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Recently diagnosed and very overwhelmed already
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Recently diagnosed and very overwhelmed already
I've just been diagnosed with MC. Had a colonoscopy and the gamut of other tests. I started doing better after my doctor ordered cholestrimin (had also started taking Asocol). Actually went from 15 - 20 BMs a day to 2 or 3 (yay). Then I had a big set back one day after eating home baked goodies over a weekend. Got straightened out then the last 3 days I've had increase activity (4 - 8 BMs/day). When I'm going a lot, I hurt/ache from the waste down and there is a lot of pressure. Apparently I have internal hemmeroids also. I've actually learned more on the internet about the disease than from my doctors and they don't think that gluten should play a role (I had read an article written by Dr Fine). I'm pretty discouraged right now. I've just read several messages from members and looks like sooooo many foods and other things can cause problems. I'm just kind of numb trying to accept this whole thing and what to do to get better. Any and all advice would be appreciated.
welcome to the club. Very sorry to hear you have the disease to, like all of us. I am was diagnosed six week ago now, so I know pretty well how you must feel now. I also found most of my information on internet. And this group is really great. Everything you need to know you will find here.
I hope this support group will be as helpful for you as it is for me.
harma
I hope this support group will be as helpful for you as it is for me.
harma
hustonwv. You'll find a lot of information and support on this site. I'm glad you found us.Gluten DOES play a part even though your doctors say otherwise. There are a lot of members of this forum that disagree with the doctors who say diet has nothing to do with MC. We KNOW it does.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi, and welcome to our internet family. Yes, there's a lot to learn, especially if you choose to control your symptoms by diet, but the way to do it, is the way that you would handle any other challenging project - one step at a time, learning as you go. Be aware that some of us do not have as many sensitivities as others, (it seems to depend on our genes), and many of us are able to control our symptoms by eliminating only gluten, dairy products, and maybe soy. About half of those who are sensitive to gluten and casein, (the primary protein in dairy products), are sensitive to soy. A few of us are able to maintain remission by avoiding only gluten, and a few of us are able to maintain remission by avoiding the medication that caused MC, in the first place, (this only applies to a portion of those whose MC was initially triggered by one of the many drugs that can cause MC, and if they are not gluten-sensitive).
If you don't have hemorrhoids already, you probably will have, before it's over, unless you are fortunate enough to be able to get your symptoms under control faster than most of us. If you don't already have available, something that works, you would be well-advised to pick up a zinc-based ointment, for helping to prevent "baboon butt", as we generally refer to that condition, because it's a very common problem with MC. There are some good suggestions in this old thread:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10052
As you already know, mainstream doctors have a long way to go, to get up to speed in the knowledge necessary for successfully dealing with this disease. In general, no one understands this disease, unless they have it, so as Harma suggested, you will find that we speak your language here, since we've all been there, done that. MC can be a very humbling disease, (in more ways than one), and it is definitely life-altering, so please feel free to ask anything.
Again, welcome aboard.
Tex (Wayne)
If you don't have hemorrhoids already, you probably will have, before it's over, unless you are fortunate enough to be able to get your symptoms under control faster than most of us. If you don't already have available, something that works, you would be well-advised to pick up a zinc-based ointment, for helping to prevent "baboon butt", as we generally refer to that condition, because it's a very common problem with MC. There are some good suggestions in this old thread:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10052
As you already know, mainstream doctors have a long way to go, to get up to speed in the knowledge necessary for successfully dealing with this disease. In general, no one understands this disease, unless they have it, so as Harma suggested, you will find that we speak your language here, since we've all been there, done that. MC can be a very humbling disease, (in more ways than one), and it is definitely life-altering, so please feel free to ask anything.
Again, welcome aboard.
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.
Welcome and get well soon!
If it's advice you want, and you can afford to pay for it out of pocket, I'd go for the EL testing. If you can do nothing else, start with just the gluten antibodies which comes prepackaged with the dairy casein antibodies that are tested on a stool specimen. As in many things, the bigger the package, the more savings, but if you need to spread out the costs over time, this is the best way to go.
