Hi, I am a 42 year old woman and I have collagenous colitis. I got diagnosed the end of July. I am so glad I found this website, and I would like to tell you about my history and see if anyone can help me. I have always been a really healthy person, no allergies or problems, etc. I have been so frustrated and sick and I just don't know what to do. I cannot find a doctor that I feel knows what they are talking about. This will be long but I don't know what factors may or may not contribute, and I would appreciate any advice from anyone. Please note that I am a 42 year old woman with two kids, one five and one age 7.
I am having a hard time figuring out when it started. It has come on so slowly that it is hard to pinpoint. Last summer 2010 I hurt my knee and my orthopedic told me I could take alleve every day for up to a year. I took 4 pills a day for six months until january. One day I noticed I had the feeling of something stuck in my throat. It felt like a piece of popcorn or something. I went to my ENT and he looked down my throat and told me he didn't see anything. I did a barium swallowing test and it didn't show anything. I am hypothyroid (for 10 years, managed easily, just take synthroid and no further problems), so I thought maybe it was my thyroid. I went to my endocronolotist, and she did an ultrasound on my neck, listened to me, found out that I had been taking alleve, and told me that I probably had Gerd. She put me on omaprazol for 4 weeks, and it didn't go away. I also went off all soda, caffeine and artifical sugar, as that can contribute to Gerd.
At this point (february) I went to my PCP, who put me on a stronger medication for the gerd - it was called dexilant. i tood it for 8 weeks and the lump went away. She took me off of it, and it came back, so she put me back on it. Sometime around this time (not sure, did not take notes) I started having frequent diarreah. I was trying to be super healthy and was eating lots of fiber, so I attributed the diarreah and gas to the fiber and backed off.
In May I went back to my PCP and told her the lump feeling was still there but it was getting better. We made a plan to go off the dexilant. She also sent me to a GI doc to get an EGS upper endscopy. In June I did an upper GI to see if they could tell why I had the lump feeling in my throat. Everything looked good, and she did a biopsy of my small intestine to test for celiac, which came back negative.
Later in June I went on vacation with my husband and I spent the first few nights in the bathroom all night. I had also been noticing that my stomach felt hard and swollen on and off for a while, and I started worrying that I might have some type of cancer or something. When I got back the diarreah got worse to the point that I was being waken up in the middle of the night, couldn't leave the house in the morning for an hour or two. I went back to my PCP, she told me that it sounded like IBS, told me to relax and to consider an antidepressant. She also sent me for a colonoscopy and put my on hycosamine PRN, which did help a little.
The whole time this had been happening all of my friends and family continuously told me that I was so stressed out, I was making myself sick, etc. I have always been a super happy, capable person. I am a stay at home mom, I work part time, we have a successful small business, and we are extremely blessed. This in itself is a lot of stress, but I have always done just fine with managing it all. My husband kept asking me why I was so stressed out, that I needed to appreciate life, etc. He was very supportive but kept telling me that I was always sick and I needed to take care of myself.
At this point I could barely eat. All food made me nauseaus, and anything I ate gave me diarreah. I lost 12 pounds in 8 days. At this point I was really messed up, believing I was making myself sick, and I went to a psychiatrist. He told me he wanted to take an antipsychotic drug and lexapro. I went home, looked at all the side effects, and just couldn't do it. I knew it wasn't right for me.
The next day I got a call from my GI doc and she told me the biopsy of the colonoscopy showed collagenous colitis. She was very non-informative, and very negative. She told me that it was really rare for someone my age to have it. She said the first round of treatment was 3 pepto pills a day. At this point I had lost almost 20 pounds. She said she didn't know what caused it and didn't know if it would ever get better.
I started the pepto and started feeling a little better. I was able to stop the weight loss. I then called my pcp and asked for an allergy test. Everything came back negative, including dairy and eggs and wheat. She told me there is no way i could be gluten sensitive.I did a little research and decided to go gluten and dairy freeanyway. I did this for a week and I got sicker, which I attribute to the lack of not really knowing how to do this severe diet change properly. I lived on bananas and rice for a weekm and then gave up the diet changes. I then decided to go to another doctor. She put me on 8 pepto a day for 4 weeks, and told me to come back in six weeks. This was a month ago.
During this time I met a lady at my doctor's office and she told me she had collagenous colitis. She said every night from 6 to 9 she was on the toilet like clockwork. She said that she eats whatever she wants, and diet has no bearing on it. She said she has had it since 1995, and I just needed to learn to live with it. She said she has no stomach pains or anything, just diarreah. Again, this is really confusing. I really want to believe that there is something I can do, that it will get better, and I don't have to just live with this.
This is where I really need advice. I have seen some success with pepto. The tightness in my stomach never goes away, but sometimes it is not so bad. Plus, the diarrhea is greatly diminished. Almost all days I have no diarreah and just 3-4 soft bm's. Very manageable. However, some days I get really sick. I am trying to figure out if it can be attributed to what I eat, but I am pretty sure that it CAN be attributed to the amount I eat. If I eat too much food I get sick. It is driving me nuts. I am living on banana bread, chicken, yougart, eggs, and odwalla fruit and protein smoothies. I am scared to eat a whole vegetable or fruit, even cooked. Last weekend I felt so good i had a piece of pizza, and I got really sick.
SO HERE IS MY IMMEDIATE QUESTION! I have to go off the pepto in 2 weeks and i am really scared. I keep thinking that it must not be cured if I can still have these bad days while on the pepto. Does anyone have any experience with this? Can it just take longer to heal with pepto, or is the pepto just temporarily helping the issue. My doctor told me that about 35% of her patients get better with pepto and have no further complications. She also told me that about 60% of the patients get better with endocort and they go off it and have no further problems. I just don't get it. This is not what I seen on the internet.
I am thinking about getting tested by entero labs and trying to go gluten free again. However, I don't want to go gluten free if I don't have to. Does anyone know if entero can test you while you are on 1/2 of a cup of pepto a day? Also, does anyone know what happens if you take pepto longer than 8 weeks? I would rather do this than try a steriod.
