Hi,
My MC flared in August 2013, I believe because I was taking ibuprofen for a back injury. I have tried many things to get it under control but it only seems to be getting worse with time. I am gluten-free and lactose-free and avoid soy for the most part. I also have celiac and have noticed that I am sensitive to high-histamine foods (citrus, fish, wine, tomatoes, etc.). I find it pretty difficult to completely avoid these foods. My questions:
1. I will be seeing my gastroenterologist in a couple weeks. Which drug do you think is more effective -- Colazal or Asacol or Entocort? I have not been to the doctor yet for this current flare.
2. I see that you recommend Culturelle, which i've been taking. What about sacc b? When I first tried it, I had great BMs for a few days, then back to D. Just wondering if it is considered helpful or unhelpful.
3. Can an antihistamine help me? I tried benadryl and it did nothing.
4. Does anyone recommend the natural anti-inflammatories -- bromelain, slippery elm, boswellia, turmeric? I've tried these but haven't seen any results.
5. I take methyl b-12 as it really helps me function. Could this be exacerbating MC? I'm also supposed to take methylfolate but have not started. Could this make MC worse?
6. Has anyone considered treating oneself for parasites? I tried but the parasite cleanses were too irritating to my GI tract.
Thanks in advance for any advice you can offer. I would really love to get this problem under control.
Need some direction
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
some suggestions:
being gluten free lactose free and soy free for the most part is a likely reason for the issues for 2 reasons
a) it cant be for the most part, it has to be 100% free of those irritants, when we are inflammed, a small amount of contamination can cause issues. Healing will not be productive until all major triggers are removed from the diet etc.
b) Caesin is the main issue for most MC'ers so generally it has to be fully dairy free. being lactose free may not be enough.
I cant help you with number 1.
re No. 2. not all handle pro-biotics, and this seems to be moreso when people are quite inflammed. while ever you still having gluten, lactose, caesin, soy it would be difficult to confirm if the pro-biotic is causing the issues or not
re no 3 - if you read some of the posts about antihistamines, some had to try some different ones, at different times/doses to get their symptoms under control. there are a few that benadryl did not assist, but other forms did.
re no 4 - things like bromelain, slippery elms, bosweilla and tumeric are for different types of inflammation -I do recall there are some MC'ers that have had some luck with bosweilla. but like all things, it takes time. and if you are having histamine inflammation these type of natural antiflammatories will not help.
re no 5 - quite a few of us take active forms of B12 and B6 - and none have reported issues with their MC whilst taking these.
re no 6- i would only treat parasites if there is proof they are there. I have had full poop testing for parasites and there were none. IMO doing treatments for parasites if there are none (or no excess) is more likely to cause additional issues than help.
are you eating a low inflammation, low fibre bland eating plan??
being gluten free lactose free and soy free for the most part is a likely reason for the issues for 2 reasons
a) it cant be for the most part, it has to be 100% free of those irritants, when we are inflammed, a small amount of contamination can cause issues. Healing will not be productive until all major triggers are removed from the diet etc.
b) Caesin is the main issue for most MC'ers so generally it has to be fully dairy free. being lactose free may not be enough.
I cant help you with number 1.
re No. 2. not all handle pro-biotics, and this seems to be moreso when people are quite inflammed. while ever you still having gluten, lactose, caesin, soy it would be difficult to confirm if the pro-biotic is causing the issues or not
re no 3 - if you read some of the posts about antihistamines, some had to try some different ones, at different times/doses to get their symptoms under control. there are a few that benadryl did not assist, but other forms did.
re no 4 - things like bromelain, slippery elms, bosweilla and tumeric are for different types of inflammation -I do recall there are some MC'ers that have had some luck with bosweilla. but like all things, it takes time. and if you are having histamine inflammation these type of natural antiflammatories will not help.
re no 5 - quite a few of us take active forms of B12 and B6 - and none have reported issues with their MC whilst taking these.
re no 6- i would only treat parasites if there is proof they are there. I have had full poop testing for parasites and there were none. IMO doing treatments for parasites if there are none (or no excess) is more likely to cause additional issues than help.
are you eating a low inflammation, low fibre bland eating plan??
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi,
Welcome to our internet family. It appears that Gabes did a good job of answering most of your questions (and I agree with her views), so I will only address the ones she skipped.
In general, the accumulated experience of the members here suggests that budesonide (the active ingredient in Entocort) is far more effective for treating MC, in most cases, than mesalamine (the active ingredient in Asacol, Colazal, Lialda, Apriso, etc.). Unfortunately, most GI docs won't prescribe it for long-term use, whereas mesalamine-based medications can be prescribed for indefinite use.
