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Hi everyone, I've been reading your posts and am so happy that there are other people out there because some of my doctors haven't even HEARD of lymphocytic colitis. I was diagnosed about 4 months ago. It was caused by the antibiotic minocycline, which i had been taking since I was 17 for acne, which ended up causing the extremely rare (1 in 10,000 people who have been taking it for over 3 years get it) minocycline induced hepatitis and lupis. My liver was shutting down, I had crazy joint problems (couldn't bend my fingers at all), and and intestinal problems and lost 20 pounds (im 5 ft 8 and I weigh only 106 now, crazy). basically my body was just attacking itself like no other, and once I figured out that it was the minocin I stopped it and everything went away, except, you guessed it, the intestinal problems (and a slight lingering of joint pain in the morning).
That was when i got the diagnosis of MC. I had never had any problems eating anything until this started, but I just got my entero test results back and I am very gluten sensitive and also sensitive to quesine (sp?). My question about the quesine is that isn't it only in cows milk? Can I eat goat dairy? I'm curious as to why my doctor didn't test for lactose or soy, are those separate tests? Ill ask him.
I started Entero yesterday. How long does it usually take for there to be some improvement?
I have been reading a few of your forums about probiotics but its all a little jumbly for me. What totally dairy free probiotics do you guys like?
Thanks so much for being here!
-Amy
21 year old MC newbie with questions
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
to this wonderful board. You are amongst friends who understand. People who are much more experienced than me will be along soon. All best ant
Hi Amy, and Welcome.
I am sure you will find people here are a great help in getting you on the path to healing (and supporting you).
Casein is the protein in milk, lactose is the sugar in milk. Casein is in all cows milk, and also in goat milk. It also appears in places you don't expect - such as in some soy milk or cheese or gluten free baked goods. The ones that amaze me are why gluten and dairy can appear in processed meats such as ham!
You will get very good at reading labels!
The test for lactose is separate, and as my doc said, if you already gave up the dairy it doesn't really make much practical difference to know about the lactose. Tex will appear soon to explain how lactose isn't really an intolerance in the same way as casein and gluten. Soy is also a separate test.
I'll let someone else answer about the drug treatment. I control my LC with diet alone. I respond very quickly to withdrawing the troublesome foods - like 2 days. For other people it can take a lot longer to achieve remission.
Good luck in achieving remission - you have come to the right place to find help.
Lyn
I am sure you will find people here are a great help in getting you on the path to healing (and supporting you).
Casein is the protein in milk, lactose is the sugar in milk. Casein is in all cows milk, and also in goat milk. It also appears in places you don't expect - such as in some soy milk or cheese or gluten free baked goods. The ones that amaze me are why gluten and dairy can appear in processed meats such as ham!
You will get very good at reading labels!
The test for lactose is separate, and as my doc said, if you already gave up the dairy it doesn't really make much practical difference to know about the lactose. Tex will appear soon to explain how lactose isn't really an intolerance in the same way as casein and gluten. Soy is also a separate test.
I'll let someone else answer about the drug treatment. I control my LC with diet alone. I respond very quickly to withdrawing the troublesome foods - like 2 days. For other people it can take a lot longer to achieve remission.
Good luck in achieving remission - you have come to the right place to find help.
Lyn
Hi Amy, you have come to the right place. You can learn more than most Drs. know about your condition and nobody has better advice than fellow sufferers.
I agree Tex is da man and he has so much knowledge and information about MC it is staggering. Along with many others on here as well.`
Welcome and I hope you are in remission soon. Oh and this is the nicest bunch of people on the net.
I don't know anything about drug treatment either, I am trying to control mine with my diet.
Deb
I agree Tex is da man and he has so much knowledge and information about MC it is staggering. Along with many others on here as well.`
Welcome and I hope you are in remission soon. Oh and this is the nicest bunch of people on the net.
I don't know anything about drug treatment either, I am trying to control mine with my diet.
Deb
Hypothyroid 06/01
LC 12/06
Dwell on the positive.
Happiness is a result of a decision to be happy.
LC 12/06
Dwell on the positive.
Happiness is a result of a decision to be happy.
Hi Amy,
Welcome. You have come to the right place to get answers.
If you are casein sensitive, you don't need to worry about a lactose test, since you should be off all dairy anyway. Goat milk products may be a bit better tolerated, but still not recommended on the casein free diet.
As for soy, you will know in time if you need to eliminate it. If your symptoms return, try getting off all soy. You could also do the soy, yeast, egg test through Enterolab - quicker than waiting for symptoms to arise.
