hi, everyone! i just wanted to share my experience with my condition and introduce myself. i started having GI problems in 2007, but i was having joint pain for years before this, which may or may not be related. i suffered for a few years before seeking help and being diagnosed after my first colonoscopy in march, 2010. i was also ruled out for full blown celiac disease, lactose intolerance, and autoimmune arthritises. i was put on lialda (mesalamine), starting at 2 then going up to 4 pills a day, and told not to change my diet by my gi, without any success. i went to a naturopath who put me on a low residue diet and i was able to achieve resolution of my GI symptoms in about 6 months that way. eventually i was able to wean down to 1 lialda a day and eat normally without GI symptoms. despite this, my joint pain continued and i suffered from depression and fatigue, so my PCP put me on cymbalta in 2012. it actually made me feel excellent...while i was on it.
this february i experienced a small flare after a bad upper respiratory infection treated with antibiotics, which was getting under control when i upped my lialda back up to 4/day. but, alas, my real desire in life has been to get pregnant and start a family with my husband, which we'd been putting off until i got better. so, with MD approaval, i started weaning off the cymbalta in april to get pregnant, and by may i was in a full flare! the first month, my GI doc did nothing at first except check for c-diff and some other infection (thanks, buddy). i bought wayne's book and decided to eliminate gluten and dairy after reading it. and then my GI doc finally decided it was time for entocort, 9mg/day x6 weeks, then wean to 6mg/day x2 weeks, then 3mg/day x2 weeks, then see him again. i also take L-glutamine powder, and hypo-allergenic probiotics, Vit D, Fish Oil, and prenatal multivitamins. so i've been on the modified diet for 6 weeks and entocort for 3 weeks now. my diarrhea is more occasional, my stool is more formed, and my frequency is down, but my BM's still aren't normal, and i'm still having abdominal cramps and bloating. but i do have to say my joint pain and fatigue are so much better since i'm deglutenized.
so, i'm 30 now. i'm still working full time as a physical therapist, but i was lucky enough to be able to decrease my hours to 30/week since my flare. which does mean i'm broke and saving my pennies for an enterolab test. right now i'm basically eating eggs, chicken, beef, pork, potatoes, sweet potatoes, white rice, zucchini, squash, canned green beans, cooked carrots, rice cakes with peanut butter, bananas, salt, olive oil, stevia, and earth's balance spread... but who knows if this is even right. we've yet again put off trying to conceive, but its my main motivation to get my gut under control! if you have any wisdom to offer me, i would welcome it with an open mind! thanks for listening!
-caiti
newbie intro
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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CaitiCakes
- Posts: 9
- Joined: Thu Jul 25, 2013 5:14 pm
- Location: Westerly, RI
newbie intro
Diagnosed Lymphocytic Colitis March, 2010 (27 years old)
Current Medications: Entocort 9mg/day
Current Medications: Entocort 9mg/day
Welcome Caiti!
So sorry to hear that you are still suffering and have not found the exact diet you settle things down yet. If you don't get tested, it takes a lot of detective work. I can't use Enterolab because i am IgA deficient, so I know how it is. I also was on Entocort for 6 months total. I have been off of it now for over a year now. My BMs are not solid, but I have no urgency and only go once a day in the morning. I can live with that.Some of us don't feel right until they have "normans". I just find that my quality of life is better if i don't obsess about it.
It's important that you not get off of the Entocort too quickly. It seems that relapse happens more often if you don't use it long enough. Your gut needs time to heal. I slowly weaned off, lowering the dose every time I got slightly constipated. The last phase ( when you are taking 3 mg every other day) is when you can really tell what you are reacting to. the Entocort can mask reactions.
The thing about this disease is that we are all different in our intolerances. I eat all meats and eggs, but many of us can't. I eat rice, but some can't. I have been able to add raw veggies back into my diet, but fruit is still a problem. Sugars in general can remain a problem for many of us.
If you are still having problems, you might want to omit soy and/or eggs. peanut butter is a cousin of soy. I ate it the first six months until I realized once I was off the drug, that I was reacting and switched to almond butter. I eliminated eggs for a week, but found no difference, so I added them back in. it's a process.... a long process.
Also probiotics cause some of us problems. I am one of them. I used L-glut for 6 months, but found that when I finally omitted it, I felt better. The more things we ingest, the more question marks there are. When we are in a flare, many of us do better if we omit all of our supplements. They aren't being absorbed anyway and it's hard for your gut to break them down. After a while, you can add one at a time back in to see how/if you react.
