Newbie--shifting symptoms?

[Maypo]

New here and wondering if symptoms can shift or if I need to go make myself a tinfoil hat.

Background: vegan with long-term IBS. Two years ago I wound up with angular cheilitis, which a smart urgent care dr told me was B12. Upped my intake to 2000 mcg a day and it went away.

This July: lips started feeling unnaturally dry again -and- my long-term IBS was suddenly waking me up with bad heartburn and bad IBS flares. Was put on Pepcid and Prilosec, and the stomach symptoms have improved but haven't gone away, plus my lips are worse than ever and my tongue feels like the tip was burnt on hot tea. Plus bad fatigue--I am normally very active.

My question is: can symptoms come and go? The lip/tongue symptoms are pretty consistent (slight improvements went I went to 3000 mcg B12 dissolving tablets, and then with one B12 shot from my PCP, but returned within 2 weeks). But the gastric symptoms come and go, and the fatigue does, too.

I just found this group today, and am pretty shocked at how many of my symptoms seem to track with PAS, or at the very least B12 absorption problems of some sort. But when I went to the gastroenterologist last month (could only get an appointment with the nurse)--I showed her my lips and tongue and asked if it could be B12 and she said (and this is a quote): I don't know. And then prescribed a higher dose proton pump inhibitor.

Anyhow, given that my symptoms seem to fluctuate, I am wondering if I'm crazy to think this is PAS. (getting tested for H pylori next month--earliest I could get in). It's so easy to think--oh, the hot flashes postmenopause are because I am athletic and I don't eat enough, the shaking and fatigue is from not eating because of the heartburn, the IBS I have had all my life, the inability to sleep is from hot flashes, and the brain fog and difficulty finding words at times is from not sleeping. At least that is what my husband tells me when he is grumpy.

thank you!!

[wedgewood]

All proton pump inhibitors and any sort of Stomach acid suppressant will inhibit your absorption of vitamin B12. If you cannot stop taking the PPI , then you must get your B12 by injection.

Try real porridge oats for breakfast . Can help gut problems ( NOT quick oats) Works wonders ! You need to persist .

[Maypo in reply to wedgewood]

Love steel-cut oats. Have had them every day for years!! Hoping to get off the PPI/pepcid if I test positive for H pylori next month.

[EyesWideNow]

Hello, I’m sure that I’m not going to be your only responder to your issues. Your symptoms do definitely sound to me that you are B12 deficient to say the least. Have you asked to be tested for it? Sometimes you need a hammer to crack a nut and be very specific with your doctor that you want a blood test for it as otherwise you get fobbed off with all sorts like PPI which sometimes make you feel better for heartburn but can actually make your digestion worse as some can block the B12 absorption? When you say dissolving tablets do you mean under the tongue? They would be better than swallowing but not as effective as injections.I think you need to go back to your GP for the blood test though and save your tinfoil 😂

You aren’t going mad and you are not imagining your symptoms so don’t delay getting the treatments that you sound like you need. If your GP tells you that your tests show ample B12 that would also not be conclusive as you have been supplementing for it. The B12 needs to be actively working too. I found that my allergies always made me fatigued. I now know that was because my B12 was constantly being used up with homocysteine which in turn was meaning that my gut linings etc didn’t have enough to stay healthy and that made my digestion/absorption of everything else an issue too. You end up with so many knock on issues that you don’t know where to start and end up taking painkillers and all sorts instead of dealing with the base cause.

The very best of luck 🥰💪

[Espeegee]

might I respectively suggest that your symptoms are related to your inadequate diet? At least consider moving to vegetarian to help it out? You need nutrients that plants alone cannot provide, better protein for an example.

[Technoid in reply to Espeegee]

It is possible that inadequate diet and nutrition is involved as the poster mentioned that they do not eat enough but you cannot immediately jump to pin this on a vegan diet. Any diet that lacks sufficient calories will provide inadequate nutrition.

Although a vegan diet can be poorly planned and lacking in nutrients, if properly planned it can be very healthy indeed. All the necessary resources to do that can found in my profile.

The notion that a vegan diet of necessity cannot provide adequate protein is poorly informed.

[Espeegee in reply to Technoid]

You have had B12 injections? You do know how some of it is made? From a living organism.

[Maypo in reply to Espeegee]

Yes, see my long reply to this thread. I do work with a dietitian who specializes in vegan diets and sports nutrition--and though we have made some tweaks, overall she hasn't found major nutrition problems.