Dairy free products we use are: Blue Diamond almond milk, Rice Dream or 365 (Whole Foods brand) rice milk, So Delicious coconut yogurt and ice cream, and Earth Balance margarine. If you can tolerate soy, the only completely casein free cheese is Follow Your Heart - I use that to make pizza for my son. Chocolate candy most often contains dairy - we like 365 Swiss Dark Chocolate. Whole Foods generally has a great selection of GF/CF foods, but your regular grocery store or health food store probably also has many options. It takes a little bit of time to figure all of this out. As was already mentioned, you will get good at reading labels.
You are right to be confused about probiotics and their helpfulness - there doesn't seem to be a clear consensus.
I will be curious to know how your acne responds to diet changes without medicine. Most of us have had unexpected improvements in symptoms that bothered us for years. When I was still eating soy my skin used to feel so oily. It turns out I am sensitive to soy lecithin and not soy protein. My Enterolab test was negative for soy, but I have a very clear reation to it.
I am impressed that your doctor ordered Enterolab tests. I encourage you to visit the Enterolab website - there is good info there and it can answer some of your questions.
Take care . . . and work on putting on some weight:)
Mary Beth
Welcome. You have come to the right place to get answers.
If you are casein sensitive, you don't need to worry about a lactose test, since you should be off all dairy anyway. Goat milk products may be a bit better tolerated, but still not recommended on the casein free diet.
As for soy, you will know in time if you need to eliminate it. If your symptoms return, try getting off all soy. You could also do the soy, yeast, egg test through Enterolab - quicker than waiting for symptoms to arise.
Dairy free products we use are: Blue Diamond almond milk, Rice Dream or 365 (Whole Foods brand) rice milk, So Delicious coconut yogurt and ice cream, and Earth Balance margarine. If you can tolerate soy, the only completely casein free cheese is Follow Your Heart - I use that to make pizza for my son. Chocolate candy most often contains dairy - we like 365 Swiss Dark Chocolate. Whole Foods generally has a great selection of GF/CF foods, but your regular grocery store or health food store probably also has many options. It takes a little bit of time to figure all of this out. As was already mentioned, you will get good at reading labels.
You are right to be confused about probiotics and their helpfulness - there doesn't seem to be a clear consensus.
I will be curious to know how your acne responds to diet changes without medicine. Most of us have had unexpected improvements in symptoms that bothered us for years. When I was still eating soy my skin used to feel so oily. It turns out I am sensitive to soy lecithin and not soy protein. My Enterolab test was negative for soy, but I have a very clear reation to it.
I am impressed that your doctor ordered Enterolab tests. I encourage you to visit the Enterolab website - there is good info there and it can answer some of your questions.
Take care . . . and work on putting on some weight:)
Mary Beth
thanks everyone for your welcome and quick responses!
I went off Gluten for 2 months before I got these tests done, and had no change at all, so I gave up, but I hear it can take even longer than that I guess, and maybe now that I will be going gluten free dairy free it will work. My other question about removing these foods from the diet is that if I mess up, like I take a medicine that has gluten or use soy sauce instead of tamari, does it set me all the way back to day one and it will take months again for me to see any improvement?
What I meant by starting the "entero" haha was starting entocort. I didn't want to start the steroids but the doctor felt it might help me put on weight which is necessary to help me heal at this point. I know some of you guys out there have used it, how quickly did you feel relief?
Thanks again everyone you guys are great!
Amy
"so looking forward to the possibility of being able to live a slightly more normal college life"
I went off Gluten for 2 months before I got these tests done, and had no change at all, so I gave up, but I hear it can take even longer than that I guess, and maybe now that I will be going gluten free dairy free it will work. My other question about removing these foods from the diet is that if I mess up, like I take a medicine that has gluten or use soy sauce instead of tamari, does it set me all the way back to day one and it will take months again for me to see any improvement?
What I meant by starting the "entero" haha was starting entocort. I didn't want to start the steroids but the doctor felt it might help me put on weight which is necessary to help me heal at this point. I know some of you guys out there have used it, how quickly did you feel relief?
Thanks again everyone you guys are great!
Amy
"so looking forward to the possibility of being able to live a slightly more normal college life"
Amy,
Yes, you must be vigilant with gluten removal or else you will be symptomatic. Also, if you are still highly symptomatic off of gluten, it probably indicates the need to be off of dairy and or soy/egg/corn etc. If you had a positive gluten Enterolab test you should absolutely be off of gluten - the test is very accurate. Continuing on gluten will cause intestinal damage and you won't go into remission.
I know this is alot to take in - it gets easier as time goes on.
