At first You must know that I'm from Poland and my English can be sometimies quite bad ;)
I was very suprised when I found this page. On our polish site are registered only few people with MC. The bigger part of users suffer from Chron disease or colitis ulcerosa.
And now about me..
I'm 22 years old, i suffer from lymphotic colitis since 3 years. At this time I have only one remission. Since one year I know that my disease is MC. After first symptomps and during the first tereatment my doctor didn't know what is this.. I change my doctor... and he, after few investigations find the answer - you have lymphocytic colitis.
I'm on Metypred ((Methylprednisolonum) ) and Pentasa (Mesalazinum) but I still havn't full remission.
I don't know what to do..
I really need Your support!
Anna
Hello!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hello Anna and Welcome from New Hampshire.
Well you have a diagnosis now, which is the first step to getting well since you now know what you are dealing with. It sounds like you have some good initial medications to get things under control, which is a good starting point. The next issue is dealing with what foods are aggravating your symptoms, keep in mind that the medications you are taking can only somewhat help the symptoms, you will most likely need to make changes in your diet to start feeling better. For most of use we have 3 main areas of foods that affect MC (LC or CC)
1.) Gluten which can be found in wheat flour which is used in breads, pastries, beer, pasta... Just about all of us have issues with gluten and need to stop eating ALL of it
2.) Soy products which include soybeans, tofu, soybean oil, soy lecithin and other soy derived products which is commonly found in chocolate among other products. About 66% of us react to soy and at least initially should be removed from your diet
3.) Dairy product including cheese, milk and other products that are made with or from milk products. About half of us react to dairy products
Anna initially I would remove the items listed above from your diet until you can determine which ones of them are causing you problems.
I removed all factory made foods and cooked all my meals from known simple foods, and for a while avoided eating out at restaurants, as its very easy for small amounts of these ingredients to accidentally make into into your food resulting in you feeling awful again.
A note about the medications, for most of us it does take several weeks to get things to settle down. Along with the medications the sooner you are able to get the diet under control the sooner you will feel better.
Take care Anna
--Joe
Well you have a diagnosis now, which is the first step to getting well since you now know what you are dealing with. It sounds like you have some good initial medications to get things under control, which is a good starting point. The next issue is dealing with what foods are aggravating your symptoms, keep in mind that the medications you are taking can only somewhat help the symptoms, you will most likely need to make changes in your diet to start feeling better. For most of use we have 3 main areas of foods that affect MC (LC or CC)
1.) Gluten which can be found in wheat flour which is used in breads, pastries, beer, pasta... Just about all of us have issues with gluten and need to stop eating ALL of it
2.) Soy products which include soybeans, tofu, soybean oil, soy lecithin and other soy derived products which is commonly found in chocolate among other products. About 66% of us react to soy and at least initially should be removed from your diet
3.) Dairy product including cheese, milk and other products that are made with or from milk products. About half of us react to dairy products
Anna initially I would remove the items listed above from your diet until you can determine which ones of them are causing you problems.
I removed all factory made foods and cooked all my meals from known simple foods, and for a while avoided eating out at restaurants, as its very easy for small amounts of these ingredients to accidentally make into into your food resulting in you feeling awful again.
A note about the medications, for most of us it does take several weeks to get things to settle down. Along with the medications the sooner you are able to get the diet under control the sooner you will feel better.
Take care Anna
--Joe
Joe
Anna. You have found the best place in the world for information and support. Read all you can at this site starting with the advice for newbies.I know it is all overwhelming but as our fearless leader Tex states, "You can get your life back."
Also, good information at www.enterolab.com
Joe gave you a great overview.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi Anna,
Welcome to our internet family. I'm sorry that you have this disease, especially at such a young age. As Joe mentioned, for many of us, treatment with medications is not sufficient to bring remission. We are sensitive to certain proteins in food, and these proteins, (gluten in wheat, casein in milk, soya in soy, etc.), cause inflammation in our intestines. In order to stop the inflammation from forming, we have to totally avoid eating any foods that contain those proteins to which we are sensitive. If we eliminate them from our diet, our intestines will heal, and we are usually able to reach full remission.
Again, welcome aboard, and please feel free to ask anything. Your English seems to be quite good - I just wish that I could understand the Polish language one-tenth as well as you understand English.
