Hi! I just joined this group and I'm so glad I have found it. I'm from Houston, TX and I was just diagnosed back in July with Lymphocytic colitis. This is how it started.
Over the last 2 years, I had been getting some bloating with abdominal/gas pains. It never lasted long and I thought "oh no big deal....just getting older and need to quit binging on junk food". Then it became more frequent, even waking up in the middle of the night with nausea. In March, 2012 I went to my cardiologist for a checkup as I have tachycardia. They said everything was fine but they put me on a beta blocker called Troprol XL. Well 10 days into that I got diarrhea and it wouldn't go away. So got off the drug, system got back to normal, then doc put me on another beta blocker....same thing happened again. They tried me on 2 others only having the same results....diarrhea every day. I finally got off the beta blocker for good on May 21, but the diarrhea persisted and persisted. So cardiologist wanted to do bloodwork for my electrolytes and decided to check me for Celiac disease (bless that doctor). Well my bloodwork came back showing high antibodies for Gliaden and anti-tissue transglutamise (sp?) were high as well. So he sent me to a GI doctor. I ended up having a colonoscopy/endoscopy on June 28th. Results were Lymphocytic Colitis but duodenum was normal....no Celiac disease. Though I'm still wondering if I have latent Celiac. I have been GF since July 1. My pain is all gone now but I do get occasional bloating. I also have no more nausea. But the D persisted and still is today though usually 1 - 3 times a day. I have limited my dairy but thinking I may need to go 100% dairy free after reading many posts on this forum. I was put on Asacol last week....just started taking the full dose yesterday. It's definitely helping but won't know for sure for the next couple of weeks. I'm trying to go grain free but it's very hard for me. I've lost weight and I'm skinny and can't afford to lose anymore. I've read about the SCD and GAP diets but they sound horrifying the first few weeks and very time consuming. Here are a few things I was wondering about:
1. I have read that rice is easily digestible; however, according to the SCD/GAPS people, rice should be avoided as the pathogens in the gut feed on these carbohydrates and makes inflammation worse. However, I've read here that people do fine with rice. Also read that any starch will feed on this bad bacteria and all grains need to be avoided. Any comments on that?
2. Has anyone had success with S. Boulardii? I hear it can help with the D really well. What probiotics should I take?
3. I have read that taking fish oil greatly reduces inflammation and this could be a good supplement to take. Any thoughts on this?
Luckily I'm having no problems with the Asacol but not happy with taking meds. Just was so worried about losing more weight that I got desperate. These are the meds that I'm currently taking:
Amitriptyline - taken for many, many years.
Chlordiazepoxide (Librium) many years.
Kariva birth control
Armour Thyroid - 2 years.
I will never take another beta blocker again.
Any advice?
Just diagnosed with LC!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Welcome to our internet family. Yes, beta blockers are known triggers for MC. (Obviously that wasn't known by your doctor, though). Another common drug trigger for the disease is amitriptyline and all SSRIs and probably all SNRIs. Contraceptives trigger MC for many patients, and so does HRT.
A positive blood test for anti-gliadin antibodies and a positive TTG result are proof of celiac disease, despite a lack of confirmation by small intestinal biopsy. That means that your small intestinal damage level was Marsh 1 (which is not considered proof of celiac disease), but Marsh 1 is the first stage in the progression to Marsh 4, which involves villus atrophy.
To progress from Marsh 1 to Marsh 4 often requires years of additional damage to your small intestine. That's why the average length of time to receive a celiac diagnosis after the first symptoms is currently nine and a half years in this country. Virtually no one tests positive to both blood tests unless they actually have celiac disease, so your doctor just doesn't recognize celiac disease when he sees it. Most doctors are very poor at diagnosing celiac disease, unfortunately.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. Yes, beta blockers are known triggers for MC. (Obviously that wasn't known by your doctor, though). Another common drug trigger for the disease is amitriptyline and all SSRIs and probably all SNRIs. Contraceptives trigger MC for many patients, and so does HRT.
A positive blood test for anti-gliadin antibodies and a positive TTG result are proof of celiac disease, despite a lack of confirmation by small intestinal biopsy. That means that your small intestinal damage level was Marsh 1 (which is not considered proof of celiac disease), but Marsh 1 is the first stage in the progression to Marsh 4, which involves villus atrophy.