Mary Beth
Yes, you must be vigilant with gluten removal or else you will be symptomatic. Also, if you are still highly symptomatic off of gluten, it probably indicates the need to be off of dairy and or soy/egg/corn etc. If you had a positive gluten Enterolab test you should absolutely be off of gluten - the test is very accurate. Continuing on gluten will cause intestinal damage and you won't go into remission.
I know this is alot to take in - it gets easier as time goes on.
Mary Beth
Welcome, Amy! What a lot you have been through. I understand where you're coming from as I spent most of my college years in and out of doctor's offices for a mix of seemingly unrelated issues that all turned out to be related to gluten! My GI issues started when I was 21, but I was not diagnosed until I was 26 (last summer). Good for you for getting diagnosed earlier. It does take a lot of persistence to get doctors to do a colonoscopy on anyone under 50.
It can take awhile for your intestines to heal, depending on how much damage was there in the first place. I have been GF since last August and CF and SF since February. I've seen some improvement, but I am not back to normal in any sense of the word. That's just my experience. Hopefully it won't take you too long, but be prepared in case it does. It doesn't mean the diet isn't helping. Many people use a combination of entocort and diet while healing, and I'm sure they'd be happy to talk to you about that.
Courtney
It can take awhile for your intestines to heal, depending on how much damage was there in the first place. I have been GF since last August and CF and SF since February. I've seen some improvement, but I am not back to normal in any sense of the word. That's just my experience. Hopefully it won't take you too long, but be prepared in case it does. It doesn't mean the diet isn't helping. Many people use a combination of entocort and diet while healing, and I'm sure they'd be happy to talk to you about that.
Courtney
Hypothyroid 05/05
LC/CC 07/08
Celiac 07/08
LC/CC 07/08
Celiac 07/08
Hi Amy,
Welcome to our internet family. You're already received a lot of good information - this a very knowledgeable group, and we learn from each other. Mary Beth, for example, is a licensed dietitian, with food intolerances herself, which makes her a very valuable resource. Most dietitians aren't very familiar with the requirements of people with food intolerances, so we're very fortunate that she's willing to share her insight here.
For more details on the casein/lactose issue, consider that true food intolerances trigger autoimmune reactions, that result in inflammation of the intestines. With celaic disease, for example, gluten causes inflammation of the small intestine, and damage to the villi, resulting in villus atrophy, if gluten is not removed from the diet. With MC, the inflammation is located in the colon, (though MC can also cause inflammation of a similar nature in the small intestine). Only proteins can trigger autoimmune reactions.
Lactose, (as has already been pointed out), is a sugar, and what the medical professionals incorrectly refer to as "lactose intolerance", is actually merely poor digestion of lactose. IOW, any form of enteritis, (intestinal irritation), can interfere with the ability of the brush border region of the small intestine, to produce the enzyme lactase, and without an adequate supply of lactase, lactose cannot be digested, (split). When that happens, the lactose proceeds on to the colon, where it is digested by means of fermentation. With fermentation, though, gas and diarrhea are usually produced, concurrently, so fermentation is definitely not a preferred way to digest lactose. The fermentation process does not normally result in inflammation of the colon, however, the way that an autoimmune reaction does. It's merely an unpleasant case of maldigestion.
Anyway, the bottom line is that while it is possible to "predigest" lactose, so that even so-called "lactose-intolerant" people can drink milk, (or eat yogurt), it is not possible to "predigest" casein, so all dairy products contain casein. Therefore, if you are casein-intolerant, then lactose is a moot issue, because as Mary Beth pointed out, you will have to avoid all dairy products, anyway.
Regarding accidentally ingesting an intolerance - that will usually only cause problems for a few days, unless you continue to eat the item for a longer period. True intolerances can cause physical damage to the intestines, so the longer one eats a problem food, the more damage accrues, and the longer it takes to heal. For example, I did an "oat challenge" a couple of years ago, and it took me about 6 weeks, before the D started. Unfortunately, it took another 6 weeks for it to stop, after I stopped eating the oats. (I may be a celiac, though, so it's possible that could have been a celiac reaction, rather than an MC reaction, FWIW). Once you are in remission, and your gut has had sufficient time to heal, if you accidentally eat an intolerance, you will probably only react for about a day, more or less, depending on circumstances. After the "oat challenge", I waited a while, and then tried oats again, and sure enough, I reacted with uncontrollable D, within a few hours. However, the next day, I was fine.
Based on the accumulated experience of members of this board, Entocort often begins to bring signs of improvement within a few days to a week, but for some individuals, it can take a month or more. A certain percentage of members are intolerant of Entocort, so watch for neurological signs of that, just in case you are one who can't handle budesonide, (the active ingredient in Entocort EC). Everyone's condition is different, and everyone seems to respond somewhat differently to meds. Without the Entocort, though, as Courtney pointed out, it can take a while for the diet to work. It typically seems to take six months or more, and in some cases it can take a year or longer. Entocort helps to mask the symptoms, while the gut is healing, which makes life a lot easier, obviously.