I am sorry for the length. Again, I would really appreciate anyone with any insight to help me out. Thank you so very much.
Peggy (from Kansas!)
New member with collagenous colitis
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Peggy! Welcome aboard! You have come to the right place to get answers to your questions. There are some amazing people with a tremendous amount of wisdom on this board and I know you'll get the help you seek.
Are you still taking aleve or any kind of NSAID? My MC was diagnosed in early March after a 25 lb weight loss over 5-6 weeks and the watery explosive D several times daily. On this site and others I read of a connection between NSAIDs and MC. I had been taking a prescription NSAID since Sept 2010 for TMJ and began getting sick in early January. I stopped the NSAIDs and within a couple of days the D had stopped. I also went gluten free at the same time. I know it can be overwhelming to think about going GF, especially with small children, but it gets easier the longer you are GF and now after 6 months it really isn't that much of an issue. I have figured out what I can eat when I go out and I have learned how to navigate family dinners and pot lucks. There are tasty GF cereals and crackers (Nut Thins are very good) and there's even GF Bisquick and cake mixes now. What I learned here is GF has to be all or nothing; cutting back won't help. And I've learned that simple foods are the best; if it's from a recipe chances are good it could have gluten and should be avoided.
Blessing to you as you seek to find answers and relief from your CC symptoms!
Katie
Are you still taking aleve or any kind of NSAID? My MC was diagnosed in early March after a 25 lb weight loss over 5-6 weeks and the watery explosive D several times daily. On this site and others I read of a connection between NSAIDs and MC. I had been taking a prescription NSAID since Sept 2010 for TMJ and began getting sick in early January. I stopped the NSAIDs and within a couple of days the D had stopped. I also went gluten free at the same time. I know it can be overwhelming to think about going GF, especially with small children, but it gets easier the longer you are GF and now after 6 months it really isn't that much of an issue. I have figured out what I can eat when I go out and I have learned how to navigate family dinners and pot lucks. There are tasty GF cereals and crackers (Nut Thins are very good) and there's even GF Bisquick and cake mixes now. What I learned here is GF has to be all or nothing; cutting back won't help. And I've learned that simple foods are the best; if it's from a recipe chances are good it could have gluten and should be avoided.
Blessing to you as you seek to find answers and relief from your CC symptoms!
Katie
Welcome, Peggy!! 
I'm so sorry that you've had to endure what the medical profession has dished out to you this year. It's bad enough to deal with MC, but to also be told that you are causing it by being stressed, it's in your head and you need to take some pills, it's rare for someone your age to have it, blah, blah, blah is so insulting that I'm having a hard time responding rationally.
You are not going crazy - this isn't in your head! Stress can exacerbate MC, but it's likely that stress didn't cause yours. When your doctor told you that 95% of her patients get better after discontinuing Pepto Bismol or Entocort, she clearly hasn't heard back from the majority of her MC patients. It is possible to achieve long-term remission, but most of us have had to change our diets for that to happen - something the medical profession doesn't address at all.
There will be others who will be responding to your post and will have some advice for you. I wanted to immediately reassure you that you can get better and you will get your life back. Please read as much as you can on this board. We have years of experience in dealing with MC. Most doctors don't have a clue about the best way to manage it. It's sad, but true. You will find the answers you need here.
Gloria
I'm so sorry that you've had to endure what the medical profession has dished out to you this year. It's bad enough to deal with MC, but to also be told that you are causing it by being stressed, it's in your head and you need to take some pills, it's rare for someone your age to have it, blah, blah, blah is so insulting that I'm having a hard time responding rationally.
You are not going crazy - this isn't in your head! Stress can exacerbate MC, but it's likely that stress didn't cause yours. When your doctor told you that 95% of her patients get better after discontinuing Pepto Bismol or Entocort, she clearly hasn't heard back from the majority of her MC patients. It is possible to achieve long-term remission, but most of us have had to change our diets for that to happen - something the medical profession doesn't address at all.
There will be others who will be responding to your post and will have some advice for you. I wanted to immediately reassure you that you can get better and you will get your life back. Please read as much as you can on this board. We have years of experience in dealing with MC. Most doctors don't have a clue about the best way to manage it. It's sad, but true. You will find the answers you need here.
Gloria
You never know what you can do until you have to do it.
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karenswans
- Adélie Penguin
- Posts: 104
- Joined: Sat Sep 03, 2011 7:12 am
Hi Peggy! I'm new here, too.
Your symptoms sound very much like mine. I've definitely noticed the connection between eating too much and having symptoms. I think almost every Thanksgiving in the past 20 years, I've gotten sick.
I had a very bad flare from May-late July. I'm somewhat better now, though I still have to jump out of bed before 5am to run to the bathroom. I would like to get my symptoms under control enough that I could sleep in! That would be glorious.
Your symptoms sound very much like mine. I've definitely noticed the connection between eating too much and having symptoms. I think almost every Thanksgiving in the past 20 years, I've gotten sick.
I had a very bad flare from May-late July. I'm somewhat better now, though I still have to jump out of bed before 5am to run to the bathroom. I would like to get my symptoms under control enough that I could sleep in! That would be glorious.
Hi Peggy,
Wow! The doctors in your part of Kansas are really lost when it comes to treating MC. (Of course, that's true in many parts of the world, unfortunately). I feel sorry for the lady you met who "informed you" that diet has nothing to do with it, and "you should just learn to live with it". That's really sad. I suggest that you do a lot of reading on this site, and you will quickly see that such an attitude about MC is nothing but hogwash.
IMO, the 6 months of Alieve set you up for MC, and the PPIs finished the job. NSAIDs and PPIs have caused many, many cases of MC, over the years. IMO, PPIs should be outlawed, because even though they seem to be working to help the symptoms, in reality, they are frequently prescribed when they shouldn't be, and they usually make the problem worse, by weakening the lower esophageal sphincter, and by causing undesirable cellular changes in the lining of stomach. The changes that PPIs make to these tissues, makes it very difficult to withdraw from using them, because they cause the body to develop a dependency on them - that's why they should be outlawed, IMO.
