Hello everybody. :)
My name is Michał, I'm 28 from Poland. I registered to this forum cause I have been recently diagnosed with lymphocytic colitis. I've been struggling with bowel problems for few years, but just recently after being in hospital and after yet another colonoscopy they found what's exactly wrong.
I developed problems with my belly few years ago after I stopped taking antidepressants (which I took for depression and anxiety), I had huge depression and fears after this, I also tried to give up smoking cigarettes at the time, I think now that made really bad mixture to my health. When I experienced problems I didn't know what happened, it was totally out of control. First thing that helped was going back to antidepressants (escitalopram at the time).
I'm currently on sertraline. And of course I found on the internet the information about strong relation between lymphocytic colitis and SSRI's (mainly sertraline), and I tried after consulting my psychiatrist that I'd gradually come off sertraline as much as I could. And I did this - a month of coming off the dose 200 mg to 100 mg / day which I'm on currently, but I'm afraid it would be rather difficult for me to come off more. Yesterday I spoke to gastrologist who took care of me in hospital, and she said that no need to going off the sertraline (that confused me - so why then everywhere on the internet they write about the connection and recommend to stop taking sertraline...?). Next week I'm going to my psychiatrist and ask for another antidepressant, not SSRI, probably Bupropion.
The gastro doc also said that I should try Budesonide (she gave me mesalazine 1,5 month ago but I don't see much difference) and I'm now into that idea, because everything is bad now (in fact worsen than when I was on 200 mg of sertraline, because I feel more anxiety, depression, also got headaches and I am very tired, because of SSRI withdrawal). I have a mix of D and C, a lot of discomfort, gas and mucous. I was always rather constipated, but after I tried sertraline I also developed diarrhea (but I think rather on mild doses). I don't know if budesonide is a good idea, but I need help right now.
I'm trying now also vitamin D, herbs for stress with vit B, omega-3 capsules or flaxseed, etc.
Maybe you can give me some advice. Maybe I'm doing things wrong. :\ I don't know how to menage this sh*t (for example - should I be going off sertraline or no?).
Sorry for language mistakes. Many thanks for your replies.
New user recently diagnosed
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hello Michal,
Welcome to the discussion board. I agree with you about the SSRIs. It appears from your symptoms that SSRIs cause diarrhea for you. If Bupropion will work for you, it is much, much safer than the SSRIs. It is not nearly as likely to cause problems for your digestive system.
You seem to know more about medications than your GI specialist. Budesonide works well for diarrhea, but if constipation is the problem, it can make the problem worse, because it can cause constipation. If you try it, and it causes constipation, try reducing the dose.
The most effective (and safest) way that we have found to treat LC is to change our diet so that we completely avoid all foods that cause us to produce antibodies. Most of us here are sensitive to gluten, casein (the main protein in all dairy products) and soy (including legumes). Some of us are also sensitive to eggs and other foods, but gluten, casein, and soy are the biggest problems, and they cause severe intestinal inflammation for most of us. If we avoid them 100 %, our intestines slowly heal, and all the symptoms fade away. But budesonide can sometimes be used to help suppress the symptoms while the diet changes are healing the gut. It takes a long time for the intestines to heal. I've been in remission for over 10 years by diet changes only.
Those vitamin supplements are usually helpful, especially the vitamin D. Flaxseed oil usually works better than flaxseed, because flaxseed hulls are a laxative.
Your English is fine. And I agree that Bupropion might work much better, because it usually has the least number of side effects of any of the antidepressdants or antianxiety medications.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the discussion board. I agree with you about the SSRIs. It appears from your symptoms that SSRIs cause diarrhea for you. If Bupropion will work for you, it is much, much safer than the SSRIs. It is not nearly as likely to cause problems for your digestive system.
You seem to know more about medications than your GI specialist. Budesonide works well for diarrhea, but if constipation is the problem, it can make the problem worse, because it can cause constipation. If you try it, and it causes constipation, try reducing the dose.
The most effective (and safest) way that we have found to treat LC is to change our diet so that we completely avoid all foods that cause us to produce antibodies. Most of us here are sensitive to gluten, casein (the main protein in all dairy products) and soy (including legumes). Some of us are also sensitive to eggs and other foods, but gluten, casein, and soy are the biggest problems, and they cause severe intestinal inflammation for most of us. If we avoid them 100 %, our intestines slowly heal, and all the symptoms fade away. But budesonide can sometimes be used to help suppress the symptoms while the diet changes are healing the gut. It takes a long time for the intestines to heal. I've been in remission for over 10 years by diet changes only.