That is a few things you can think about. So far, you are doing a great job and I am sure the gluten was making you sick. Glad you finally got rid of that!
Good luck and keep us posted on your progress.
Leah
So sorry to hear that you are still suffering and have not found the exact diet you settle things down yet. If you don't get tested, it takes a lot of detective work. I can't use Enterolab because i am IgA deficient, so I know how it is. I also was on Entocort for 6 months total. I have been off of it now for over a year now. My BMs are not solid, but I have no urgency and only go once a day in the morning. I can live with that.Some of us don't feel right until they have "normans". I just find that my quality of life is better if i don't obsess about it.
It's important that you not get off of the Entocort too quickly. It seems that relapse happens more often if you don't use it long enough. Your gut needs time to heal. I slowly weaned off, lowering the dose every time I got slightly constipated. The last phase ( when you are taking 3 mg every other day) is when you can really tell what you are reacting to. the Entocort can mask reactions.
The thing about this disease is that we are all different in our intolerances. I eat all meats and eggs, but many of us can't. I eat rice, but some can't. I have been able to add raw veggies back into my diet, but fruit is still a problem. Sugars in general can remain a problem for many of us.
If you are still having problems, you might want to omit soy and/or eggs. peanut butter is a cousin of soy. I ate it the first six months until I realized once I was off the drug, that I was reacting and switched to almond butter. I eliminated eggs for a week, but found no difference, so I added them back in. it's a process.... a long process.
Also probiotics cause some of us problems. I am one of them. I used L-glut for 6 months, but found that when I finally omitted it, I felt better. The more things we ingest, the more question marks there are. When we are in a flare, many of us do better if we omit all of our supplements. They aren't being absorbed anyway and it's hard for your gut to break them down. After a while, you can add one at a time back in to see how/if you react.
That is a few things you can think about. So far, you are doing a great job and I am sure the gluten was making you sick. Glad you finally got rid of that!
Good luck and keep us posted on your progress.
Leah
Hi Caiti,
Welcome to our internet family. It sounds as though you are off to a good start with your treatment. And Leah has provided some excellent information. As she mentioned, less is usually best, when treating this disease, because we may be reacting to ingredients in certain foods or supplements that we never suspected, and the fewer things we ingest, the easier it is to pinpoint the cause of our problems.
It can take quite a while for the intestinal damage caused by gluten to heal, but if your arthritis symptoms are already noticeably better, then your intestines are definitely healing, because the aching joints are a result of the leaky gut syndrome that usually accompanies both MC and untreated gluten-sensitivity.
After several months on the diet, you shouldn't still be having consistent bloating. I wonder if there is a chance that your diet may be somehow cross-contaminated with gluten or casein. Some of us are much more sensitive to trace amounts than others. For such individuals, just keeping wheat flour somewhere in the house can be sufficient to cause enough cross-contamination to prevent us from reaching complete remission.
In addition, with the 20 parts-per-million gluten allowance built into the GF labeling law, even processed foods labeled as GF can legally contain enough gluten to cause some of us to react, unfortunately. That's one of the reasons why many/most of us do better, and heal faster, if we completely avoid processed foods and all but essential supplements, at least while we are recovering.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. It sounds as though you are off to a good start with your treatment. And Leah has provided some excellent information. As she mentioned, less is usually best, when treating this disease, because we may be reacting to ingredients in certain foods or supplements that we never suspected, and the fewer things we ingest, the easier it is to pinpoint the cause of our problems.
It can take quite a while for the intestinal damage caused by gluten to heal, but if your arthritis symptoms are already noticeably better, then your intestines are definitely healing, because the aching joints are a result of the leaky gut syndrome that usually accompanies both MC and untreated gluten-sensitivity.
After several months on the diet, you shouldn't still be having consistent bloating. I wonder if there is a chance that your diet may be somehow cross-contaminated with gluten or casein. Some of us are much more sensitive to trace amounts than others. For such individuals, just keeping wheat flour somewhere in the house can be sufficient to cause enough cross-contamination to prevent us from reaching complete remission.
In addition, with the 20 parts-per-million gluten allowance built into the GF labeling law, even processed foods labeled as GF can legally contain enough gluten to cause some of us to react, unfortunately. That's one of the reasons why many/most of us do better, and heal faster, if we completely avoid processed foods and all but essential supplements, at least while we are recovering.
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.
