Hello everyone,
I am so glad to have found this forum, I really feel hopeful that I can finally figure out what I need to do to get into remission. I have felt so alone in this pursuit for so long, it’s great to find such a caring and knowledgeable group that have real life experience in treating mc! Hers my story… I have had chronic diarrhea around 15 years, which I controlled with Imodium for the most part. I had a lot of gas and bloating, basically just lived with it. In 2015, I was diagnosed with hashimotos by an endocrinologist, and In 2016, I decided i couldn’t live on Imodium forever,( and it didn’t stop the diarrhea, just helped me get through the day). I became convinced that it was gluten, so I went on a strict gf, df, and sugar free diet for a month. I felt so much better in my joint pain, allergy reactions, had been using a Zyrtec once a day for years, and was able to stop them. Felt great except for the diarrhea, was total water. I bought so many supplements , and nothing worked. I saw a naturopathic doctor, he did blood allergy testing, worst offenders were garlic, almonds and walnuts, slight reaction to eggs, but nothing else stood out. I also did a genetic test for gluten sensitivity and found I have two genes for HQ 3, so I definitely have the genes. I got discouraged and basically gave up until 2017, finally agreed to have a colonoscopy and they said it was normal, but my gall bladder was bad so I had it removed. Finally this year I went to see a GI, and he did another colonoscopy because they didn’t take biopsies at the first one., came back LC. So after 3 years of searching the net, I finally had a diagnosis, but wasn’t excited about using the drugs. In April I agreed to try balsalazide, eight pills a day. It has slowly gotten better, but I hadn’t tried any diet modifications. Probably 60 percent better, not WD. Believe me, I know gluten and all the other food intolerances are hindering my remission, so after spending the last couple of weeks reading here, I am trying the elimination diet. I k Ow it did t work the first time because I wasn’t limited enough. Every protein shake I drank was very bad, every time I had coconut oil, it was bad also. I started last week just eating turkey and rice, and it turned straight to WD! I am sure that I can’t handle much fat, but what protein sources can I have besides white chicken breast? Does anyone get better in their malabsorption of fat? Or is that forever? Is lamb lower in fat? And I have felt for the last few years, That I react to chicken, that’s why I started with turkey. I am definitely not disputing the experiences of all of you with this disease, I just need some direction in where to go from here. When I eat whatever I want, the D is better, but I hurt all over, that’s what started me searching again. I have ordered the magnesium, and have restarted my vitamin d3, 5000. I have pulled my vitamin d levels for years at the annual health fair, and they are very low. I also ordered the a1 and c1 tests from EnteroLab. I hope that will give me some insight as to what I can eat. Has anyone had this type of experience? Any advice will be greatly appreciated! Also, if you have very bad WD, can u send that into EnteroLab? So sorry for the long post, reading all the posts I have read so far, makes me understand that this is a life long disease. Thank you so much for creating this forum, it is a real godsend!
New member needs advice
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Sam,
Welcome to the group. After so many years of reacting, you are probably sensitive to many foods. For example, you might be sensitive to all grains, including rice. You desperately need those EnteroLab results to allow you to select foods that you can use for a safe recovery diet. Trust me, Enterolab has seen diarrhea samples before. Watery samples should still work, provided there is at least some solid or semi-solid material that can be filtered or centrifuged out of the sample.
Turkey and lamb should be safe, but if you wind up having to eat a meat-only diet, you'll need to eat fatty meat in order to prevent what's called rabbit starvation or protein poisoning. Venison, duck, goose, pheasant, quail, emu, rabbit, or any other wild type meat should be safe. Except for bison — these days all bison have domestic cattle in their DNA due to cross-breeding over the decades. Sweet potatoes, cauliflower, and maybe red or yellow potatoes should work.
Your gallbladder probably didn't need to be removed. Gallbladder inflammation is very common with MC. It usually resolves after the MC is controlled. When you had a gallbladder, it only dribbled bile into your duodenum as needed, to emulsify fats. Without a gallbladder, your liver is dribbling bile into your duodenum constantly. That can cause an issue known as bile acid malabsorption (BAM). When the excess bile gets to your colon, it causes diarrhea.
For details on this, please see my article at the link below:
http://www.waynepersky.com/2017/09/27/d ... -cortisol/
Have you ever tried a bile acid sequestrant (cholestyramine)? When your gallbladder was removed, this should have been suggested to you because diarrhea becomes a problem for many gallbladder surgery patients. Bile acid sequestrants are a relatively safe medication to take (their only caveat is that you have to take them apart from other meds or vitamin supplements, because they will make them unavailable for absorption also). They're available by subscription only and it appears that almost all of us require the Regular Sandoz formulation. The Lite version rarely works and generic versions rarely work for us ("us" referring to MC patients). It may take a while to find the right dose — that has to be determined by trial and error. Two packets per day is a good place to start, and you can adjust up or down from there, as needed.