You can actually leave off as much as you know to leave off of things containing gluten (wheat, barley, oats, and rye, and of course, related things like spelt, etc.) immediately, but it will take you a while to find the places it's "hidden" in processed food ingredients, as just one example. After doing this, you will need to get your stool specimen sent in within a couple of months (you can't get a good result with the usual lab tests on blood if you aren't currently eating gluten, btw, as some people will want to try the traditional approach first. The blood tests tend to not help with people with M.C., but a certain percentage will come back positive on that as well. Also, either type of testing can have lab errors -- false negatives, so the blood testing isn't necessarily a bad thing, just in case you are one of the few with M.C. who'll produce a positive blood test. The more likely scenario is that you produce antibodies to gluten according to EL's stool test, but will be/would be negative for antibodies to gluten in your blood. Alot will depend on whether you want to allow your insurance co. to have the results of either types of tests.
If money is a problem, you can always save the gene tests for last as those will remain the same forever, but I would definitely do EL's as you get more information and the price is much less. Insurance SHOULD cover the genetic tests for sure since they test the same way any other lab tests (this they do via a cheek swab for the specimen).
What I would do would be to start right now to eliminate all obvious sources you can of gluten (baked goods, bread, pastas, breaded foods, soups and things thickened with flour, etc.). You can begin learning where the more hidden or minute sources are in the meantime as you will need to get rid of EVERY trace of it to slow down those anti-body/antigen reactions which are much of your problem.
You might want to leave off anything with lactose that has a dairy source as well as most of us are lactose intolerant, if not unable to have ANY form of dairy due to a reaction. If the later is the case, you'll find out when your first results come back since dairy casein antibodies is a test thrown in with the gluten antibody test. What I did was to start with the gluten and really, really study to eliminate all of it as best I could -- steep learning curve, but be dedicated for this to work.
Then, as soon as my first stool specimen was sitting on the front porch for the lab to pick up, I began leaving off all dairy to see how much that was contributing to the continued smaller amounts of diarrhea I was having once all the main symptomatology has gone. This is easier to notice if you are not eating dairy every day, and of course, don't have other allergens you are still getting that you don't know you react to, or of course, if you don't realize you're still getting gluten someplace.
Doing things in this order, by the time your results get back, you are likely to already know what the results will say.
Depending on when you can afford it, doing the layered approach, if you are still having symptoms off of all sources of gluten and dairy casein and lactose, I would next suspect soy to be the cause. Again, start removing all sources of soy as soon as your specimen is on the front porch on it's journey to the Dallas lab. Still having problems? Try the same with the egg antibody test?
If you can afford the whole package of tests that includes ones that show how much damage and malabsorption you have, then by all means do the whole thing -- like fecal fat, etc.
This makes the whole process alot simpler, and avoids your having to eliminate something when it's really something else that is the problem when you guess wrong.
What makes it so difficult to figure this out by elimination is that there is a delay in reaction times after ingestion with these types of immune reactions or sensitivities, and no one can tell any individual exactly how long it will take him/her to react after ingesting something he/she reacts to. For example, I react to my sensitivities at the first meal after exactly 24 hours has passed after ingestion. The lactose is not a protein, we just have so much damage our guts aren't able to provide the enzyme necessary to digest lactose. Therefore, I used to react to lactose within a couple of hours after ingesting it, say in a thingie of cream in my coffee at a restaurant. The immune reaction to the casein in the cream wouldn't come til 24 hours later, so I'd think it was what I'd JUST eaten, which I now know it was not. Alot of times people will give up oil or spicy foods long term that they might not have to because they notice they immediately have a number of stools immediately after eating those. Once the offending protein is gone, they'll be able to tolerate those pretty well in most cases. This will help people to understand why they aren't affected the same way after eating grease, oil, or spices each time they eat it. It's because it depends on what they ate a day or so ago, and the meal simply is a stimulus to have a BM which sets things in motion.