The important thing to remember about histamines is that we have to limit the total amount of histamines in our system at any time. We cannot avoid histamines altogether. That's impossible. For one thing, the digestive system uses histamines as part of the chemical messaging system to trigger certain digestive processes (such as the production of gastric acid in the stomach), so we can't live without histamine. In most cases, we don't even necessarily have to avoid all high-histamine foods. We just have to limit them so that the total histamine intake at any meal (or on any day) is not excessive.
Also, though there are many lists of high-histamine foods, those listings are not exactly chiseled in stone. Here's why:
Histamine continues to increase in foods with every passing hour. When we cook a meal using fresh ingredients (even including fresh fish, or fresh tomatoes, for example), the histamine level will be relatively low. But if we stick the leftovers in the fridge (or if we refrigerate the ingredients for a day before cooking them), the histamine level is significantly higher. By the second day, those leftovers have a much higher histamine level, and the level continues to rapidly increase with each passing day. Why does this happen?
IMO, it happens because the primary cause of histamine is mold, and mold continues to grow at normal refrigeration temperatures. The only way to prevent that from happening is to freeze the items at deepfreeze temperatures (zero degrees F, or lower). That's why most of us immediately freeze any leftovers that we intend to use in the future (in individual serving sizes, to make using them much easier).
This same issue of mold growth also apples to fresh fruit. For example, I can eat a just ripe banana with absolutely no problems. If I allow it to continue to ripen for a day or so, the histamine content goes up faster each day, so that after a couple of days past optimum ripeness, if I eat that banana, it will cause me to itch like mad. I haven't tested tomatoes, (there is no way to test histamine levels, so all we can do is use ourselves as a guinea pig), but I'll bet a gluten-free cookie that barely-ripe tomatoes are not high-histamine, but very ripe tomatoes have a very high histamine content.
Of course, certain foods such as alcohol and chocolate are likely to always be high, even when we first acquire them.
Regarding methylation and B-vitamins, I have been taking a prescription vitamin mix (called Metanx) of the active forms of vitamins B-12, B-9, and B-6, for over 5 years now (to treat peripheral neuropathy and other neurological issues), and I can't see that they have any negative effect on my digestive system. IOW, I remain in remission.
I hope that some of this is helpful. Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. It appears that Gabes did a good job of answering most of your questions (and I agree with her views), so I will only address the ones she skipped.
In general, the accumulated experience of the members here suggests that budesonide (the active ingredient in Entocort) is far more effective for treating MC, in most cases, than mesalamine (the active ingredient in Asacol, Colazal, Lialda, Apriso, etc.). Unfortunately, most GI docs won't prescribe it for long-term use, whereas mesalamine-based medications can be prescribed for indefinite use.
The important thing to remember about histamines is that we have to limit the total amount of histamines in our system at any time. We cannot avoid histamines altogether. That's impossible. For one thing, the digestive system uses histamines as part of the chemical messaging system to trigger certain digestive processes (such as the production of gastric acid in the stomach), so we can't live without histamine. In most cases, we don't even necessarily have to avoid all high-histamine foods. We just have to limit them so that the total histamine intake at any meal (or on any day) is not excessive.
Also, though there are many lists of high-histamine foods, those listings are not exactly chiseled in stone. Here's why:
Histamine continues to increase in foods with every passing hour. When we cook a meal using fresh ingredients (even including fresh fish, or fresh tomatoes, for example), the histamine level will be relatively low. But if we stick the leftovers in the fridge (or if we refrigerate the ingredients for a day before cooking them), the histamine level is significantly higher. By the second day, those leftovers have a much higher histamine level, and the level continues to rapidly increase with each passing day. Why does this happen?
IMO, it happens because the primary cause of histamine is mold, and mold continues to grow at normal refrigeration temperatures. The only way to prevent that from happening is to freeze the items at deepfreeze temperatures (zero degrees F, or lower). That's why most of us immediately freeze any leftovers that we intend to use in the future (in individual serving sizes, to make using them much easier).
This same issue of mold growth also apples to fresh fruit. For example, I can eat a just ripe banana with absolutely no problems. If I allow it to continue to ripen for a day or so, the histamine content goes up faster each day, so that after a couple of days past optimum ripeness, if I eat that banana, it will cause me to itch like mad. I haven't tested tomatoes, (there is no way to test histamine levels, so all we can do is use ourselves as a guinea pig), but I'll bet a gluten-free cookie that barely-ripe tomatoes are not high-histamine, but very ripe tomatoes have a very high histamine content.
Of course, certain foods such as alcohol and chocolate are likely to always be high, even when we first acquire them.
Regarding methylation and B-vitamins, I have been taking a prescription vitamin mix (called Metanx) of the active forms of vitamins B-12, B-9, and B-6, for over 5 years now (to treat peripheral neuropathy and other neurological issues), and I can't see that they have any negative effect on my digestive system. IOW, I remain in remission.