The Pepto-Bismol treatment was developed by Dr. Kenneth Fine, over 10 years ago, to be used in conjunction with the GF diet, for treating MC. Since most GI docs don't know that MC is triggered by certain food sensitivities, they recommend the Pepto treatment, but in their ignorance, they fail to advise the patient to follow a GF diet. So yes, a few days after you stop taking the Pepto, your symptoms will almost certainly relapse.
Since you don't seem to be inclined to exclude gluten from your diet unless you absolutely have to, I would suggest that you order some tests from Enterolab, ASAP, because the sooner you can convince yourself that gluten is your main enemy right now, the sooner you will begin to see some progress with your health. As long as you continue to eat gluten, it will seem as though everything makes you sick, (everything but gluten, that is).
I totally agree with what Katie and Gloria said in their responses above. You've been a victim of the medical merry-go-round, and it's a miracle that you were able to get off when you did, (after the visit to a psychiatrist), because if you had added those drugs to what you were already taking, they would have had you "hooked", and your odds of ever escaping from their lifetime plan of "legal" drug addiction would have been pretty slim. I find it absolutely amazing how many drugs some doctors can prescribe to treat a disease, when most of them don't even relate to the disease, let alone actually treat it.
Unfortunately, it's clear that your doctor doesn't know how to treat MC. No medical treatment is going to "cure" MC. A few days after you stop taking the drug, (regardless of which one you choose), you will relapse, unless you are eliminating all foods from your diet to which you are sensitive. And just eliminating those foods for a few weeks will not get the job done. It takes a long time for the gut to heal, (years), so you will continue to relapse, anytime you discontinue a drug, until you have been on the diet for roughly a year, more or less. Everyone is different, but it takes a long time to heal. Drugs help to suppress the symptoms, but only the diet can actually allow the gut to heal, because as long as you eat foods that cause an autoimmune reaction, you are going to continue to produce "new" inflammation.
Again, welcome aboard, and please feel free to ask anything. MC is a lifelong disease. It cannot be cured, but the symptoms can certainly be controlled so that you can begin to lead an essentially normal life, again. Controlling the symptoms, takes dedication and perseverance. We'll help you in any way we can, because believe it or not, many of us have also been through most of what you've gone through with the medical merry-go-round. We finally got tired of it, and came here to compare notes, and to learn how to actually control this disease.
Tex
Wow! The doctors in your part of Kansas are really lost when it comes to treating MC. (Of course, that's true in many parts of the world, unfortunately). I feel sorry for the lady you met who "informed you" that diet has nothing to do with it, and "you should just learn to live with it". That's really sad. I suggest that you do a lot of reading on this site, and you will quickly see that such an attitude about MC is nothing but hogwash.
IMO, the 6 months of Alieve set you up for MC, and the PPIs finished the job. NSAIDs and PPIs have caused many, many cases of MC, over the years. IMO, PPIs should be outlawed, because even though they seem to be working to help the symptoms, in reality, they are frequently prescribed when they shouldn't be, and they usually make the problem worse, by weakening the lower esophageal sphincter, and by causing undesirable cellular changes in the lining of stomach. The changes that PPIs make to these tissues, makes it very difficult to withdraw from using them, because they cause the body to develop a dependency on them - that's why they should be outlawed, IMO.
The Pepto-Bismol treatment was developed by Dr. Kenneth Fine, over 10 years ago, to be used in conjunction with the GF diet, for treating MC. Since most GI docs don't know that MC is triggered by certain food sensitivities, they recommend the Pepto treatment, but in their ignorance, they fail to advise the patient to follow a GF diet. So yes, a few days after you stop taking the Pepto, your symptoms will almost certainly relapse.
Since you don't seem to be inclined to exclude gluten from your diet unless you absolutely have to, I would suggest that you order some tests from Enterolab, ASAP, because the sooner you can convince yourself that gluten is your main enemy right now, the sooner you will begin to see some progress with your health. As long as you continue to eat gluten, it will seem as though everything makes you sick, (everything but gluten, that is).
I totally agree with what Katie and Gloria said in their responses above. You've been a victim of the medical merry-go-round, and it's a miracle that you were able to get off when you did, (after the visit to a psychiatrist), because if you had added those drugs to what you were already taking, they would have had you "hooked", and your odds of ever escaping from their lifetime plan of "legal" drug addiction would have been pretty slim. I find it absolutely amazing how many drugs some doctors can prescribe to treat a disease, when most of them don't even relate to the disease, let alone actually treat it.
Peggy wrote:My doctor told me that about 35% of her patients get better with pepto and have no further complications. She also told me that about 60% of the patients get better with endocort and they go off it and have no further problems. I just don't get it. This is not what I seen on the internet.
Unfortunately, it's clear that your doctor doesn't know how to treat MC. No medical treatment is going to "cure" MC. A few days after you stop taking the drug, (regardless of which one you choose), you will relapse, unless you are eliminating all foods from your diet to which you are sensitive. And just eliminating those foods for a few weeks will not get the job done. It takes a long time for the gut to heal, (years), so you will continue to relapse, anytime you discontinue a drug, until you have been on the diet for roughly a year, more or less. Everyone is different, but it takes a long time to heal. Drugs help to suppress the symptoms, but only the diet can actually allow the gut to heal, because as long as you eat foods that cause an autoimmune reaction, you are going to continue to produce "new" inflammation.
Again, welcome aboard, and please feel free to ask anything. MC is a lifelong disease. It cannot be cured, but the symptoms can certainly be controlled so that you can begin to lead an essentially normal life, again. Controlling the symptoms, takes dedication and perseverance. We'll help you in any way we can, because believe it or not, many of us have also been through most of what you've gone through with the medical merry-go-round. We finally got tired of it, and came here to compare notes, and to learn how to actually control this disease.
