Getting started...
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Getting started...
Hi - newbie here…. I was diagnosed 2 weeks ago with MC. i have to tell you that my symptoms are mild. By that I mean I mostly have bloating, nausea, swelling and mild pain in joints, D but only once or twice daily. At first I suspected Celiac or at least some sensitivities. No Celiac determined by blood work and colonoscopy and endoscopy. Biopsy determined MC. Doc put me on Budesonide 3 3mg for 1 month, 2 3mg for 1 month and then 1 3mg for 1 month. My questions: I also have anemia and take Iron. I HATE taking multiple meds so have stopped for now. Is that wise? Is anemia common in MC patients? I assume since my symptoms are mild the 3 month course on Budesonide is okay? Saw post on here about a 6 month course being protocol…. I am thinking about elimination diet (saw one on here but it was mainly rice, banana, potato and chicken - but since my D symptoms are not severe….I'm thinking this might not be the one for me? Suggestions?)Also, I have pain near appendix off and on nothing major….normal in MC? And it also causes same kind of pain in back located about same area but in my back. i've tried to research this site but sometimes I get confused by all the info and just wanted to get feedback. Doc lead me to believe that meds would cure MC….yes or no?
Hi,
Welcome to the board. I'll answer your last question first. No, not only will meds not cure MC, but there is no known cure for MC. We control it by avoiding our food sensitivities, and as long as we do a good job of avoiding all problem foods (and manage to avoid chronic stress), we remain in remission. Severe chronic stress can cause a relapse of symptoms at any time, so learning to control stress is an important part of controlling the symptoms of MC. Some medications can help to mask the symptoms of MC, but they certainly will not cure the disease.
After you write a few more posts, the system will allow you to use the Search the Archives of This Discussion Board option to use key word searches. That option is initially barred for new members to prevent spammers from joining the board just so they can use their membership to mine member contact information to sell to other spammers.
The severity of clinical symptoms is unrelated to the degree of inflammation associated with the disease, so it's impossible to say whether you have a mild case, or not, despite what your doctor might have told you. Consider yourself lucky if your symptoms are mild, but be aware that the inflammation may be more severe than the symptoms suggest.
Anemia is not common with MC, but it's not rare, either. I had the problem when I was first diagnosed. Vitamin B-12 deficiency, and vitamin D deficiency are quite common with the disease.
You don't have to take budesonide just because your doctor suggested it, if your symptoms don't warrant it. The budesonide will not "cure" your MC anyway, and it may mask food sensitivities, which makes it much more difficult to track down food sensitivities. The diet changes are what will allow your gut to heal. Corticosteroids actually retard healing, but they are popular because they mask the symptoms to make life more pleasant while the diet is healing the gut. Healing takes time (usually at least 6 months to a year), so that's why many people prefer to use budesonide while they are in the early stages of recovery.
The correct elimination diet (for you) is one that does not contain any foods that cause inflammation (the production of antibodies), and one that minimizes fiber, sugar, all artificial sweeteners, and spicy seasonings. We're all different, so there is no one-size-fits-all safe diet. That's why the EnteroLab tests are so popular — they remove most of the guesswork, at least about most of the major food sensitivities.
Yes, pain in the lower right quadrant is common with MC. That was a common problem for me, but like others here, I sometimes had pain in various other areas, also.
Again, welcome to the board, and please feel free to ask anything.
Tex
Welcome to the board. I'll answer your last question first. No, not only will meds not cure MC, but there is no known cure for MC. We control it by avoiding our food sensitivities, and as long as we do a good job of avoiding all problem foods (and manage to avoid chronic stress), we remain in remission. Severe chronic stress can cause a relapse of symptoms at any time, so learning to control stress is an important part of controlling the symptoms of MC. Some medications can help to mask the symptoms of MC, but they certainly will not cure the disease.
After you write a few more posts, the system will allow you to use the Search the Archives of This Discussion Board option to use key word searches. That option is initially barred for new members to prevent spammers from joining the board just so they can use their membership to mine member contact information to sell to other spammers.
The severity of clinical symptoms is unrelated to the degree of inflammation associated with the disease, so it's impossible to say whether you have a mild case, or not, despite what your doctor might have told you. Consider yourself lucky if your symptoms are mild, but be aware that the inflammation may be more severe than the symptoms suggest.
