[Meowser01]

Hi everyone. Newbie here. I've read almost this entire forum and wanted to post my story. I began having GI issues a few years ago, was put on a PPI that I took off and on for 2 years. Come to find out I had to have my gallbladder removed (source of GI issues). After surgery my life has gone downhill fast. I was diagnosed with PCS and placed on cholesterol binding meds. I am not a fan of pills, period, so I took myself off & researched natural options. At this time I was also placed on Nexium for chest pains from GERD. Began taking digestive enzymes, probiotic and DGL Licorice daily. GI issues subsided. Fast forward four months, developed a raging sinus infection that I couldn't get rid of three antibiotics later. Felt like death. GP referred me to a Hematologist as my blood work "was fine". Hematologist discovered low Ferritin and very low B12 (167 in October 2014). I started monthly B12 injections and had a 5 hour iron infusion for the anemia (Ferritin). No ride in the park. Felt worse after infusion. Fast forward three months, questioned why monthly blood work did not show B12 levels so they started testing my B12. In three months I had only increased to 267. I went back and demanded more frequent injections and will now get them 2X a month. About a month ago, I did more research online and discovered Jarrow's Methyl B12 sublinguals. Ordered those, started them daily (with or without food). Blood work last week showed B12 level was 959. I also read somewhere to stop the oral B12 one week before blood work or results would be skewed. Is this true? Thrilled level is much higher but I still feel like crap. Hands/feet still freezing, hand tremors, numbness/tingling in arm & leg, dizziness, I could go on and on. I had anxiety in my 20's, reoccured with B12D now at 40 with a vengeance. Dr has placed me on an SSRI for the anxiety, I have yet to feel the results almost 3 weeks later (but I know it takes time). Prior to gallbladder surgery, NEVER had a single health issue, EVER. Hence the life downhill statement. I feel like my relationships are stressed (work, family, boyfriend) as just feel like *&%$ most of the time.

Also want to add due to PCS, I eat a low fat, low carb diet, avoid processed foods when I can, eat minimal veggies & fruits though.

Thrilled to find & join a current message board on this issue (although I do not have PN, but have often wondered if I should see a Neurologist due to side effects from the B12D.

Any insight would be greatly appreciated. Thank you again for the wealth of knowledge on this thread.

[MelodyL]

Hi, I read your post with much interest. I have been taking 5000 of the Methyl B-12 every day for about 7 years now. I have never stopped taking it before a blood test. I have diabetic neuropathy but have no symptoms (I attribute this to my faithfully taking my Methyl B-12). Now I don't know if you should do this or not do this, and I don't know what PCS is? And God Bless you for following your diet. That must be SO hard.

But I am glad your B-12 levels are up. I started with Jarrows but now I get it from Puritans Pride because for me, it's more economical.

I wish you well.

Melody

[glenntaj]

--that B12 levels can come out artificially inflated on a serologic test if you have been taking oral supplements.

But the fact that even with supplements you "only" came out at 959--not a very high level for someone who supplements (I do 1000 micrograms of B12 three times a week, and also take a general B supplement with 125micrograms of B12 each day, and my B12 levels generally measure in the 1500-1800 range--enough so that I have to explain this to doctors) indicates to me that you were VERY low to start with (as your previous tests seem to indicate) and/or you are still perhaps having some trouble absorbing as much B12 from the supplements as you could.

The theory behind massive oral B12 dosing is that you can passively absorb a few percent of a very large dose and that will be enough to build stores. A daily 1000 microgram (1 milligram) dose can normally provide somewhere around 10-30mcg of B12 even if you are passively absorbing at 1-3%, which are figures often given. Since the daily minimum requirement of B12 is somewhere around 2-8mcg, this is enough to start rebuilding supply. But, there are many things that can interfere with absorption. Certainly, a history of PPI or H2 antagonists can inhibit absorption--acid is needed to break B12 out of foodstuffs and also for fullest absorption even from supplements. And, one should take one's B12 apart from anything else, as it is very easy for the cobalamin molecule, which is the largest molecule our body regularly uses, to be complexed up chemically if one takes it with food or other supplements (two hours after eating or one hour before is likely a good idea).

