I was on Budesonide for four days (couldn't tolerate it), then went on Pepto-Bismol for three months. Now I've been taking Cholestryamine for about a week and a half.
I just had repeat blood tests and my kidney function is abnormal, possibly from dehydration from the Cholestryamine? Even though I've been drinking lots of water, it is said to be a diuretic and is probably making me flush out a lot. I also had a significant drop in glucose (93 five months ago to 69). This may be a result of not getting certain hormones from my missed period? I've been eating some sugar and carbs daily so I'm surprised to see it drop that low. My thyroid function was also on the low side but still within normal range.
My pregnancy test was negative.
I still have D but it's usually only once a day, although that is pretty much how it's always been except for on really bad days then it's 4-5 times WD. I have been eating chicken, turkey, rice, red potatoes, sweet potatoes, zucchini, avocado (occasionally), gluten-free crackers, gluten-free cereal, gluten-free waffles, and peanut butter (occasionally).
I am considering going back on the Budesonide because it doesn't feel like the Cholestryamine is doing much for the inflammation, rather just slowing things down a bit, although I'm not really sure. I had bad side effects on the Budesonide but am thinking that maybe I just needed to give it a few more days for my body to get used to it.
I had thought too that I don't want to go on any oral contraception because it may make my LC worse or prevent remission. However, it will take me a long time to gain another 10 pounds in order to get my period back and I'm not sure how many more periods I can afford to skip. It's very hard to gain weight unless I can add more foods. I'm not sure if I should even be eating the avocado or peanut butter with the inflammation still there and those are really the foods that are probably helping me to not lose anymore.
Thank you very much for that info, Brandy!
Absence of Menstruation
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Wow, sometimes in life there is not a ton of good choices. I think most people can tolerate the almond butter.
I would not do peanut as it is related to the soy category. Compared to sugar, gluten, dairy, and soy the inflammation
factor (if any) will be a lot less.
I also had abysmal kidney tests....I have a thread on that. I was pushing stage 4 and doctors were acting like
I was going to kick off now I am in stage 2 normal. I was getting stage 4 scores by eating meatballs prior to the
lab work, dehydration, lifting heavy prior to lab work etc. Even though supposedly kidney scores can't
be improved I found that not to be the case. Dehydration from cholestyramine/summer heat would not surprise me.
Some other options to consider...pepto bismol protocol, I think you can find it on the John Hopkins website for MC
It is 6 or 8 pepto tablets for I think 6 or 8 weeks....google pepto bismol for MC to get the details. It works
for a lot of folks. Side effects for some can be tinnitis.
Maybe try Uceris in lieu of budesonide. Perhaps side effects not as bad. Uceris is a version of budesonide
that works a bit differently. A number of folks have had success with Uceris.
Budesonide...I was one who had side effects but got through them.
One thing JFR said that resounds with me. When you have multiple health situations getting MC under control
many times trumps everything. Frequently when getting MC under control everything else in your body improves.
Overall if you are having D once a day you are improving and doing a lot of things right.
Stress management is very key too.
I've done pepto, I've done cholysterimine, I've done budesonide, I have not done Uceris. It sounds like you
are doing a good job thinking things through. Sometimes it is tough to know which path to take.
I would not do peanut as it is related to the soy category. Compared to sugar, gluten, dairy, and soy the inflammation
factor (if any) will be a lot less.
I also had abysmal kidney tests....I have a thread on that. I was pushing stage 4 and doctors were acting like
I was going to kick off now I am in stage 2 normal. I was getting stage 4 scores by eating meatballs prior to the
lab work, dehydration, lifting heavy prior to lab work etc. Even though supposedly kidney scores can't
be improved I found that not to be the case. Dehydration from cholestyramine/summer heat would not surprise me.
Some other options to consider...pepto bismol protocol, I think you can find it on the John Hopkins website for MC
It is 6 or 8 pepto tablets for I think 6 or 8 weeks....google pepto bismol for MC to get the details. It works
for a lot of folks. Side effects for some can be tinnitis.