But that doesn't address the inflammation that perpetuates MC, of course. Only proper diet changes can do that. Cholestyramine might be needed in addition to the diet changes, however.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. After so many years of reacting, you are probably sensitive to many foods. For example, you might be sensitive to all grains, including rice. You desperately need those EnteroLab results to allow you to select foods that you can use for a safe recovery diet. Trust me, Enterolab has seen diarrhea samples before. Watery samples should still work, provided there is at least some solid or semi-solid material that can be filtered or centrifuged out of the sample.
Turkey and lamb should be safe, but if you wind up having to eat a meat-only diet, you'll need to eat fatty meat in order to prevent what's called rabbit starvation or protein poisoning. Venison, duck, goose, pheasant, quail, emu, rabbit, or any other wild type meat should be safe. Except for bison — these days all bison have domestic cattle in their DNA due to cross-breeding over the decades. Sweet potatoes, cauliflower, and maybe red or yellow potatoes should work.
Your gallbladder probably didn't need to be removed. Gallbladder inflammation is very common with MC. It usually resolves after the MC is controlled. When you had a gallbladder, it only dribbled bile into your duodenum as needed, to emulsify fats. Without a gallbladder, your liver is dribbling bile into your duodenum constantly. That can cause an issue known as bile acid malabsorption (BAM). When the excess bile gets to your colon, it causes diarrhea.
For details on this, please see my article at the link below:
http://www.waynepersky.com/2017/09/27/d ... -cortisol/
Have you ever tried a bile acid sequestrant (cholestyramine)? When your gallbladder was removed, this should have been suggested to you because diarrhea becomes a problem for many gallbladder surgery patients. Bile acid sequestrants are a relatively safe medication to take (their only caveat is that you have to take them apart from other meds or vitamin supplements, because they will make them unavailable for absorption also). They're available by subscription only and it appears that almost all of us require the Regular Sandoz formulation. The Lite version rarely works and generic versions rarely work for us ("us" referring to MC patients). It may take a while to find the right dose — that has to be determined by trial and error. Two packets per day is a good place to start, and you can adjust up or down from there, as needed.
But that doesn't address the inflammation that perpetuates MC, of course. Only proper diet changes can do that. Cholestyramine might be needed in addition to the diet changes, however.
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.
Tex,
Thank you so much for promptly replying! I had 30 stones in my gallbladder, so I think it did need to be removed, but I have questioned that since I did it also. I had the same fatty diarrhea before the removal, as after. She did prescribe the cholestyramine, and I looked at it and it is the sandoz brand. I used it before the removal, changed nothing, and then I tried it one time after the removal and I had mild stomach pain. Also, after the removal I tried Imodium twice and both times I had the worst pain I’ve ever had, like it blew up my stomach with gas and wouldn’t go away. So I am scared to try imodium now. Maybe I did not try enough of the cholestyramine, I will look into it again! I just don’t understand how I will be able to eat fatty meat, if this is the diarrhea I will get? I think I react to everything that I’m supposed to eat, and foods that are bad and cause the joint pain, don’t bother me as much, which makes no sense, since I know gluten is a huge contributor. I don’t typically have pain at all, just diarrhea. It has gotten less urgent over the years, until I tried to just eat the few foods I was trying. Thanks again for your input, I am hopeful that with the testing at the lab, it will give me greater insight into my intolerances. One question, I ordered the remag, because it is stronger and supposedly won’t cause a laxative effect, unless I have an excess of magnesium. I read where you said it could be trickier to deal with. I was wondering what I need to watch for?
Thanks again,
Sam
Thank you so much for promptly replying! I had 30 stones in my gallbladder, so I think it did need to be removed, but I have questioned that since I did it also. I had the same fatty diarrhea before the removal, as after. She did prescribe the cholestyramine, and I looked at it and it is the sandoz brand. I used it before the removal, changed nothing, and then I tried it one time after the removal and I had mild stomach pain. Also, after the removal I tried Imodium twice and both times I had the worst pain I’ve ever had, like it blew up my stomach with gas and wouldn’t go away. So I am scared to try imodium now. Maybe I did not try enough of the cholestyramine, I will look into it again! I just don’t understand how I will be able to eat fatty meat, if this is the diarrhea I will get? I think I react to everything that I’m supposed to eat, and foods that are bad and cause the joint pain, don’t bother me as much, which makes no sense, since I know gluten is a huge contributor. I don’t typically have pain at all, just diarrhea. It has gotten less urgent over the years, until I tried to just eat the few foods I was trying. Thanks again for your input, I am hopeful that with the testing at the lab, it will give me greater insight into my intolerances. One question, I ordered the remag, because it is stronger and supposedly won’t cause a laxative effect, unless I have an excess of magnesium. I read where you said it could be trickier to deal with. I was wondering what I need to watch for?