I hope that some of this is helpful. 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.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
just want to add a couple of things.....
I didnt realise it was your first post! welcome...
I also had another thought... the ability of the anti-histamines to work would also be limited if you are reacting/inflammed from the gluten, caesin, soy intake....
the sucky part of MC world is that there is no set guaranteed way to resolve the issues.
What works for one person may not work for another, each person has to find their way.
The other sucky part is that there is no 'half way' or 'most of the time' process with the consumption of individual irritants, especially things like gluten, dairy etc. if you suspect that multiple things could be causing issues, the only way to confirm this is to remove all, and test them one at a time. (or in the case of food ingredients you can do the entorlab testing)
hope this helps
I didnt realise it was your first post! welcome...
I also had another thought... the ability of the anti-histamines to work would also be limited if you are reacting/inflammed from the gluten, caesin, soy intake....
the sucky part of MC world is that there is no set guaranteed way to resolve the issues.
What works for one person may not work for another, each person has to find their way.
The other sucky part is that there is no 'half way' or 'most of the time' process with the consumption of individual irritants, especially things like gluten, dairy etc. if you suspect that multiple things could be causing issues, the only way to confirm this is to remove all, and test them one at a time. (or in the case of food ingredients you can do the entorlab testing)
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Adele13348
- Little Blue Penguin
- Posts: 42
- Joined: Thu Oct 30, 2014 11:29 pm
- Location: Pensacola Florida
Thank you for your responses. I will be sure to mention Entocort at my doctor's appointment. I am glad to hear no one sees a worsening of their symptoms with methyl b12 as this supplement is a godsend for me.
Just to clarify...I am 100% gluten-free because I have celiac.
I am working on cutting out dairy and reducing histamine intake. During my last flare, I had to become a vegan to get my symptoms under control and it was pretty inconvenient. I find I really need protein, so going vegan isn't really an option this time around. I get super tired if I don't eat protein.
I just picked up some vitamin B2 because it's supposedly important for healing the GI tract and a cofactor for methyl b12 and methylfolate. We'll see if it helps.
My 5 y.o. son is on a very, very restrictive diet that requires constant vigilance and lots of time in the kitchen and I frankly am not super-motivated to do the same for myself (outside of gluten and lactose), but I am working on it.
Thanks again!
Just to clarify...I am 100% gluten-free because I have celiac.
I am working on cutting out dairy and reducing histamine intake. During my last flare, I had to become a vegan to get my symptoms under control and it was pretty inconvenient. I find I really need protein, so going vegan isn't really an option this time around. I get super tired if I don't eat protein.
I just picked up some vitamin B2 because it's supposedly important for healing the GI tract and a cofactor for methyl b12 and methylfolate. We'll see if it helps.
My 5 y.o. son is on a very, very restrictive diet that requires constant vigilance and lots of time in the kitchen and I frankly am not super-motivated to do the same for myself (outside of gluten and lactose), but I am working on it.
Thanks again!
Hi Tex,tex wrote:
Regarding methylation and B-vitamins, I have been taking a prescription vitamin mix (called Metanx) of the active forms of vitamins B-12, B-9, and B-6, for over 5 years now (to treat peripheral neuropathy and other neurological issues), and I can't see that they have any negative effect on my digestive system. IOW, I remain in remission.
I hope that some of this is helpful. Again, welcome aboard, and please feel free to ask anything.
Tex
I don't think I can get the equivalent of Metanx here where I live, but you mentioned in some other post the ratio you use between B-12 methylcobalamin and the active forms of vitamin B-6 and B-9, but I can't find it. I have ordered all three vitamins on the net.
I know that I need high value of B-12 (up to 2000 mcgr/day), but I would like to know the amount of B-9 and B-6 I would need to take, in order to obtain the best result.
Thanking you in advance,
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Lilja,
Here is the way I used them, but you may need to change the doses depending on the amount of the active ingredients in the products that you ordered:
Tex
Here is the way I used them, but you may need to change the doses depending on the amount of the active ingredients in the products that you ordered:
If you will post the amounts of active ingredients in each vitamin that you ordered, I or someone else will be happy to offer suggestions on how to take them in order to get the proper balance of those 3 vitamins. It's very important that the doses are balanced for these particular vitamins.Metanx contains:
35 mg of Pyridoxal 5'-phosphate (which is the active form of B-6)
3 mg of L-methylfolate Calcium (which is the active form of B-9)
2 mg of Methylcobalamin (which is the active form of B-12)
That can be obtained from:
Vital Nutrients brand of Pyridoxal-5 Phosphate, 50 mg. Inert ingredients are: rice powder, gelatin capsule, leucine, and silica.
To match the dose, take 1 capsule per day, 2 days in a row, then skip the 3rd day, then start over. IOW, this will amount to 2 capsules every 3 days, in order to average out at 33 mg per day.
