properly because of the pain and the nausea.
You will see that changes in your diet will help. Most doctors don't believe that diet changes can help you, but we are living proof that it does help.
My questions to you are: can you function? Can you still go to work? Is the pain severe or not? Can you still eat? Do you have an appetite for food?
I'm sorry I can't give you a clear answer. Medecine works for some people, and for others, it doesn't work. Keep us posted.
Good luck.
Julie
It doesn't matter how many times you fall, but how many times you get up en go for it again. HOPE !!!!
Hi Jonas,
Welcome to the group. To help decide whether or not to take a medication, it is helpful to review what the medication will do, and what it will not do. And as Julie has suggested, since medications always cause side effects, are your symptoms severe enough to justify the use of a corticosteroid?
Budesonide will suppress the inflammation that causes microscopic colitis (MC), but it cannot prevent new inflammation from being generated, because no mediation addresses the cause of the inflammation. Medications only suppress symptoms, to make life easier when symptoms are severe enough that they interfere with our daily routine. One of the disadvantages of corticosteroids is that they actually slow down healing, so they will not help you to recover sooner. They can certainly make life more enjoyable, though, when symptoms are severe.
Another problem with corticosteroids, is that they cannot be taken forever, without causing adrenal system problems, so most doctors will only prescribe them for a limited length of time, and when the drugs are withdrawn, the symptoms almost always return. As you probably remember from reading the book, only diet changes can prevent the inflammation from being regenerated. Unless we make the proper diet changes, our symptoms will almost always relapse after our GI specialist tells us that we must stop taking the drug. Corticosteroids can certainly be used in addition to diet changes, and this often works very well to suppress the symptoms while the diet changes are helping the intestines to heal.
Remember that "trying to stay from certain foods" is not the same as actually eliminating them from our diet. In order for the diet to work, we have to avoid the foods that cause us to react, 100%. Every time that we make a mistake and eat a food that we shouldn't, the healing process has to start over, and healing can take a very long time, even on a perfect diet.
Considering your description of your current status, my guess is that you probably just need more time to heal. It often takes 6 months or more for many of us to reach remission. It takes much, much longer for the intestines to heal, than most doctors realize. Those of us who have both celiac disease and MC, usually have a very high sensitivity to the foods that affect us. In other words, we tend to react to very small amounts (trace amounts) of those foods (we have a very low reaction threshold), so we have to be very careful with our diets. Many of us find that the medications and/or supplements we take often contain trace amounts of soy, or lactose, or even gluten, and many of us have found that by switching to safer medications and/or supplements, we can eliminate our symptoms. We have to be very careful detectives with this disease, because cross-contamination is very widespread in many products.
Just as in your country, most of the GI specialists in this country are still not aware that diet changes are the first line of treatment for MC, but a few are beginning to learn more about it. If you want to show your doctors evidence that diet is important in the treatment of MC, show them this reference from the Mayo Clinic:
Their claim that surgery is necessary in rare cases is incorrect, however. Surgery is never justified to treat MC, IMO.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to the group. To help decide whether or not to take a medication, it is helpful to review what the medication will do, and what it will not do. And as Julie has suggested, since medications always cause side effects, are your symptoms severe enough to justify the use of a corticosteroid?
Budesonide will suppress the inflammation that causes microscopic colitis (MC), but it cannot prevent new inflammation from being generated, because no mediation addresses the cause of the inflammation. Medications only suppress symptoms, to make life easier when symptoms are severe enough that they interfere with our daily routine. One of the disadvantages of corticosteroids is that they actually slow down healing, so they will not help you to recover sooner. They can certainly make life more enjoyable, though, when symptoms are severe.
Another problem with corticosteroids, is that they cannot be taken forever, without causing adrenal system problems, so most doctors will only prescribe them for a limited length of time, and when the drugs are withdrawn, the symptoms almost always return. As you probably remember from reading the book, only diet changes can prevent the inflammation from being regenerated. Unless we make the proper diet changes, our symptoms will almost always relapse after our GI specialist tells us that we must stop taking the drug. Corticosteroids can certainly be used in addition to diet changes, and this often works very well to suppress the symptoms while the diet changes are helping the intestines to heal.