I have discovered that stress is no longer a trigger since I've been free of all my "allergens," and believe me, I've had a lot of that that would've sent me flying to the potty, had it not been for my diet -- it's stood the test of time and STRESS, believe me.
That's about all I've time to post right now. Try substituting potatoes from produce section, and white rice (at least white for now) for the breads and things you will be leaving off, and watch out for too much fiber for a little while. Cook the vegetables very, very well, and try eating things like canned pears and canned peaches as they seem to be easier on the tum, at least to get you started.
Yours, Luce
If it's advice you want, and you can afford to pay for it out of pocket, I'd go for the EL testing. If you can do nothing else, start with just the gluten antibodies which comes prepackaged with the dairy casein antibodies that are tested on a stool specimen. As in many things, the bigger the package, the more savings, but if you need to spread out the costs over time, this is the best way to go.
You can actually leave off as much as you know to leave off of things containing gluten (wheat, barley, oats, and rye, and of course, related things like spelt, etc.) immediately, but it will take you a while to find the places it's "hidden" in processed food ingredients, as just one example. After doing this, you will need to get your stool specimen sent in within a couple of months (you can't get a good result with the usual lab tests on blood if you aren't currently eating gluten, btw, as some people will want to try the traditional approach first. The blood tests tend to not help with people with M.C., but a certain percentage will come back positive on that as well. Also, either type of testing can have lab errors -- false negatives, so the blood testing isn't necessarily a bad thing, just in case you are one of the few with M.C. who'll produce a positive blood test. The more likely scenario is that you produce antibodies to gluten according to EL's stool test, but will be/would be negative for antibodies to gluten in your blood. Alot will depend on whether you want to allow your insurance co. to have the results of either types of tests.
If money is a problem, you can always save the gene tests for last as those will remain the same forever, but I would definitely do EL's as you get more information and the price is much less. Insurance SHOULD cover the genetic tests for sure since they test the same way any other lab tests (this they do via a cheek swab for the specimen).
What I would do would be to start right now to eliminate all obvious sources you can of gluten (baked goods, bread, pastas, breaded foods, soups and things thickened with flour, etc.). You can begin learning where the more hidden or minute sources are in the meantime as you will need to get rid of EVERY trace of it to slow down those anti-body/antigen reactions which are much of your problem.
You might want to leave off anything with lactose that has a dairy source as well as most of us are lactose intolerant, if not unable to have ANY form of dairy due to a reaction. If the later is the case, you'll find out when your first results come back since dairy casein antibodies is a test thrown in with the gluten antibody test. What I did was to start with the gluten and really, really study to eliminate all of it as best I could -- steep learning curve, but be dedicated for this to work.
Then, as soon as my first stool specimen was sitting on the front porch for the lab to pick up, I began leaving off all dairy to see how much that was contributing to the continued smaller amounts of diarrhea I was having once all the main symptomatology has gone. This is easier to notice if you are not eating dairy every day, and of course, don't have other allergens you are still getting that you don't know you react to, or of course, if you don't realize you're still getting gluten someplace.
Doing things in this order, by the time your results get back, you are likely to already know what the results will say.
Depending on when you can afford it, doing the layered approach, if you are still having symptoms off of all sources of gluten and dairy casein and lactose, I would next suspect soy to be the cause. Again, start removing all sources of soy as soon as your specimen is on the front porch on it's journey to the Dallas lab. Still having problems? Try the same with the egg antibody test?
If you can afford the whole package of tests that includes ones that show how much damage and malabsorption you have, then by all means do the whole thing -- like fecal fat, etc.
This makes the whole process alot simpler, and avoids your having to eliminate something when it's really something else that is the problem when you guess wrong.