Maybe try Uceris in lieu of budesonide. Perhaps side effects not as bad. Uceris is a version of budesonide
that works a bit differently. A number of folks have had success with Uceris.
Budesonide...I was one who had side effects but got through them.
One thing JFR said that resounds with me. When you have multiple health situations getting MC under control
many times trumps everything. Frequently when getting MC under control everything else in your body improves.
Overall if you are having D once a day you are improving and doing a lot of things right.
Stress management is very key too.
I've done pepto, I've done cholysterimine, I've done budesonide, I have not done Uceris. It sounds like you
are doing a good job thinking things through. Sometimes it is tough to know which path to take.
I just read your food list. I'd temporarily eliminate the GF waffles, GF crackers and GF cereal and replace
them with rice, potatoes and sweet potatoes. For maximum weight gain eat a lot of rice, potatoes and sweet potatoes.
Cook rice, potatoes and sweet potatoes in big lots.
If you are having D, eliminate anything with an ingredient list. I think you should see some improvements and
pretty quickly. Once you get solid stool you can add back the GF products.
them with rice, potatoes and sweet potatoes. For maximum weight gain eat a lot of rice, potatoes and sweet potatoes.
Cook rice, potatoes and sweet potatoes in big lots.
If you are having D, eliminate anything with an ingredient list. I think you should see some improvements and
pretty quickly. Once you get solid stool you can add back the GF products.
Here's the problem with cholestyramine (as far as weight is concerned):
It sequesters the bile acids, which means that it also sequesters virtually all the fat that has been emulsified by the bile, and carries it into the toilet. Budesonide does pretty much the opposite. Research shows that cortisol controls the recycling of bile in the terminal ileum. That implies that budesonide will increase bile recycling (since budesonide is a corticosteroid). Doctors don't seem to recognize this, but I'm pretty sure that this is the reason why so many people gain weight while they're taking budesonide. IOW, in my opinion, the individuals who gain weight on budesonide probably do so because without it, they have bile acid malabsorption (BAM). (BAM also causes most fat to go straight to the toilet.)
Here's another twist to the kidney function issue:
I can tell you from experience that hypothyroid undertreatment can play havoc with your kidney function (regardless of what your TSH might show). (This is supported by published research.) My EGFR went down to 38 when my doctor cut my thyroid treatment in half (because I had a very low TSH). This caused me to develop an arrythmia, and about three weeks later, a stroke. (Published research shows that low kidney function can cause an arrythmia.) I believe a chronic magnesium deficiency (or way too much magnesium) can have a similar effect (on the kidneys). When my thyroid treatment was doubled (restored to the original amount, at my request), my EGFR went back up to over 60.
Tex
It sequesters the bile acids, which means that it also sequesters virtually all the fat that has been emulsified by the bile, and carries it into the toilet. Budesonide does pretty much the opposite. Research shows that cortisol controls the recycling of bile in the terminal ileum. That implies that budesonide will increase bile recycling (since budesonide is a corticosteroid). Doctors don't seem to recognize this, but I'm pretty sure that this is the reason why so many people gain weight while they're taking budesonide. IOW, in my opinion, the individuals who gain weight on budesonide probably do so because without it, they have bile acid malabsorption (BAM). (BAM also causes most fat to go straight to the toilet.)
Here's another twist to the kidney function issue:
I can tell you from experience that hypothyroid undertreatment can play havoc with your kidney function (regardless of what your TSH might show). (This is supported by published research.) My EGFR went down to 38 when my doctor cut my thyroid treatment in half (because I had a very low TSH). This caused me to develop an arrythmia, and about three weeks later, a stroke. (Published research shows that low kidney function can cause an arrythmia.) I believe a chronic magnesium deficiency (or way too much magnesium) can have a similar effect (on the kidneys). When my thyroid treatment was doubled (restored to the original amount, at my request), my EGFR went back up to over 60.
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.