Remember that "trying to stay from certain foods" is not the same as actually eliminating them from our diet. In order for the diet to work, we have to avoid the foods that cause us to react, 100%. Every time that we make a mistake and eat a food that we shouldn't, the healing process has to start over, and healing can take a very long time, even on a perfect diet.
Considering your description of your current status, my guess is that you probably just need more time to heal. It often takes 6 months or more for many of us to reach remission. It takes much, much longer for the intestines to heal, than most doctors realize. Those of us who have both celiac disease and MC, usually have a very high sensitivity to the foods that affect us. In other words, we tend to react to very small amounts (trace amounts) of those foods (we have a very low reaction threshold), so we have to be very careful with our diets. Many of us find that the medications and/or supplements we take often contain trace amounts of soy, or lactose, or even gluten, and many of us have found that by switching to safer medications and/or supplements, we can eliminate our symptoms. We have to be very careful detectives with this disease, because cross-contamination is very widespread in many products.
Just as in your country, most of the GI specialists in this country are still not aware that diet changes are the first line of treatment for MC, but a few are beginning to learn more about it. If you want to show your doctors evidence that diet is important in the treatment of MC, show them this reference from the Mayo Clinic:
http://www.mayoclinic.com/health/collag ... is/DS00824Treatment for collagenous colitis and lymphocytic colitis often begins with lifestyle changes. In many cases, adjusting your diet will be enough to resolve your symptoms. If not, your doctor can suggest a number of effective medications for collagenous colitis and lymphocytic colitis. In rare cases, surgery is necessary.
Their claim that surgery is necessary in rare cases is incorrect, however. Surgery is never justified to treat MC, IMO.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
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.
-
fatbuster205
- Gentoo Penguin
- Posts: 342
- Joined: Tue May 22, 2012 7:53 am
- Location: Carrickfergus, Northern Ireland
Hi Jonas, welcome and greetings from Northern Ireland!
As the guys above have said, I guess it will depend on how bad things are as to which way you go. I am on medication (budesonide) and have been since the end of July (9mg) and I have just gone GF! I am waiting to know if I have coeliac disease or non-coeliac gluten sensitivity! Either way I am seeing an improvement in my symptoms after just 3 weeks! My aim is to be able to manage this disease by diet alone - although not everyone here is able to achieve that!
That said I am quite impressed at the doctors in Sweden realising the link between MC and coeliac. I am also interested to note the bile salts mal-absorption - I sometimes have symptoms of that too! You will get a lot of useful help on here - from people with much greater knowledge than me!
I hope you find the answer that suits you!
Anne
As the guys above have said, I guess it will depend on how bad things are as to which way you go. I am on medication (budesonide) and have been since the end of July (9mg) and I have just gone GF! I am waiting to know if I have coeliac disease or non-coeliac gluten sensitivity! Either way I am seeing an improvement in my symptoms after just 3 weeks! My aim is to be able to manage this disease by diet alone - although not everyone here is able to achieve that!
That said I am quite impressed at the doctors in Sweden realising the link between MC and coeliac. I am also interested to note the bile salts mal-absorption - I sometimes have symptoms of that too! You will get a lot of useful help on here - from people with much greater knowledge than me!
I hope you find the answer that suits you!
Anne
Hi Jonas,
Glad you found our forum. Honestly, if you are only having 1 bm a day you will probably do well with additional diet changes with no meds. I would definitely try that first. It still blows my mind that a Celiac (I was just diagnosed) can end up with MC down the road after years of being GF. I guess one triggers the other? Do you know what triggered your MC? Most of us can tell you the day and what contributed to it. Mine was triggered, I believe, by beta blockers my Cardio doctor had prescribed me. I got off them but.....too late...the gene had been triggered and now I'm stuck with additional food intolerances.
Keep us updated on how things go with your additional diet changes.
Terri
Glad you found our forum. Honestly, if you are only having 1 bm a day you will probably do well with additional diet changes with no meds. I would definitely try that first. It still blows my mind that a Celiac (I was just diagnosed) can end up with MC down the road after years of being GF. I guess one triggers the other? Do you know what triggered your MC? Most of us can tell you the day and what contributed to it. Mine was triggered, I believe, by beta blockers my Cardio doctor had prescribed me. I got off them but.....too late...the gene had been triggered and now I'm stuck with additional food intolerances.