Those vitamin supplements are usually helpful, especially the vitamin D. Flaxseed oil usually works better than flaxseed, because flaxseed hulls are a laxative.
Your English is fine. And I agree that Bupropion might work much better, because it usually has the least number of side effects of any of the antidepressdants or antianxiety medications.
Again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
you'll start seeing a difference a lot sooner here than getting answers from a Dr. Hi, once more!
Thank you for your responses!
I am sorry that I haven't responded you earlier, I don't know exactly why, sometimes it happens like this. I've started to take these budesonide pills and I've been slowly weaning off sertraline. Probably I didn't want to think about this illness and tried to concentrate on another things in my life.
@tex
Thank you very much for your long response.
As I wrote, I am no longer on Saris (like about. 3 weeks?). I take 2 pills of budesonide now. I took 3, then 2, thought it makes me constipated, so tried 1 pill and then nothing for 2 days, but I felt bad (not only my intestines but my mood) so decided to try the 2 pills dose once more. 2 days I were fine and now not so fine so we'll probably cut the dose once more. LOL
I also have read your post once more and decided that I should go gluten free if that will cure my intestines. I'm trying now to slowly go GF. In fact I've been against that idea, because I always thought that this "gluten case" is rather a fictional thing then actually exists. I thought it's rather matter of money (producers of expensive GF food) and a foolish trend.
But I am curious - I've seen you're tested in labs that you have gluten and other intolerances. When I was in the hospital I was also tested by the dietetician for food intolerances. Test is called ELISA. Big intolerance for cow's milk came out (+++), middle for "a whole egg" (++) and little for yeast (+), but there was no gluten intolerance. What's the difference between this test and your tests? Maybe I'm "just" mainly intolerant to casein?
Best regards,
Michal
Thank you for your responses!
I am sorry that I haven't responded you earlier, I don't know exactly why, sometimes it happens like this. I've started to take these budesonide pills and I've been slowly weaning off sertraline. Probably I didn't want to think about this illness and tried to concentrate on another things in my life.
@tex
Thank you very much for your long response.
As I wrote, I am no longer on Saris (like about. 3 weeks?). I take 2 pills of budesonide now. I took 3, then 2, thought it makes me constipated, so tried 1 pill and then nothing for 2 days, but I felt bad (not only my intestines but my mood) so decided to try the 2 pills dose once more. 2 days I were fine and now not so fine so we'll probably cut the dose once more. LOL
I also have read your post once more and decided that I should go gluten free if that will cure my intestines. I'm trying now to slowly go GF. In fact I've been against that idea, because I always thought that this "gluten case" is rather a fictional thing then actually exists. I thought it's rather matter of money (producers of expensive GF food) and a foolish trend.
But I am curious - I've seen you're tested in labs that you have gluten and other intolerances. When I was in the hospital I was also tested by the dietetician for food intolerances. Test is called ELISA. Big intolerance for cow's milk came out (+++), middle for "a whole egg" (++) and little for yeast (+), but there was no gluten intolerance. What's the difference between this test and your tests? Maybe I'm "just" mainly intolerant to casein?
Best regards,
Michal
Hi, Michal. I eliminated dairy from my diet at the same time as gluten. Many of us are intolerant to casein. It's been two years for me and avoiding the foods that cause issues gets easier as you go along. Good luck on your journey, you've come to the right place for answers.
Marcia
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
Hi Michal,
As Marcia pointed out, most of us are sensitive to at least gluten and casein (dairy). Usually, the only patients who have MC and who are not sensitive to gluten are those whose disease was caused by a medication (such as an SSRI), and for some of those people, when they stop taking the medication that caused their disease, their symptoms disappear and do not return. Those individuals are not sensitive to gluten. But unfortunately, if the symptoms continue (or soon return) after stopping the medication, then the reason why they continue is because of gluten in the diet.
For almost all of us, when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered. Unfortunately, the blood tests used by physicians are not capable of detecting the type of non-celiac gluten sensitivity that we have. The antibodies are in the intestines (and in stool), not in the blood, and the only lab in the world that has a reliable stool test for detecting the type of food sensitivities that we have is located in Dallas, Texas, in the USA. The tests they use are also ELISA tests, but they are done on stool samples, not blood. That's why they are so much more sensitive than the blood tests for detecting antibodies produced in the digestive system. But they hold the patents on the tests, and there are no labs in Europe licensed to do these tests, unfortunately.
Gluten antibodies have a very long half-life (120 days), so it takes a very long time for reactions to stop for some of us after we remove gluten from our diet. But some of us see improvements in a few weeks. In order for our immune system to stop producing the antibodies, we have to avoid every trace of the foods that cause us to react. Avoiding 99 % of the gluten in our diet for example, will not bring relief, and the inflammation will continue to be produced.
