Intro and Question

[Chemgirl]

I have been lurking on this site for over a year so it's about time that I introduce myself.

My digestion has never been normal. I also have always had D during my period, so definitely a hormonal link for me. Everything really started to go wrong on my 30th birthday (September 2013). My husband booked a vacation to celebrate and I picked up a bug. The D started on our way home, and by the end of the week it seemed to be just blood, mucus, and undigested food (gross I know). I was getting dizzy so went to the ER. They took cultures for C Difficile that came back normal. One revelation was that I had chronic microcytic anemia and zero ferritin (first blood test ever). I was told to follow up with my PCP, but I would probably feel fine in a few days. Well I didn't feel fine in a few days. My doctor prescribed Cipro and Tylonol 3. After a few days my stomach started to burn and I began vomiting blood. So back to the doctor I go. Now he thinks I have heartburn and prescribes a PPI. The PPI did very little for the pain and I developed a strange hollow feeling with loud gurgling. This progressively got worse until I experienced extreme pressure under my right rib. The pressure was so extreme that I couldn't breath while laying down. So 30 year old me started sleeping in a chair.

I did call my PCP again and he suggested I stay the course on my current prescription for at least a month and then we'd talk. I wasn't thrilled about that, but agreed since there is a doctor shortage here and I didn't have many options. At this point I took a leave of absence from work and went to stay with my parents. I was 109 pounds at 6 feet tall so they took one look at me and brought me to the ER. Here I lucked out because my parents live in a small community with all of my family. The ER doctor was very familiar with my grandmother who had Crohns disease. He agreed that there was something very wrong and set up an emergency consult with a GI. Finally things were looking up. The GI found gastric polyps, gastritis, and nothing else. Her guess was H pylori plus an unidentified pathogen. I did the treatment for h pylori along with her suggestion of Florastor (s. boulardii). This cleared up the bleeding, stomach pain, and D (well nothing solid, but once per day).

Biopsies came back positive for collagenous colitis and I was still anemic. My GI suggested that I stay off all meds since the D seemed under control. So far so good.

I wasn't totally in remission though. My anemia remained unresponsive to treatment until February 2014. That's when I found this website and began an elimination diet. After only a month I had healed enough to absorb iron! It's been almost a year, but all of my bloodwork is finally in the normal range, including ferritin.

Thanks for reading! I realize it's a bit of a novel.

So at this point I avoid, gluten, and soy. Sometimes I cheat with dairy without ill effect. I also supplement with vit. D, iron (proferrin heme iron), vit C, Omega 3, and a multi. I get magnesium from hemp hearts.

I do have a few questions. Any idea why the D stopped after treatment for H pylori? Some type of bacterial imbalance? Whenever I try taking a probiotic that isn't yeast based I get crazy burning, like somebody is pouring rubbing alcohol on a paper cut, but its inside my gut. Nothing else produces this type of reaction.

What about active forms of folate and b 12? I don't have a diagnosed methylation issue, but even so it makes sense to take bioavailable forms. Any recommended brands? So far I can't seem to find anything in Canada so was thinking of ordering from Vitacost. Any experience with their house brand?

Finally, I test normal for b12 (mid range) and very high for folate (off the charts, no number provided). I'm not sure what this means? I have a new doctor who thinks it's fine.

[tex]

Hi,

I believe I welcomed you previously in another thread (about 10 days ago), but welcome again. I'll try to answer your questions.

I do have a few questions. Any idea why the D stopped after treatment for H pylori? Some type of bacterial imbalance? Whenever I try taking a probiotic that isn't yeast based I get crazy burning, like somebody is pouring rubbing alcohol on a paper cut, but its inside my gut. Nothing else produces this type of reaction.

Certain antibiotics (especially Cipro or any of the other fluoroquinolones) typically stop the D (at least temporarily while the antibiotic is still in the system). If the H. pylori treatment involved taking an H2 antinistamine, or bismuth subsalicylate (Pepto-Bismol), either of those can also bring remission. If an H2 antihistamine (or a PPI) induced remission, that suggests that you have a mast cell/histamine issue.

Many of us cannot tolerate a probiotic while we are still recovering. For some of us, probiotics cause a violent MC flare.