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.
Peggy,
Welcome - you've been through quite a merry-go-round... Did you know that hypothyroid is associated with gluten sensitivity and celiac? It may be that this whole set of health problems has been brewing for longer than your current symptoms, and only pushed over the edge by the drugs Tex mentioned - and btw, Lexapro is in a class of medications that *also* can cause MC, so be thankful you were smart enough to say no to that. You could well have celiac disease and test negative, btw - that's why many celiac patients suffer for years before diagnosis. But you can get plenty sick from gluten without having celiac disease, as many of us have learned. I know you feel pretty healthy - but your hypothyroidism was probably your first autoimmune "warning signal" - and I'm sorry that your warnings have now turned into MC.
You're not crazy, and psychiatric drugs will not cure your gut. In fact, it's the other way around - getting your MC into remission may give you a mental boost that will amaze you - you will feel SO much better, in every way, when you feel better.
I agree with Tex that Enterolab testing is likely to be helpful. Other than gluten, your most suspect food on that list is dairy - and really, all processed foods, whether smoothies or energy bars, are likely to have something that causes us to react. I do realize that convenience foods are convenient, and you will find ones that are safe for you, once you are sure what your food intolerances are. It is very likely that eliminating gluten didn't help you feel better because either you didn't get all of it out of your diet (you would not believe how small an amount can make you sick - the body will keep responding to it as though it is an evil pathogen, and you know how small germs are), or because you also react to something else... the most common one being dairy. Also, soy is used in almost everything processed - and about half of us react to soy.
I hope this helps. BTW, I'm pretty annoyed at your doctors, too
I think some docs don't like patients having MC because they don't understand it, and somehow it seems annoying that you had the nerve to come up with something they're no good at. I got sick in March, but had been diagnosed with MC in '97 - so I knew what to Google, and found this awesome forum. I am about to have my first doctor visit since then, to catch my PCP up with what I now know from Enterolab testing and my own observations. I'm not saying you should fire all your doctors (after all, you don't even know me) - I'm saying you can do a lot to get your health into your own hands, and we're here to help.
I did use the Pepto, btw - I started with 8/day, but cut down pretty quickly to 5/day, then 3... Because I had dropped gluten and dairy, I got pretty fast relief, though of course it takes additional time for the gut to fully heal. Also - if you eat something you react to, it's usually the next day that you'll have symptoms. So if you wake up with D, it could have been yesterday's breakfast, lunch, or dinner. Again - consuming *any* of a food that you have an antigenic (not allergic) reaction to will make you sick, even a very small amount. That is as true for us as it is for those with celiac disease (and not just for gluten - any food that you react to).
Hope you're feeling encouraged already,
Sara
Welcome - you've been through quite a merry-go-round... Did you know that hypothyroid is associated with gluten sensitivity and celiac? It may be that this whole set of health problems has been brewing for longer than your current symptoms, and only pushed over the edge by the drugs Tex mentioned - and btw, Lexapro is in a class of medications that *also* can cause MC, so be thankful you were smart enough to say no to that. You could well have celiac disease and test negative, btw - that's why many celiac patients suffer for years before diagnosis. But you can get plenty sick from gluten without having celiac disease, as many of us have learned. I know you feel pretty healthy - but your hypothyroidism was probably your first autoimmune "warning signal" - and I'm sorry that your warnings have now turned into MC.
You're not crazy, and psychiatric drugs will not cure your gut. In fact, it's the other way around - getting your MC into remission may give you a mental boost that will amaze you - you will feel SO much better, in every way, when you feel better.
I agree with Tex that Enterolab testing is likely to be helpful. Other than gluten, your most suspect food on that list is dairy - and really, all processed foods, whether smoothies or energy bars, are likely to have something that causes us to react. I do realize that convenience foods are convenient, and you will find ones that are safe for you, once you are sure what your food intolerances are. It is very likely that eliminating gluten didn't help you feel better because either you didn't get all of it out of your diet (you would not believe how small an amount can make you sick - the body will keep responding to it as though it is an evil pathogen, and you know how small germs are), or because you also react to something else... the most common one being dairy. Also, soy is used in almost everything processed - and about half of us react to soy.
I hope this helps. BTW, I'm pretty annoyed at your doctors, too
I think some docs don't like patients having MC because they don't understand it, and somehow it seems annoying that you had the nerve to come up with something they're no good at. I got sick in March, but had been diagnosed with MC in '97 - so I knew what to Google, and found this awesome forum. I am about to have my first doctor visit since then, to catch my PCP up with what I now know from Enterolab testing and my own observations. I'm not saying you should fire all your doctors (after all, you don't even know me) - I'm saying you can do a lot to get your health into your own hands, and we're here to help.I did use the Pepto, btw - I started with 8/day, but cut down pretty quickly to 5/day, then 3... Because I had dropped gluten and dairy, I got pretty fast relief, though of course it takes additional time for the gut to fully heal. Also - if you eat something you react to, it's usually the next day that you'll have symptoms. So if you wake up with D, it could have been yesterday's breakfast, lunch, or dinner. Again - consuming *any* of a food that you have an antigenic (not allergic) reaction to will make you sick, even a very small amount. That is as true for us as it is for those with celiac disease (and not just for gluten - any food that you react to).
Hope you're feeling encouraged already,
Sara
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blackcatjordie
- Posts: 12
- Joined: Sat Sep 03, 2011 9:56 am
-
blackcatjordie
- Posts: 12
- Joined: Sat Sep 03, 2011 9:56 am
Thank you everyone! I have been reading the posts all afternoon and it has really given me some hope and an action plan. I appreciate all of the insight. After reading the posts, I have some more questions:
1) I am going to try gluten free immediately! Several people have recommended dairy free also. I got a blood allergy test and it said I was not allergic to dairy. Does this matter?
2) Does it make sense to just cut out gluten and see if that helps, rather than cut out both gluten and dairy at the same time (and then soy if that doesn't help). I would much prefer and rather do this. I can't imagine living without both.