Life Extension brand of Optimized Folate (L-methylfolate), 1,000 mcg. Inert ingredients are: mirocrystaline cellulose, vegetable cellulose (capsule), silica, vegetable stearate. The label specifically names all of the common allergens (including milk, eggs, soy, wheat, yeast, nuts, corn, rice, etc.), and the product is certified to be free of all of them.
To match the dose, take 3 capsules each day.
2,000 mcg of methylcobalamin. There are a number of options available for methylcomalamin. The one I used is Wonder Laboratories brand of Methyl Cobalamin, 5,000 mcg. Be aware that it contains mannitol, citric acid, and stevia.
To match the dose, take 1 tablet, then skip a day, take another tablet, then skip 2 days, then repeat. IOW this will amount to taking 2 tablets every 5 days, in order to average out at 2,000 mcg per day.
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.
[quote="tex"]Lilja,
Jarrow: Methylcobalamin B-12, 1000 mcg
https://www.bigvits.co.uk/product.asp?pid=126&bid=11
CountryLife: P-5-P Pyridoxal 5' Phosphate (B-6) 50 mg
https://www.bigvits.co.uk/product.asp?pid=431&bid=3
Jarrow: Folate Methyl 400 mcg
https://www.bigvits.co.uk/product.asp?pid=1402&bid=11
Lilja
Hi Tex,
I ran out of Methyl Folate, since one box lasts only last 8-9 days, and I was too late to order anew, so I went without for 10 days. I can't tell you what awful pain and cramps, both in my buttom and in my legs I have had these days, waiting for the order to arrive. But then again, how can I be so sure that the pains are due to the lack of methyl folate?
Well, once I had taken the first 7 capsules after they arrived, it took less than 1 hour for the pains to disappear!
Is this what they call polyneuropathic pain? I hope the nerve damage is reversible.
Do you know of any other brand that contains either more methyl folate per capsule, or have bigger boxes? Jarrow's contains only 60 capsules = 8-9 days.
Eternally grateful,
Lilja
Jarrow: Methylcobalamin B-12, 1000 mcg
https://www.bigvits.co.uk/product.asp?pid=126&bid=11
CountryLife: P-5-P Pyridoxal 5' Phosphate (B-6) 50 mg
https://www.bigvits.co.uk/product.asp?pid=431&bid=3
Jarrow: Folate Methyl 400 mcg
https://www.bigvits.co.uk/product.asp?pid=1402&bid=11
Lilja
Hi Tex,
I ran out of Methyl Folate, since one box lasts only last 8-9 days, and I was too late to order anew, so I went without for 10 days. I can't tell you what awful pain and cramps, both in my buttom and in my legs I have had these days, waiting for the order to arrive. But then again, how can I be so sure that the pains are due to the lack of methyl folate?
Well, once I had taken the first 7 capsules after they arrived, it took less than 1 hour for the pains to disappear!
Is this what they call polyneuropathic pain? I hope the nerve damage is reversible.
Do you know of any other brand that contains either more methyl folate per capsule, or have bigger boxes? Jarrow's contains only 60 capsules = 8-9 days.
Eternally grateful,
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
For this one (the methylcobalamin), you will need to take 2 each day.Lilja wrote:Jarrow: Methylcobalamin B-12, 1000 mcg
This is the same strength as the one that I used, so you will need to take 1 capsule per day, 2 days in a row, then skip the 3rd day, then start over. IOW, this will amount to 2 capsules every 3 days, in order to average out at 33 mg per day.Lilja wrote:CountryLife: P-5-P Pyridoxal 5' Phosphate (B-6) 50 mg
(6S)-5-methyltetrahydrofolic acid glucosamine salt is the equivalent of L-methylfolate calcium, so for this one (Jarrow Methyl Folate), you would need to take 7 capsules one day, and 8 capsules the next day (for an average of 7.5 capsules per day), if you want to be exact. It probably wouldn't matter whether you took 7 or 8 capsules (the same every day), because either one is close enough to a total of 3,000 mcg (3 mg) per day. 7 would add up to 2,800 mcg, and 8 would add up to 3,200 mcg.Lilja wrote:Jarrow: Folate Methyl 400 mcg
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.
Thank you, Brandy!brandy wrote:Hi Lilja,
I did Tex's protocol above but I took 7 of the folate methyl to get to 2800 per day. I did 7 pills every day and figured I was close enough. It was a little pile up of pills every morning. For the other two B's I followed his procedures as specified.
Brandy
I have bought a big box with 7x4 rooms, and put all my supplements incl Entocort in there, so I guess I will dream of pills & capsules tonight.
I put in 7 of the folate methyl, but that was just because the little room in the box was too small for 8 plus all the others... I will do as you say in the future as well.
I hope the protocol helped you.
Thanks!
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013