Keep us updated on how things go with your additional diet changes.
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
I'm happy to read that some at Mayo are starting to figure this out. My PCP there seemed surprised last spring when I told her that eliminating glutenTreatment for collagenous colitis and lymphocytic colitis often begins with lifestyle changes. In many cases, adjusting your diet will be enough to resolve your symptoms. If not, your doctor can suggest a number of effective medications for collagenous colitis and lymphocytic colitis. In rare cases, surgery is necessary.
had eliminated my symptoms (unfortunately I have since had further issues and am dealing with the dairy/soy thing). She was interested enough to say she might recommend it to her patients and she even jotted down the address of this forum. I'm thinking of Ant....softly,softly, catchee monkey.
Hi Jonas,
Welcome from Florida! It sounds like you are doing well and have a good handle on the diet! Your story sounds very much like mine. When I found this forum I was at one bowel movement per day kind of like soft serve ice cream and my Doc started talking Entocort. In your decision making process I would consider the following: Are you able to go to work? Are you missing too much work? Are you on the verge of being fired from your job due to this disease? Is your marriage and/or relationships going okay? Are you able to cook your own foods? Are you able to walk around the grocery store for your groceries? If you are having problems in these areas Entocort (budesonide) will help. Otherwise to me it sounds like you are doing fairly well and probably half way to healing.
I was an Entocort user for 4.5 months and was able to get off of it Jan 15th. Since you are doing really well on the diet you could realistically be off of Entocort in 4.5 - 7 months if you decide to take it. The length of time listed below is not necessary for a lot of us. However there is a percentage of Entocort users who are on a maintenance dose and on Entocort for a number of years.
[Treatment
• First-line agents are budesonide (Budenofalk) at a starting dose of 3 capsules daily for 2 months (more than 80% respond to this treatment).
• Patients who responded to treatment, then continue with a maintenance dose of 2 capsules daily for at least 6 months.
quote]
The way Entocort worked for me was I had a solid bowel movement by day 3 and by 21 days I was constipated (from 3 pills). Then I stepped down to 2 pills per day until I got constipated again which took about 3 weeks, then I stepped down to one pill until I was constipated again which was about 5 weeks, then I went to one pill every other day which was about a month, then one pill every third day for awhile etc until I got off after 4.5 months. History of this board is also most success (less chance of relapse) with long slow taper at low end. Please note that there is a percent of people that are unable to get off of Entocort, ie. are on a maintenance dose for sometimes years.
Regarding your "trying to stay away from foods"----[Trying to also stay away from soy, corn, yeast, cabbage, beans, oats, raw vegetables, etc..
]
Work on staying away from your trying to stay away from foods. You will heal faster and suffer less. Long term (say a year out or so) you should be able add some of the foods back. Other than the soy and oats I can now eat the foods on your list in moderation.
Some things that may help particularly if you go the diet alone route:
1. Vitamin D3--particularly since you are at a higher latitude
2. Pepto Bismol--(bismuth subsalicylate) This won't heal you but will help soothe the stomach. If you can fiind it in pink tablet form the Americans prefer the tablets. I think the Brits have it available as a pink liquid. It will turn your stool black, your tongue black but will take away the odor of your stool and help with the stomach pain. It's available at drug store, no prescription.
3. Anti histamines--I'm not really familiar with this but a number of folks are helped by them. You'll have to follow the discussions on them in the forum.
Most of us have had doctors that have said food does not matter. However there are a lot of members who have gone into remission from diet alone. My experience with Budesonide was that it didn't "heal me" and I found it somewhat of a rough drug to be on. Other users on this board didn't seem to have the side effects that I did. It was more of an aid to get me through the tough time. The diet is very key to healing.