3) The info in the main newbie information says that fiber is a no-no. Does this just mean fiber powder? If it means fruit and vegetables, then what in the world do you eat? If you cut out gluten, dairy and fiber it seems like all that is left is meat.
4) I am going to order the all inclusive test from enterolab. Will this tell me for sure if I am gluten or dairy sensitive, and give me more of an idea as to what to eat. Is it concrete info - i.e. if it says I don't have a dairy allergy then it is okay to eat dairy...
5) I have seen lactose free milk at the store. It is not soy but is just milk with lactaid in it (from what I can tell). If you are dairy free can you drink it?
6) I have read that vegetables and fruit are easier to eat if you cook them first. What if you just blend them into a smoothie? Does this make it easier for you to process or do you have to cook it first?
7) Are eggs also dairy? I have found them to be a good source of protein for me. Can you be allergic to milk and not eggs?\
Thank you everyone! I love having a plan instead of just sitting around worrying about what will happen when I stop the pepto.
1) I am going to try gluten free immediately! Several people have recommended dairy free also. I got a blood allergy test and it said I was not allergic to dairy. Does this matter?
2) Does it make sense to just cut out gluten and see if that helps, rather than cut out both gluten and dairy at the same time (and then soy if that doesn't help). I would much prefer and rather do this. I can't imagine living without both.
3) The info in the main newbie information says that fiber is a no-no. Does this just mean fiber powder? If it means fruit and vegetables, then what in the world do you eat? If you cut out gluten, dairy and fiber it seems like all that is left is meat.
4) I am going to order the all inclusive test from enterolab. Will this tell me for sure if I am gluten or dairy sensitive, and give me more of an idea as to what to eat. Is it concrete info - i.e. if it says I don't have a dairy allergy then it is okay to eat dairy...
5) I have seen lactose free milk at the store. It is not soy but is just milk with lactaid in it (from what I can tell). If you are dairy free can you drink it?
6) I have read that vegetables and fruit are easier to eat if you cook them first. What if you just blend them into a smoothie? Does this make it easier for you to process or do you have to cook it first?
7) Are eggs also dairy? I have found them to be a good source of protein for me. Can you be allergic to milk and not eggs?\
Thank you everyone! I love having a plan instead of just sitting around worrying about what will happen when I stop the pepto.
Peggy,
I'll respond to your questions individually.
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
There are meal suggestions here, (and various other places on this board):
http://www.perskyfarms.com/phpBB2/viewforum.php?f=53
http://www.silkpurealmond.com/
Some people like Hemp Milk, and there are other options, but many of them contain soy.
A sensitivity to casein would have nothing to do with a sensitivity to eggs. A separate test applies. Most of us are sensitive to casein, but a much smaller percentage of us are sensitive to eggs.
Tex
I'll respond to your questions individually.
No, we're not allergic to dairy products, in the classic sense - our digestive system is sensitive to it. Therefore, the antibodies are in our intestines, not in our blood. Only a stool test for casein, (the primary protein in dairy products), will detect a dairy-sensitivity. Only Enterolab offers a stool test that accurately detects dietary casein-sensitivity.Peggy wrote:1) I am going to try gluten free immediately! Several people have recommended dairy free also. I got a blood allergy test and it said I was not allergic to dairy. Does this matter?
That will probably work for a while, but after a month or so, after your residual gluten antibodies decline, your immune system will begin to react to casein, (if you're sensitive to it), and your symptoms will relapse.Peggy wrote:2) Does it make sense to just cut out gluten and see if that helps, rather than cut out both gluten and dairy at the same time (and then soy if that doesn't help). I would much prefer and rather do this. I can't imagine living without both.
It applies to all sources of fiber. Fiber doesn't have to be totally eliminated, but significant amounts will irritate the colon, (since it's already hypersensitive, due to the inflammation), so fiber can prolong a flare. All new members worry about not having any choices left on their menu, but trust me, there are plenty of choices, and most of them are more nutritious than most of the foods that most people eat these days. Dee's Kitchen, for example, contains hundreds of gourmet quality recipes, that are free of gluten, dairy, and soy, and she shows how to make substitutions for eggs, and other foods, if they are a problem:Peggy wrote:3) The info in the main newbie information says that fiber is a no-no. Does this just mean fiber powder? If it means fruit and vegetables, then what in the world do you eat? If you cut out gluten, dairy and fiber it seems like all that is left is meat.
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
There are meal suggestions here, (and various other places on this board):
http://www.perskyfarms.com/phpBB2/viewforum.php?f=53
Yes, and no. Frankly, my first choice would be Panel B, and my second choice would be Panel A, because they seem to be more cost efficient, in terms of the useful information that they provide, and those results are quite specific, and typically very accurate. Panel C, on the other hand, doesn't provide information that is nearly as specific. Panel C is a new set of tests, and we're still figuring out how to efficiently use it.Peggy wrote:4) I am going to order the all inclusive test from enterolab. Will this tell me for sure if I am gluten or dairy sensitive, and give me more of an idea as to what to eat. Is it concrete info - i.e. if it says I don't have a dairy allergy then it is okay to eat dairy...
No, lactose is a sugar, and while we're sensitive to it, we're also even more sensitive to the primary protein in milk, casein, and all dairy products contain casein. An example of a good, safe substitution for cow's milk, is Silk brand Almond Milk.Peggy wrote:5) I have seen lactose free milk at the store. It is not soy but is just milk with lactaid in it (from what I can tell). If you are dairy free can you drink it?
http://www.silkpurealmond.com/
Some people like Hemp Milk, and there are other options, but many of them contain soy.
That helps, but they really need to be not just cooked, but overcooked, to make them more easily digestible. Also, they should always be peeled, because most of the fiber is in the peel. Most fruits are sources of fructose, and sorbitol, and citric acid which are problems for most of us until our gut heals. That said, a reasonable amount, in the form of a smoothie is certainly acceptable for many of us, so long as we don't overdo it. Berries, of course, are not practical to peel, so be careful that you don't overdo them. Obviously, some people are more sensitive to fiber than others.Peggy wrote:6) I have read that vegetables and fruit are easier to eat if you cook them first. What if you just blend them into a smoothie? Does this make it easier for you to process or do you have to cook it first?