Anemia is not common with MC, but it's not rare, either. I had the problem when I was first diagnosed. Vitamin B-12 deficiency, and vitamin D deficiency are quite common with the disease.
You don't have to take budesonide just because your doctor suggested it, if your symptoms don't warrant it. The budesonide will not "cure" your MC anyway, and it may mask food sensitivities, which makes it much more difficult to track down food sensitivities. The diet changes are what will allow your gut to heal. Corticosteroids actually retard healing, but they are popular because they mask the symptoms to make life more pleasant while the diet is healing the gut. Healing takes time (usually at least 6 months to a year), so that's why many people prefer to use budesonide while they are in the early stages of recovery.
The correct elimination diet (for you) is one that does not contain any foods that cause inflammation (the production of antibodies), and one that minimizes fiber, sugar, all artificial sweeteners, and spicy seasonings. We're all different, so there is no one-size-fits-all safe diet. That's why the EnteroLab tests are so popular — they remove most of the guesswork, at least about most of the major food sensitivities.
Yes, pain in the lower right quadrant is common with MC. That was a common problem for me, but like others here, I sometimes had pain in various other areas, also.
Again, welcome to the board, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Hey DS2,
welcome (not soo good that you have MC and had to find us)
Tex has answered your questions.
I wish i could offer a quick fix or guaranteed solution to life with MC, the reality is, there isnt one.
MC can be managed, and be in remission, albeit it is with you for life. you cant eliminate it for ever.
as tex mentioned the elimination diet is whatever works for you, what ever settles the best with minimal to no symptoms.
Keep a food/activity/symptom diary and you will be able to track what works and what doesnt.
Read the posts in the New members section and at the top of this main message section.
take your time, it will take a bit to get your head around what is discussed, and if it has relevance to you
take care
welcome (not soo good that you have MC and had to find us)
Tex has answered your questions.
I wish i could offer a quick fix or guaranteed solution to life with MC, the reality is, there isnt one.
MC can be managed, and be in remission, albeit it is with you for life. you cant eliminate it for ever.
as tex mentioned the elimination diet is whatever works for you, what ever settles the best with minimal to no symptoms.
Keep a food/activity/symptom diary and you will be able to track what works and what doesnt.
Read the posts in the New members section and at the top of this main message section.
take your time, it will take a bit to get your head around what is discussed, and if it has relevance to you
take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thanks Tex and Gabes
I did try a search, will try again after a few posts. I did ask my GI about food sensitivities, he said that wouldn't have anything to do with it. I said I'd probably try elimination diet anyway and he said good luck, that's real tough to follow through with……I see him in about two weeks for followup. It should be an interesting conversation, especially since I've read about MC and am a little more informed myself. I have to say, when he told me food allergies had nothing to do with it, I was relieved. Now I know better and can't wait to find the cause and hope I'm ready for the "long-haul".
Anyway, thanks for the replies and thanks so much for being a part of the boards. I've seen your names quite a bit and the information you offer is valuable and encouraging for so many.
I did try a search, will try again after a few posts. I did ask my GI about food sensitivities, he said that wouldn't have anything to do with it. I said I'd probably try elimination diet anyway and he said good luck, that's real tough to follow through with……I see him in about two weeks for followup. It should be an interesting conversation, especially since I've read about MC and am a little more informed myself. I have to say, when he told me food allergies had nothing to do with it, I was relieved. Now I know better and can't wait to find the cause and hope I'm ready for the "long-haul".
Anyway, thanks for the replies and thanks so much for being a part of the boards. I've seen your names quite a bit and the information you offer is valuable and encouraging for so many.
Hello DS2 and 
!
You already have some great advice, so I'll be brief.
It does sound as if you can forego the iron for now if your anemia is mild. However, since iron is constipating, maybe it is actually helping you some.
There is nothing magical about 6 mo. of budenoside treatment. You may indeed be fine with only 3 mo., especially if you are able to identify and eliminate your problem foods during that time. I agree that Enterolab is a great way to start.
I have no doubt that you will be on your way to health very soon, with your attitude and willingness to design your own treatment program (despite what your doc says about food sensitivities).
Best of luck,
Polly
!You already have some great advice, so I'll be brief.
It does sound as if you can forego the iron for now if your anemia is mild. However, since iron is constipating, maybe it is actually helping you some.