Hi, how terrible to have this at 30, it's bad enough for those of us who are considerably older. Have you tried eating just chicken and rice for a few days and then adding one thing at a time to see if you react?
I've read here that you should give it about 3 days before adding a new food. If rice doesn't work (doesn't for me) then try sweet potato and chicken. Potatoes are a problem for some with mc or they wouldn't be testing for it on Enterolab.
I've been eating millet bread that I make with chicken or pork for sometime and have finally been feeling really good with normal stools with loose stools about once a week. I'm trying to wait until I don't have and bad days for two or three weeks before adding in something new like vegetables.
I haven't been able to take any supplements and I understand I may not be able to until my gut heals.
Are you keeping a food diary of everything you eat or drink? I didn't do this at first and wish I had. Now it has been such a help in playing detective with my reactions.
I hope you feel better soon. Take care
I've read here that you should give it about 3 days before adding a new food. If rice doesn't work (doesn't for me) then try sweet potato and chicken. Potatoes are a problem for some with mc or they wouldn't be testing for it on Enterolab.
I've been eating millet bread that I make with chicken or pork for sometime and have finally been feeling really good with normal stools with loose stools about once a week. I'm trying to wait until I don't have and bad days for two or three weeks before adding in something new like vegetables.
I haven't been able to take any supplements and I understand I may not be able to until my gut heals.
Are you keeping a food diary of everything you eat or drink? I didn't do this at first and wish I had. Now it has been such a help in playing detective with my reactions.
I hope you feel better soon. Take care
MC diagnosed 2007
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CaitiCakes
- Posts: 9
- Joined: Thu Jul 25, 2013 5:14 pm
- Location: Westerly, RI
thanks for the warm welcome, everyone!
leah- thanks for the advice on the entocort and food intolerances. its frustrating to have to put so much effort into your diet when you're not even sure its the "right" diet! i'm so curious: how did you find out you were igA deficient??
i was thinking of doing an elimination diet for in a few weeks after my company leaves and i can stick to it. i was thinking of using turkey and sweet potatoes to start, as those seem to be safe for me. But what i am wondering is how do i know i'm not getting "false negatives" when i start to add in foods while having success with the entocort treatment, as it tends to mask food reactions????
tex- yeah, i could definitely be glutening and caseining myself and not knowing it, or i could still be reacting to something i'm eating. we were on vacation recently and had to eat out, which was scary. thanks for the heads up on the GF labeling, one more good reason to go for the whole foods as much as possible.
mcnomore- yeah, it seems i've been blessed with MC in my young age. it will be interesting to see where it goes from here. i took accutane for my acne when i was a teenager and sometimes wonder if it got things going for me, as taking this drug seems to be related to developing other forms of IBD as well. anyway, thank you as well for the suggestions. you asked about a food diary- i have an app on my phone that i use, and it is actually pretty easy to use, it tracks your BM's and your food, but i am on and off with it. i actually really hate journaling my food and symptoms. although i know how helpful it is when i do it, i find focusing on my symptoms can really get me discouraged.
have a good weekend, everyone
-caiti
leah- thanks for the advice on the entocort and food intolerances. its frustrating to have to put so much effort into your diet when you're not even sure its the "right" diet! i'm so curious: how did you find out you were igA deficient??
i was thinking of doing an elimination diet for in a few weeks after my company leaves and i can stick to it. i was thinking of using turkey and sweet potatoes to start, as those seem to be safe for me. But what i am wondering is how do i know i'm not getting "false negatives" when i start to add in foods while having success with the entocort treatment, as it tends to mask food reactions????
tex- yeah, i could definitely be glutening and caseining myself and not knowing it, or i could still be reacting to something i'm eating. we were on vacation recently and had to eat out, which was scary. thanks for the heads up on the GF labeling, one more good reason to go for the whole foods as much as possible.
mcnomore- yeah, it seems i've been blessed with MC in my young age. it will be interesting to see where it goes from here. i took accutane for my acne when i was a teenager and sometimes wonder if it got things going for me, as taking this drug seems to be related to developing other forms of IBD as well. anyway, thank you as well for the suggestions. you asked about a food diary- i have an app on my phone that i use, and it is actually pretty easy to use, it tracks your BM's and your food, but i am on and off with it. i actually really hate journaling my food and symptoms. although i know how helpful it is when i do it, i find focusing on my symptoms can really get me discouraged.
have a good weekend, everyone
-caiti
Diagnosed Lymphocytic Colitis March, 2010 (27 years old)
Current Medications: Entocort 9mg/day
Current Medications: Entocort 9mg/day
Caiti wrote:But what i am wondering is how do i know i'm not getting "false negatives" when i start to add in foods while having success with the entocort treatment, as it tends to mask food reactions????