Hopefully this gives you some things to think about. Ask us any questions and best wishes. Brandy
Welcome from Florida! It sounds like you are doing well and have a good handle on the diet! Your story sounds very much like mine. When I found this forum I was at one bowel movement per day kind of like soft serve ice cream and my Doc started talking Entocort. In your decision making process I would consider the following: Are you able to go to work? Are you missing too much work? Are you on the verge of being fired from your job due to this disease? Is your marriage and/or relationships going okay? Are you able to cook your own foods? Are you able to walk around the grocery store for your groceries? If you are having problems in these areas Entocort (budesonide) will help. Otherwise to me it sounds like you are doing fairly well and probably half way to healing.
I was an Entocort user for 4.5 months and was able to get off of it Jan 15th. Since you are doing really well on the diet you could realistically be off of Entocort in 4.5 - 7 months if you decide to take it. The length of time listed below is not necessary for a lot of us. However there is a percentage of Entocort users who are on a maintenance dose and on Entocort for a number of years.
[Treatment
• First-line agents are budesonide (Budenofalk) at a starting dose of 3 capsules daily for 2 months (more than 80% respond to this treatment).
• Patients who responded to treatment, then continue with a maintenance dose of 2 capsules daily for at least 6 months.
quote]
The way Entocort worked for me was I had a solid bowel movement by day 3 and by 21 days I was constipated (from 3 pills). Then I stepped down to 2 pills per day until I got constipated again which took about 3 weeks, then I stepped down to one pill until I was constipated again which was about 5 weeks, then I went to one pill every other day which was about a month, then one pill every third day for awhile etc until I got off after 4.5 months. History of this board is also most success (less chance of relapse) with long slow taper at low end. Please note that there is a percent of people that are unable to get off of Entocort, ie. are on a maintenance dose for sometimes years.
Regarding your "trying to stay away from foods"----[Trying to also stay away from soy, corn, yeast, cabbage, beans, oats, raw vegetables, etc..
]
Work on staying away from your trying to stay away from foods. You will heal faster and suffer less. Long term (say a year out or so) you should be able add some of the foods back. Other than the soy and oats I can now eat the foods on your list in moderation.
Some things that may help particularly if you go the diet alone route:
1. Vitamin D3--particularly since you are at a higher latitude
2. Pepto Bismol--(bismuth subsalicylate) This won't heal you but will help soothe the stomach. If you can fiind it in pink tablet form the Americans prefer the tablets. I think the Brits have it available as a pink liquid. It will turn your stool black, your tongue black but will take away the odor of your stool and help with the stomach pain. It's available at drug store, no prescription.
3. Anti histamines--I'm not really familiar with this but a number of folks are helped by them. You'll have to follow the discussions on them in the forum.
Most of us have had doctors that have said food does not matter. However there are a lot of members who have gone into remission from diet alone. My experience with Budesonide was that it didn't "heal me" and I found it somewhat of a rough drug to be on. Other users on this board didn't seem to have the side effects that I did. It was more of an aid to get me through the tough time. The diet is very key to healing.
Hopefully this gives you some things to think about. Ask us any questions and best wishes. Brandy
Thank you all for the warm welcome.
And thank you for trying to help me with answers to my questions.
Julie,
I believe my worst symptoms probably would be that I am so very tired all the time. Is that common?
I can eat and I would not describe my pain as severe.
The pain psychology it's that I can not eat diary products, celiac disease is quite common in Sweden and that's not much a problem for me any more but with diary products it's a different story, especially if you live in Sweden (top 4 consumer in the world).
Also the process if finding food that are ok to eat at the healing process stage is very hard and energy consuming. We do not have any EnteroLab testing in Europe, other wise that would probably helped me a lot.
Tex (Wayne);
I thought medicine + changing dietary habits were the fastest way to get healthy, but modified diets alone is what makes a healthy fastest (in most cases)?
Your answer decides it. If the medicine is thus not speed up the process of healing my intestines then it’s not for me right now.
I rarely get some strong reactions when I eat the wrong foods, except paprika and chili that I notice almost immediately. Therefore, it is difficult to find what I can and can not eat.
Have I stressed, I feel that I am getting worse stomach a few days later and that makes it even more difficult, is the problem I have at one particular moment due to food or stress,
Is it normal to have some abdominal pain during the healing process established that you eat right?