There is nothing magical about 6 mo. of budenoside treatment. You may indeed be fine with only 3 mo., especially if you are able to identify and eliminate your problem foods during that time. I agree that Enterolab is a great way to start.
I have no doubt that you will be on your way to health very soon, with your attitude and willingness to design your own treatment program (despite what your doc says about food sensitivities).
Best of luck,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Welcome DS2,
I too am newbie. Started April 1st. on elimination diet and having no problem sticking to it. My reward is that I am now on day3 being D free. Thank God I found these wonderful folks here. I feel better today than I have since last September . Best wishes on your MC Journey
I too am newbie. Started April 1st. on elimination diet and having no problem sticking to it. My reward is that I am now on day3 being D free. Thank God I found these wonderful folks here. I feel better today than I have since last September . Best wishes on your MC Journey
Diabetic DX June 2012
Diverticulosis/ MC DX Feb.2014
I am thankful for my struggle because without it I wouldn't have stumbled across my strength.
What are you willing to let go of so you can live the life you know you deserve?
Diverticulosis/ MC DX Feb.2014
I am thankful for my struggle because without it I wouldn't have stumbled across my strength.
What are you willing to let go of so you can live the life you know you deserve?
Welcome DS2! It sounds like your doctor is like many of our doctors….clueless about the food connection to MC.
I was dx over 2 years ago. I did go on Entocort, but also did a major elimination diet at the same time. I was able to reduce my dose pretty quickly, but it's important to wean very slowly off of it at the end. Since you don't have severe symptoms, keep in mind that if you do take the drug and you start to get constipated, THAT is the time to lower the dose. THINGS CAN GET PRETTY UNCOMFORTABLE IF YOU KEEP TAKING TOO HIGH A DOSE.
If you have been reading posts here, you already know that gluten and dairy should be the first two foods that you eliminate….and anything with too much fiber. it's like sandpaper on an open wound. That would be things like RAW fruits and veggies, salad, beans and legumes,and oats. Also, spicy and acid foods don't sit well either. Sugar can be very gassy as is artificial sweeteners. If you still drink caffeine, that can also be an issue. When I was down to one 3mg. pill, I then notices that I was reacting to peanut butter and GF soy sauce, so I realized that soy and it's cousins ( lentils and split peas also) were a problem. The drug was masking it.
Tex has written a book and you can purchase it from Amazon by hitting the picture in the upper right hand corner of this page. It's full of great information.
this process takes time and patience, but it seems like you have the right attitude. Good luck and keep us posted.
Leah
I was dx over 2 years ago. I did go on Entocort, but also did a major elimination diet at the same time. I was able to reduce my dose pretty quickly, but it's important to wean very slowly off of it at the end. Since you don't have severe symptoms, keep in mind that if you do take the drug and you start to get constipated, THAT is the time to lower the dose. THINGS CAN GET PRETTY UNCOMFORTABLE IF YOU KEEP TAKING TOO HIGH A DOSE.
If you have been reading posts here, you already know that gluten and dairy should be the first two foods that you eliminate….and anything with too much fiber. it's like sandpaper on an open wound. That would be things like RAW fruits and veggies, salad, beans and legumes,and oats. Also, spicy and acid foods don't sit well either. Sugar can be very gassy as is artificial sweeteners. If you still drink caffeine, that can also be an issue. When I was down to one 3mg. pill, I then notices that I was reacting to peanut butter and GF soy sauce, so I realized that soy and it's cousins ( lentils and split peas also) were a problem. The drug was masking it.
Tex has written a book and you can purchase it from Amazon by hitting the picture in the upper right hand corner of this page. It's full of great information.
this process takes time and patience, but it seems like you have the right attitude. Good luck and keep us posted.
Leah
Thanks all! Okay, the more I read the more I get a little afraid of going GF, SF, DF etc…….
I don't think I would be very successful with elimination unless I have a starting point. So, how long before you get results from Enterolab?
Also, anybody here ever do HCG diet? I'm wondering if that is what triggered all this in the first place. The diet uses the hormone HCG to reduce the fat in your body. While on the diet, you eat a mere 500 calories per day. (LF Beef, Chicken, Fish and a few fruits and vegetables). This sounds horrible, but honestly, I was not hungry in the least b/c the hormone was making my body use the stored fat. Anyway, after off the HCG you are to slowly add foods back into your diet. However, it was during an ice storm and we were out of our house for 1 week so very little control of the food I could get (plus stores were closed). So the phase where I was supposed to add in to determine what foods would cause me to gain….never happened. I gained back all the weight within 1 year.