I also suspect those cholesterol binding meds were not doing your nutrient absorption ability any favors.

The neurologic symptoms, and many others, could certainly be explained by the low B12 levels, and it's likely you may be low in other vitamins/minerals as well, given your history. I'd definitely have your magnesium, calcium, and D3 levels checked as well--the iron you already know about. (Iron deficiency is not unusual in adult women who have heavy menses, but iron and B12 deficient people should also be worked up for irritable bowel syndrome, Crohn's and particularly Celiac.)

[Kitt]

Welcome Meowser01.

[mrsD]

Cholesterol binding meds? If this is the correct term, these drugs are like magnets and bind lots of things to them.

What is the name of this medication?
Questran and Colistid and Welchol are examples.

The statins chemically block cholesterol and are different. If you are on a statin, there should not be much or any effect on B12.

Nexium and other acid reducing drugs do lower B12 however.
They also block iron absorption too. (and folate, and calcium and zinc, and magnesium and some other trace minerals).

Oral B12 must be taken on an empty stomach or else it won't be well absorbed at all, lost in the food present.

Eating low fat reduces the chances of getting enough Omega-3's which are needed by the nervous system. Today most low fat diets have been discarded because they do not support normal physiological processes needed for health.

Do you have pernicious anemia? That is a lack of intrinsic factor. If this factor is gone, due to autoimmune attack on those cells that produce it, you will never get B12 from food, and will always be low. So establishing a good oral habit and dose --5mg would be best-- can keep you normal and avoid the shots.

If you have low stomach acid, and are not absorbing iron, you would feel quite ill. Loss of the other nutrients I listed here, also contribute to feeling ill. B12 is not the only nutrient affected by low stomach acid.

[Meowser01]

I currently take 5000mcg daily. I receive 1000mcg via injection once a month which will start bi-weekly next week. Yes Mrs B, I was on Welchol. My blood test showed low Calcium last week so I have started a supplement for that as well. Magnesium/Potassium also good, but have been supplementing those as well. I do not have periods as I am on a BC injection (which also lowers B12). No clue on PA/Intrinsic, was diagnosed with Iron Deficiency Anemia and low B12 initially. Seeing my Gastro next week to schedule an endoscopy for more answers hopefully as I have daily pain in my right side that radiates to my back.

I eat low fat because I cannot digest fats due to having no gallbladder. I also have bile acid reflux in addition to acid reflux. Lucky me. I do not eat this way to lose weight. My diet is so limited. I refuse to give up decaf iced coffee at Dunkin

Melody my diet is not easy, eating like this has essentially ruined my life. When I eat out, I have water unless there are options available to me. It sucks.

Thanks for all of the input!!! I learned so much from reading past posts on this thread, specifically from Mrs B and Melody.

[jenng]

How about a B-complex vitamin? Do they need to be taken on an empty stomach? The bottle says to take with food.

[MelodyL]

You have no gallbladder? I have no gallbladder either. I had two gallbladder surgeries in two days back in 1999 because my gallbladder was stuck to my liver. Not a pleasant week back in the day. But I was told that the liver takes over the function of the gallbladder in digesting fats. Not that I eat a lot of fat. I eat low carb, healthy fats and I also grow my own sprouts in my house. Best thing I ever did. I grow broccoli sprouts, radish sprouts, fenugreek and other sprouts. Been doing this for YEARS. I made the best sprout salads. Add a dash of salt and pepper, some garlic powder, a splash of extra virgin olive oil, and then add some salmon or some tuna and you have a nice lunch or dinner.

Some people think it's rabbit food but for me, it literally makes me feel good and it feeds my body. I have lots of youtube videos up on sprouting. If you ever are interested on this way of eating (lots of vegetarians and vegans live on these foods and are quite happy), just let me know. I'll send you a link and you can discover the MAGIC of sprouting and microgreening.

you'd be surprised how good this is. No side effects, no digestion problems, people with irritable bowel say that eating this way has stopped their chronic constipation/diarrhea, etc.

