Severe food intolerance that goes away when supplementing with B12 - why?

[hb8847]

About 8 years ago I began to experience a worrying cognitive decline and severe depression. This gradually worsened over the course of a few years and nothing I could do would reverse it (medication, therapy, etc)

Eventually this started to get better once on a whim I decided to radically alter my diet (giving up gluten, dairy, sugar and processed foods in particular - I had already given up alcohol and caffeine several months prior to no avail).

This was a big eye opener to me as prior to this point I had had no physical symptoms - just cognitive and 'mental' - and it showed me the root of my problems could be related to food and potentially the gut.

This was 2014. After about a year of gradually getting better I then suddenly came down with what felt like a heavy fever. I had aches in my joints, my voice was so hoarse I could barely speak, I had a full body fatigue, and had developed some eye-coordination problems that made it difficult to read.

I didn't get better from it. In fact I gradually got worse and worse in this regard to the point where I developed severe CFS and would be out of breath after minor activities like brushing my teeth.

Long story short - I have since managed to turn things around somewhat by working with a gut specialist to rectify a suspected bacterial dysbiosis. In particular I spent a long time taking antifungals which seemed to help considerably.

I have also identified with the help of a doctor that I have a bad histamine intolerance, likely also caused by the bacterial dysbiosis.

Towards the end of this treatment however I noticed I began having problems with foods that are low histamine and previously hadn't been an issue. Now it wasn't only gluten and dairy etc but pretty much all foods I could try - things like chicken, organic vegetables, anything I tried I would have reactions to and it was making my life intolerable.

The only way I could endure would be to go a few days not eating anything to let everything settle down. This sensitivity would extend to medications, and even the capsules of supplements would give me bother. All this made me suspect I had developed some autoimmune condition.

I have since found out that these sensitivities go away if I supplement with B12. Specifically it has to be methylcobalamin. I have taken a genetic test which has confirmed I have MTHFR variants that make me susceptible to a B12 deficiency. Interestingly though I also develop problems if I also supplement with methylfolate - I get bad brain fog and what feels like heavy inflammation.

This has led me to suspect that I still have bacterial dysbiosis - perhaps worsened by the removal of fungus but without replacing with healthy bacteria - and which is simultaneously preventing proper absorption of B12 whilst itself producing an excess of folate. (Hence explaining why B12 helps but folate hinders).

1. I'm wondering whether anyone has any insight as to what specifically might be going on here with the B12, such that it pretty much immediately resolves my food intolerances, and without which things suddenly start to become problematic really fast?

Currently my issue is that supplementing with B12, whilst is essential in preventing food intolerances, seems to lead me to 'overmethylate' at even a low dose, which furthers my inflammation. Essentially I have high inflammation regardless of what I seem to do with B12.

2. It feels to me like I have an autoimmune condition, and whilst the long term solution is likely to be found by resolving my gut dysbiosis I'm wondering if anyone has any experience here with immunosuppressants? Are they an option I should be considering?

Thanks in advance.

 

[Carl]

Taken from wikipedia revision history after it disappeared from the vitamin b12 wikipedia page:

High-dose administration of Vitamin B12 has been additionally validated to stimulate the activity of the body's TH1 suppressor T-Cells, which then down-regulates the over-production of the allergen antibody IgE in allergic individuals.

<ref>{{Cite journal|author=O'Conner, Richard D. M.D. |title=FDA investigational New Drug IND No. 30,488|year=1990}} (link needed)</ref>

Revision as of 00:17, 16 May 2015 (edit) (undo)

CandleInTheDark (talk | contribs)

(??Medical uses) Information removed!

More suppression by drug company supporting people no doubt. Note the username. lol


I had good results with very high dose methylcobalamin around 20mg/day where it eliminated my food intolerances which meant that I could eat slightly more normally for the first time in years. Be aware that vitamins need to be balanced or problems can occur.

You might try Cordyceps which can be helpful in normalizing immune function and lowering/normalizing cytokines. A large dose before bed can help sleep with a smaller dose during the daytime. It is available as an extract of cordyceps militaris is what is usually used.

 

[MTpockets]

Vitamin b12 is one of the things responsible for stimulating acid production in the stomach. It will also boost your immune system helping you fight off pathogens that may be causing you to produce histamines.