Also, as Mary Beth mentioned, most experts on the treatment of MC agree that probiotics should be beneficial. Unfortunately, the reality is that no one can agree on one that seems to work consistently, for a significant number of patients. Members of this board have tried most of them, but to the best of my knowledge, no one has fond one that seems to be consistently helpful, for the long term. Having said that, quite a few people have found that they have benefited from a probiotic, in the short term, especially if they have to take a regimen of antibiotics.
I, too, would be very interested in learning how your acne issues respond to the dietary changes. Please keep us updated, and please feel free to ask anything that comes to mind.
Again, welcome aboard.
Tex (Wayne)
Welcome to our internet family. You're already received a lot of good information - this a very knowledgeable group, and we learn from each other. Mary Beth, for example, is a licensed dietitian, with food intolerances herself, which makes her a very valuable resource. Most dietitians aren't very familiar with the requirements of people with food intolerances, so we're very fortunate that she's willing to share her insight here.
For more details on the casein/lactose issue, consider that true food intolerances trigger autoimmune reactions, that result in inflammation of the intestines. With celaic disease, for example, gluten causes inflammation of the small intestine, and damage to the villi, resulting in villus atrophy, if gluten is not removed from the diet. With MC, the inflammation is located in the colon, (though MC can also cause inflammation of a similar nature in the small intestine). Only proteins can trigger autoimmune reactions.
Lactose, (as has already been pointed out), is a sugar, and what the medical professionals incorrectly refer to as "lactose intolerance", is actually merely poor digestion of lactose. IOW, any form of enteritis, (intestinal irritation), can interfere with the ability of the brush border region of the small intestine, to produce the enzyme lactase, and without an adequate supply of lactase, lactose cannot be digested, (split). When that happens, the lactose proceeds on to the colon, where it is digested by means of fermentation. With fermentation, though, gas and diarrhea are usually produced, concurrently, so fermentation is definitely not a preferred way to digest lactose. The fermentation process does not normally result in inflammation of the colon, however, the way that an autoimmune reaction does. It's merely an unpleasant case of maldigestion.
Anyway, the bottom line is that while it is possible to "predigest" lactose, so that even so-called "lactose-intolerant" people can drink milk, (or eat yogurt), it is not possible to "predigest" casein, so all dairy products contain casein. Therefore, if you are casein-intolerant, then lactose is a moot issue, because as Mary Beth pointed out, you will have to avoid all dairy products, anyway.
Regarding accidentally ingesting an intolerance - that will usually only cause problems for a few days, unless you continue to eat the item for a longer period. True intolerances can cause physical damage to the intestines, so the longer one eats a problem food, the more damage accrues, and the longer it takes to heal. For example, I did an "oat challenge" a couple of years ago, and it took me about 6 weeks, before the D started. Unfortunately, it took another 6 weeks for it to stop, after I stopped eating the oats. (I may be a celiac, though, so it's possible that could have been a celiac reaction, rather than an MC reaction, FWIW). Once you are in remission, and your gut has had sufficient time to heal, if you accidentally eat an intolerance, you will probably only react for about a day, more or less, depending on circumstances. After the "oat challenge", I waited a while, and then tried oats again, and sure enough, I reacted with uncontrollable D, within a few hours. However, the next day, I was fine.
Based on the accumulated experience of members of this board, Entocort often begins to bring signs of improvement within a few days to a week, but for some individuals, it can take a month or more. A certain percentage of members are intolerant of Entocort, so watch for neurological signs of that, just in case you are one who can't handle budesonide, (the active ingredient in Entocort EC). Everyone's condition is different, and everyone seems to respond somewhat differently to meds. Without the Entocort, though, as Courtney pointed out, it can take a while for the diet to work. It typically seems to take six months or more, and in some cases it can take a year or longer. Entocort helps to mask the symptoms, while the gut is healing, which makes life a lot easier, obviously.
Also, as Mary Beth mentioned, most experts on the treatment of MC agree that probiotics should be beneficial. Unfortunately, the reality is that no one can agree on one that seems to work consistently, for a significant number of patients. Members of this board have tried most of them, but to the best of my knowledge, no one has fond one that seems to be consistently helpful, for the long term. Having said that, quite a few people have found that they have benefited from a probiotic, in the short term, especially if they have to take a regimen of antibiotics.
I, too, would be very interested in learning how your acne issues respond to the dietary changes. Please keep us updated, and please feel free to ask anything that comes to mind.
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.