To progress from Marsh 1 to Marsh 4 often requires years of additional damage to your small intestine. That's why the average length of time to receive a celiac diagnosis after the first symptoms is currently nine and a half years in this country. Virtually no one tests positive to both blood tests unless they actually have celiac disease, so your doctor just doesn't recognize celiac disease when he sees it. Most doctors are very poor at diagnosing celiac disease, unfortunately.
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.
Welcome tiras. As you could probably tell, Tex is an expert and is currently writing a book on MC. Lots of great info comes from him. Actually lots of good info comes from us all. The thing is is that we are all different with what we can and can not eat and how fast we heal when we make the diet changes necessary. You didn't say whether you are still having D and how often.
When it comes to food, you obviously should never eat Gluten. Most of us have to stay away from dairy also. Many of us can't have soy and some also can't eat eggs. Those are the main "inflammation makers". Then there are many foods that are "irritants" that are hard to digest when your gut is inflamed. Until you get some major healing under your belt, you may want to stay away from RAW fruits and veggies ( no salad), beans and legumes, spicy peppery things, and for me, I had to give up tomato products too. Keep in mind that once you feel like you are somewhat healed , then you can test each one of these "irritants " again and see what happens.
I eat rice and rice products with no problems and I can also eat corn products ( but no whole corn). Some people here can not.
I do take fish oil
There is a lab that you can send a stool sample to to see what you are intolerant to. It's called Enterolab. Check out their site. If you can't afford it, then the easiest way to feel better fast is to limit your diet to protein and well cooked veggies for a while and then add one thing in at a time o test it out.
Read as much as you can from this forum and ask what ever you need to.
Leah
When it comes to food, you obviously should never eat Gluten. Most of us have to stay away from dairy also. Many of us can't have soy and some also can't eat eggs. Those are the main "inflammation makers". Then there are many foods that are "irritants" that are hard to digest when your gut is inflamed. Until you get some major healing under your belt, you may want to stay away from RAW fruits and veggies ( no salad), beans and legumes, spicy peppery things, and for me, I had to give up tomato products too. Keep in mind that once you feel like you are somewhat healed , then you can test each one of these "irritants " again and see what happens.
I eat rice and rice products with no problems and I can also eat corn products ( but no whole corn). Some people here can not.
I do take fish oil
There is a lab that you can send a stool sample to to see what you are intolerant to. It's called Enterolab. Check out their site. If you can't afford it, then the easiest way to feel better fast is to limit your diet to protein and well cooked veggies for a while and then add one thing in at a time o test it out.
Read as much as you can from this forum and ask what ever you need to.
Leah
Hi Tiras,
Welcome!
1. I have the SCD book butt the diet seemed way too complicated plus most of us should stay away from the raw fruits in SCD and the yogurt in SCD. Early on think a lot of protein, overcooked veggies,
sweet potato, rice or potato, fruit in extreme moderation--maybe stay away from it for awhile and then only rarely have canned fruit or cooked fruit.
2. Probiotics were very problematic for me early on. Now that I'm heading into remission I'm using culturelle.
3. Rice--yes I ate a fair amount of rice early on in healing although I tend to do better limiting rice. (I had to eat something.)
4. Chicken soup (homemade GF) and chicken broth are also good for us early on.
Brandy
Welcome!
1. I have the SCD book butt the diet seemed way too complicated plus most of us should stay away from the raw fruits in SCD and the yogurt in SCD. Early on think a lot of protein, overcooked veggies,
sweet potato, rice or potato, fruit in extreme moderation--maybe stay away from it for awhile and then only rarely have canned fruit or cooked fruit.
2. Probiotics were very problematic for me early on. Now that I'm heading into remission I'm using culturelle.
3. Rice--yes I ate a fair amount of rice early on in healing although I tend to do better limiting rice. (I had to eat something.)
4. Chicken soup (homemade GF) and chicken broth are also good for us early on.
Brandy
Welcome Tiras!
1. Regarding rice and grains, most here believe being largely grain-free is probably ideal, but it's hard to put in practice when veggies can be so rough on the system. So most of us eat rice and a few other grains. Potatoes, sweet potatoes and squashes are a well-tolerated starch alternative.
2. I am a big believer in probiotics. I just bought some Jarrow brand S. Boulardii. Haven't started it yet. I normally take Culturelle, which is also diary-free. I had a BAD experience with a multi-strain probiotic, so just get one that agrees with you. It might take some trial and error.