As you say, cross-contamination can be a big problem for me, I try to be careful all the time. With 3 other family members who subsist on milk and wheat products. My daughter who is 1 year often spills on the skin and on clothing such as young children often have. I can not change clothes at her all the time or push her away so it is hard to avoid.
Perhaps more protective clothes at the food and wipe her properly afterwards may be one solution.
Lras (Terri);
I suspect a short usage (4 weeks) of proton pump inhibitors, a drug called Omeprazole Mylan could have started the disease for me, at least it fits the time frame.
Brandy
All the things you write, I have no major problems, job works ok, the family is supportive and I can cook my own food. My job as a consultant in electrical engineering are often very stressful for everyone in the industry, so I think strong about switching to something else for my health and stomach's sake.
It does not seem like you had major problems, but decided both change of diet and medicine, why?
I wrote probably wrong, I have a very limited and strict diet now since a few months back. Which consists of only meat, fish, rice, potatoes, coconut, nuts, eggs, cucumber, carrot, buckwheat, berries, orange, peeled pears and olive oil. So try to keep me away was wrong written.
What is Anti-histamines good for with regard microskopisk colitis?
Once again thanks for your help, hopefully I can help some people that are new down the road.
Jonas
And thank you for trying to help me with answers to my questions.
Julie,
I believe my worst symptoms probably would be that I am so very tired all the time. Is that common?
I can eat and I would not describe my pain as severe.
The pain psychology it's that I can not eat diary products, celiac disease is quite common in Sweden and that's not much a problem for me any more but with diary products it's a different story, especially if you live in Sweden (top 4 consumer in the world).
Also the process if finding food that are ok to eat at the healing process stage is very hard and energy consuming. We do not have any EnteroLab testing in Europe, other wise that would probably helped me a lot.
Tex (Wayne);
I thought medicine + changing dietary habits were the fastest way to get healthy, but modified diets alone is what makes a healthy fastest (in most cases)?
Your answer decides it. If the medicine is thus not speed up the process of healing my intestines then it’s not for me right now.
I rarely get some strong reactions when I eat the wrong foods, except paprika and chili that I notice almost immediately. Therefore, it is difficult to find what I can and can not eat.
Have I stressed, I feel that I am getting worse stomach a few days later and that makes it even more difficult, is the problem I have at one particular moment due to food or stress,
Is it normal to have some abdominal pain during the healing process established that you eat right?
As you say, cross-contamination can be a big problem for me, I try to be careful all the time. With 3 other family members who subsist on milk and wheat products. My daughter who is 1 year often spills on the skin and on clothing such as young children often have. I can not change clothes at her all the time or push her away so it is hard to avoid.
Perhaps more protective clothes at the food and wipe her properly afterwards may be one solution.
Lras (Terri);
I suspect a short usage (4 weeks) of proton pump inhibitors, a drug called Omeprazole Mylan could have started the disease for me, at least it fits the time frame.
Brandy
All the things you write, I have no major problems, job works ok, the family is supportive and I can cook my own food. My job as a consultant in electrical engineering are often very stressful for everyone in the industry, so I think strong about switching to something else for my health and stomach's sake.
It does not seem like you had major problems, but decided both change of diet and medicine, why?
I wrote probably wrong, I have a very limited and strict diet now since a few months back. Which consists of only meat, fish, rice, potatoes, coconut, nuts, eggs, cucumber, carrot, buckwheat, berries, orange, peeled pears and olive oil. So try to keep me away was wrong written.
What is Anti-histamines good for with regard microskopisk colitis?
Once again thanks for your help, hopefully I can help some people that are new down the road.
Jonas
HI Jonas,
to answer to your question: I feel tired all the time. I even have trouble getting up in the morning and I feel like I didn't get enough sleep, but I slept 9 hours. You get used to it though and that feeling gets better when your MC calms down. When I took meds to control my disease, I felt even more tired. The proces of weaning the meds off was difficult for me since my adrenal glands aren't producing enough cortisol. SO now I'm back on cortisone and I'm in the proces of weaning it off again. But of course, my body isn't your body and you could feel tired for all sorts of reasons.