What makes it so difficult to figure this out by elimination is that there is a delay in reaction times after ingestion with these types of immune reactions or sensitivities, and no one can tell any individual exactly how long it will take him/her to react after ingesting something he/she reacts to. For example, I react to my sensitivities at the first meal after exactly 24 hours has passed after ingestion. The lactose is not a protein, we just have so much damage our guts aren't able to provide the enzyme necessary to digest lactose. Therefore, I used to react to lactose within a couple of hours after ingesting it, say in a thingie of cream in my coffee at a restaurant. The immune reaction to the casein in the cream wouldn't come til 24 hours later, so I'd think it was what I'd JUST eaten, which I now know it was not. Alot of times people will give up oil or spicy foods long term that they might not have to because they notice they immediately have a number of stools immediately after eating those. Once the offending protein is gone, they'll be able to tolerate those pretty well in most cases. This will help people to understand why they aren't affected the same way after eating grease, oil, or spices each time they eat it. It's because it depends on what they ate a day or so ago, and the meal simply is a stimulus to have a BM which sets things in motion.
I have discovered that stress is no longer a trigger since I've been free of all my "allergens," and believe me, I've had a lot of that that would've sent me flying to the potty, had it not been for my diet -- it's stood the test of time and STRESS, believe me.
That's about all I've time to post right now. Try substituting potatoes from produce section, and white rice (at least white for now) for the breads and things you will be leaving off, and watch out for too much fiber for a little while. Cook the vegetables very, very well, and try eating things like canned pears and canned peaches as they seem to be easier on the tum, at least to get you started.
Yours, Luce
To all of you who responded, thank you. What exactly are we supposed to eat if we are sensative to gluten, dairy, soy, etc????????????? I did do a lactose intolerence test (as recommended by the doctor - drink 36 oz of milk and see if I run to the bathroom with rumbling & grumbling then watery D). I didn't have a reaction to that. So can I assume that I'm not lactose intolerant?
Do some of you take medication (like Asocol and colestermine (sp) as well as avoid gluten and other intolerances? Do any of you hurt like I've described that I do? Do any of you have a sibling with a similar bowel disease (my sister has Chrons (sp))?
Do any of you react to caffiene? That's all I will bother you all with for now. I have lots of questions. The $100 question is "can I be done now?" ..................
P.S. Love the humor on this site (once I get beyond my pity party, maybe I can be funny too)!
Do some of you take medication (like Asocol and colestermine (sp) as well as avoid gluten and other intolerances? Do any of you hurt like I've described that I do? Do any of you have a sibling with a similar bowel disease (my sister has Chrons (sp))?
Do any of you react to caffiene? That's all I will bother you all with for now. I have lots of questions. The $100 question is "can I be done now?" ..................
P.S. Love the humor on this site (once I get beyond my pity party, maybe I can be funny too)!
Welcome! You've gotten a lot of good advice, and if I could just repeat, do the Enterolab testing for gluten, dairy, soy, eggs and yeast. Alltogether it will cost you about $400, but it will be the best investment you will ever make. You will know for sure which of these common allergens to eliminate and that will help you get your life back as fast as possible. It's not as hard as you think, once you put your mind to it. There is lots of help on this Forum, and you can find substitutes for most of your beloved foods. I'm gluten, dairy, soy, yeast and corn intolerant, but I eat very well at home. In fact, my DH, who doesn't have any dietary issues, says that he likes my new creations. For example, I made steak fahitas for dinner last night, with rice instead of tortillas, and sauteed onions and peppers, guacamole and salsa. We decided that we actually prefered the dish with rice! My DH scarfed it down and was disappointed that there weren't any leftovers.
Good luck!
Rosie
Good luck!
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
To all of you who responded, thank you. What exactly are we supposed to eat if we are sensative to gluten, dairy, soy, etc?????????????
Here are several hundred gourmet quality recipes, and all of Dee's recipes are gluten-free, dairy-free, and soy-free.
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
I did do a lactose intolerence test (as recommended by the doctor - drink 36 oz of milk and see if I run to the bathroom with rumbling & grumbling then watery D). I didn't have a reaction to that. So can I assume that I'm not lactose intolerant?
Yes, but that doesn't mean that you are not casein-intolerant.
Do some of you take medication (like Asocol and colestermine (sp) as well as avoid gluten and other intolerances?