But some people can't do this. They are the steak and potatoes people.

I'm a sprout person.

rofl.

Be well

Melody

P.S. I go to Dunkin every single morning. I HAVE to have a nice hot cup of coffee. There are all these young people ordering lattes and frapachinos an mochachinos and double shots of expresso, etc. All I'v ever drank at Dunkin is a regular cup of their hot coffee. And even when it's minus something outside, people will come in and order an Iced Latte. I don't even know what that is but it's sounds too cold for me. lol

[Meowser01]

OMG we are gallbladder twins. HA. My surgery was just over a year ago and just like you, mine was so dead they had to scrape it off my liver. I also have a hiatal hernia so the excess bile flows up into my esophagus YAY. I often wonder if my side pain isn't from the surgery (scar tissue).

LOL @ Dunkin. I can't do hot, goes right through me since I lost my GB, hence the iced coffee. I do get a shot of caramel in mine too. Obsessed with that daily. About to leave now to get mine ha.

Re: sprouts - I've read your previous posts on it, sounds very interesting, yet, I am a meat/potato girl. Well, chicken & potato. But thank you!!

Originally Posted by MelodyL

You have no gallbladder? I have no gallbladder either. I had two gallbladder surgeries in two days back in 1999 because my gallbladder was stuck to my liver. Not a pleasant week back in the day. But I was told that the liver takes over the function of the gallbladder in digesting fats. Not that I eat a lot of fat. I eat low carb, healthy fats and I also grow my own sprouts in my house. Best thing I ever did. I grow broccoli sprouts, radish sprouts, fenugreek and other sprouts. Been doing this for YEARS. I made the best sprout salads. Add a dash of salt and pepper, some garlic powder, a splash of extra virgin olive oil, and then add some salmon or some tuna and you have a nice lunch or dinner.

Some people think it's rabbit food but for me, it literally makes me feel good and it feeds my body. I have lots of youtube videos up on sprouting. If you ever are interested on this way of eating (lots of vegetarians and vegans live on these foods and are quite happy), just let me know. I'll send you a link and you can discover the MAGIC of sprouting and microgreening.

you'd be surprised how good this is. No side effects, no digestion problems, people with irritable bowel say that eating this way has stopped their chronic constipation/diarrhea, etc.

But some people can't do this. They are the steak and potatoes people.

I'm a sprout person.

rofl.

Be well

Melody

P.S. I go to Dunkin every single morning. I HAVE to have a nice hot cup of coffee. There are all these young people ordering lattes and frapachinos an mochachinos and double shots of expresso, etc. All I'v ever drank at Dunkin is a regular cup of their hot coffee. And even when it's minus something outside, people will come in and order an Iced Latte. I don't even know what that is but it's sounds too cold for me. lol

[mrsD]

Hormones can affect many nutrients:

Here is a list:
http://www.chiro.org/nutrition/ABSTR...ceptives.shtml

With no gall bladder your fat intake has to be spaced out and not in huge meals. But you should be able to tolerate some fats. You should still be making bile, only not storing it. If your bile seems sluggish or you still get "symptoms" with many foods...try using a gram a day of Taurine. This amino acid grabs onto the cholesterol in the bile, and helps it move out better.

Your Welchol only grabs the bile AFTER the bile exits the duct.
The taurine helps at the liver level.

I'd take the nutrients in between the Welchol and not with it.

Also check your magnesium...if it is oxide it is not being absorbed (it remains in the bowel which with the constipating Welcol may be necessary for you at times). Get another type, either SlowMag or a chelated form for systemic absorption.
You can also get rub on lotion now, the new Morton Epsom Lotion, this bypasses the GI tract entirely and is absorbed thru the skin. Many of us find it very helpful for neuropathy pain.

WalMart, Walgreen's and online at Amazon are the most common places to find it. Not all stores carry it locally.