I wish you the best of luck and I hope you feel better soon. I notticed that you eat eggs. Eggs aren't good for me. Maybe that's something that causes a problem for you? I eleminated eggs because I felt horrible because of it. Many of us do avoid eggs.
Good luck, and know that you're not allone.
Julie
to answer to your question: I feel tired all the time. I even have trouble getting up in the morning and I feel like I didn't get enough sleep, but I slept 9 hours. You get used to it though and that feeling gets better when your MC calms down. When I took meds to control my disease, I felt even more tired. The proces of weaning the meds off was difficult for me since my adrenal glands aren't producing enough cortisol. SO now I'm back on cortisone and I'm in the proces of weaning it off again. But of course, my body isn't your body and you could feel tired for all sorts of reasons.
I wish you the best of luck and I hope you feel better soon. I notticed that you eat eggs. Eggs aren't good for me. Maybe that's something that causes a problem for you? I eleminated eggs because I felt horrible because of it. Many of us do avoid eggs.
Good luck, and know that you're not allone.
Julie
It doesn't matter how many times you fall, but how many times you get up en go for it again. HOPE !!!!
Jonas,
Yes, stress is a major problem, and fatigue/exhaustion is a common symptom of this disease. And it is normal to have periods with pain and other symptoms when we are recovering. Most of us do not suddenly become well, after we change our diet. We slowly get better, but we have bad days, some of the time. I found that as my intestines began to heal, I still had times when I had cramps, pain, bloating, and diarrhea. I had bad days, good days, and then bad days again. But as time passed, and the healing continued, I found that the bad days became fewer and fewer, and eventually I had no more bad days. Of course, if I made a mistake, and ate something that I shouldn't, I would have a bad day again, but as long as I am careful (and not unlucky), I remain in remission.
Don't worry about milk or other food that your daughter spills on your clothing or skin. That will not make you ill, as long as you do not get it in your mouth. On the other hand, if your daughter has milk (or gluten) on her cheek, and you kiss her cheek, that can make you ill.
Looking at the list of foods that you are eating, I should point out that some of us are sensitive to eggs and a few of us have had problems with buckwheat. Oranges or any citrus fruit caused me to have nausea/vomiting, but if oranges do not cause nausea for you, then they are probably safe to eat.
Tex
Yes, stress is a major problem, and fatigue/exhaustion is a common symptom of this disease. And it is normal to have periods with pain and other symptoms when we are recovering. Most of us do not suddenly become well, after we change our diet. We slowly get better, but we have bad days, some of the time. I found that as my intestines began to heal, I still had times when I had cramps, pain, bloating, and diarrhea. I had bad days, good days, and then bad days again. But as time passed, and the healing continued, I found that the bad days became fewer and fewer, and eventually I had no more bad days. Of course, if I made a mistake, and ate something that I shouldn't, I would have a bad day again, but as long as I am careful (and not unlucky), I remain in remission.
Don't worry about milk or other food that your daughter spills on your clothing or skin. That will not make you ill, as long as you do not get it in your mouth. On the other hand, if your daughter has milk (or gluten) on her cheek, and you kiss her cheek, that can make you ill.
Looking at the list of foods that you are eating, I should point out that some of us are sensitive to eggs and a few of us have had problems with buckwheat. Oranges or any citrus fruit caused me to have nausea/vomiting, but if oranges do not cause nausea for you, then they are probably safe to eat.
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 Jonas,
In response to your question about why I did Entocort and diet I pretty much caved to extreme pressure from my employer and friends to go on Entocort (despite the fact that I was doing okay.) I think my employer and friends thought I had something like the flu that you are over in two weeks. Pressure from my friends and employer to go on medication was a stupid reason to go on medication.
Regarding nuts--suggest eliminate them for awhile. The problem with nuts is that when you chew them they are like little shards of glass going through our digestive system. They act like raw veggies--hard to digest. I've finally been able to eat some nuts as of about 10 weeks ago but even now I can only eat about 12 per day. If I eat a large handful it is a problem. I'm also following Dr. Fine's proceedures to soak them for 4 hours or overnight then rinse them off. This softens them making them easier to digest. Check Dr. Fine's website for more info. (google Dr. Fine microscopic colitis for more info)
Suggest do a search of histamine on this forum to read more on anti histamines. A lot of our regular posters seem to be off for the holidays. If you have more question suggest make another post after the holidays. (I don't know much about the histamine/mast cell stuff as it does not seem to apply to me.)