Sometimes those blood tests (such as the ones you had) are correct about the positive test results that they show, but they have a bad reputation for missing negative results, and most of them completely miss gluten sensitivity. So you would probably have to avoid gluten, all dairy products, eggs, and possibly soy, in order to control your symptoms by diet changes.
Many of us here are in the same situation as you and we avoid those foods in order to control our symptoms. We don't enjoy eating such a restricted diet, but it is so much better than living with the symptoms of the disease, and not being able to leave the house without risking having an "accident" in public. Some of us have found that we are able to eat duck, goose, or turkey eggs, especially after we are in remission and our gut has healed for a while. But no one has found any safe milk that comes from any type of cows, goats, or sheep. There is a possibility that milk from cameloids (camels, alpacas, guannacos, llamas, and vicuñas) might be safe, because they are genetically different from all of the other milk-producing mammals. It's also possible that equine milk (horses, donkeys, asses, zebras, etc.) might be safe, but no one here has tried that. Most members here use either coconut milk, almond milk, hemp milk, or rice milk.
All my best,
Tex
As Marcia pointed out, most of us are sensitive to at least gluten and casein (dairy). Usually, the only patients who have MC and who are not sensitive to gluten are those whose disease was caused by a medication (such as an SSRI), and for some of those people, when they stop taking the medication that caused their disease, their symptoms disappear and do not return. Those individuals are not sensitive to gluten. But unfortunately, if the symptoms continue (or soon return) after stopping the medication, then the reason why they continue is because of gluten in the diet.
For almost all of us, when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered. Unfortunately, the blood tests used by physicians are not capable of detecting the type of non-celiac gluten sensitivity that we have. The antibodies are in the intestines (and in stool), not in the blood, and the only lab in the world that has a reliable stool test for detecting the type of food sensitivities that we have is located in Dallas, Texas, in the USA. The tests they use are also ELISA tests, but they are done on stool samples, not blood. That's why they are so much more sensitive than the blood tests for detecting antibodies produced in the digestive system. But they hold the patents on the tests, and there are no labs in Europe licensed to do these tests, unfortunately.
Gluten antibodies have a very long half-life (120 days), so it takes a very long time for reactions to stop for some of us after we remove gluten from our diet. But some of us see improvements in a few weeks. In order for our immune system to stop producing the antibodies, we have to avoid every trace of the foods that cause us to react. Avoiding 99 % of the gluten in our diet for example, will not bring relief, and the inflammation will continue to be produced.
Sometimes those blood tests (such as the ones you had) are correct about the positive test results that they show, but they have a bad reputation for missing negative results, and most of them completely miss gluten sensitivity. So you would probably have to avoid gluten, all dairy products, eggs, and possibly soy, in order to control your symptoms by diet changes.
Many of us here are in the same situation as you and we avoid those foods in order to control our symptoms. We don't enjoy eating such a restricted diet, but it is so much better than living with the symptoms of the disease, and not being able to leave the house without risking having an "accident" in public. Some of us have found that we are able to eat duck, goose, or turkey eggs, especially after we are in remission and our gut has healed for a while. But no one has found any safe milk that comes from any type of cows, goats, or sheep. There is a possibility that milk from cameloids (camels, alpacas, guannacos, llamas, and vicuñas) might be safe, because they are genetically different from all of the other milk-producing mammals. It's also possible that equine milk (horses, donkeys, asses, zebras, etc.) might be safe, but no one here has tried that. Most members here use either coconut milk, almond milk, hemp milk, or rice milk.
All my best,
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.
Hi Michal. You will see that your diet will be the key to healing your gut. I am over three years post Dx and am in remission. I was on Budesonide for 6 months ( slowly lowering the dose over time). We have found that we have better results if we stay on the drug for at least four months. While on Budesonide, I went on a pretty restrictive diet because i wanted to heal my gut as quickly as possible. it was not fun and was hard on my social life for about a year, but as I healed, I was able to add some foods back in ( like raw fruits and veggies, beans and legumes, decaf coffee, some sugar, salad...etc.) Your diet right now should consist mostly of proteins, white rice, very cooked veggies, maybe some potatoes, GF Chex cereal with almond or coconut milk, use only oilive and coconut oils for now and avoid most processed foods. Fiber is not good right now for you.
It's a tough diet to stick to, but you will feel so much better. I can now even cheat a bit with a little cheese and a little soy now. Life is good :)
PS i have been trying different antidepressants for hot flashes ( post cancer ) and have found that Effexor works well with my MC.