I was actually thinking the same thing in regards to Cholestyramine. I almost seemed to be losing more weight after starting it. I really can't afford to lose any more so I may need to seek another treatment. My doctor prescribed Lialda (Mesalamine) pretty much as a last resort after I mentioned that there was sucrose, fructose, and artificial sweetener in my Cholestyramine packets. However, I'm a bit reluctant to try Lialda as I'm not sure about the side effects there. I'm wondering if going back on Budesonide would be better, especially if it may help to gain weight.
I did try Pepto for three months but would it be bad to go back on it? I have read that some doctors don't advise to stay on it for longer than 2 months because of some risks. My NP didn't seem to know either way (I believe she would've just left me on it indefinitely).
About the peanut butter... Is the Skippy Natural brand still considered soy? There is only palm oil in that one (no soybean oil).
I am also wondering if I can get away with only taking out my two biggest food sensitivities (gluten and soy). The others (milk, egg, and almond) were only +2 and oat, rice, and corn +1. I drink almond milk every day and it is all over the place in crackers, flours, and lots of gluten-free foods. I would also hate to give up rice since that has always been a "safe" food for me.
Thank you, Brandy, for the advice on what foods I should eat! I will cut out the GF products and stick to the whole foods if that will help me to gain weight. I just feel like I am always eating the same thing and keep trying to come up with something new, though there doesn't seem to be much else that seems safe. Even looking for gluten-free foods is so overwhelming because everything seems so expensive! And a lot is hard to find so it seems like they up the price on everything. I know I can add these in later but it's a bit depressing that it is what I have to look forward to.
Brandy, do you mind if I ask what treatment worked best for you?
I did try Pepto for three months but would it be bad to go back on it? I have read that some doctors don't advise to stay on it for longer than 2 months because of some risks. My NP didn't seem to know either way (I believe she would've just left me on it indefinitely).
About the peanut butter... Is the Skippy Natural brand still considered soy? There is only palm oil in that one (no soybean oil).
I am also wondering if I can get away with only taking out my two biggest food sensitivities (gluten and soy). The others (milk, egg, and almond) were only +2 and oat, rice, and corn +1. I drink almond milk every day and it is all over the place in crackers, flours, and lots of gluten-free foods. I would also hate to give up rice since that has always been a "safe" food for me.
Thank you, Brandy, for the advice on what foods I should eat! I will cut out the GF products and stick to the whole foods if that will help me to gain weight. I just feel like I am always eating the same thing and keep trying to come up with something new, though there doesn't seem to be much else that seems safe. Even looking for gluten-free foods is so overwhelming because everything seems so expensive! And a lot is hard to find so it seems like they up the price on everything. I know I can add these in later but it's a bit depressing that it is what I have to look forward to.
Brandy, do you mind if I ask what treatment worked best for you?
There's nothing wrong with eating the same foods every day, or even every meal, as long as the foods are safe for you. Many of us do that.
It sounds as though you were using the wrong brand of cholestyramine, anyway. The only one that seems to work for most people is the original Sandoz formulation. Virtually all of us react to artificial sweeteners, especially aspartame. Fructose is very difficult for us to digest when we're reacting.
Restarting a Pepto-Bismol treatment if you have recently completed a regimen using the full dose (8 tablets per day for 8 weeks), would be questionable, since avoiding neurological issues would depend on your body's ability to effectively clear it out of your system. The bismuth subsylicate can accumulate if it isn't cleared properly. On the other and, if you only used 3 or 4 tablets per day, then there's probably no reason why you can't repeat a Pepto treatment. But you need to use 8 tablets each day, for best effectiveness.
https://www.ncbi.nlm.nih.gov/pubmed/9428215
The trouble with all peanut butter (as far as MC is concerned), is that most people who react to soy, also react to legumes, and peanuts are a legume. Most of us use almond butter or cashew butter instead. Or sunflower butter. Most of us who are sensitive to almonds can tolerate almond milk, but I would avoid almond butter and products that contain almond flour, especially while trying to recover. If almonds are a problem for you, and you eat these products anyway, you may never recover. 2+ foods are usually a major problem, depending on your overall score on those 11 other antigenic foods. If it was over 11 or 12, you almost surely need to avoid them, at least while recovering. And always avoid oats. Rotate rice and corn.