 

[MTpockets]

Regarding your overmethylation, try taking hydroxycobalamin instead of methylcobalamin. Certain types of b12 work better for certain people. Those who have MTHFR mutations are especially sensitive to what kind of b12 they take. I find methylcobalamin overmethylates me as well. But I do fine with hydroxycobalamin.

Since you have MTHFR you will need to take a methylfolate as well. But don't start it right away. You need to get your b12 levels up before you slowly start taking very small doses of folate. I like to loosely follow the Ben Lynch protocol. He has a lot of information for free on his website, it's worth taking a look at.

You will have a healing crisis as you start taking the folate. Get your b12 up first and GO SLOW with the folate. Don't push it. Your body is going to jump in to detox mode and you will have to support it. Rest, drink lots of water and watch your electrolytes. There are some good threads on this forum for dealing with MTHFR. It's a whole issue in and of itself.

 

[hb8847]

Regarding your overmethylation, try taking hydroxycobalamin instead of methylcobalamin. Certain types of b12 work better for certain people. Those who have MTHFR mutations are especially sensitive to what kind of b12 they take. I find methylcobalamin overmethylates me as well. But I do fine with hydroxycobalamin.

Thanks for the suggestion but I find that hydroxy does nothing or very little for me. I've even tried injections of it. Essentially if I go too long without methylcobalamin in particular all the food allergies come roaring back, so until I find a better solution I'm stuck with finding a way with that.

Since you have MTHFR you will need to take a methylfolate as well. But don't start it right away. You need to get your b12 levels up before you slowly start taking very small doses of folate. I like to loosely follow the Ben Lynch protocol. He has a lot of information for free on his website, it's worth taking a look at.

Again, I appreciate the suggestion but as I mentioned in my opening post I can't tolerate methylfolate at all - I get incredibly overmethylated from even the tiniest dose and it's effects are completely unmanageable. Having done some research this can apparently be common for people with SIBO, as some bacterial strains actually produce folate in the gut whilst simultaneously blocking absorption of B12, and so taking any folate can quickly push you over into excess. This definitely chimes with my experience at least.

Thanks for the Ben Lynch suggestion, I have been using his site for a while and find it useful.

 

[MTpockets]

Have you thought of combining b12 types? I know some people like the effect. Also have you looked into low potassium? Just throwing things out there. Good Luck, keep us updated if you find something that ends up working.

 

[hb8847]

Have you thought of combining b12 types? I know some people like the effect. Also have you looked into low potassium? Just throwing things out there. Good Luck, keep us updated if you find something that ends up working.

Yes so currently I'm taking a sublingual tablet of methyl cobalamin and adenosyl cobalamin split into equal halves, by Cytoplan. I've found that even that significantly ups my inflammation though.

Or at least I suspect it's inflammation - I definitely need B12 for the food intolerances but I even the smallest amount seems to set me off. Bit of a catch 22.

If I come off the methylation supplements for long enough then things seem to settle down gradually - I eventually begin to feel pretty normal again (and much better than before taking the B12) but if I leave it much longer beyond that point I start getting food intolerances again.

Interesting you mentioned Ben Lynch's site as I'd seen he recommends a particular multivitamin for people to start with if they're very sensitive to methylated supplements. It's called 'optimal start' and I gave it a go today for the first time - early days but it seems to be having a positive effect. I'll relay back with any updates.

Also thanks for the advice re potassium. I do get very specific symptoms whenever I overdo the B12 supplements (muscle spasms, nausea, thirst etc), which I suspect is electrolyte imbalance and I make sure to take electrolytes which seem to quell it.

 

[MTpockets]

Oh I really hope you've found something that works for you. Fingers crossed.

 

[hb8847]

Thank you so much.

 

[mindgonemad]

I ended up at a digestive clinic last year where they couldn't find anything wrong other than the start of an ulcer. The downside was they put me on Parriet to reduce the acid in my stomach and around a month in I had to stop taking it as everything had become so severe I couldn't tolerate anything. Not sure if that was the acid reduction combined with leaky gut and/or some form of sibo or something completely different. I have recently discovered that saturated fat causes the same intolerance and makes it so I can't handle any salicylate at all. Not sure how they are related.

I had a period a few years ago were things weren't anywhere near as bad as they are now and I was taking b12 but stopped as I was completely up and down and wasn't sure if it was helping or hurting. When I went to the gut clinic they tested b12 and it was so high it was off the scale even though I hadn't taken it for a year or two. Can't explain it.

Good luck.