Thanks again,
Sam
Digestion of gluten and casein results in peptides known as gliadorphins and casomorphins, which are addictive in the brain, similiar to morphine. That's why you think you "feel better" when you eat those foods. the effect is stronger for some individuals, and they actually have withdrawal symptoms when avoiding them.
Remag is very potent and it can cause diarrhea for some individuals. It's usually better when used after remission is achieved. You might be able to use it topically, while still in recovery, but everyone is different. That's just my observation from other's experience. I've never used it.
Tex
Remag is very potent and it can cause diarrhea for some individuals. It's usually better when used after remission is achieved. You might be able to use it topically, while still in recovery, but everyone is different. That's just my observation from other's experience. I've never used it.
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.
Thanks Tex!
I have a question about the cholestyramine, do I take it with food or not? I see some people take it two hours after they eat, but my directions say to take it with meals? I saw that maybe I didn’t try it long enough according to Erica’s post. She described what I’m having perfectly. I know it also has to be taken away from my other meds, exactly how long is that? Thanks again for the help!
I have a question about the cholestyramine, do I take it with food or not? I see some people take it two hours after they eat, but my directions say to take it with meals? I saw that maybe I didn’t try it long enough according to Erica’s post. She described what I’m having perfectly. I know it also has to be taken away from my other meds, exactly how long is that? Thanks again for the help!
I thought it was supposed to be taken before meals, but I've never used it, so I'm not familiar with the label. If your doctor told you to take it with meals maybe he or she knows that will make it work better (or maybe he or she didn't read the label). Anytime you have questions about taking a particular medication, your best source of information is your pharmacist — they're much better at keeping up with the details of various medications than most MDs. And they're also much more qualified to discuss possible drug interactions. They can prevent a lot of bad drug reactions if patients will just mention which drugs they are already taking, and ask about possible problems whenever filling a new prescription for the first time.
Cholestyramine should be taken either two hours after, or four to six hours before taking any other medication or supplement.
Sometimes it takes a lot of experimentation to find the best dose. When searching for the correct dose, if a dose seems to help, just not enough, you probably need more. If a dose causes constipation or severe cramps, it's probably too much. Someone who actually uses it can give you much better advice on timing than I can. Hopefully, someone who uses it will respond.
Tex
Cholestyramine should be taken either two hours after, or four to six hours before taking any other medication or supplement.
Sometimes it takes a lot of experimentation to find the best dose. When searching for the correct dose, if a dose seems to help, just not enough, you probably need more. If a dose causes constipation or severe cramps, it's probably too much. Someone who actually uses it can give you much better advice on timing than I can. Hopefully, someone who uses it will respond.
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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jessica329
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- Location: CT
Cholestyramine takes time and yes, Tex is right. You have to experiment with the dose. I take it 3-3 1/2 hours after dinner. I take vitamins in the AM and afternoon and then a couple with dinner so the choestyramine won't interfere.
I started with 2 tsp which is a little more than 1/2 a packet. I do take the kind with sugar instead of the lite version. Some nights I take a full packet, depending on what I've eaten.
I mix it with a smaller amount of hot water, stir well, and drink it through a straw so that it won't hurt my teeth, if that indeed might happen. I found straws that are biodegradable and can use the same one over and over when I rinse it out.
There are others who take more and some take it morning and night. Whatever works for you. It initially caused me to be gassey but that went away.
Good luck! You have lots of support here.
Susan
I started with 2 tsp which is a little more than 1/2 a packet. I do take the kind with sugar instead of the lite version. Some nights I take a full packet, depending on what I've eaten.
I mix it with a smaller amount of hot water, stir well, and drink it through a straw so that it won't hurt my teeth, if that indeed might happen. I found straws that are biodegradable and can use the same one over and over when I rinse it out.
There are others who take more and some take it morning and night. Whatever works for you. It initially caused me to be gassey but that went away.
Good luck! You have lots of support here.
Susan