Yes and no. A few take Asacol as a maintenance medication, but it is not a very effective drug for achieving remission. Very, very few members have found cholestyramine to be of any benefit, (IOW, sequestering bile acid rarely helps). Entocort is an effective treatment for MC, and quite a few members take it. Together with diet changes, it's the fastest way to attain remission, for most people with MC.
Do any of you hurt like I've described that I do?
Yep, in fact, many of us hurt a lot worse than your description. For some of us, the pain is on a par with childbirth.
Do any of you have a sibling with a similar bowel disease (my sister has Chrons (sp))?
Yes, but not all of us.
Do any of you react to caffiene?
If caffeine bothered us before we developed MC, then it still bothers us. If it didn't bother us before we developed MC, then it usually doesn't bother us now. IOW, we're no different than the general population, as far as caffeine is concerned.
That's all I will bother you all with for now. I have lots of questions. The $100 question is "can I be done now?" ..................
Call me an ignorant old country boy, but I'm not sure I understand what you mean by that question. 
Tex
Here are several hundred gourmet quality recipes, and all of Dee's recipes are gluten-free, dairy-free, and soy-free.
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
I did do a lactose intolerence test (as recommended by the doctor - drink 36 oz of milk and see if I run to the bathroom with rumbling & grumbling then watery D). I didn't have a reaction to that. So can I assume that I'm not lactose intolerant?
Yes, but that doesn't mean that you are not casein-intolerant.
Do some of you take medication (like Asocol and colestermine (sp) as well as avoid gluten and other intolerances?
Yes and no. A few take Asacol as a maintenance medication, but it is not a very effective drug for achieving remission. Very, very few members have found cholestyramine to be of any benefit, (IOW, sequestering bile acid rarely helps). Entocort is an effective treatment for MC, and quite a few members take it. Together with diet changes, it's the fastest way to attain remission, for most people with MC.
Do any of you hurt like I've described that I do?
Yep, in fact, many of us hurt a lot worse than your description. For some of us, the pain is on a par with childbirth.
Do any of you have a sibling with a similar bowel disease (my sister has Chrons (sp))?
Yes, but not all of us.
Do any of you react to caffiene?
If caffeine bothered us before we developed MC, then it still bothers us. If it didn't bother us before we developed MC, then it usually doesn't bother us now. IOW, we're no different than the general population, as far as caffeine is concerned.
That's all I will bother you all with for now. I have lots of questions. The $100 question is "can I be done now?" ..................
Call me an ignorant old country boy, but I'm not sure I understand what you mean by that question. 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.
WELCOME HUSTONVW!!! 
I agree with everything others have written. Our GIs will never be of any help when it comes to figuring out the connection that diet has with this illness. Part of the reason is because we each have different intolerances, although nearly everyone has a gluten intolerance and most have a casein intolerance. GIs use the "gold standard" test for gluten intolerance, which is a blood test and flattened villi, but most of us will test negative to gluten sensitivity using the blood test. The Enterolab stool test is able to test for antibodies before they advance to the blood and is a much more sensitive and reliable test. Dr. Fine is in the process of publishing his results, but until then, much of the medical community is unaware of stool testing and won't order it for you.
If you have a casein intolerance, lactose intolerance is a moot issue - you'll need to avoid all dairy. There are many substitutions for milk, however, and you'll even find recipes in Dee's kitchen on how to make your own rice milk, if you desire. About half of us are intolerant to soy. If you are in the other half, then you have many more options for milk, yogurt and cheese.
I chose to have the Enterolab testing. While it was initially a shock to be told I had so many intolerances, it saved me a lot of guessing and hopefully shortened my healing time. I am managing my MC by diet and a maintenance dosage of Entocort EC.
We are here to help you along your path to remission. You will get better and you will get your life back.
Gloria
I agree with everything others have written. Our GIs will never be of any help when it comes to figuring out the connection that diet has with this illness. Part of the reason is because we each have different intolerances, although nearly everyone has a gluten intolerance and most have a casein intolerance. GIs use the "gold standard" test for gluten intolerance, which is a blood test and flattened villi, but most of us will test negative to gluten sensitivity using the blood test. The Enterolab stool test is able to test for antibodies before they advance to the blood and is a much more sensitive and reliable test. Dr. Fine is in the process of publishing his results, but until then, much of the medical community is unaware of stool testing and won't order it for you.