What about active forms of folate and b 12? I don't have a diagnosed methylation issue, but even so it makes sense to take bioavailable forms. Any recommended brands? So far I can't seem to find anything in Canada so was thinking of ordering from Vitacost. Any experience with their house brand?

The active form of B-12 is methylcobalamin, and it's best utilized in a sublingual lozenge (designed to be dissolved under the tongue, where it goes straight into the bloodstream). Here is a link to a sublingual B-12 product offered by Vitacost, that appears to be free of most food sensitivities. The problem with it is that the folic acid it contains is in the proper balance, but not the active form.

http://www.vitacost.com/vitacost-methyl ... rry-flavor

Finally, I test normal for b12 (mid range) and very high for folate (off the charts, no number provided). I'm not sure what this means? I have a new doctor who thinks it's fine.

There can be other causes (because a lot of foods are "fortified" with folic acid these days, which can cause problems for many of us), but one of the things that can cause high folic acid levels is a methylation problem. If the body can't properly convert folic acid into the active form, the supply tends to build up, leading to other problems. You should have your homocysteine level checked. If it is also high, that could be because of a methylation issue, and this problem would need to be pursued and resolved (presumably by reducing folic acid intake while taking methylfolate instead).

Most mainstream doctors are not likely to be up to date on methylation issues. However, please be aware that on the other hand, methylation issues are probably not nearly as widespread as many alternative practitioners would have us believe. IOW, rather than to assume that you have methylation issues, it's much better to verify the problem, rather than blindly making assumptions and attempting to treat it.

Tex

[Chemgirl]

Thanks Tex.

I agree that I shouldn't blindly try and treat a methylation issue without any real evidence that I have one. Problem is I'm in Canada so I can bring up testing, but it has to be considered medically necessary before the doctor will order it. If she doesn't know anything about it, she won't order the tests. I love public healthcare, but annoying when you want a test and the government doesn't think it's important. I don't meet the government criteria to get vitamin D values checked so I just have to go on blind faith for that one as well.

My plan was to cut out all folic acid, which isn't hard for me because I rarely eat processed foods. My logic (probably flawed) is that I need some folate, so supplementing with the active form should be ok either way.

I'm consulting with a midwife in order to figure out how mc and deficiencies will affect future pregnancies. She threw a fit when I brought up not taking folic acid (she wants me to take 2000 mcg per day). I thought methylfolate might be the way to go.

I find all of this too complicated and I spent 8 years in school taking biochemical engineering. I don't know how anybody does it. Seriously you are amazing!

[tex]

Well, we certainly don't claim to have it all figured out either, but we keep trying to learn as much as we can about these issues that seem to fall through the cracks in the halls of mainstream medicine. And the more we learn, but better the pieces of the puzzle seem to fit together.

To be honest, I can't see anything seriously wrong with your plan for reducing folic acid intake and replacing it with methylfolate, because I've been doing the same thing for over 5 years now, and it has definitely helped to reduce some serious neurological issues that I had developed. For optimal effectiveness, the active forms of vitamins B-12, B-9, and B-6 need to be taken in the proper balance. The prescription vitamin combination known as Metanx has the proper balance. Metanx is prescribed to treat issues such as peripheral neuropathy (sometimes associated with diabetes), endothelial dysfuncton (involving the ability of blood vessels to respond to the need to constrict or dilate to regulate blood pressure), and it is also known to boost brain functions such as cognitive abilities and memory.

For situations where a prescription for Metanx cannot be obtained, this vitamin combination can be made up from over the counter vitamins by using a little creativity.

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 a single 5,000 mcg 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.

Incidentally, engineering is apparently one of the more stressful pastimes, because a surprising number of the members here have engineering backgrounds (and according to my theory for the perfect storm that causes the development of MC, stress is an essential ingredient).

You've very welcome, and IMO, everyone here is amazing. This disease is definitely not for the faint of heart.

Tex

[UkuleleLady]

That's when I found this website and began an elimination diet. After only a month I had healed enough to absorb iron! It's been almost a year, but all of my bloodwork is finally in the normal range, including ferritin.

That just blows my mind. Pretty good endorsement for removing food sensitivities.