3. I take fish oil and turmeric/curcumin for inflammation. Vitamin D3 is probably the most important supplement we all take. My D level was 17 when I was diagnosed, and it should be 40 or above! Some people can;t tolerate fish oil or some of the ingredients in the capsules. Avoid supplements that contain soy.
1. Regarding rice and grains, most here believe being largely grain-free is probably ideal, but it's hard to put in practice when veggies can be so rough on the system. So most of us eat rice and a few other grains. Potatoes, sweet potatoes and squashes are a well-tolerated starch alternative.
2. I am a big believer in probiotics. I just bought some Jarrow brand S. Boulardii. Haven't started it yet. I normally take Culturelle, which is also diary-free. I had a BAD experience with a multi-strain probiotic, so just get one that agrees with you. It might take some trial and error.
3. I take fish oil and turmeric/curcumin for inflammation. Vitamin D3 is probably the most important supplement we all take. My D level was 17 when I was diagnosed, and it should be 40 or above! Some people can;t tolerate fish oil or some of the ingredients in the capsules. Avoid supplements that contain soy.
Thank you all so much! I'm a little overwhelmed right now.
Leah....I have D 1 to 3 times a day but had a little more before I went GF. So that has gotten better but not gone away. If I take Imodium it'll knock it out for a couple of days. I just had 1 D today so today is a good day. Every now and then I'll have a normal BM. I'm trying to go DF now. But OMG....no soy! I just had soy yogurt today but so far so good.
Thanks so much for all the advice. I don't think I have a problem with rice but who knows. And I've been eating lots of salads....good grief....my list of foods is dwindling. Glad to know I can some other route rather than the "difficult" SCD route. The first few weeks on that would kill me.
I'm blown away by what Tex said about Amitriptyline. My cardiologist just recently wanted to up my dose as he felt it would get rid of the diarrhea!! I can't get off the stuff as it will make me sick and give me diarrhea. So since it looks like the beta blockers triggered this mess, I will continue to take the Amitriptlyline for now. Getting off that stuff will definitely set me back.
As for fish oil and probiotics, I suppose I should hold off till my gut heals? I just hate this disease! So sad right now. I can't lose anymore weight. I will stay on Asacol till I gain it back! Hopefully!
Leah....I have D 1 to 3 times a day but had a little more before I went GF. So that has gotten better but not gone away. If I take Imodium it'll knock it out for a couple of days. I just had 1 D today so today is a good day. Every now and then I'll have a normal BM. I'm trying to go DF now. But OMG....no soy! I just had soy yogurt today but so far so good.
Thanks so much for all the advice. I don't think I have a problem with rice but who knows. And I've been eating lots of salads....good grief....my list of foods is dwindling. Glad to know I can some other route rather than the "difficult" SCD route. The first few weeks on that would kill me.
I'm blown away by what Tex said about Amitriptyline. My cardiologist just recently wanted to up my dose as he felt it would get rid of the diarrhea!! I can't get off the stuff as it will make me sick and give me diarrhea. So since it looks like the beta blockers triggered this mess, I will continue to take the Amitriptlyline for now. Getting off that stuff will definitely set me back.
As for fish oil and probiotics, I suppose I should hold off till my gut heals? I just hate this disease! So sad right now. I can't lose anymore weight. I will stay on Asacol till I gain it back! Hopefully!
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Christine.
- Gentoo Penguin
- Posts: 260
- Joined: Mon Feb 20, 2012 1:15 pm
Hi Tiras
I took Asacol for about 2 months when I was first diagnosed. It did nothing, as far as I could tell. I am dairy, egg and soy free as well as gluten free and have My LC controlled with diet alone. Some of us can't do that and use a steroid that specifically targets the colon. I wish you a warm welcome and believe me, I trust the potty people here to offer the BEST advice. There seem to be lots of the group here from Texas. Maybe it is in the water. Feel free to ask anything.
Christine
I took Asacol for about 2 months when I was first diagnosed. It did nothing, as far as I could tell. I am dairy, egg and soy free as well as gluten free and have My LC controlled with diet alone. Some of us can't do that and use a steroid that specifically targets the colon. I wish you a warm welcome and believe me, I trust the potty people here to offer the BEST advice. There seem to be lots of the group here from Texas. Maybe it is in the water. Feel free to ask anything.