It sounds as though you're eating commercially processed foods (baked goods). That's probably preventing you from recovering. Many of us can never reach remission unless we do all our own cooking. The fastest, surest route to recovery is based on only eating whole, safe foods, that we prepare ourselves. If you analyze the posts of all the people who join this forum and are unable to recover, despite years of trying, you will notice that they almost always refuse to give up processed foods.
Tex
It sounds as though you were using the wrong brand of cholestyramine, anyway. The only one that seems to work for most people is the original Sandoz formulation. Virtually all of us react to artificial sweeteners, especially aspartame. Fructose is very difficult for us to digest when we're reacting.
Restarting a Pepto-Bismol treatment if you have recently completed a regimen using the full dose (8 tablets per day for 8 weeks), would be questionable, since avoiding neurological issues would depend on your body's ability to effectively clear it out of your system. The bismuth subsylicate can accumulate if it isn't cleared properly. On the other and, if you only used 3 or 4 tablets per day, then there's probably no reason why you can't repeat a Pepto treatment. But you need to use 8 tablets each day, for best effectiveness.
https://www.ncbi.nlm.nih.gov/pubmed/9428215
The trouble with all peanut butter (as far as MC is concerned), is that most people who react to soy, also react to legumes, and peanuts are a legume. Most of us use almond butter or cashew butter instead. Or sunflower butter. Most of us who are sensitive to almonds can tolerate almond milk, but I would avoid almond butter and products that contain almond flour, especially while trying to recover. If almonds are a problem for you, and you eat these products anyway, you may never recover. 2+ foods are usually a major problem, depending on your overall score on those 11 other antigenic foods. If it was over 11 or 12, you almost surely need to avoid them, at least while recovering. And always avoid oats. Rotate rice and corn.
It sounds as though you're eating commercially processed foods (baked goods). That's probably preventing you from recovering. Many of us can never reach remission unless we do all our own cooking. The fastest, surest route to recovery is based on only eating whole, safe foods, that we prepare ourselves. If you analyze the posts of all the people who join this forum and are unable to recover, despite years of trying, you will notice that they almost always refuse to give up processed foods.
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.
I was using Questran. This is what my NP prescribed but I'm really have a tough time tolerating it, along with the added unsafe ingredients and weight loss that it seems to be worsening.
I was on the Pepto with taking two pills, three times daily, for almost three months. I wonder if that would still be too much for me to consider going back on it? I wasn't doing the diet at the time so I am wondering if I would have more success now that I am but not sure if it's too much buildup for my system. I had a terrible flare right after stopping it but this may just be because it was "masking" some of the inflammation and I just wasn't eating right. I will suggest taking it four times daily to my NP although, I hate to say it, I'm not really trusting what she is prescribing me now.
My total antigenic foods score was 13. Oat, rice, and corn, were +1 and Almond +2. I will try to avoid almond altogether and never ate much oats anyway (except for Cheerios, which are gluten-free, but I will cut this out of my diet). I just would hate to give up the rice. I wanted to be able to bake foods in the future (after healing) with almond flour but I will probably have to stick with cashew flour instead. It's just very expensive but I know my health is more important.
Also, do you think I would be able to bring back in commercially processed foods after I have reached remission or done some healing? If these don't cause any kind of immune reaction, would they still be safe later in life?
Thank you so much for your help, Tex! I would be totally lost without all this information.
I was on the Pepto with taking two pills, three times daily, for almost three months. I wonder if that would still be too much for me to consider going back on it? I wasn't doing the diet at the time so I am wondering if I would have more success now that I am but not sure if it's too much buildup for my system. I had a terrible flare right after stopping it but this may just be because it was "masking" some of the inflammation and I just wasn't eating right. I will suggest taking it four times daily to my NP although, I hate to say it, I'm not really trusting what she is prescribing me now.