Nancy

[Jeanie]

Tex,

I just found your yet another wonderful article. I have just learned that a dear cousin of mine who is at the moment down in Arizona and she just told me that she has a problem with Endothelial dysfunction. I sent her this website information and I hope that she can find some help here.

I had planned on sending a message in because I'm having a big problem with dry mouth. My dentist showed some concern with it a while back and I wondered if I might possibly have a problem with the Sjögren's syndrome. I have asked my doctor if it was possible to get a test for it but she wasn't too anxious as she thinks I have enough problems as it is. Hmmmm. I'm certainly not looking for more problems but if there is anything wrong I want to know.

Thanks again.
Jean

[tex]

Hi Jean,

Are you by any chance taking a thyroid supplement? If so, have your TSH, Free T3, and Free T4 been checked recently. I've been having severe dehydration issues during the night (I drink plenty of water during the day, but it had begun to go straight to my bladder) and because of the problem, dry mouth became a major problem. My TSH has always been up and down, but usually in the normal range. Recently it appears to have crashed and burned, so my doctor suspects that something has changed to cause my thyroid treatment to be excessive. I cut my dosage in half (even though my Free T4 is below range), and while symptoms have been somewhat erratic at times, I seem to be slowly improving. Dry mouth is no longer a significant problem after a week of reduced treatment, and the dehydration issues are also fading away. Blood pressure is coming down again. I suspect that changes in my thyroid function (possibly because of methylation issue correction) has increased the metabolism of my thyroid treatment (Armour), so that it has become more potent, thus triggering all these symptoms of hyperthyroidism.

MC is so closely associated with thyroid issues (and methylation issues also complicate this association) that I wonder if the relatively high rate of Sjögren's among members here might have something to do with thyroid issues. I would also point out that when I was having the dry mouth problem (nighttime dehydration), my feet and hands (especially the fingers) were always like ice during the night, despite my main body sweating excessively. IOW, the problem is temperature regulation (which is a function of the thyroid gland), rather than just decreased secretions and cold extremities, as is the case with Sjögren's. This morning when I woke up (after a good night's sleep), my feet and fingers were warm, and I wasn't sweating.

But that's just my strictly unprofessional opinion.

Tex

[Rosie]

Tex said

I suspect that changes in my thyroid function (possibly because of methylation issue correction) has increased the metabolism of my thyroid treatment (Armour), so that it has become more potent, thus triggering all these symptoms of hyperthyroidism.

I haven't posted in quite some time because I am doing well, but continue to check in because I continue to learn new things. But I saw this post by Tex and it reflects what happened to me so I wanted to chime in. I decided about 4 months ago to start supplementing with the active forms of B12 and folate, as some blood work showed that I had a modest macrocytosis which is often associated with B12 deficiency. I had been taking a multivitamin, but of course that has the non-active forms of B12 and folate. I had Graves Disease (hyperthroid) around 4 years ago and had the radioactive iodine treatment. Since then I had been stabilized on 100 micrograms/day of levothyroxine for several years. After a month of taking the methylcobalamine, methyl folate and P-5-P, I noticed that the symptoms of being hyperthyroid were returning, most noticably high pulse rate and breathlessness. I got retested, and indeed, I was now definitely hyperthyroid and had to reduce my dose of levothyroxine.

I will also mention here that the other major affect I noticed from the taking the active B vitamins is that the long-standing soreness and inflammation in my hands pretty much disappeared within a week. I was astounded, as this has been an issue for at least a decade. I even had a surgery for trigger finger, as the inflammation was so bad. Another finger had also developed trigger finger that was getting progressively worse over the past several years and I was contemplating another surgery. But after a week the finger was about 90% improved and the other soreness in my hands was pretty much gone. It was like a miracle! Now 4 months later my hands continue to feel pretty good and I have been able to take up golf again. However, when my husband decided to try adding the active B vitamins, he didn't notice any difference, probably because he wasn't deficient to start with. I almost hesitate to mention this, because we are all different and what works great for one person doesn't for someone else. What this experience has taught me is that the MC can cause various deficiencies and is often associated with other inflamation and autoimmune diseases. So it pays not to just accept that we have some problems, and think that we are just getting older and not much can be done. Gabes has been a real leader in exploring every avenue to wellness and I have been impressed and inspired by her continuing progress!