Tex (Wayne)
Welcome to our internet family. I'm sorry that you have this disease, especially at such a young age. As Joe mentioned, for many of us, treatment with medications is not sufficient to bring remission. We are sensitive to certain proteins in food, and these proteins, (gluten in wheat, casein in milk, soya in soy, etc.), cause inflammation in our intestines. In order to stop the inflammation from forming, we have to totally avoid eating any foods that contain those proteins to which we are sensitive. If we eliminate them from our diet, our intestines will heal, and we are usually able to reach full remission.
Again, welcome aboard, and please feel free to ask anything. Your English seems to be quite good - I just wish that I could understand the Polish language one-tenth as well as you understand English.
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.
Dear Anna,
Like the others, I'm very sorry that you have MC. But you have found an excellent place to get advice from lots of people who also have MC and are controlling with diet, medication, or a combination of both.
I suggest that you change your diet to eliminate gluten (found in wheat, rye, and barley), soy, and all dairy. It may take some time for you to notice an improvement, but those dietary changes really do help.
Martha
Like the others, I'm very sorry that you have MC. But you have found an excellent place to get advice from lots of people who also have MC and are controlling with diet, medication, or a combination of both.
I suggest that you change your diet to eliminate gluten (found in wheat, rye, and barley), soy, and all dairy. It may take some time for you to notice an improvement, but those dietary changes really do help.
Martha
Martha
I understand all of what you writting. When I have to write something ...that is a problem ;)
I was on gluten-free diet when a horse doctor told my that I suffer from coeliac disease. It didn't bring my relief. tranglutaminase ( i don't know it is correct in English? ;)) which are on higher level when you suffer from coeliac diseas i have on normal level etc
And all symptoms still was during gluten-free diet. And it was getting worse.
I have mild grade of lactose intolerance
I don't know what about soya..
:)
I have also one question - I can't take Entocort because when i was on it all symptoms was getting back.That is why my doctor prescribe my this steroid (Metypred) which has so many side effects. does anyone have this kind of problem?
Any mayby i'm on too lower dose of Metypred.
I was on gluten-free diet when a horse doctor told my that I suffer from coeliac disease. It didn't bring my relief. tranglutaminase ( i don't know it is correct in English? ;)) which are on higher level when you suffer from coeliac diseas i have on normal level etc
And all symptoms still was during gluten-free diet. And it was getting worse.
I have mild grade of lactose intolerance
I don't know what about soya..
I hope so!You have found the best place in the world for information and support.
:)
I have also one question - I can't take Entocort because when i was on it all symptoms was getting back.That is why my doctor prescribe my this steroid (Metypred) which has so many side effects. does anyone have this kind of problem?
Any mayby i'm on too lower dose of Metypred.
Welcome Ray,
You may not have noticed results on the gluten-free diet becuase you were still consuming cow's milk products that contain the protein casein. Most MC'ers are lactose intolerant due to the intestinal inflammation, but we are also intolerant to casein, the protein in milk. So it's not enough to switch to lactose-free dairy products. Many here are sensitive to soy too, but hopefully the polish diet isn't as full of soy as the American one. You may wish to try a couple of weeks of gluten/dairy/soy free diet to see if that makes a difference in your symptoms.
You may not have noticed results on the gluten-free diet becuase you were still consuming cow's milk products that contain the protein casein. Most MC'ers are lactose intolerant due to the intestinal inflammation, but we are also intolerant to casein, the protein in milk. So it's not enough to switch to lactose-free dairy products. Many here are sensitive to soy too, but hopefully the polish diet isn't as full of soy as the American one. You may wish to try a couple of weeks of gluten/dairy/soy free diet to see if that makes a difference in your symptoms.
WELCOME ANNA! 
You are doing very well with your English writing. It's great that you can read and understand English because you will find a great deal of information on this website. I'm sure you will be reading and learning a lot over the next several weeks.
Some of us use diet alone to control our symptoms, some use a combination of diet and medication. It is very rare that someone doesn't have to change their diet and almost all of us must eliminate gluten from it. As Joe wrote, many of us also have to eliminate dairy and soy.
We are here to help you and to reassure you that you will get better and you will get your life back, if you are willing to make the necessary changes in your diet.
Gloria
You are doing very well with your English writing. It's great that you can read and understand English because you will find a great deal of information on this website. I'm sure you will be reading and learning a lot over the next several weeks.
Some of us use diet alone to control our symptoms, some use a combination of diet and medication. It is very rare that someone doesn't have to change their diet and almost all of us must eliminate gluten from it. As Joe wrote, many of us also have to eliminate dairy and soy.