My total antigenic foods score was 13. Oat, rice, and corn, were +1 and Almond +2. I will try to avoid almond altogether and never ate much oats anyway (except for Cheerios, which are gluten-free, but I will cut this out of my diet). I just would hate to give up the rice. I wanted to be able to bake foods in the future (after healing) with almond flour but I will probably have to stick with cashew flour instead. It's just very expensive but I know my health is more important.
Also, do you think I would be able to bring back in commercially processed foods after I have reached remission or done some healing? If these don't cause any kind of immune reaction, would they still be safe later in life?
Thank you so much for your help, Tex! I would be totally lost without all this information.
Hi,
First, you don't need a doc's OK to use the Pepto treatment. Most docs don't really know how to use it, anyway. If your doc didn't tell you to follow a GF diet while you were taking Pepto, then he or she doesn't understand how to use it to treat MC. If you weren't experiencing any neurological symptoms that could be attributed to the Pepto (and not MC) by the time you ended the previous treatment, then you could probably safely do the treatment again. But for goodness sake, do it right this time — stick with the GF diet during the treatment. Yes, the Pepto treatment was designed to be used with a GF diet. It's proven success rate is more than 85 % with the diet.
Definitely postpone baking until after you are in remission. After you're in remission, you can experiment with all sorts of foods, and it will be much easier to tell if they're a problem. But please get to remission first, because experimenting now will just postpone or prevent remission.
Sure, you will probably be able to tolerate a lot of processed foods after you have been in remission for a while. But while we are reacting, our immune system is hypersensitive and it will react to ingredients (and combinations of ingredients) that it will tolerate once it has settled down to a more normal inflammation level. You will definitely have a future in baking delicious recipes again, you just need to postpone that for a while until you get the MC under control and you understand better what your immune system will tolerate and what it won't.
Also, bear in mind that these days manufacturers source ingredients from all over the world, usually from the lowest bidder. They usually take the word of the supplier that the ingredients meet the specks. When the supplier slips up, and the ingredient is cross-contaminated, most people will never notice. But we will, if we're using that product. Research shows that a lot of so-called GF foods are not. Please read this previous post.
Here's Why We Recommend Against Eating Out When Recovering
Restaurant food cross-contamination usually occurs because of workplace human error and misunderstanding. The cross-contamination rate of prepackaged foods is generally much lower than restaurant food, but it's still a problem for us.
Tex
First, you don't need a doc's OK to use the Pepto treatment. Most docs don't really know how to use it, anyway. If your doc didn't tell you to follow a GF diet while you were taking Pepto, then he or she doesn't understand how to use it to treat MC. If you weren't experiencing any neurological symptoms that could be attributed to the Pepto (and not MC) by the time you ended the previous treatment, then you could probably safely do the treatment again. But for goodness sake, do it right this time — stick with the GF diet during the treatment. Yes, the Pepto treatment was designed to be used with a GF diet. It's proven success rate is more than 85 % with the diet.
Definitely postpone baking until after you are in remission. After you're in remission, you can experiment with all sorts of foods, and it will be much easier to tell if they're a problem. But please get to remission first, because experimenting now will just postpone or prevent remission.
Sure, you will probably be able to tolerate a lot of processed foods after you have been in remission for a while. But while we are reacting, our immune system is hypersensitive and it will react to ingredients (and combinations of ingredients) that it will tolerate once it has settled down to a more normal inflammation level. You will definitely have a future in baking delicious recipes again, you just need to postpone that for a while until you get the MC under control and you understand better what your immune system will tolerate and what it won't.
Also, bear in mind that these days manufacturers source ingredients from all over the world, usually from the lowest bidder. They usually take the word of the supplier that the ingredients meet the specks. When the supplier slips up, and the ingredient is cross-contaminated, most people will never notice. But we will, if we're using that product. Research shows that a lot of so-called GF foods are not. Please read this previous post.