[tex]

Hi Rosie,

It's good to see a post from you, and it's great to hear that you're continuing to do well.

And thank you so much for sharing your experience and your insight concerning methylation. You've posted some very interesting information, to say the least. And since you had a relatively fast response to the methylation treatment, and you caught the thyroid changes promptly, it's what I would consider to be very compelling evidence.

I've been planning to write more about this but I've been waiting to see if all my symptoms are going to completely resolve before sticking my neck out much further. So far so good though, because I continue to improve. And your post definitely boosts my confidence level. I believe that we are definitely onto something here. This may be the missing part of the puzzle that explains why some members, despite making drastic diet changes, and working hard to do everything right, are still unable to reach a satisfactory state of remission. And it certainly seems to offer a solution for various neurological problems that may or may not be satellite issues associated with MC.

This may add another level of complexity to the treatment of MC, but if it can provide additional treatment options after all other options have been exhausted, then it seems well worth pursuing (for those who may need additional treatment options). And I agree that Gabes' innovative thinking, and her continued commitment to "progress, not perfection" makes her an engine of progress, and she inspires us to keep looking for additional solutions.

Again, thank you for your valuable input.

Tex

[Rosie]

Tex, I have been meaning to post an update, but was waiting to make sure the improvement I got from the active B vitamin supplementation held up long-term. We have all had the experience where something seemed to work, perhaps due to the placebo affect, but then fell apart, so I understand your wanting to wait with your own observations. I didn't go into a lot of detail in the previous post, but my hand inflammation improvement was really interesting. The day after I took my first active B vitamins dose, my hands felt much sorer and I was concerned. The next day they felt much better, and by day 4 they felt better than they have in 10 years! I have never encountered such a fast response to anything! And it was totally unexpected, as I have never read anything about B vitamins having that sort of affect. I'm just very grateful..........

The thyroid connection is also interesting. I have read about body builders and others getting Vitamin B injections to boost energy. Now I wonder if part of its affect is to enhance the effectiveness of thyroid hormone, at least temporarily.

It's been over 5 years now since I was diagnosed and found this board. I continue to do well and am still gluten, dairy and soy free. There are a few other foods that I avoid that seem to give me minor problems, like oily fish and coconut oil. But I freely eat raw fruits, veggies, nuts, and all meats. Over time my diet has evolved so that I don't really eat much in the way of baked breads and other stuff made with gluten-free flours, so it has gotten more "Paleo", although I'm not strict and have rice, corn and potato products. Newcomers might wonder how it goes over the long term, and whether its possible to add major offenders back. Well, I have had just enough accidental exposures, mainly at restaurants, that I'm not tempted to try any deliberate testing. I seem to be most sensitive to soy. However, I have healed enough that when I do get an exposure, the D only lasts for a few hours and an Imodium or two puts me back to normal. So while I don't appreciate getting exposed, I know that if I do it's only a minor inconvenience and not the start of a long-term flare. So that makes me more relaxed when eating away from home. I'm very satisfied with my food choices, and it doesn't bother me to watch others enjoying breads, ice cream, and other deserts. I've made my peace with my reduced choices and my renewed health makes it a worth-while trade-off. I am physically active, go to exercise class, walk and hike and play golf with good energy. I actually feel better now than I did 10 years ago, and this forum is the main reason!! Thanks, Tex!!

[Jeanie]

Tex,

Thank you for your quick and excellent response. I had a big-time problem with my thyroid a few years back. My chiropractor had me set up an appointment with a biochemist at his office. She did some testing and told me that my thyroid was week so she put me on T100 for about 3 months after which time I had gone in to see an Endochronologist because I was feeling pretty miserable. They did some blood tests and I was very much hyperthyroid. He took one look at the bottle and said never take that again. I quit it immediately of course and I took some meds that he prescribed and in two weeks I was much better. Before long I was back to normal but I probably should have it checked now because it could have changed again. That was a rather scary time. I felt so weak I could barely get out of the shower.

By the way I have a cat that has hyperthyroidism. I give him pills three times a day. He is always drinking water and I suspect it's because of his illness. He is my third cat that has had it. Think a dog ties you down?

