MICROSCOPIC COLITIS SUPPORT

Hello everyone. I haven't posted in awhile but check in on occasion. I'm wondering if anyone can pitch in their input. I have been reading up on methylation and I'm thinking it's an issue for me. I recently started SAM-e and I can really tell a difference in how I feel. My mood has improved greatly and I just don't feel like I'm moving through quicksand. I just feel "lighter". It's hard to describe. I was already taking a B-complex with activated forms of B vitamins and folate. But methylation is such a complex subject and I don't fully understand it yet. So I'm wondering if someone (Tex or Gabes or anyone else) who knows more about it could comment. I haven't gotten genetic testing so I don't have that knowledge to guide me. I just know that I'm responding to the SAM-e more than I've responded to any supplement that I can ever remember. Is this a strong indicator that I have methylation issues? I am planning on starting a B12 protocol to see if that helps as well. Is that advisable? Do you have suggestions on how to proceed from here since I suspect the problem? I so wish I could find a doctor or naturopath who really has knowledge about this. I know several who may acknowledge that the problem exists but don't necessarily have any experience in helping patients deal with it.

Then the big question is if I have methylation problems, which came first the methylation problems or the MC? The symptoms that the SAM-e seems to be helping are symptoms I have had way before I was ever diagnosed with MC (or had chronic diarrhea for that matter). They are symptoms that are practically life long. Makes me wonder.

I am glad that you started this board. I think it is very important to many of us.

Gigi

Hi Gigi,

Please don't feel like the Lone Ranger, because no one truly understands all the ins and outs of the methylation cycle and everything that is affected by the various associated processes. Most likely your methylation issues were present long before your MC symptoms developed.

SAM-e is a critical cosubstrate involved in many vital processes and it helps to regulate more than 200 enzymes used by our body. One of many important functions of SAM-e is to help eliminate excess histamine from circulation. And as you are probably aware, excess histamines seem to be a problem for many of us who have MC. I'm obviously just guessing here (since there's no published research to back this up), but it seems rather likely that long-term exposure to a condition of excess histamine might easily lead to a chronic state of inflammation resulting in the symptoms of MC.

Not nearly enough research has been done on SAM-e (and the various methylation processes) to truly illuminate it's significance, but so far, medical research has verified that SAM-e has antidepressant properties and it's helpful for suppressing the pain associated with osteoarthritis. It's also known that the brains and cerebrospinal fluid of Alzheimer's disease patients tend to show severely low levels of SAM-e. So clearly SAM-e is critical for our (healthy) existence. And since methylfolate is responsible for the production of SAM-e, this emphasizes the importance of the methylation cycle in general.

Yes, cobalamin (the active form of vitamin B-12) also plays a vital role in neurological health, so it should be a part of any methylation treatment program. With the proper balance of methylfolate, cobalamin, and possibly other B-vitamins, particularly B-6 (Pyridoxal 5'-phosphate), you should be able to produce all the SAM-e you need (without the need of a separate SAM-e supplement). But don't ask me how much of each you would need to take, because that's the sixty-four-thousand-dollar question (as the saying goes).

Maybe Gabes or someone else can shed some light on this.

Tex

Dr Sarah Myhill has dedicated her work to understand Chronic Fatigue Syndrome.

http://www.drmyhill.co.uk/wiki/CFS_-_Th ... tion_Cycle

She has a regime of what supplements one needs to take in the paragraph "The Methylation Cycle - which supplements to take to support".

Lilia

Tex,

So if SAM-e is downstream in the methylation pathway I probably do need to try supplementation of the activated forms of B12. It is coming as a surprise to me as to how this all ties into histamine. I would never have suspected I had a histamine problem. I do not get seasonal allergies. I have never once broken out in hives.

Lilia,

Thank you for that link. Dr. Myhill's recommendations are some if the more precise ones I have seen. But she does differ on some of the supplements compared to what I read on the link that Gabes provided in a prior thread. She doesn't mention adenyosyl b12. Also what she says here is key:
"But the methylation package will change with time because as the methylation cycle starts to work again, it will start to stand on its own feet. Everyone”s package will be a bit different depending on how poorly their cycle is working."

This is where it is tricky and I think mostly the reason there are sparse specific protocols to be found out there.

Gigi

Gigi,
Is adenosyl B-12 the active form of B-12? Because, that is essential, according to both Tex and Dr Myhill.

Lilia

It appears that there are many names for these active b12 vitamins. Adenosylcoblamin, adenosylb12, adenosylcbl, cobalamide, cobamamide, adocbl, adob12, adb12, adcbl, methylcobalamin, methylb12, methylcbl, mecocbl, mecbl, mb12, mecob12 and other similar ones.

Lilia

PS: As I read the article, there are no dangers combined with taking too much B-vitamins. As she mentions: If you get better, stick to it! If it doesn't work she also states a changed formula. I will give it a 2 month trial, as she suggests.