So, I could go back on that diet, lose weight and not be hungry while eliminating many foods. Just wondering if the hormone would cause problems.
One more ?? - does budesonide help with migraines?
I don't think I would be very successful with elimination unless I have a starting point. So, how long before you get results from Enterolab?
Also, anybody here ever do HCG diet? I'm wondering if that is what triggered all this in the first place. The diet uses the hormone HCG to reduce the fat in your body. While on the diet, you eat a mere 500 calories per day. (LF Beef, Chicken, Fish and a few fruits and vegetables). This sounds horrible, but honestly, I was not hungry in the least b/c the hormone was making my body use the stored fat. Anyway, after off the HCG you are to slowly add foods back into your diet. However, it was during an ice storm and we were out of our house for 1 week so very little control of the food I could get (plus stores were closed). So the phase where I was supposed to add in to determine what foods would cause me to gain….never happened. I gained back all the weight within 1 year.
So, I could go back on that diet, lose weight and not be hungry while eliminating many foods. Just wondering if the hormone would cause problems.
One more ?? - does budesonide help with migraines?
No, I don't think Budesonide helps with Migraines, but I guess you never know what side effects will occur.
I have not heard of that diet, but it sounds very unhealthy at only 500 calories and counterproductive because when you eat so few calories, your metabolism slows down to "store calories" because you are starving it. Then when you add foods back in, you gain it back even faster because now your body is " holding on" to every calorie you give it. I never put my clients on less than 1200 calories.
When it comes to taking HCG, again, I wouldn't recommend it…especially with MC. Usually, when we are in a flare, it's best to stop taking most supplements ( besides maybe D and B-12) until we are healed and feeling much better. The less you give your system to deal with, the better.
Once Enterolab gets your sample, it takes 3 weeks to get results.
One thing about that diet that is good is that it is high in protein. You could eat the meats and Eggs, but instead of fruit eat very cooked easy to digest cooked veggies like carrots, squashes, and green beans, sweet potato, and maybe some white rice. Homemade broth soups are good also. My suggestion is to do this until you get your results back from Enterolab and then you can adjust it from there.
Leah
I have not heard of that diet, but it sounds very unhealthy at only 500 calories and counterproductive because when you eat so few calories, your metabolism slows down to "store calories" because you are starving it. Then when you add foods back in, you gain it back even faster because now your body is " holding on" to every calorie you give it. I never put my clients on less than 1200 calories.
When it comes to taking HCG, again, I wouldn't recommend it…especially with MC. Usually, when we are in a flare, it's best to stop taking most supplements ( besides maybe D and B-12) until we are healed and feeling much better. The less you give your system to deal with, the better.
Once Enterolab gets your sample, it takes 3 weeks to get results.
One thing about that diet that is good is that it is high in protein. You could eat the meats and Eggs, but instead of fruit eat very cooked easy to digest cooked veggies like carrots, squashes, and green beans, sweet potato, and maybe some white rice. Homemade broth soups are good also. My suggestion is to do this until you get your results back from Enterolab and then you can adjust it from there.
Leah
I've never heard of that diet either, and I'm unfamiliar with the HCG hormone. We do know that significant changes in certain hormone levels can trigger MC, but we don't know whether that particular one poses a risk. Regarding Leah's comments about the diet, note that she is a licensed nutritionist.
As Leah mentioned, budesonide is not likely to prevent migraines, because one of its listed side effects is headaches.
If you are currently having migraines though, I can tell you how to stop them — cut gluten out of your diet, 100 % (including all trace amounts). IMO, untreated gluten sensitivity is the number one cause of migraines, and for some strange reason, doctors fail to recognize that. They prefer to prescribe drugs to treat them.
Like many others here, I never had a migraine in my life, until MC triggered gluten sensitivity. After that, migraines were a regular debilitating problem, until I figured out what was happening to me, and I cut gluten out of my diet forever. I haven't had a migraine headache since. I did have a couple of episodes of acephalgic migraines a few years ago, and I traced them back to MSG in my diet. After I cut out the MSG, I didn't have any more acephalgic migraines. Acephalgic migraines are visual auras without any headache pain at all.
Tex
As Leah mentioned, budesonide is not likely to prevent migraines, because one of its listed side effects is headaches.
If you are currently having migraines though, I can tell you how to stop them — cut gluten out of your diet, 100 % (including all trace amounts). IMO, untreated gluten sensitivity is the number one cause of migraines, and for some strange reason, doctors fail to recognize that. They prefer to prescribe drugs to treat them.
Like many others here, I never had a migraine in my life, until MC triggered gluten sensitivity. After that, migraines were a regular debilitating problem, until I figured out what was happening to me, and I cut gluten out of my diet forever. I haven't had a migraine headache since. I did have a couple of episodes of acephalgic migraines a few years ago, and I traced them back to MSG in my diet. After I cut out the MSG, I didn't have any more acephalgic migraines. Acephalgic migraines are visual auras without any headache pain at all.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Like tex, migraine occurrence stopped when I went gluten free.
Only time I had them was when I had a major mast cell/histamine flare,
Diet/eating plan wise, focus on keeping it simple, well cooked easy to digest meals.
Keep a journal, track what you eat, activities, medication, symptoms and in a short time you will be able to see what's working, and what isn't.
Only time I had them was when I had a major mast cell/histamine flare,
Diet/eating plan wise, focus on keeping it simple, well cooked easy to digest meals.
Keep a journal, track what you eat, activities, medication, symptoms and in a short time you will be able to see what's working, and what isn't.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Okay - thanks again. I'll start a journal now, even though not fully prepared to go 100% GF - only b/c I'm not sure where it "hides". My plan is organic chicken, fish and beef (since just going GF) with vegetables (no nightshades - have to look that up) and fruits (except citrus) I'll search here and find a good basic list of less offending foods. Thanks.
Tex - the only reason I moved (actually duplicated) it is because I wanted HCG and Migraines in the title to hopefully draw in anybody that has done the HCG diet. However ….. just noticed I can edit my original post and could have just changed the post subject.
There is quite a bit of controversy over HCG diet. I think what happened is that during that, I virtually had no gluten so once off, bam, my body was hit with gluten. Which by the way is NOT what I should have done. Done correctly, I probably could have discovered my gluten sensitivity and any other food sensitivities pretty quickly. I won't be doing it again.
Tex - the only reason I moved (actually duplicated) it is because I wanted HCG and Migraines in the title to hopefully draw in anybody that has done the HCG diet. However ….. just noticed I can edit my original post and could have just changed the post subject.
There is quite a bit of controversy over HCG diet. I think what happened is that during that, I virtually had no gluten so once off, bam, my body was hit with gluten. Which by the way is NOT what I should have done. Done correctly, I probably could have discovered my gluten sensitivity and any other food sensitivities pretty quickly. I won't be doing it again.
When a food sensitivity is difficult to pin down, the best way to make it obvious is to totally avoid the food long enough to allow the antibody levels to decline somewhat, and then reintroduce the food. The resulting reaction will make it very clear that you are sensitive to the food.
I understand your point, but in the almost 9 years of the existence of this board, no one has ever mentioned the HCG diet before, so I doubt that any other member here has ever tried it. And to double check my memory, I did a search of the archives. The only 2 posts to show up were yours.
Tex
I understand your point, but in the almost 9 years of the existence of this board, no one has ever mentioned the HCG diet before, so I doubt that any other member here has ever tried it. And to double check my memory, I did a search of the archives. The only 2 posts to show up were yours.
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.
DS2, just be careful with the fruit. Most of us can not handle raw fruits when we have inflammation. Some can do a little banana, but it's best to wait until your symptoms are better to test each fruit independently. Our inflamed gut just doesn't produce the enzymes to break down the sugars before heading into the large intestine ( and causing problems). The fiber isn't good either.
leah
leah
DS2,
I was on the HCG diet a couple of years ago and it wasn't a problem for me, MC wise. I have been in remission for several years now. By process of elimination, I am only gluten intolerant. Once you get a handle on your intolerances, you might give the paleo diet a try. I have more success losing weight on that diet. It is one that I can follow very easily and isn't very expensive.
Good luck.
Brenda
I was on the HCG diet a couple of years ago and it wasn't a problem for me, MC wise. I have been in remission for several years now. By process of elimination, I am only gluten intolerant. Once you get a handle on your intolerances, you might give the paleo diet a try. I have more success losing weight on that diet. It is one that I can follow very easily and isn't very expensive.
Good luck.
Brenda
Brenda