If you have a casein intolerance, lactose intolerance is a moot issue - you'll need to avoid all dairy. There are many substitutions for milk, however, and you'll even find recipes in Dee's kitchen on how to make your own rice milk, if you desire. About half of us are intolerant to soy. If you are in the other half, then you have many more options for milk, yogurt and cheese.
I chose to have the Enterolab testing. While it was initially a shock to be told I had so many intolerances, it saved me a lot of guessing and hopefully shortened my healing time. I am managing my MC by diet and a maintenance dosage of Entocort EC.
We are here to help you along your path to remission. You will get better and you will get your life back.
Gloria
You never know what you can do until you have to do it.
HoustonVW
So sorry you have MC, but here is the best place to be guided on the road to finding remission. As has been said it is a steep learning curve to sort out all the hidden food intolerances and it is going to take time. Keep reading the stuff on this board and you will find out more and more on how to handle this disease. There is no magic bullet (yet anyway) but you will get your life back.
All the very best
So sorry you have MC, but here is the best place to be guided on the road to finding remission. As has been said it is a steep learning curve to sort out all the hidden food intolerances and it is going to take time. Keep reading the stuff on this board and you will find out more and more on how to handle this disease. There is no magic bullet (yet anyway) but you will get your life back.
All the very best
Please know that things can get better - I had a normal bm yesterday, first in over 6 months. It may not last but I savour this moment as I know now that I can have periods of time without the dreaded D. I've not had one today so who knows what'll happen next, but this is a victory!
Where I was 6 months ago -
I was in the bathroom over 20 times a day (my record is 28) with watery explosive D, dreadful pain, hemorrhoids, gurgling and whooshing noises, and I lost 2 dress sizes because nothing stayed around. I was housebound and often wore Depends because of accidents. I pooped the bed and also on the carpet because I couldn't move fast enough. My life was a shambles.
My life now is gf df and sf. As I posted the other day, I've learned what I can and cannot eat, and I eat well: turkey; chicken; sometimes pork; rice, sweet potato; potato; carrots; marrow; zucchini; asparagus; cooked fruit; rice pasta; I drink vanilla rice milk. I bake using brown rice flour; tapioca flour; potato flour and starch; almond flour; teff.
We have soups; fish cooked many ways; turkey meatloaf; all sorts of pasta dishes with meat and/or veg; roasts; mild curry; chops; stews; pizza (home made crust and rice cheese); chicken breasts done lots of ways. I make my own bread and I bake all sorts of things. For Cdn Thanksgiving we had the works, from home made soup to turkey and stuffing to pie. This weekend I made Dee's pumpkin pie from my Halloween pumpkin, and date pecan squares, and my visitors didn't know they were gf df sf. They wanted to take some home.
It was no fun adjusting to this new life, especially as I was depressed, debilitated, and rushing to the bathroom but I persevered, and I have routines now. I've come to terms (mostly!) with the fact I have MC and that with help from my new friends on the forum, so far I am winning the battle.
I realise I am luckier than many in that I am only (!) gluten, dairy, and soy intolerant and that I've responded incredibly well to the changes and the Pentasa (Asacol) meds.. The diet changes have returned my life to me.
Where I was 6 months ago -
I was in the bathroom over 20 times a day (my record is 28) with watery explosive D, dreadful pain, hemorrhoids, gurgling and whooshing noises, and I lost 2 dress sizes because nothing stayed around. I was housebound and often wore Depends because of accidents. I pooped the bed and also on the carpet because I couldn't move fast enough. My life was a shambles.
My life now is gf df and sf. As I posted the other day, I've learned what I can and cannot eat, and I eat well: turkey; chicken; sometimes pork; rice, sweet potato; potato; carrots; marrow; zucchini; asparagus; cooked fruit; rice pasta; I drink vanilla rice milk. I bake using brown rice flour; tapioca flour; potato flour and starch; almond flour; teff.
We have soups; fish cooked many ways; turkey meatloaf; all sorts of pasta dishes with meat and/or veg; roasts; mild curry; chops; stews; pizza (home made crust and rice cheese); chicken breasts done lots of ways. I make my own bread and I bake all sorts of things. For Cdn Thanksgiving we had the works, from home made soup to turkey and stuffing to pie. This weekend I made Dee's pumpkin pie from my Halloween pumpkin, and date pecan squares, and my visitors didn't know they were gf df sf. They wanted to take some home.
It was no fun adjusting to this new life, especially as I was depressed, debilitated, and rushing to the bathroom but I persevered, and I have routines now. I've come to terms (mostly!) with the fact I have MC and that with help from my new friends on the forum, so far I am winning the battle.
I realise I am luckier than many in that I am only (!) gluten, dairy, and soy intolerant and that I've responded incredibly well to the changes and the Pentasa (Asacol) meds.. The diet changes have returned my life to me.
Maxine
Maxine,
What a wonderful and inspiring post! I'm so happy that you have gotten your life back. I just read parts of your post to DH and told him that some people have had MC symptoms much worse than me. You have made tremendous progress and are a testament to diet being the key.
Gloria
What a wonderful and inspiring post! I'm so happy that you have gotten your life back. I just read parts of your post to DH and told him that some people have had MC symptoms much worse than me. You have made tremendous progress and are a testament to diet being the key.
Gloria
You never know what you can do until you have to do it.
Gloria, thanks - I wanted our new poster to know just how much difference diet can make. I still have pain which the Pentasa is supposed to solve eventually by healing the inflammation in my gut, and I still get times of depression/low spirits.
Some of that depression is tinged with anger and sorrow. Not for me and my MC and the havoc it has wreaked, but anger against the medical profession and their ignorance and often lack of interest in MC and what amounts to a refusal of many PCPs and GIs to agree diet plays a part; sorrow for all those out there who either don't know they have MC because "it's only diarrhea", or have been given their dx but are unaware of the crucial role of diet and therefore are suffering needlessly. This desperation comes through in the postings of many new members.
I was lucky. My PCP had no idea what was causing the continuous D and after a couple of weeks realised she was looking at something not normal and outside of her knowledge. She referred me to a GI. He was thorough, but slow, and kept me in the dark too much at first, but he does know about MC and has other patients with it. He doesn't believe that diet is high in the causes list but agrees that for me gluten and dairy are a cause. - he said that the evidence "in my case" was very obvious.
It is my fervent hope that my continual nagging at him about diet and my amazing response to removing the offenders from my diet will result in him working with his other patients on their diet. I realise he can't discuss other sufferers or their treatments but I have actually said to him that I bet his other patients will find they have gluten intolerance and possibly dairy, soy etc. I hope he took the hint!
Some of that depression is tinged with anger and sorrow. Not for me and my MC and the havoc it has wreaked, but anger against the medical profession and their ignorance and often lack of interest in MC and what amounts to a refusal of many PCPs and GIs to agree diet plays a part; sorrow for all those out there who either don't know they have MC because "it's only diarrhea", or have been given their dx but are unaware of the crucial role of diet and therefore are suffering needlessly. This desperation comes through in the postings of many new members.
I was lucky. My PCP had no idea what was causing the continuous D and after a couple of weeks realised she was looking at something not normal and outside of her knowledge. She referred me to a GI. He was thorough, but slow, and kept me in the dark too much at first, but he does know about MC and has other patients with it. He doesn't believe that diet is high in the causes list but agrees that for me gluten and dairy are a cause. - he said that the evidence "in my case" was very obvious.
It is my fervent hope that my continual nagging at him about diet and my amazing response to removing the offenders from my diet will result in him working with his other patients on their diet. I realise he can't discuss other sufferers or their treatments but I have actually said to him that I bet his other patients will find they have gluten intolerance and possibly dairy, soy etc. I hope he took the hint!
Maxine