For some of us, Entocort doesn't stop the symptoms unless we also avoid our food sensitivities. For those who get good control with Entocort without making diet changes, there's no point in testing foods until the dosage is reduced to 1 pill per day, or one every other day. After that point, symptoms will usually begin to return, if there are any problem foods in the diet, so that's the time to track down and remove any remaining problem foods, and/or to begin testing the reintroduction of foods.
You're right of course, that unnecessarily dwelling on this disease can not only be depressing, but can make the symptoms seem worse. Knowledge is power, though, when it comes to kicking the disease to the curb, and getting our life back, and sometimes we have to play detective in order to track down the final pieces to the puzzle.
There is a very good chance that the Accutane may have initially set the stage for the development of your MC. We have several other members who also have a good reason to suspect it.
Thanks. I hope you have an enjoyable weekend, too.
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.
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CaitiCakes
- Posts: 9
- Joined: Thu Jul 25, 2013 5:14 pm
- Location: Westerly, RI
Caiti, I actually sent my sample to Enterolab for testing and everything came back VERY LOW. After initially feeling thrilled, I realized that something was probably off, so I called the lab. The nurse said that I should be tested for IgA deficiency. So i asked my doc to run the blood test and low and behold, I am not only deficient in IgAs, but also some of my IgGs ( eye roll). What a waste of money!
So, I decided to take out gluten, dairy, and all fresh fruit and vegetables and nightshades ( and whole corn) to start. That was when I was taking Entocort. I definitely felt better and better. When I was down to 3 mg. a day, I realized I was reacting to soy and peanut butter... so legumes in general, so i then took that out of my diet also. After i was completely off of the drug, I started testing things back in. i can now eat raw vegetable and some salad. i can also eat some beans and potatoes. Fruit is still an isssue :(
At this point, i am not perfect.... but neither are my eating habits. It's a personal choice. I'm sure I would be great if I was very strict and my family didn't eat gluten, but they do. I eat out every once in a while. I eat dark chocolate sometimes ( soy), and I am still not sure of all my intolerances. However, I only go to the bathroom usually once in the morning and my gut is quiet and mostly comfortable most of the time. I can live with that. When I feel that my symptoms are getting a little worse, I revert back to what I think are my most safe foods ( protein and rice). I also take Allegra every day for histamine issues.
Does any of that help?
Leah
So, I decided to take out gluten, dairy, and all fresh fruit and vegetables and nightshades ( and whole corn) to start. That was when I was taking Entocort. I definitely felt better and better. When I was down to 3 mg. a day, I realized I was reacting to soy and peanut butter... so legumes in general, so i then took that out of my diet also. After i was completely off of the drug, I started testing things back in. i can now eat raw vegetable and some salad. i can also eat some beans and potatoes. Fruit is still an isssue :(
At this point, i am not perfect.... but neither are my eating habits. It's a personal choice. I'm sure I would be great if I was very strict and my family didn't eat gluten, but they do. I eat out every once in a while. I eat dark chocolate sometimes ( soy), and I am still not sure of all my intolerances. However, I only go to the bathroom usually once in the morning and my gut is quiet and mostly comfortable most of the time. I can live with that. When I feel that my symptoms are getting a little worse, I revert back to what I think are my most safe foods ( protein and rice). I also take Allegra every day for histamine issues.
Does any of that help?
Leah
Welcome Caiti!
I second the advice that you eliminate peanut butter and switch to almond or cashew butter. Also be weary of probiotics. I know they are great in theory, but many of us with MC react badly to them. I took a multi-strain formula once and had insane, fast-transit watery D for 5 days until I stopped it. Try dairy-free formulas with only a few strains and only buy starter packs until you know they agree with you. Culturelle is a widely-used probiotic for many with MC.
I second the advice that you eliminate peanut butter and switch to almond or cashew butter. Also be weary of probiotics. I know they are great in theory, but many of us with MC react badly to them. I took a multi-strain formula once and had insane, fast-transit watery D for 5 days until I stopped it. Try dairy-free formulas with only a few strains and only buy starter packs until you know they agree with you. Culturelle is a widely-used probiotic for many with MC.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone