Going vegan with PA

[Siobhan1965]

Hi everyone,

I was vegan when diagnosed with PA around this time 4 yrs ago. I changed to veggie under GP instructions, still felt awful and have been SI for past 18mths, twice weekly.

My question is, has anyone turned vegan post diagnosis and treatment. If I am SI regularly will it counterbalance the tiny amount of B12 I may be absorbing in my gut?

Any advice welcome

S

[JanD236]

If you have PA you need to obtain your B12 from injections and as such your dietary intake is irrelevant.

I hope your GP has been giving you injections since your diagnosis?

[Siobhan1965 in reply to JanD236]

Hi, GP surgery gives me injection every 8 weeks after a battle but couldnt cope on that so SI too. Feeling better than I have in ages so wondering whether to try vegan again.

[terrybraden in reply to Siobhan1965]

Siobhan 1965

I am vegan and I supplement. I was vegan before my deficiency. Are you aware that you don’t have to be a vegan or a vegetarian to develop a B12 deficiency? I had a friend who was a meat eater and she developed PA.

So if you go vegan and supplement, I don’t see a problem.

[Siobhan1965 in reply to terrybraden]

Thanks Terry, had a battle with the GP at diagnosis. I said my diet was irrelevant to having PA and she strongly disagreed saying I was killing myself. I gave in under family pressure and reverted to vegetarianism but shouldn't have.

[terrybraden in reply to Siobhan1965]

Hi Siobhan 1965

I was so deficient that I had neuropathy from the crown of my head to the souls of my feet. I have not gone back to vegetarian, I am still vegan. I am back to my normal self with supplementation.

Most doctor’s don’t study nutrition, they just outright recommend meat to get your B12. Our soil used to provide B12, but it’s depleted and it used to be in the water, but it’s polluted. (B12 is a bacteria by the way).

It’s NOT at diet problem, it’s an absorption problem. I am gluten and dairy intolerant. Plus I used to take an H2 blocker which neutralized my stomach acid and I developed the deficiency. (I had a small piece of turkey at Christmas and I got such a stomach ache.)

Betaine and lemon juice may help your absorption issues. I took it with meals.

Best to you.

[Siobhan1965 in reply to terrybraden]

Thanks, my neuropathy still lingers but getting much better. Occasionally have a few days where I'm experiencing pressure on my forehead and feel a bit shaky and unsteady but huge improvement on before.

PA runs in my family so it was probably always going to kick in.

Will give the Betaine a bash though.

[Gambit62 Administrator]

If you have PA then diet is irrelevant.

On average 99% of your B12 is absorbed in the ileum. PA is an auto-immune disorder that attacks and destroys this mechanism, meaning that you would not be able to get enough B12 from your diet regardless of how much B12 there is in your diet.

Even if you don't actually have PA but your deficiency was originally dietary, the injections may have fundamentally changed the levels of B12 that you now need in your blood, resulting in the need for more frequent injections to keep it really high.

Significant numbers of people react to high serum B12 in a way that makes the process that allows B12 to move from your blood into cells much less efficient - so they then need much higher levels of B12 in their blood to make sure that enough gets through to their cells.

[Siobhan1965 in reply to Gambit62]

Thanks Gambit that's helpful. I had the PA diagnosis then told a year later I no longer had it! It must be CFS/anxiety/depression and or menopause. Yeah, I knew it was PA. This forum has been great for reassurance.

Got fed up arguing with GP so just started with SI but note I now seem to need really high levels to stay well. No big deal though and I up my jabs when needed. I'm definitely significantly better lately.

Will try the change of diet in January.

[Alfabeta in reply to Gambit62]

Hi Gambit

Like so many on this site, I rely on your in depth knowledge to help me understand my condition.

I regularly read of complaints about doctors not providing injections of b12 beyond the 12 week cycle. Given your view that, in some sufferers, once injections start then injections take over from the dietary digestion of b12 are doctors not just trying to avoid this absorption problem from occurring?

[Gambit62 Administrator in reply to Alfabeta]

Alfabeta, not really sure what you are trying to say.

If you are asking if 3 monthly injections are about avoiding raising serum B12 to prevent a response that makes the process that allows B12 to pass from blood to cells then the answer is a categoric no. The initial injection will have raised serum B12 and kicked off the response. Maintenance injections need to be at the frequency that keeps symptoms at bay.

[Alfabeta in reply to Gambit62]

I think you’ve answered my question - one injection means that injections become essential as the body can no longer acquire b12 in a natural way - is this the case?

If it is the case, is this why one reads of doctors regularly promoting supplementation rather than injections?

Does it also mean that I am wasting my time taking b12 tablets and foods fortified with b12?

[Gambit62 Administrator in reply to Alfabeta]

not everyone reacts to high serum B12 in this way - the majority of people don't.

Even if you do passive absorption of mega doses may still be enough to maintain levels, if started just after an injection.

[cdragin in reply to Gambit62]

Gambit62, do you have any references for this information?

"Significant numbers of people react to high serum B12 in a way that makes the process that allows B12 to move from your blood into cells much less efficient - so they then need much higher levels of B12 in their blood to make sure that enough gets through to their cells."

I'd like to read up on it before I see a haematologist later this month.

[Gambit62 Administrator in reply to cdragin]

Not entirely clear but there is this document relating to use of high serum B12 levels as a diagnositic tool

academic.oup.com/qjmed/arti...

Some of the studies referenced look at the incidence of functional B12 deficiency in patients who had high serum B12 levels due to conditions like diabetes - one study looked at 1000 patients and, If I remember correctly found a significant number had functional B12 deficiency

don't know if this link will work but

bloodjournal.org/content/bl...

[Naturegirl8]

Hi Siobhan, I agree with what others have said about diet being irrelevant to B12 status, and to continue injections. I've been vegan for 47 years with excellent health, energy, weight etc throughout until 10 years ago when I had a brain injury (Fell off bike - quadruple skull fractures). It also coincided with menopause and everything went out of whack, energy concentration lost, eventually diagnosed with CFS and Fibromyalgia. Somewhere in there I realised I was getting the classic B12 deficiency symptoms like twitching eye, tingling fingers, sore tongue etc and went to GP and asked for B12 blood test. Was put on injections 3 monthly, which helped a bit for the first week then exhausted again, as we're all familiar with. I begged for more frequent but was told its unnecessary, all in my head...Eventually discovered this great group and was empowered to buy ampoules and begin self injecting. Trying to keep this short, but wanted to thank you for striving to return to your vegan life way, and remind you of the negatives of vegetarianism which is bad for cows and hens, the environment and human health <3

[Siobhan1965 in reply to Naturegirl8]

That's so encouraging, thank you. I've just had a cheese fest over Christmas and now my internal guilt fest follows...

I think I just needed reassurance I wasn't risking going backwards again as my GP was so quick to point out my diet wasnt helping my PA. SI has given me back control. Time to do same with my diet.