Regarding dairy--giving up dairy is tough on all of us but helps us to recover from MC. Suggest give it up for 4-6 months and retest down the road with something like goats milk gouda. Anything from a goat will be easier to digest than from a cow. You might find some discussion regarding dairy on a Swedish celiac support forum. Search for discussions about casein (the protein in dairy that is problematic for us.) Some replacement milks are almond milk, rice milk etc
Regarding Enterolab testing---it helps but you can get thru this without it. I was very late in getting Enterolab testing. I was diagnosed Sept 1 2011 but did not get my testing until mid March 2012. The Enterolab testing pretty much confirmed what I'd already figured out. If you are still struggling down the road you can do Enterolab testing but pay an international shipping fee. We've had folks send samples from Europe and Asia and Israel.
Suggest stay with fairly narrow diet for awhile of your "safe foods." It will allow the gut to heal and you will have a lot less stress. Very slowly add an item back in.
Hope this provides some insite and best holiday wishes! Brandy
In response to your question about why I did Entocort and diet I pretty much caved to extreme pressure from my employer and friends to go on Entocort (despite the fact that I was doing okay.) I think my employer and friends thought I had something like the flu that you are over in two weeks. Pressure from my friends and employer to go on medication was a stupid reason to go on medication.
Regarding nuts--suggest eliminate them for awhile. The problem with nuts is that when you chew them they are like little shards of glass going through our digestive system. They act like raw veggies--hard to digest. I've finally been able to eat some nuts as of about 10 weeks ago but even now I can only eat about 12 per day. If I eat a large handful it is a problem. I'm also following Dr. Fine's proceedures to soak them for 4 hours or overnight then rinse them off. This softens them making them easier to digest. Check Dr. Fine's website for more info. (google Dr. Fine microscopic colitis for more info)
Suggest do a search of histamine on this forum to read more on anti histamines. A lot of our regular posters seem to be off for the holidays. If you have more question suggest make another post after the holidays. (I don't know much about the histamine/mast cell stuff as it does not seem to apply to me.)
Regarding dairy--giving up dairy is tough on all of us but helps us to recover from MC. Suggest give it up for 4-6 months and retest down the road with something like goats milk gouda. Anything from a goat will be easier to digest than from a cow. You might find some discussion regarding dairy on a Swedish celiac support forum. Search for discussions about casein (the protein in dairy that is problematic for us.) Some replacement milks are almond milk, rice milk etc
Regarding Enterolab testing---it helps but you can get thru this without it. I was very late in getting Enterolab testing. I was diagnosed Sept 1 2011 but did not get my testing until mid March 2012. The Enterolab testing pretty much confirmed what I'd already figured out. If you are still struggling down the road you can do Enterolab testing but pay an international shipping fee. We've had folks send samples from Europe and Asia and Israel.
Suggest stay with fairly narrow diet for awhile of your "safe foods." It will allow the gut to heal and you will have a lot less stress. Very slowly add an item back in.
Hope this provides some insite and best holiday wishes! Brandy
Question for Tex--
Why are the American entocort and European entocort prescribing protocols so drasically different?
Here is what Jonas quoted as the European protocol:
Does it have something to do with pricing of the drugs?
Brandy
Why are the American entocort and European entocort prescribing protocols so drasically different?
Here is what Jonas quoted as the European protocol:
Most of the American docs seem to be prescribing the 3 month protocol (which we know is not enough time.) The European seems to be 8 months which is a big difference.Treatment
• First-line agents are budesonide (Budenofalk) at a starting dose of 3 capsules daily for 2 months (more than 80% respond to this treatment).
• Patients who responded to treatment, then continue with a maintenance dose of 2 capsules daily for at least 6 months.
• The majority of patients may be a disease relapse when the medication is terminated. Continued treatment with budesonide is almost always successful. Titrate slowly down to the lowest dose which keeps the patient free of diarrhea.