No, eggs are definitely not a dairy product, despite what some food "experts" seem to think. I have no idea why so many people consider them to be dairy products. I've lived on a farm my entire life, and I have yet to see a cow lay an egg, and I've never seen anyone who was able to figure out a way to get milk out of a chicken.Peggy wrote:7) Are eggs also dairy? I have found them to be a good source of protein for me. Can you be allergic to milk and not eggs?
A sensitivity to casein would have nothing to do with a sensitivity to eggs. A separate test applies. Most of us are sensitive to casein, but a much smaller percentage of us are sensitive to eggs.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.
Peggy,
Welcome! I can't add much more to what others have already said except to support making diet changes. None of us ever wanted to give up gluten or dairy . . . in fact, I think we all felt somewhat addicted to those things and couldn't imagine not having them in out diet any more. Some of us, like me, have multiple intolerances but we found a way to make it work. There are many great resources for going gluten and dairy free and there is a section on this forum called Dee's Kitchen that has numerous recipes.
I had to laugh when I read about your doctor's supposed cure rate for MC. I suspect she thinks people are "cured" when they stop goiong to her but in reality she was probably fired because people stayed sick. I wish I had a nickel for everytime somebody with MC fired their GI.
Did you know that gluten causes knee pain? I had horrible knee pain and was also put on aleve. It triggered GERD symptoms (and in my case other symptoms as well) and I am very familiar with the lump in throat feeling. My knee pain subsided off of gluten. When I get accidentally glutened now one of the first places I feel it is in my knees and joints. I am also free of any GERD symptoms as long as I avoid all food triggers. I did another test called MRT that helped me to identify my remaining triggers.
Again, welcome to our internet family. We are here to answer any questions so don't be afraid to ask anything . . . chances are we have already talked about it.
Mary Beth
Welcome! I can't add much more to what others have already said except to support making diet changes. None of us ever wanted to give up gluten or dairy . . . in fact, I think we all felt somewhat addicted to those things and couldn't imagine not having them in out diet any more. Some of us, like me, have multiple intolerances but we found a way to make it work. There are many great resources for going gluten and dairy free and there is a section on this forum called Dee's Kitchen that has numerous recipes.
I had to laugh when I read about your doctor's supposed cure rate for MC. I suspect she thinks people are "cured" when they stop goiong to her but in reality she was probably fired because people stayed sick. I wish I had a nickel for everytime somebody with MC fired their GI.
Did you know that gluten causes knee pain? I had horrible knee pain and was also put on aleve. It triggered GERD symptoms (and in my case other symptoms as well) and I am very familiar with the lump in throat feeling. My knee pain subsided off of gluten. When I get accidentally glutened now one of the first places I feel it is in my knees and joints. I am also free of any GERD symptoms as long as I avoid all food triggers. I did another test called MRT that helped me to identify my remaining triggers.
Again, welcome to our internet family. We are here to answer any questions so don't be afraid to ask anything . . . chances are we have already talked about it.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
-
blackcatjordie
- Posts: 12
- Joined: Sat Sep 03, 2011 9:56 am
just a few more questions (again) re: my cc
Again, thank you everyone for your help. I woke up yesterday morning, feeling so crummy, and got the courage to go to this support group and post. By the time I went to bed last night I had more info in 12 hours than I have received in 6 months from my doctors.
I have a few more questions if anyone has any input:
1) I am starting gluten free today, and I am excited. I noticed that a lot of people have the multiple sensitivities. I am wondering if this is the norm, or am I just seeing it more in the posts because people with multiple sensitivities are looking for additional advice? Are there a lot of people out there who go off of gluten and find good results without eliminating other foods? Or, is it more common to have multiple sensitivities? ( I guess at this point I am looking for hope - i.e. maybe this is all I have to do - maybe it won't be so bad - maybe I will feel better pretty quickly - it happens with a lot of our members.....)
2) I go off the pepto in about two weeks. If I have to do endocort will it really mess up the potential benefits of my diet changes? Obviously I do not know what will happen going gluten free, but I am just one of those people who likes to think about everything and all the potential outcomes. I really hate the idea of endocort but with two little kids I don't have the luxury of staying at home when I don't feel good.
3) Has anyone had hair loss? I kept thinking my hair is getting thinner, and my hairdresser confirmed it this week. I read that hair loss can be attributed to major stresses, illnesses, weight loss, etc. I have certainly met all of those indicators. However, I also read that you need B vitamins, and your body might not be absorbing what I need. Will a supplement help? If so what supplement? I have been taking a multi vitamin and a probiotic. I know it sounds horrible, but the thought of losing my hair is just as overwhelming to me than chronic diarreah. Vanity is a terrible thing.
4) I feel I am constantly struggling with healthy eating vs. only eating foods I can handle (not that I have really found any that consistently work). I am worried about more effects on my body (like hair loss and weight loss and bone loss). Is it better to just focus on healing first? How long can your body go without a lot of damage from a very limited diet?
5) Does exercise help at all? I recently started yoga and I am trying to walk as much as I can. However, quite often I am just super tired, and I am not sure what is best for my body. Will exercise be better or rest?
Right now I am going to order the entero lab panel b results and the fat malabsorption test and see what transpires. I am sure then I will have a much better idea as to how to handle all of this.
Any input would be great! Again, thank you so very much for all of you taking the time to respond to me.
I have a few more questions if anyone has any input:
1) I am starting gluten free today, and I am excited. I noticed that a lot of people have the multiple sensitivities. I am wondering if this is the norm, or am I just seeing it more in the posts because people with multiple sensitivities are looking for additional advice? Are there a lot of people out there who go off of gluten and find good results without eliminating other foods? Or, is it more common to have multiple sensitivities? ( I guess at this point I am looking for hope - i.e. maybe this is all I have to do - maybe it won't be so bad - maybe I will feel better pretty quickly - it happens with a lot of our members.....)