We are here to help you and to reassure you that you will get better and you will get your life back, if you are willing to make the necessary changes in your diet.
Gloria
You never know what you can do until you have to do it.
Hello Annie, also a warm from the Netherlands, one of the other European members here (and also non native who sometimes worries about her English writing, but consider this board as a good practice exercise 
). So you have MC and Celiac. Well than for sure you have to eat gluten free. Other members have already provided with great advice. Please give the diet a serious try.
I hope this board will be as helpful for you, as it has been for me over the last one and half year.
If you have MC this is really the best place in the world.
harma
from the Netherlands, one of the other European members here (and also non native who sometimes worries about her English writing, but consider this board as a good practice exercise ). So you have MC and Celiac. Well than for sure you have to eat gluten free. Other members have already provided with great advice. Please give the diet a serious try. I hope this board will be as helpful for you, as it has been for me over the last one and half year.
If you have MC this is really the best place in the world.
harma
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Anna remember that people with MC can be and often are just as sensitive to gluten as someone with celiac disease, but with MC we do show the same blood test results as someone with classical celiac disease.
As pointed out by the others very often you will need to remove all 3 main elements from your diet
1.) All Gluten
2.) All Dairy
3.) All Soy
You should be very strict for the initial few months and then once things have settled down for a while, you can try some dairy or soy slowly to see how you do. I should say though just about all of us are sensitive to gluten for the long term.
I cannot emphasize enough how important the strict diet s at first. It will take a few weeks for the benefits of the diet and medications to become apparent.
--Joe
As pointed out by the others very often you will need to remove all 3 main elements from your diet
1.) All Gluten
2.) All Dairy
3.) All Soy
You should be very strict for the initial few months and then once things have settled down for a while, you can try some dairy or soy slowly to see how you do. I should say though just about all of us are sensitive to gluten for the long term.
I cannot emphasize enough how important the strict diet s at first. It will take a few weeks for the benefits of the diet and medications to become apparent.
--Joe
Joe
Sorry Anna, I don't understand it very well, what were or are your problems with entocort, do you experience side effect of the medication or doesn't it just do nothing for the MC. What kind of other steroid you are on now, it is something like prednisone?
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
But ... i don't understand.Why I have to remove this? All my allergy tests was alright (except lactose).joefnh wrote: As pointed out by the others very often you will need to remove all 3 main elements from your diet
1.) All Gluten
2.) All Dairy
3.) All Soy
You should be very strict for the initial few months and then once things have settled down for a while, you can try some dairy or soy slowly to see how you do. I should say though just about all of us are sensitive to gluten for the long term.
I cannot emphasize enough how important the strict diet s at first. It will take a few weeks for the benefits of the diet and medications to become apparent.
--Joe
When i was only on Entocort i have abdominal pain and all problems which are connected with MC.I don't know - side effect or Entocort didn't help me.And i want to know that anyone have such kind of problems?Sorry Anna, I don't understand it very well, what were or are your problems with entocort, do you experience side effect of the medication or doesn't it just do nothing for the MC. What kind of other steroid you are on now, it is something like prednisone?
I'm on Metypred (Methylprednisolonum)
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Anna the allergy test (if they were based on blood tests) only look at reactions in your bloodstream. What we are dealing with in MC, is a localized reaction in your intestines and colon. At this stage these reactions will cause localized inflammation in the intestines and colon which results in cramping and D in most. So the easiest way to look at it is, MC is a result of a localized reaction in the gut and is localized in that tissue. This would be kind of like getting rash on your skin, the rash is localized to the skin and does not affect the rest of your body.
There is stool testing available here in the States that looks at the reactions in the stools of those with MC. Its in these tests that the members here have found those 3 main areas of ingredients show the most reactions. I know in my case that it took the diet to be able to bring the symptoms into remission.
Its those 3 main areas of ingredients that tend to produce the reactions in MC. I'm sure Tex or others will be along soon and can probably give a more detailed description soon.
--Joe
There is stool testing available here in the States that looks at the reactions in the stools of those with MC. Its in these tests that the members here have found those 3 main areas of ingredients show the most reactions. I know in my case that it took the diet to be able to bring the symptoms into remission.
Its those 3 main areas of ingredients that tend to produce the reactions in MC. I'm sure Tex or others will be along soon and can probably give a more detailed description soon.
--Joe
Joe