• At this time, it is reasonable to continue treatment for another 12-24 months, when symptoms disappear and histology normalized in 80% of patients within 3 years.
• If the patient does not improve on treatment with budesonide father concomitant disease considered (gallsaltsmalabsorption and celiac disease).
Does it have something to do with pricing of the drugs?
Brandy
Brandy wrote:Wow, I finally got the quote thing right
Regarding the differences in treatment protocols for budesonide, I would have to guess that European GI specialists as a group are simply more comfortable prescribing budesonide, than their American counterparts. I have a hunch that because of that attitude, the treatment outlined may be the protocol that is recommended by the NHS in most countries, whereas in the U. S., it's a free-for-all — every doc decides for herself or himself how each drug should be administered, and most of them are afraid of corticosteroids, after having bad experiences with prednisolone.
Astra-Zeneca's research, submitted to the FDA, shows that budesonide has been tested for at least 12 months at the 6 mg dosage, and the adverse events and side effects were not materially different than for the 9 mg treatment for 8 weeks. Most American docs probably don't even read that far in the research data, so they may not even realize that the drug has been tested for safe longer-term use. The ones who are aware of the research may be afraid to prescribe a corticosteroid for longer-term use, because they equate budesonide with prednisolone.
But I'm just guessing, of course.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.
Again thanks for your answers, it helps very much
I have a few more questions if that's okay?
1. Say that I can not tolerate gluten and dairy, and is allergic sensitivity to peppers, chilli, corn and almonds.
Will my gut take as much damage no matter what I have in me, or are gluten makes the most damage? Ie. if I happen to get me a small amount of almond sometime it's just as bad as if I would have gluten in me?
2. If you have microscopic colitis and eat right, what is most common that you get more food allergies as time passes, fewer or the same as before?
3. As for my diet I eat
meat, fish, rice, potatoes, coconut, nuts, eggs, cucumber, carrot, buckwheat, berries, orange, peeled pears and olive oil.
I should ev. remove nuts, eggs, buckwheat according to you..
Is there anything I can add that I have missed? Quinoa, I thought of. Is there something else I could add?
4. A friend of mine recommended me to go on homeopathy, it is something that someone with MC been helped by as far as you know?
5. Which test at enterolab is recommended?
Panel A + C: Comprehensive Gluten / Antigenic Food Sensitivity Stool Panel?
Perhaps a "Gluten Sensitivity Gene Test 'for my daughters?
I talked to my nutritionist yesterday about this and he had almost no idea what he would answer my questions about diet and MC. It is a rare disease, and even rarer to try to treat it with diet. Therefor I can understand him.
So this forum is extremely important for us with the MC, both for support and information you can not get anywhere else. Thank you for being kind and so helpful.
Jonas
I have a few more questions if that's okay?
1. Say that I can not tolerate gluten and dairy, and is allergic sensitivity to peppers, chilli, corn and almonds.
Will my gut take as much damage no matter what I have in me, or are gluten makes the most damage? Ie. if I happen to get me a small amount of almond sometime it's just as bad as if I would have gluten in me?
2. If you have microscopic colitis and eat right, what is most common that you get more food allergies as time passes, fewer or the same as before?
3. As for my diet I eat
meat, fish, rice, potatoes, coconut, nuts, eggs, cucumber, carrot, buckwheat, berries, orange, peeled pears and olive oil.
I should ev. remove nuts, eggs, buckwheat according to you..
Is there anything I can add that I have missed? Quinoa, I thought of. Is there something else I could add?
4. A friend of mine recommended me to go on homeopathy, it is something that someone with MC been helped by as far as you know?
5. Which test at enterolab is recommended?
Panel A + C: Comprehensive Gluten / Antigenic Food Sensitivity Stool Panel?
Perhaps a "Gluten Sensitivity Gene Test 'for my daughters?
I talked to my nutritionist yesterday about this and he had almost no idea what he would answer my questions about diet and MC. It is a rare disease, and even rarer to try to treat it with diet. Therefor I can understand him.
So this forum is extremely important for us with the MC, both for support and information you can not get anywhere else. Thank you for being kind and so helpful.
Jonas