Good luck
Leah
It's a tough diet to stick to, but you will feel so much better. I can now even cheat a bit with a little cheese and a little soy now. Life is good :)
PS i have been trying different antidepressants for hot flashes ( post cancer ) and have found that Effexor works well with my MC.
Good luck
Leah
Re: New user recently diagnosed
Hello Michal,michalski wrote:Hello everybody. :)
I'm trying now also vitamin D, herbs for stress with vit B, omega-3 capsules or flaxseed, etc.
You have already received a lot of good advice, and you have come to the right place, and you will get your health back, but it takes time and patience.
Mental issues, like depression and anxiety, often are linked to a lack of important vitamins, in particular the active forms of B12, B9 and B6. But no psychiatrist or doctor will ever tell you that...
I don't know if you can get these in Poland, but you should try:
B12 Methylcobalamine - sublinguals (tablets under your tongue)
Methyl Folate - 5 Methyltetrahydrofolic acid (the active form of B9)
P-5-P - Pyridoxal 5' Phosphate (the active form of B6)
Have you measured your D-vitamin level?
I don't know if you can get the hold of high dose of vitamin D3, but if your level is low, you can start with 5.000 i.u. of D3.
The above, together with a glutenfree- and casein-free diet, should be a good start. Most of us are sensitive to both gluten, casein, soy and also eggs, but the two biggest offenders are gluten and casein.
Continue to ask questions, because we are all here to help you.
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Welcome Michal......
I started MC very recently too. I am currently on a very strict elimination diet and asking questions on this forum. My daily food journal is on the forum and updated weekly.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21620
I started MC very recently too. I am currently on a very strict elimination diet and asking questions on this forum. My daily food journal is on the forum and updated weekly.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21620
Psoriatic Arthritis
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
Hi once more!
Thank you very much for your responses.
As you see, it costed me some time to respond, mostly because I'm constantly tired. I think the diet must be one of the reasons of this tiredness. I can't fill my hunger many times. Unfortunately I cheated few times. I'm afraid it might be too difficult for me to stick with the diet. :\ Also because so many of the food products have these labels "it may contain gluten, dairy, etc.", even f***ing spices or non-gluten groats. As Tex wrote - one has to avoid every trace of forbidden food. :( (And this GF bread that they have in stores - awful and definitely not healthy! I've made a corn bread but too bitter and too small - not useful to make sandwiches :( )
I thought it was a little better while being GF, but it might be because I've eaten less. When I'm GF I smoke more cigarettes, I think they're the biggest culprit in doing bad things with my intestines (maybe because they cause immediate reaction...). Now I think maybe I just do not smoke and everything will be fine.. ? But how smoking could cause so smelly, disgusting gas and toilette "sessions" with such gross effects that I had on past few days? :\
Tex, thank you for the explanation of the difference between tests. I have to read your book definitely to know your knowledge, unfortunately I don't have money now. I've started a "little" time ago a book "Breaking a vicious cycle", but I didn't read much and stopped. I have to read it, do you recommend it? Seems like the author has similiar point of view in the "gut-problems" topic.
Leah, thanks for food advices. I don't take budesonide, it's not good for me. Also I don't want to go back to antidepressants (Effexor gave me very high blood pressure, but without it would be quite good I think). I used to take some herbal meds to calm myself and to feel better mentally. Week or two ago I bought something with L-Tryptohan, pharmacist told me it would be good for me. But I think that one pill might caused bad reaction (one pill is 100 mg, I've read it's rather safe dose but probably I don't want to try once more).
Lilja, I've taken some natural antidepressant pills that have some vitamin B (mostly 6 & 9 I think). I haven't measure my vit D3 levels, don't even know where and how. I take 2 pills (2,000 u) now.
Thank you very much for your responses.
As you see, it costed me some time to respond, mostly because I'm constantly tired. I think the diet must be one of the reasons of this tiredness. I can't fill my hunger many times. Unfortunately I cheated few times. I'm afraid it might be too difficult for me to stick with the diet. :\ Also because so many of the food products have these labels "it may contain gluten, dairy, etc.", even f***ing spices or non-gluten groats. As Tex wrote - one has to avoid every trace of forbidden food. :( (And this GF bread that they have in stores - awful and definitely not healthy! I've made a corn bread but too bitter and too small - not useful to make sandwiches :( )
I thought it was a little better while being GF, but it might be because I've eaten less. When I'm GF I smoke more cigarettes, I think they're the biggest culprit in doing bad things with my intestines (maybe because they cause immediate reaction...). Now I think maybe I just do not smoke and everything will be fine.. ? But how smoking could cause so smelly, disgusting gas and toilette "sessions" with such gross effects that I had on past few days? :\
Tex, thank you for the explanation of the difference between tests. I have to read your book definitely to know your knowledge, unfortunately I don't have money now. I've started a "little" time ago a book "Breaking a vicious cycle", but I didn't read much and stopped. I have to read it, do you recommend it? Seems like the author has similiar point of view in the "gut-problems" topic.