Lilia,

As I undertand it there are two forms of active b12, methyl b12 and andenosyl b12. A person can be deficient in either or both I guess depending on where exactly in their methylation cycle they have a glitch.

Gabes link in her last post suggests using both forms but starting with the methyl then adding the andenosyl to see how you react to each. But this information was all from a forum and I had to read a bit just to glean that much. Certainly no simple answers here. That's why I so wish I could find a practitioner.

Gigi,

I didn't mean to imply that you had a histamine problem. If you don't have any histamine symptoms, then you probably don't have any significant histamines issues. Not all of us have abnormal histamine problems. I merely brought that up because histamine is a problem for so many of us.

Probably the most likely way for methylation problems to trigger an IBD is by DNA alteration (epigenetic changes). Here are links to several reference articles on that subject, listed in order from oldest (2012) to newest (2014):

Mucosal genome-wide methylation changes in inflammatory bowel disease.

DNA methylation in inflammatory bowel disease and beyond

DNA methylation changes in inflammatory bowel disease

Tex

Tex,
Thanks so much for those links. And thanks for clearing up the histamine issue. I've just been wondering though because for 3 years before I was diagnosed with LC and before I started with totally chronic diarrhea I had seasonal bouts of diarrhea in the spring but would go back to normal. Then one spring of 2014 it came and has never left.

I had a similar experience. At first I thought that I was having relapses of the flu. Then I decided that I must be getting food poisoning from eating at various fast food restaurants while out making deliveries at work. In between episodes, I seemed to be fine. Then one day the watery D started and wouldn't stop, no matter what I took/ate/did. That's when I finally caved in and went to see a doctor.

Tex

Tex,

Lol! Me too. My family thought I was crazy for not going to the doctor. But 4 months of diarrhea finally got me there.

I’m not a scientist, and I even understand very little of the methylation cycle, but since we do know the following:

1. The active forms of B12, B9 and B6 are essential in the methylation cycle (and maybe also other supplements we don’t know of as per now)

2. There are absolutely no dangers in taking too much B-vitamins

3. As per today there are no known recipes as to the ratio between the three B-vitamins

Then, IMO, we can do our own trial and error program. Whether we start with Dr Myhill’s regime, or Gabes' regime, it doesn’t matter.

Dr Myhill also says that after 2 months with her methylation regime, the methylation cycle will stand on its own feet.

Lilia

Lilia....Agreed. Based on what I have been able to read and understand so far, I plan to start a supplement protocol. I will say I've probably read a bit more than I understand though. But I plan to start with metylcobalamin b12 and then add adenosyl b12. If all goes well then I will add methylfolate to that. I have been taking for some time the basics that seem to be recommended by everyone which are the other B vitamins, VitC, VitD3, VitE, omega 3's, CoQ10, and minerals. The one thing I am not sure of is whether to continue to take the SAM-e. What I read indicates it usually is something to add once you have been on the B12 and folate for a little while. I am hesitant to stop it because it makes me feel so much better and it is the supplement that confirmed to me that I probably have methylation problems.

One thing that there seems to be a controversy over is why some people tend to have unpleasant side effects after they start a b12 protocol. Some say it is a "detox" reaction and others say it is caused by the firing up of methylation. As the biochemical pathway is restored to more optimal it creates side effects that this camp attributes to healing. This might be avoided by slow titration. Whether or not it is detox or healing there does seem to be a consensus that the side effects are temporary but they can cause people to not push through the protocol because they feel worse. I hope this does not happen to me because I don't have time to feel worse.

Also, if anyone is wondering whether I think that addressing methylation will help my MC symptoms the answer is yes but not necessarily directly. I am hoping for a renewed energy to make the food and lifestyle choices that can help the MC. But there does seem to be plenty of evidence that the methylation pathway is altered in people with other IBD's (see links shared by Tex above). I just can't tell if anyone has figured out if the IBD caused the defective methylation gene to express or the expression of the methylation gene caused the IBD gene to express. So, so much more to know about this beyond what my little crash course has revealed.

If anyone is interested, I will try to update as to how this experiment goes.

Gigi

Gigi wrote: The one thing I am not sure of is whether to continue to take the SAM-e. What I read indicates it usually is something to add once you have been on the B12 and folate for a little while. I am hesitant to stop it because it makes me feel so much better and it is the supplement that confirmed to me that I probably have methylation problems.


If anyone is interested, I will try to update as to how this experiment goes.

Gigi

I thought that SAM-e actually was synonym with S-Adenosyl Methionine, or am I wrong?
Does anybody know what the S stands for, btw?

Yes, please keep me updated, I would love to hear how it goes.

Lilia

Lilia wrote:Does anybody know what the S stands for, btw?

I would assume that it stands for sulfur, since that's the standard chemical abbreviation for sulfur, but I don't know that for a fact in this particular case.

Tex