2) I go off the pepto in about two weeks. If I have to do endocort will it really mess up the potential benefits of my diet changes? Obviously I do not know what will happen going gluten free, but I am just one of those people who likes to think about everything and all the potential outcomes. I really hate the idea of endocort but with two little kids I don't have the luxury of staying at home when I don't feel good.
3) Has anyone had hair loss? I kept thinking my hair is getting thinner, and my hairdresser confirmed it this week. I read that hair loss can be attributed to major stresses, illnesses, weight loss, etc. I have certainly met all of those indicators. However, I also read that you need B vitamins, and your body might not be absorbing what I need. Will a supplement help? If so what supplement? I have been taking a multi vitamin and a probiotic. I know it sounds horrible, but the thought of losing my hair is just as overwhelming to me than chronic diarreah. Vanity is a terrible thing.
4) I feel I am constantly struggling with healthy eating vs. only eating foods I can handle (not that I have really found any that consistently work). I am worried about more effects on my body (like hair loss and weight loss and bone loss). Is it better to just focus on healing first? How long can your body go without a lot of damage from a very limited diet?
5) Does exercise help at all? I recently started yoga and I am trying to walk as much as I can. However, quite often I am just super tired, and I am not sure what is best for my body. Will exercise be better or rest?
Right now I am going to order the entero lab panel b results and the fat malabsorption test and see what transpires. I am sure then I will have a much better idea as to how to handle all of this.
Any input would be great! Again, thank you so very much for all of you taking the time to respond to me.
Hi Peggy,
I'm not sure what the answer is to question 1) - perhaps Tex has a better idea. I believe the answer is somewhat tied to the genes - those of us with 2 celiac or gluten sensitivity genes are likely to have multiple intolerances. I believe that for me, the time factor also played a role, as I went at least 10 years with untreated MC and WD before discovering the diet connection.
2) This will depend on how you do with the diet modification. As for me, I noticed an immediate improvement in number of BM's when I dropped only gluten, then I got progressively better for each additional sensitivity I was able to identify and drop from my diet.
3) I have noticed that I lose a lot less hair now than I used to, which probably has to do with my healthier diet. I don't take any supplements, so cannot answer about that.
4) I've never eaten a healthier diet in my life - i.e. making things from scratch, rather than processed food. I eat a mix of veggies, fruits, nuts, chicken, fish, beans, rice and potatoes. Unlike many here, I don't eat red meats, as they seem to bother me. This actually works in my favor, since I've never liked them anyway. When I'm flaring a bit, I make chicken soup from scratch, which always seems to get me back on track.
5) Exercise has been my savior all my life in terms of increased energy. You cannot go wrong with Yoga and walking for an energy boost. Resting too much tends to make me more exhausted.
Hope this helped - I'm sure you'll get varying opinions from others. We have found that our path back to health is highly individual, so I can only advise on what has worked for me.
You certainly seem to have what it takes to heal. I look forward to follow your progress through your posts here and wish you all the best on journey back to health.
Love,
Kari
I'm not sure what the answer is to question 1) - perhaps Tex has a better idea. I believe the answer is somewhat tied to the genes - those of us with 2 celiac or gluten sensitivity genes are likely to have multiple intolerances. I believe that for me, the time factor also played a role, as I went at least 10 years with untreated MC and WD before discovering the diet connection.
2) This will depend on how you do with the diet modification. As for me, I noticed an immediate improvement in number of BM's when I dropped only gluten, then I got progressively better for each additional sensitivity I was able to identify and drop from my diet.
3) I have noticed that I lose a lot less hair now than I used to, which probably has to do with my healthier diet. I don't take any supplements, so cannot answer about that.
4) I've never eaten a healthier diet in my life - i.e. making things from scratch, rather than processed food. I eat a mix of veggies, fruits, nuts, chicken, fish, beans, rice and potatoes. Unlike many here, I don't eat red meats, as they seem to bother me. This actually works in my favor, since I've never liked them anyway. When I'm flaring a bit, I make chicken soup from scratch, which always seems to get me back on track.
5) Exercise has been my savior all my life in terms of increased energy. You cannot go wrong with Yoga and walking for an energy boost. Resting too much tends to make me more exhausted.
Hope this helped - I'm sure you'll get varying opinions from others. We have found that our path back to health is highly individual, so I can only advise on what has worked for me.
You certainly seem to have what it takes to heal. I look forward to follow your progress through your posts here and wish you all the best on journey back to health.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Welcome Peggy,
I think many, if not most people here have multiple sensitivities, with gluten and casein being the biggies, followed by soy and sometimes eggs. Other common irritants are citrus, lettuce and nightshade vegetables. I had significant relief after cutting gluten and dairy and most soy. I tried the 8/day Pepto regimen, but it quickly became 4/day. Now I only take it for symptom flares, and rarely more than 2 tablets a day. I struggle with the healhy eating thing too. Unfortunately, I know I eat more fiber than I should (fruits, vegetables, greens, brown rice, beans), which seems to aggravate my symptoms.
I have continuous hairloss, but no bald patches yet. It can be related to vitamin deficiencies or other autoimmune processes going on. I take B-complex, vitamin D and Cal/mag every day, sometimes a multivitamin and fish oil.
I can't say I exercise much, but I know I should! I feel so fit and trim on the GF/DF diet, I feel like I don't need to, but I intend to start. I also have exercise intolerance (hives, redness, itching, etc), so it's more of a commitment for me that most. But I'm sure it would help with stress.
I think many, if not most people here have multiple sensitivities, with gluten and casein being the biggies, followed by soy and sometimes eggs. Other common irritants are citrus, lettuce and nightshade vegetables. I had significant relief after cutting gluten and dairy and most soy. I tried the 8/day Pepto regimen, but it quickly became 4/day. Now I only take it for symptom flares, and rarely more than 2 tablets a day. I struggle with the healhy eating thing too. Unfortunately, I know I eat more fiber than I should (fruits, vegetables, greens, brown rice, beans), which seems to aggravate my symptoms.