Leah, thanks for food advices. I don't take budesonide, it's not good for me. Also I don't want to go back to antidepressants (Effexor gave me very high blood pressure, but without it would be quite good I think). I used to take some herbal meds to calm myself and to feel better mentally. Week or two ago I bought something with L-Tryptohan, pharmacist told me it would be good for me. But I think that one pill might caused bad reaction (one pill is 100 mg, I've read it's rather safe dose but probably I don't want to try once more).
Lilja, I've taken some natural antidepressant pills that have some vitamin B (mostly 6 & 9 I think). I haven't measure my vit D3 levels, don't even know where and how. I take 2 pills (2,000 u) now.
Michal,
Most of us cook at home in order to avoid the problems of contaminated processed foods. I use corn tortillas to make roll-ups to take the place of sandwiches. But if you decide to try them (if they are even available for sale in Poland), be sure you look for gluten-free corn tortillas. Do not accidentally buy flour tortillas, because they are loaded with gluten. Some companies also make rice tortillas that are safe.
The book, Breaking The Vicious Cycle, has one problem that does now work for us — it recommends yogurt and cheese, but most of us cannot tolerate them. Other than that problem, the diet recommended by the book works for some people.
If you can't afford my book, I'll be happy to send you a free digital copy, attached to an email. But I would need to know what type of format you would need. If you want to read it on a computer, then a PDF file would work (and a PDF file will also work on many mobile digital devices, if they have Adobe Reader, or some other PDF interpreter), but if you want a format that will work properly on an iPad or a kindle, or some other digital reading device, I would need to know what type you have.
Tex
Most of us cook at home in order to avoid the problems of contaminated processed foods. I use corn tortillas to make roll-ups to take the place of sandwiches. But if you decide to try them (if they are even available for sale in Poland), be sure you look for gluten-free corn tortillas. Do not accidentally buy flour tortillas, because they are loaded with gluten. Some companies also make rice tortillas that are safe.
The book, Breaking The Vicious Cycle, has one problem that does now work for us — it recommends yogurt and cheese, but most of us cannot tolerate them. Other than that problem, the diet recommended by the book works for some people.
If you can't afford my book, I'll be happy to send you a free digital copy, attached to an email. But I would need to know what type of format you would need. If you want to read it on a computer, then a PDF file would work (and a PDF file will also work on many mobile digital devices, if they have Adobe Reader, or some other PDF interpreter), but if you want a format that will work properly on an iPad or a kindle, or some other digital reading device, I would need to know what type you have.
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.
Michal, So sorry you are having trouble! Welcome to the group, ask questions. You will feel better once you start the diet and figure out the right medications.
Martha E.
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
Welcome, Michal! Sounds like you and I have a similar profile. I too developed LC after stopping an SSRI antidepressant (Prozac) and have struggled with digestive problems since my early 20's. I strongly believe that stress and anxiety have a huge role to play in triggering this disease. I've tried other non-SSRI drugs in the past and none of them work for me. Eventually, I ended up just having to go back on the Prozac. I now feel 100% better mentally/emotionally and have picked up some weight, but I still haven't been able to get the diarrhea under control (at least not without using Imodium). My issue seems to be antibodies (I react to most foods), so I'm trying to really clean up my diet by eliminating all the major triggers. It doesn't leave me many options, but if it works in the end, it'll all be worth it. :) I take 4 Imodium pills daily in order to function, which does help. Am also trying LDN, but will likely move on to budesonide if the LDN does not work after a month or so. Please know that you are not alone! You've come to the right place for support and guidance. Glad you found this group (but sorry you had to do so). Hang in there!
Lucy
Lucy
2005- Crohn's dx (later changed to "IBS")
2010 to present- Recurrent miscarriages (9)
2012 to present- Elevated thyroid antibodies and TNF-a
2012- tested compound heterozygous for MTHFR mutation
2015- LC dx
2010 to present- Recurrent miscarriages (9)
2012 to present- Elevated thyroid antibodies and TNF-a
2012- tested compound heterozygous for MTHFR mutation
2015- LC dx