Here's Why We Recommend Against Eating Out When Recovering
Restaurant food cross-contamination usually occurs because of workplace human error and misunderstanding. The cross-contamination rate of prepackaged foods is generally much lower than restaurant food, but it's still a problem for us.
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.
Well the Questran (Cholestyramine) didn't work out so well for me. I ended up going to the ER yesterday because, after 1.5 weeks of being on it, the side effects (dizziness, fatigue, headache) worsened and my labs showed my kidney function deteriorated and my glucose levels were significantly dropping (down to 58) after eating a meal. Apparently, something was going on with my pancreas that was causing abnormal insulin and I was drinking plenty of water so the kidney function was a little mystery. Bare in mind, I am very underweight so this certainly doesn't help my body's ability to tolerate these meds. However, between this, it causing me to lose more weight, and the added ingredients of sucrose, fructose, and aspartame, I think I will stay clear of Questran.
Tex, do you know if it is safe for me to take a multivitamin daily? I actually just realized that the generic one I was taking this whole time contains soy. I switched over to the Women's One-A-Day, which says it is soy-free, but wasn't sure if these multivitamins are still considered safe. I certainly hope so because it is almost the only thing that is supplying me with all the much needed nutrients.
Also, is beef safe to eat in the early stages? I didn't see it listed on the Stage One diet plan but was considering making beef stew to switch things up. Maybe it would be best to save this for after remission?
Thanks again!
Tex, do you know if it is safe for me to take a multivitamin daily? I actually just realized that the generic one I was taking this whole time contains soy. I switched over to the Women's One-A-Day, which says it is soy-free, but wasn't sure if these multivitamins are still considered safe. I certainly hope so because it is almost the only thing that is supplying me with all the much needed nutrients.
Also, is beef safe to eat in the early stages? I didn't see it listed on the Stage One diet plan but was considering making beef stew to switch things up. Maybe it would be best to save this for after remission?
Thanks again!
Interesting question. If you look at my log in date I've been at this 9 years.Brandy, do you mind if I ask what treatment worked best for you?
Big picture the following was and is very key:
few food regimen when in flare--sounds like prison but do this for 3-5 days, not a lifetime,
analyze improvements and very slowly add more foods
getting off oral supplements when in flare
stress management when in flare--for me this was meditative yoga, 30 minutes of lying
on mat in corpse position with guided mediation
Initial flare--I was able to get to "ribbon stool" once a day with the above only, no drugs
Went on drugs due to pressure from my boss and friends. I was under heavy pressure from my friends
to travel from North Florida to Mayo Clinic in Minnesota. There are 250 gastro docs within a 15 mile
radius from my house on my insurance plan. By this time I'd found this forum and knew
there was no magical doctor and magical treatment that would all of a sudden make me normal and
I knew that the Mayo gastro docs would have nothing more to offer than the other 250 local gastro
docs.
Started budesonide. When I started I did not have WD but had progressed on my own to "ribbon stool" once a day.
Had "normans" by day 3 on budesonide. Day 12-14 had constipation on 3 pills per day so went to
2 pills per day. Total time on budesonide was 4-1/2 months. Last 4 weeks on budesonide
was 1 pill every 4 days.
Budesonide was a rough drug for me to be on. I had pretty severe brain side effects and I probably
should not have been driving on 3 pills. Why did I stay on? Pressure from boss and friends to stay on
or try new meds. I was burnt out on trying new meds. By this time I'd tried Bentyl, Xyfaxan, Estrogen
and had very extreme side effects from all of these from 1 pill. I kept thinking the side effects would be less on budesonide at the lower dose. When I took the last budesonide pill I knew it would be the last time I'd be taking budesonide ever due to side effects.
Cholestyramine--loved this drug. Used it on a reflare. Even a tiny amount, like a 1/2 teaspoon would
get me normans. Problem was after 3-4 week usage my throat started swelling shut from the drug.
This is a common side effect listed for almost all prescription meds. Sadly I had to discontinue.
Due to the throat swelling shut side effect (death) I can't go on cholestyramine again.
Pepto--this works well for me too. I love taking this after meals. It is kind of like dessert.
Note there is some discussion that very long term use might not be good for kidneys but my nephrologist
did not want me on any supplements or scrip meds of any kind when I had the kidney scare. He said every
supplement in the world and all prescription meds are bad for kidneys--so what do you do.....
Uceris--this was not on the scene when I was diagnosed but I would consider trying it if I needed to.
9 month Reflare--I had a difficult 9 month reflare several years ago. I had WD once a day for about 9 months.
I was kind of in denial for about 9 months and thought I would just magically bounce out of it.
I got serious at the 9 month point--
** eliminated all oral supplements
** went on the few food regimen, which for me was chicken and rice and some coconut oil
breakfast chicken rice, coco oil, snack-same, lunch same, snack same, dinner repeat
repeat above for day 2 and day 3
**Implemented stress management, set my cell phone alarm to go off every 2 hours, every 2 hours
I did a meditation/prayer for 3-5 minutes to expel stale chi and reduce stress, repeat day 2
repeat day 3 etc. There are guided meditations on youtube for free.
About day 4-5 of the few food regimen, eliminating supplements, and the stress management plan I was
able to kick into once a day ribbon stool from once a day WD. Then I was able to work myself back to solid remission.
I believe that once a day WD is huge improvement from WD 10-15 times per day. Getting to once a day
ribbon stool from WD once a day is a huge improvement. Once you get to ribbon stool once a day
it doesn't take much to transition to normans.
Where I'm at now--I'm in remission. I eat a broad category of foods.
I'm able to eat a salad for lunch with chicken on the top, a true miracle and nectar of the gods. I do better
with cooked veggies and it is better for me to limit salad to one meal a day. I eat 98% unprocessed foods and
do better that way. The only processed that I occasionally eat are GF bread and GF Jovial pasta. Once and a while
I have some GF chips or GF crackers but I do better without them. My diet now would probably be called paleo.
I eat fruit another true miracle and nectar of the gods. I can eat cheese but it causes severe joint pain so I don't
eat it. We are not really drinkers but occasionally I'll have some alcoholic cider or white wine but do better
having alcohol with foods.
I travel. Last year I traveled around Europe. I was out in Montana for a week in June and travel (fly) up and down
the east coast every 4-6 weeks due to other commitments.
My age and how I feel about aging: I'm now age 58. Pre MC diagnosis at age 50 I had a lot of joint pain due to inflammation and I was having a lot of memory issues. I have no joint pain now (unless I eat cheese) and don't
have the memory issues. I see my peers having a lot of health issues. I feel good going forward health wise
and feel sad that my friends won't change diets due to joint pain.
************I think you are still okay to eat rice at a plus 1.************Billions of folks all over the world
eat rice. It is definitely safer for us than oats.
****If I thought the kidney score was a testing/lab anomaly linked to MC I would have no problem taking pepto
for another 8 pill 8 week run and drink a lot of water with it. My kidney scare situation was ridiculous. High
stress 6 months for what was really lab/testing error. It is a lengthy story but I agree with Tex that kidney
test scores can be improved despite what conventional medicine tells us. My lab work was coming in at
right at stage 4 --talk to your doctor about dialysis level but I knew something was clearly off from the labs.
I told referring doc and I told Nephrologist I thought my scores were lab errors. Even walking into the waiting
room I knew there was something off. I was the only patient at Nephrologist waiting room wearing spandex
(came from gym), I was the only patient that did not have a walker and I was the only patient that did not
have a driver, and I even looked better than the nursing staff/office staff as I was not overweight.
Now I eat no protein (go vegan) for 2 days before my labwork, do not lift weights for a week before my labwork
and drink a lot of water daily but particularly 2 days before my labwork and also morning of my labwork.