Christine
Tiras,
Not everyone who has MC is sensitive to amitriptyline -- it affects only a percentage of us. It is true that for some individuals who are not sensitive to drugs in that class, antidepressants can sometimes suppress the symptoms of MC due to the fact that chronic stress is a trigger for MC.
It is the lactose in Asacol that causes problems for some members who are sensitive to casein. Pharmaceutical grade lactose is supposed to be casein-free, but apparently the lactose used to manufacture Asacol is not up to that standard, because many of us react adversely to it. Also, for anyone who is sensitive to NSAIDs (which includes many of us), mesalamine (the active ingredient in Asacol) triggers the production of leukotrienes (which is an inflammation modulator). Here's a reference on that:
We all have to customize our treatment to fit our own personal situation, and to fit our response to diet and drugs. There is no one-size-fits-all treatment, unfortunately.
Tex
Not everyone who has MC is sensitive to amitriptyline -- it affects only a percentage of us. It is true that for some individuals who are not sensitive to drugs in that class, antidepressants can sometimes suppress the symptoms of MC due to the fact that chronic stress is a trigger for MC.
It is the lactose in Asacol that causes problems for some members who are sensitive to casein. Pharmaceutical grade lactose is supposed to be casein-free, but apparently the lactose used to manufacture Asacol is not up to that standard, because many of us react adversely to it. Also, for anyone who is sensitive to NSAIDs (which includes many of us), mesalamine (the active ingredient in Asacol) triggers the production of leukotrienes (which is an inflammation modulator). Here's a reference on that:
http://www.nejm.org/doi/full/10.1056/NE ... 3263381320Although mesalamine inhibits both lipoxygenase and cyclooxygenase in vitro (and should decrease the production of both leukotrienes and prostaglandins), clinical manifestations and results of fecal eicosanoid analysis in our patient suggest that this drug may stimulate leukotriene synthesis as do analgesic NSAIDs and, in turn, lead to diarrhea or intestinal inflammation (or both) in patients with inflammatory bowel disease.
We all have to customize our treatment to fit our own personal situation, and to fit our response to diet and drugs. There is no one-size-fits-all treatment, unfortunately.
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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Christine.
- Gentoo Penguin
- Posts: 260
- Joined: Mon Feb 20, 2012 1:15 pm
I eat rice and corn chex in all flavors, and I have g/f cornflakes. I eat this with almond milk. I seem to remember that cream of rice is a g/f hot cereal.
For a treat I will have bacon or even some sausage and potatoes. Of course I like leftovers from dinner or even rice and sautéed tomatoes. I also have a bag of paleo muffins in the freezer now so I can pull them out if all else fails.
Christine
For a treat I will have bacon or even some sausage and potatoes. Of course I like leftovers from dinner or even rice and sautéed tomatoes. I also have a bag of paleo muffins in the freezer now so I can pull them out if all else fails.
Christine
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Tiras
firstly welcome- but sorry you had to find us.
i transitioned from the amitripyline to effexor and found things much better, not a huge change poop wise, but generally Effexor is better.
Food wise - there is no meal or ingredients that are guaranteed to work, we are all different, (sucks i know! ) it pays to spend a bit of time figuring out what ingredients settle best for you,
my suggestion is figure out what foods settle best, let the gut heal a bit, before you try too many supplements.
breakfast suggestions, mindful that I am Gluten, Soy, Lactose Free eating plan;
precooked veges warmed with poached eggs or with other suitable protein
rice protein shake based on coconut milk
my meat and vege stew
I work full time, so having a good protein rich breakfast definately helps.
there is lots of info on this site, and it can be a bit overwhelming at first. take a few deep breathes, relax and know there are loads of wonderful people here more than willing to help!
firstly welcome- but sorry you had to find us.
i transitioned from the amitripyline to effexor and found things much better, not a huge change poop wise, but generally Effexor is better.
Food wise - there is no meal or ingredients that are guaranteed to work, we are all different, (sucks i know! ) it pays to spend a bit of time figuring out what ingredients settle best for you,
my suggestion is figure out what foods settle best, let the gut heal a bit, before you try too many supplements.
breakfast suggestions, mindful that I am Gluten, Soy, Lactose Free eating plan;
precooked veges warmed with poached eggs or with other suitable protein
rice protein shake based on coconut milk
my meat and vege stew
I work full time, so having a good protein rich breakfast definately helps.
there is lots of info on this site, and it can be a bit overwhelming at first. take a few deep breathes, relax and know there are loads of wonderful people here more than willing to help!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama