Vegetarianism and PA / IDA: Hi again... - Pernicious Anaemi...

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Vegetarianism and PA / IDA

still_elsewhere
still_elsewhere

Hi again, everyone — it feels like I’ve been posting too much, but I have so many questions (so thanks for your patience!).

I’m in the initial stages of treatment for both PA and IDA, so I don’t know much but have been reading a lot and waiting on an appointment with a hematologist. I’ve also been a vegetarian for 16 years. I eat a super healthful diet filled daily with just about every iron-rich plant-based food out there, but obviously my levels of both iron and B12 are still low.

So, I have two questions (one more general than the other):

1) Is PA always linked to autoimmune gastritis? If so, would AG potentially explain my low iron as well as the lack of B12?

2) Is my vegetarianism something I need to be concerned about given my body’s inability to make proper use of certain vitamins? (I nearly LOL’d when I got the diagnosis, as it seemed quite ironic that I can’t absorb B12 no matter how much meat I eat, but now I wonder if there are other vitamins I need to be concerned about...? I’ve read enough to have purchased low-dose folic acid, vitamin C, and vitamin D supplements , but I think I should wait to begin taking those until the baseline tests are done?)

I’m worried because vegetarianism is actually quite an important part of my identity (I never preach or anything, but it’s for deeply-seated ethical and environmental reasons), and I don’t want to eat meat unless it’s vital for me to do so.

Thanks, as always, for your time!

46 Replies
oldestnewest

I don't know the answers to any of your questions but I just wanted to highlight that when taking Vit D you should also take K2 MK7 and magnesium. They are important cofactors that help your body get the vit D to where it should go. You should also retest your levels after 3 months. Vit D is fat soluble so your body can't get rid of any excess.

Just in case you weren't aware! :)

I wasn’t aware — thanks so much!

You're welcome. :)

I’ve been veggie since I was 9 (30 years) and as far as I know the only one to be mega wary of is b12 because it comes from animal and dairy products naturally and isn’t found in veggies. I’m still learning myself as far as P.A. is concerned, so there’ll no doubt be someone along soon who knows a lot more than me. I was told by the nurse practitioner that I also have deficiencies in vitamin D (hardly surprising given the year so far!) and iron, but like you I also eat a lot of veggies on a daily basis (I order a weekly veg box and cook from scratch which has been the good thing about lockdown). However I was also told that 3 deficiencies is unusual, but I always was a bit odd!

Thanks for sharing! (30 years veg. is something to aspire to!)

My vitamin D is low-normal (58), at least to my understanding — but I’ve also heard winter hurts those levels, and I’m newly not running outside anymore (want to reduce energy expenditure until my iron levels rebound), and also there may be a Covid connection (?) and I work in a school that’s recently reopened with cases, so I thought it might be a good thing to have on hand...?

I’m in the odd club too. 😂

It’s where all the cool people hang out 😆

Of course it is. I will share a little of my weirdness - carrot batons taste much nicer than when cut in circles. 🙃

I think there is a connection to low/deficient vit D, B12, ferritin, and folate and autoimmune diseases... It's astonishingly common in those with hashimoto's too!

I have PA .. auto immune I mostly follow vegan diet vegetarian over 30 years . Healthy diet . I consulted a dietitian to make sure enough protein and will never eat meat .

Ps I also have hashimotos . As do a large percentage of my maternal relations . None are veggie or vegan

Interesting! Yeah, I was interested at the proportion of veggie-friendly replies, and was wondering if there was any way we’d gotten ourselves into this mess — seems unlikely, though.

I'm a vegetarian. 40 years. Since my then three year old daughter welled up when I served a chicken to the table, and then cried that she would rather see it running around.

I eat lots of dairy products. I also love marmite to drink.

I was diagnosed with b12d and PA last July.

Aww, your daughter sounds empathetic and adorable.

And yes, it looks like I should maybe try adding some more fermented foods like Marmite to my diet! (I mostly just have yogurt.)

😂 I post a lot and It’s a lovely way to connect and share. You are allowed to choose what you eat and it would be lovely if people were accepting without explanation.

Right my knowledge is iron (Ferritin) tablets to be taken with Vitamin C helps absorption.

The long fancy name for P.A. is Autoimmune Metaplastic Atrophic Gastritis which can occur at any time in your life. Erm Don’t know the rest.... over to someone else

X

Thanks for the info — and the encouragement! Yeah, it’s an interesting thing to have a fairly niche illness — it’s nice to have this space to connect!

clivealive
clivealiveForum Support

Hi still_elsewhere there are other sources of B12 other than animal products and even some breakfast cereal are now fortified with it - notably Kelloggs All-Bran and of course it is found in everybody's favourite MARMITE.

You can also buy "Vegan friendly" B12 sprays from health food shops.

I wish you well

Ooh and nutritional yeast. I knew there was something I forgot to mention as a source! 🤦🏽‍♀️ I eat loads more cereal than I used to now. You can also get non-dairy milks fortified with it.

just Going through these, cereal is really good. I had very min dairy in my diet before so rarely ate cereal but I have started to eat weetabix with fortified almond milk and it’s real nice snack. And some cereals real nice with Keffir drink.

Sounds like a good strategy! (Cereal IS good as a snack — I used to eat it all the time and then just sort of forgot about it.)

Almond milk is good . I eat all the right things but it's not enough with an a absorbtion problem

Thanks so much for your reply! Yes, I think I’d always relied upon those fortified foods — I was just wondering if I should bother at all, since our problem seems to be absorption — or if that problem means we should try to ingest all we can?

I’ve never had Marmite, but I like Vegemite! They’re similar, right?

I wish you well, too!

clivealive
clivealiveForum Support in reply to still_elsewhere

We are all different still_elsewhere and it's sometimes a case of "suck it and see"

I've had P.A. (just one of the many causes of B12 deficiency) for over 48 years and a few years back whilst on holiday (between injections) I tried the B12 spray I mentioned. Whether it was physical or psychological my wife noticed that I was better able to climb the steep hills back and forth to our apartment than either she or I had expected.

It may well be that only 1% is effective but personally for me I did feel "better" and for for past three or four years has certainly done me no harm as I'm still "clivealive" at 79.

As far as I'm aware Marmite and pretty much Vegemite are the same.

Stay safe

It's good to know that P.A. is sustainable for decades as long as we have access to B12 in some form.

Thanks for sharing your experiences!

Gambit62
Gambit62Administrator

PA is an autoimmune gastritis, that attacks the mechanisms in the gut that enable B12 absorption from diet. It will always lead to a B12 deficiency but it isn't the only absorption problem that leads to B12 deficiency.

B12 is only found in animal products so if you don't eat much dairy or egg it could lead to a dietary deficiency. If you have an absorption problem then it is going to lead to stores of B12 being used faster so will hasten deficiency.

Because PA affects levels of acidity in the gut it can also cause problems with absorption of other vitamins and minerals - most commonly folate and iron so the iron deficiency is likely to be related to the iron deficiency.

There are lots of vegetarian sources of iron - though it is a bit more difficult for the gut to extract the iron. You may want to think about a daily iron supplement but suggest you talk to doctors and pharmacist.

Thanks for this information! (I think I was confused because some sources address the two conditions together, but others address each condition separately.)

Yes, fortunately I eat dairy and eggs -- but I think I'll have to reconcile myself to some kind of iron supplement. I'll check in with my doctor at my next appointment to see what he/she recommends.

Hello, it is good to know there are some more veggies out there. It is 38 years since I went vegetarian and my B12 was fine till 5 years ago. I have had Iron deficient anaemia off and on since I was 13, long before I stopped eating meat. Every so often I look at all the dietary stuff very carefully so I don’t miss anything I could do to help myself. I have tried to put some meat in my mouth in desperation but I cannot. I am a quiet ethical veggie, I don’t choose for others and I don’t shout about it but I cannot eat another being. There are so many good supplements and a huge availability of things like tofu and quorn and beans that make it easier to get all the protein you need and more vegetables than there have ever been. The trouble is that I also have Crohn’s disease and I went on the low FODMAP diet to try and help my gut. It has left me with holes in my diet and it is taking a very long time to get back to eating the green veg that has the iron. I am now lactose and gluten intolerant too but all of this has happened since the B12 problems which were diagnosed during an episode of stress induced digestive problems. I drink goat’s milk kefir with a banana and cinnamon in it to improve the flavour, every morning to keep my gut biome healthy and I do eat eggs and cheese and yoghurt which helps with the B12 but if you are not absorbing B12, there is no way to replace it without injection. I hate the modern medical practice of blaming the patient for their condition that leaves us feeling guilty for our Deeply held ethical choices . You did not do this to yourself unless you deliberately shredded your own immune system and I am sure you did not! X

Thanks so much for these reassuring words!

I love your philosophy of taking stock of your diet every now and again so as to not "miss anything I could do to help myself," and I relate very much to your inability to eat another sentient being. I love how expansive modern vegetarianism is -- yes, we have so many ways to get the nutrients we need!

I hope your Crohn's and intolerances to gluten and lactose improve as much as they can.

Nackapan
Nackapan in reply to Frogit

Yes its awful to blame a patient when their diet has kept them well for so many years .

I do think supplements are useful now. I used to think if a healthy rounded diet you didnt need them . Didnt think about nof absorbing them. !

I think adjustments need to be made if necessary. My daughter is on a very restrictive diet (digestive issues. ) she does have chicken now as can tolerate it. Needs thr protein as diary gluten and lots of other things intolerant. She likes wearing leather shoes too . my sister like you cant but she does take supplements and fortified foods. She disent think too deeply about her shoes.

We all make choices . I ate more meat to try and raise b12 and iron levels. All I raised was my cholesterol!! Just trying to prove to my Gp it is not dietary. I tried b12 tablets too.

My diet of lots of veggie meals (catering for family and friends) and I enjoy them. Lean meat . Diary. Gluten. Everything really kept me very well until the menopause. We are all different. I think I simply ran low because of enormous stress abs pushing v myself too hard. Then less stomach acid or i may have PA. Gps sometimes looking for reasons do sound like they are blaming us.

I wrote down everything I'm doing to get well .It just happens at times . No rhyme or reason. Fortunately I had a nutritionist part of a health review at work 3 years before ill. The only thing lacking was omega 3 oils which I addressed.

Yes, there are so many choices — and also ever-changing necessities — when it comes to diet. Reading people’s replies here reminds me to be grateful for all of the variety we have in modern supermarkets.

I’m so sorry to hear that you and so many others have struggled to prove to doctors that your lack of B12 wasn’t dietary. I actually had the opposite problem: talking over my blood test results, themselves the product of just a routine physical, my physician pointed out the low iron and B12, and I was like, “huh! I thought I was doing a better job, but my vegetarianism might explain those numbers.” And my GP was all, “no, I think there’s something else going on — let’s test to see if it’s an absorption problem instead.” I was unduly lucky.

But yes, I’ve heard people tend to dismiss women’s medical complaints. And there’s definitely still a larger trend of “blaming the victim,” so to speak. (Most of my problems these last few months come from having internalized those two tendencies, I think! Sometimes there’s a lot to unlearn.)

My opinion is that you must trust your instincts when it comes to meat and do what's best for you.

I'm a vegetarian and have a B12 deficiency but there is absolutely no way I would ingest toxic meat from an animal that has led a miserable existence of being bred in overcrowding circumstances, fed with grain that is laced with chemicals and synthetic supplements because it has little or zero access to it's natural world of land and not to mention the antibiotics they are given just in case they get sick let alone if they do to then being slaughtered in a way that does not kill them instantly so one could say you ingest their pain energetically also.

For me my b12 was rock bottom and I was massively sick but with time I got better and now self inject every two weeks without having to eat meat.

You will find your way.

Educate yourself from peoples opinions and science but most importantly listen to what the body is asking you for.

Good luck x

Thanks for the luck!

Yes, like you, my opposition to meat is deeply ethical, so it would be painful to have to compromise those ethics on a daily basis. It's helpful to hear from so many long-time veggies on this thread that the diet is sustainable even with P.A.

The only other supplement I can think of that hasn’t been mentioned is omega for heart health. Unfortunately (if you are vegetarian) the beneficial sort (epa/dha) is mainly found in oily fish. You can get vegetarian supplements from algae which are quite expensive. The linseed/flax omega (cheap) isn’t the type you need (ala) for good heart health so watch out for misleading claims/general internet confusion.

Bit more info here:

healthline.com/nutrition/3-...

Thanks for this recommendation! It's almost certain that I'm deficient in the type of omega you've mentioned -- I'll have to do some research on some good algae-based supplements.

I've been a veggie for 27 years, but do have dairy products. Just a note of caution that the amount of b12 in Marmite is not as much as you think. There's only 24 mcg of b12 in 100g of marmite. So you'd have to like marmite an awful lot to get your levels back up! 😉

Unfortunately there's no b12 in basic vegemite, but I believe there is in the low salt version.

Marmite is definitely on my radar after reading through the responses to this thread! :)

But yes, neither Marmite nor Vegemite are typical substances here in the U.S., so besides dairy, I'll continue to get most of my B12 from the shots (or "jabs"), I think.

B12 is from animal products - As a vegetarian myself I had to stop being vegan due to this deficiency and start to eat dairy and eggs once more. Veggie sources of B12 aren't easily absorbed or the correct type so marmite may not be as good a source after all.

Iron from food comes as:

1) Heme iron is found in anything with eyes, tail, feet etc this is readily absorbed by the body and usually ensures a good source.

2) Non-heme iron is found in plant based foods and is not as readily absorbed by the body.

Tea, and other tannins such as some wines inhibit the uptake of iron whereas vitamin c ie orange juice helps the uptake. So, have a glass of juice with meals target than tea or wine.

Make sure that you don't have any contraindications ie genetic haemochromatosis before taking iron supplements as excess iron can't be excreted from the body and can load which would cause far greater problems for you.

Only in June did I discover that I'd finally got myself out of ID w/out anaemia after about 3 years! This is due to having genetic haemochromatosis and not being able to supplement iron so I've had to wait for my body to load naturally. Thing is they'll want my blood soon if I carry on loading so I could forever be in an iron deficient state.

I've never been so ill... Bedridden for 9 months. Discovered PA at that time along with gastritis, duodenitis, ulcers and a whole host of other problems and conditions including iron-avidity and deficiency.

I wish you a quicker recovery than mine. Take care.

Edited to add - that once on b12 injections your body will be getting it by bypassing the whole digestive system. As you already know eating meat will be a completely pointless exercise as it wouldn't be absorbed anyway.

I'm so sorry that you became so sick! What a difficult experience. I hope things are better now.

I have an appointment with a hematologist next week, so I should be able to confirm that recent iron infusions and B12 shots have worked then -- here's hoping!

Nackapan
Nackapan in reply to Cinderellen

Horrible experience for you.

My friend changed from a vegan diet as found it too hard to get the right nutrition.

So glad you made a recovery.

Hope for alot of readers

T C

I'm vege and have Pernicious Anaemia too - my understanding is that we could eat it until it came out of our ears and still wouldn't absorb it anyway due to lack of instrinsic factor, so it that sense vege diet irrelevant (and more healthy in terms of more fibre, less saturated fats etc). Also lack of stomach acid with PA means a lot of meat eaters have a terrible time trying to digest meat and you'll hear of them drinking vinegar or similar with a meal to help them try and break the meat down - so perhaps just as well we're not eating it. I take an iron tablet daily and have b12 injections monthly and both levels are now consistently great, after a lifetime of fatigue caused by deficiencies of both.

still_elsewhere
still_elsewhere in reply to TFH1

Right! That was my hope/understanding, too -- I just wanted to be sure (and what a relief it is to have received reassurances here!).

I'm so glad you're finally feeling better with the tablets and injections. I'm hoping my treatments take effect soon, too.

You might be eating foods with a lot of iron in them and not absorbing enough. After all, a nail has a lot of iron in it, but won't do much for your deficiency.

Iron in meat and fish is in an easily absorbable form - haem iron. Iron in vegetables tends to be bound to polyphenol compounds that make it much more difficult to absorb.

So 100 g of steak and 100 g of spinach both contain about 2.5 mg of iron. But you'll only absorb about 0.044 mg from the spinach as against 0.5 mg from the steak - ten times as much.

So, as well as B12 supplements, I would take easy to absorb, fairly low-dose iron supplements. I use Solgar gentle iron, 25 mg a capsule. It contains iron bisglycinate which is an easily absorbable form.

Thank you for this clear, thoughtful explanation of the differences between the two types of iron based on their sources.

And thank you for the specific supplement information! I'm totally new to the world of vitamins and supplements (having previously counted on my diet to do all of the heavy lifting), so it's good to have a recommendation that's plainly based on lots of research and painstakingly-accumulated knowledge.

Hello. I have P.A. and IDA. I’ve been a vegetarian since a teenager with brief occasional periods of eating fish. I do eat cheese and eggs but I’m lactose intolerant also so have to pay the consequence on the cheese! When I was diagnosed initially as b12 deficient my actual words in response to the doctor were “I can’t be, I eat marmite everyday” and he laughed and said let’s wait for IF test. Well turns out that I did have P.A. I initially responded well to the injections every 12 weeks With over the counter folate every other day. And then I got neuro symptoms and went to 8 weeks. then after about 10 years, I got really sick and confused, lethargic, hair fell out, couldn’t breathe. I tested iron deficient, dangerously low and for a year they gave me Various iron tablets which gave me sickness and diahorrea so bad I couldn’t leave the house. In the end I was hospitalised and referred to Haemotology. Low stomach acid and IDA alongside P.A. diagnosed (after numerous other things ruled out) . Now I have b12 injections 4 weekly, iron infusion approx 5 monthly, take folic acid, vitamin d and K every other day And take a magnesium salt bath twice week.

With iron a haematologist is important. I’m not medically trained but there is something different between the standard HB test and an iron studies test which is important about how you are using iron.

I can function, not perfectly, and not for the whole 4 weeks, I’ve learned what I need to pace myself with. I forgive myself for not being perfect. I used to run competitively but I just can’t now but I can cycle 20k and walk quite far on good days.

Eating or not eating meat makes no difference. I tried for a while because someone (Who I no longer listen to) tried to convince me that I had “brought this on myself” and it made me physically sick. Which was one of the reasons I stopped eating meat when I was about 12! My gp referred me to a nutritionist and when she saw my food diary she said there was no point seeing her as I was one of the best diets she had seen and My Haemotologist said there’s no point worrying and just have the infusions as they work.

Please don’t ever feel bad about asking questions, questioning treatment or sharing your experiences.

Thanks so much for sharing your experiences.

I'm sorry to hear that you got so sick at one point because the treatments stopped being as effective / because IDA became a complicating factor -- that's one of my concerns, especially having been diagnosed at 30 (since it seems like there's lots of time for things to get worse). But I also feel lucky to have been diagnosed at all, since my symptoms never got so bad that I wasn't able to write them off (even if, in retrospect, it was silly to have done so) and I didn't approach the doctor with any complaints. It turns out that routine bloodwork can be quite important!

Fortunately, it seems like my doctors are naturally erring on the side of caution (i.e. I was prescribed iron infusions rather than tablets to start, and they've started me at monthly B12 shots rather than shots every 12 or 8 weeks). I'm looking forward to my appointment with a hematologist next week, since despite the thorough treatments, I haven't been given very much information at all.

Like you, I was also a competitive runner, so that's a part of my identity that I'm a little afraid of losing right now. I love the way that you've phrased "forgive myself for not being perfect." It seems like that might be something many runners, in particular, have to work at.

On a lighter note, my husband's been lactose intolerant for most of his life, so I'm familiar with the choice, sometimes, to "suffer the consequences" for the good stuff like cheese and milkshakes! (Have you tried aged cheeses? My husband said anything older than 6 mos. tends to upset him less.)

I definitely tolerate some cheeses better than others. Thank goodness because what would life be without cheese? A milkshake however is a big no. And I’m going to run again one day, you will too, maybe with different targets and goals

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