I make sure I am well hydrated morning of my labwork and I'm now pulling in normal kidney bloodwork 3-4 times
in a row. Mornings of the bad scores I had meatballs for breakfast, I lifted heavy at the gym, I was dehydrated
and I went directly to the lab. Kidney doc should have suspected lab error just from looking at my wearing
exercise spandex. I had to figure out the kidney stuff on my own. Kidney doc just suspected some rare
disease. Kidney disease is heavily linked to high blood pressure and to diabetes. I had neither so I knew
something was really off.
Also....just saw your post about vitamins. Taking oral supplements of any kind prevented me from getting into
remission. THey are a waste of money as the vitamin just goes through us. If you want a vitamin get one of the patch vitamins.
https://www.patchmd.com/
THere are several others out there.
FOR THOSE HAVING WD ORAL VITAMINS ARE CONTRAINDICATED FOR MC. THEY WILL SLOW/PREVENT
REMISSION, THE VITAMINS GO STRAIGHT THROUGH US WITH THE WD, THEY ARE A WASTE OF MONEY
WHEN WE HAVE WD.
remission. THey are a waste of money as the vitamin just goes through us. If you want a vitamin get one of the patch vitamins.
https://www.patchmd.com/
THere are several others out there.
FOR THOSE HAVING WD ORAL VITAMINS ARE CONTRAINDICATED FOR MC. THEY WILL SLOW/PREVENT
REMISSION, THE VITAMINS GO STRAIGHT THROUGH US WITH THE WD, THEY ARE A WASTE OF MONEY
WHEN WE HAVE WD.
After that awesome post by Brandy, I can only say that I completely agree with her recommendations. I would either postpone taking a multivitamin until I was in remission, or use transdermal patch vitamins.
Regarding beef, quite a few of us seem to have problems with it. Personally, it doesn't usually cause me to have D, but it causes bloating, headaches, shoulder and back aches and pains. So I stopped eating it. Pork is my meat of choice. But a few of us are are sensitive to pork. The safest meats are turkey and lamb. Wild type meats (even though they might be farm or ranch-raised) are safe also. Except for bison. Bison all carry domestic cattle DNA these days, so it you react to beef, you would probably react to bison. Ducks, geese, rabbit, pheasant, etc., are all safe. So are shellfish (shrimp, prawns, clams, oysters, mussels, etc.), unless you were previously allergic to them.
Tex
Regarding beef, quite a few of us seem to have problems with it. Personally, it doesn't usually cause me to have D, but it causes bloating, headaches, shoulder and back aches and pains. So I stopped eating it. Pork is my meat of choice. But a few of us are are sensitive to pork. The safest meats are turkey and lamb. Wild type meats (even though they might be farm or ranch-raised) are safe also. Except for bison. Bison all carry domestic cattle DNA these days, so it you react to beef, you would probably react to bison. Ducks, geese, rabbit, pheasant, etc., are all safe. So are shellfish (shrimp, prawns, clams, oysters, mussels, etc.), unless you were previously allergic to them.
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.
Lialda is sketchier results for MC (compared to Entocort or pepto). You can google the studies. Study that I just read said Lialda works best withcholestyramine. At that point you may as well just use the cholestyramine.
Tried and true, good efficacy, you can google the studies: Entocort, Pepto, Uceris (newest version of budesonide, may
help with the side effects)
We get a lot of folks on here that have been on Lialda for 6-7 months with no improvements and then they
find the forum. A lot of folks on the forum have had success with Entocort, Pepto and Uceris. I can't say that
for Lialda.
Tried and true, good efficacy, you can google the studies: Entocort, Pepto, Uceris (newest version of budesonide, may
help with the side effects)
We get a lot of folks on here that have been on Lialda for 6-7 months with no improvements and then they
find the forum. A lot of folks on the forum have had success with Entocort, Pepto and Uceris. I can't say that
for Lialda.