I have continuous hairloss, but no bald patches yet. It can be related to vitamin deficiencies or other autoimmune processes going on. I take B-complex, vitamin D and Cal/mag every day, sometimes a multivitamin and fish oil.
I can't say I exercise much, but I know I should! I feel so fit and trim on the GF/DF diet, I feel like I don't need to, but I intend to start. I also have exercise intolerance (hives, redness, itching, etc), so it's more of a commitment for me that most. But I'm sure it would help with stress.
Hi Peggy,
I apparently somehow missed your last post, until this morning. You've received some good answers from Kari and Zizzle, so I'll just fill in a little, here and there. As Zizzle mentioned, most of us are sensitive to gluten and dairy, and about half of us are sensitive to soy. Smaller percentages of members have other sensitivities. If you want to start the diet slowly, you can start with gluten, since that's the main offender, and you may be able to reach remission after a few weeks or so. Most likely, after a few weeks of vastly improved symptoms, you'll relapse, which will confirm that you need to eliminate additional foods from your diet. The immune system can only concentrate on one allergen at a time, so when the antibodies for gluten begin to diminish, your immune system will begin reacting to the next most significant food-sensitivity, which is usually casein, (the primary protein in milk).
Whether or not Entocort will negatively affect your diet changes, depends on how you look at it. It will make it more difficult to determine any food sensitivities, since it will mask your symptoms, but it will make you feel much better, so that you can lead a reasonably normal life, while trying to heal your intestines. After you're in remission for awhile, you can begin to taper the dose of Entocort, and if your symptoms return, then you know that either you have additional food-sensitivities, or you need additional healing time before reducing the Entocort dosage, or both.
My guess is that the hair loss is associated with the malabsorption problem. Be aware that Entocort might possibly make the problem worse, but normally it should help, since it can help to correct the malabsorption problem. Asacol, (and probably some of the other 5-ASA drugs), is notorious for causing hair loss), but Entocort has a lower risk of causing that problem. As your digestion improves, the hair loss problem should slowly fade away. The "B" vitamins are often associated with that problem, but other deficiencies could also be involved.
Don't worry much about eating healthy, until after you can get your symptoms resolved. It doesn't matter how healthy your diet might be, when it just goes right through you, and all your nutrients end up in the toilet bowl, anyway. You can get by without supplements for quite a while, as Kari has done, but as Zizzle mentioned, if you can find vitamins that you can safely tolerate, it helps to take at least B-12, folic acid, vitamin D, and either a good multivitamin, or a "B" combo supplement.
As Kari pointed out, even though it's tough to try to exercise when you're already fatigued from the disease, most members have found that exercise actually helps to create more energy, and more endurance. It's possible that you might be getting a reasonable level of exercise from your normal work schedule, but you would be the best judge of that. I always found that I felt better when I got out and did physical work, except for the days when nausea and/or migraines dominated the situation.
The Entoerolab test results will simplify the decisions on diet changes. If you're already avoiding gluten now, that should carry you until you get your Enterolab test results back, and you can refine your diet plan according to those results.
Good luck with the diet, and I hope you're lucky enough to be able to see benefits quickly.
Tex
I apparently somehow missed your last post, until this morning. You've received some good answers from Kari and Zizzle, so I'll just fill in a little, here and there. As Zizzle mentioned, most of us are sensitive to gluten and dairy, and about half of us are sensitive to soy. Smaller percentages of members have other sensitivities. If you want to start the diet slowly, you can start with gluten, since that's the main offender, and you may be able to reach remission after a few weeks or so. Most likely, after a few weeks of vastly improved symptoms, you'll relapse, which will confirm that you need to eliminate additional foods from your diet. The immune system can only concentrate on one allergen at a time, so when the antibodies for gluten begin to diminish, your immune system will begin reacting to the next most significant food-sensitivity, which is usually casein, (the primary protein in milk).
Whether or not Entocort will negatively affect your diet changes, depends on how you look at it. It will make it more difficult to determine any food sensitivities, since it will mask your symptoms, but it will make you feel much better, so that you can lead a reasonably normal life, while trying to heal your intestines. After you're in remission for awhile, you can begin to taper the dose of Entocort, and if your symptoms return, then you know that either you have additional food-sensitivities, or you need additional healing time before reducing the Entocort dosage, or both.
My guess is that the hair loss is associated with the malabsorption problem. Be aware that Entocort might possibly make the problem worse, but normally it should help, since it can help to correct the malabsorption problem. Asacol, (and probably some of the other 5-ASA drugs), is notorious for causing hair loss), but Entocort has a lower risk of causing that problem. As your digestion improves, the hair loss problem should slowly fade away. The "B" vitamins are often associated with that problem, but other deficiencies could also be involved.
Don't worry much about eating healthy, until after you can get your symptoms resolved. It doesn't matter how healthy your diet might be, when it just goes right through you, and all your nutrients end up in the toilet bowl, anyway. You can get by without supplements for quite a while, as Kari has done, but as Zizzle mentioned, if you can find vitamins that you can safely tolerate, it helps to take at least B-12, folic acid, vitamin D, and either a good multivitamin, or a "B" combo supplement.
As Kari pointed out, even though it's tough to try to exercise when you're already fatigued from the disease, most members have found that exercise actually helps to create more energy, and more endurance. It's possible that you might be getting a reasonable level of exercise from your normal work schedule, but you would be the best judge of that. I always found that I felt better when I got out and did physical work, except for the days when nausea and/or migraines dominated the situation.
The Entoerolab test results will simplify the decisions on diet changes. If you're already avoiding gluten now, that should carry you until you get your Enterolab test results back, and you can refine your diet plan according to those results.
Good luck with the diet, and I hope you're lucky enough to be able to see benefits quickly.
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.