My holistic doctor has me taking FolaPro which is 800mcg of L5Methytetrahydrofolate tablets. I am also taking 1000mcg L5MTHF lozenges of the same thing. Is that possibly too much? I think I need some new blood tests.

Thank you again.
Jean

[Beeka]

Another newbie. Diagnosed by biopsy 3 years ago. In 6th flare since then. Age 60, rapid wt loss 7lbs 3 weeks. Petite to start with. Fatigue extreme. Serious outbreak if excema. Horrible diarhea. Doc rx is Cholestyramine maximum dose 3 times a day with crazy good and med regimen. Have that horrible liquidee feeling in gut all the time. Can't leave house. I don't want to take the steroids. Anyone else on cholestyramine? For how long? Imodium no longer works, the Cholestyramine is giving some relief but still losing weight. Anybody share their experience with cholestyramine?

[Gabes-Apg]

Hi Beeka,
None of us enjoy MC entering our lives.....

My GI prescribed cholestramine for me, used in conjunction with Imodium equiv. At first he said to take 8 Imodium a day. There have been a few people that were prescribed cholestramine.

Same day, I found this forum, did loads of reading and realised diet changes were the key to long term success, within a week I was gluten free, dairy free, low fibre, no greens, no salad, no fruit, just eating well cooked meat and veges. I was able to get off the meds within 2 -3 months.
Also confirmed that yeast and soy were an issue, eliminated them, and progressed from there.

Things like the cholestramine reduced the bike acid, which reduces the liquid in the intestines, but this is not treating the root cause of the inflammation, or helping you to heal.

Please read the posts aimed at new people, and the subsequent discussions, there are quite a few new people that have posted in the main message board in the past couple of weeks, if you read through these posts it will help to understand what living with MC is all about.

Hope this helps

[tex]

Jean,

You mentioned weakness. Since you brought it up, I also noticed that my legs seemed unusually weak whenever I would have to get up during the night to go to the bathroom. In fact my left leg usually seemed to be half-asleep, and it didn't work worth a hoot. So apparently that's another symptom of thyroid overtreatment.

My holistic doctor has me taking FolaPro which is 800mcg of L5Methytetrahydrofolate tablets. I am also taking 1000mcg L5MTHF lozenges of the same thing. Is that possibly too much?

It might be if you do not have any of the MTHFR gene mutations. But if you have any of those gene mutations than what you're taking would be a relatively conservative dose. Metanx contains 3,000 mcg of L-methylfolate calcium, and the labeled dosage is 1 or 2 capsules per day. I have never taken more than 1 per day. I have a couple of the heterozygous mutations, which supposedly correlates with about a 30 % loss of normal methylation ability, for the MTHFR A1298C gene. I would assume that if one had a homozygous mutation (which correlates with about a 70 % loss of methylation ability for the MTHFR A1298C gene), then the proper dosage would probably be 2 per day, at least for long enough to correct any existing deficiencies. 2 Metanx capsules would contain 6,000 mcg of L-methylfolate calcium, but that's a rather strong dose.

You're very welcome.

Tex

[tex]

Hi Beeka,

Welcome to our Internet family. Gabes is correct, the cholestramine will treat some of the symptoms, but it certainly will not address the cause of the symptoms in the first place. With MC, the persistent cause of the continuing inflammation is food sensitivities that cause us to produce antibodies. The only way to stop the symptoms once and for all is to change our diet, so that's what we do. If we avoid all of the foods that cause us to react, then our gut can slowly heal, and as long as we avoid those foods in the future, the inflammation will not return (and neither will the MC symptoms). It takes some dedicated lifestyle changes, but the relief is definitely worth it, because it frees us from being chained to the bathroom, and it eventually eliminates all of the other symptoms also (such as the eczema you mentioned). Eczema is almost always caused by a sensitivity to either gluten or casein (or both).

Many of us here have never taken any medications to treat MC, but we have been able to achieve remission by diet changes alone. I've been in remission for over 10 years now (by diet alone), and many, many other members here have had similar success.

Again, welcome aboard, and please feel free to ask anything. We will help in any way we can, so that you can get your life back.

Tex