[Technoid in reply to Espeegee]

"You do know how some of it is made? From a living organism. "

I'm sure you have a point so when you are ready feel free to make it.

[palmier in reply to Espeegee]

B12 is produced by certain microbes. They may be living organisms, but so are plants. Microbes are not excluded in a vegan diet. Neither are plants for that matter. Vegan soy yogurt for example is made with living organisms, bacteria, and vegan bread is made with yeast, which consists of living organisms. So whats your point?

[MindfulSquirrel in reply to palmier]

To further this, even if B12 injections did come from animals/were tested on animals, it would be terrible hypocrisy hunting to suggest vegans shouldn’t take potentially life saving treatment based on that criteria.

[EyesWideNow in reply to Espeegee]

It’s a difficult ask though if her choice is her personal ethics/conscience about eating meat. I’ve had this issue myself and with various family members- I realise that I am very fortunate and can afford not only meat but from high animal welfare sources too so I try to balance this argument for myself with where and who I buy from etc I can tell you though that my middle daughter was vegetarian for quite a few years and on her 18th I hosted a sizeable house party and cooked foods with vegetarian options the same with two separated tables and dish colours to save confusion or ‘pranks’ etc they had a great time and went home ‘merry’. My daughter then decided she was ravenous and when I got back from seeing out some guests she was just about elbow deep in a large meat based lasagna and I couldn’t prise it off her. She started to eat and couldn’t stop herself?! I think her body recognised the missing nutrient. She stills has pangs of conscience though I can’t begin to tell you how relieved I was then and even more so in retrospect that she is no longer vegetarian 🥴

[Espeegee in reply to EyesWideNow]

I also try to source ethically. My sister, a lifelong veggie, has also had to live with migraines, bowel issues, anxiety problems, pernicious anaemia and last year she was diagnosed with Stage 4 ovarian cancer. All the science points to one's diet being the most important part of staying well and that it should include meat and plants. I appreciate the ethical dilemma but extremism never works for anything. Not eating meat does not save animals from abuse or cruelty, they are issues that need to be tackled not avoided.

[EyesWideNow in reply to Espeegee]

I couldn’t agree more 👍🥰

[Maypo in reply to Espeegee]

Well...people get sick and die. Even vegans. But I can also give the example of my mother, not at all vegetarian, lifelong anxiety and gastric issues, died of ovarian cancer. There's just no magic answer.

[thyr01d in reply to Espeegee]

Whilst it is true that not eating meat does not save animals from abuse or cruelty, it definitely reduces the number of animals that suffer and even if that's only 1 a year for each vegetarian/vegan (and of course it's more) that's worth it to some of us. We are vegans, my daughter has been vegan for over 20 years and does not supplement at all and is one of the healthiest people I know. She works as an equine vet which is tremendous physical work sometimes long hours including through the night and involves caring for owners as well as their horses. It seems to me that not all people need to eat meat and dairy produce.

[Technoid in reply to thyr01d]

I hope she is supplementing B12 (or getting enough from fortified foods which could be a bit risky). There is also Omega 3 EPA/DHA, Vitamin D (not just a vegan issue), Calcium, Zinc, Iodine and Selenium to consider. For women of child-bearing age iron may need some attention although I know its not too difficult for vegans to get multiples of the Iron RDA (I do). It is certainly not necessary to eat meat, dairy, or any other animal products but it does require some nutritional planning if one does go down that route. And not supplementing B12 as a vegan is, I think, extremely unwise. In some cases it can take a very long time for deficiencies to manifest. No reason to take this chance.

[thyr01d in reply to Technoid]

Well Technoid I agree with your thoughts however on recent testing my daughters levels were all good, including the B12 thought not to be in vegan foods unless fortified, and all the many organ functions etc tested came out very, very good. As I said, she doesn't supplement at all, pays no attention at all to any aspect of food other than taste and if it satisfies her hunger. The rest of us think about nutrition and eat what we think we should and are not nearly as healthy. Maybe we should all just let our bodies guide us, just as she does. Your comment about iron is especially interesting because I cannot get my ferritin levels up to anywhere near mid-range, despite taking prescribed ferrous fumarate (I think) for years, how do you manage it?

[Technoid in reply to thyr01d]

I would not be reliant on a tested B12 level, my reading was 636 when I began developing neurological symptoms. I find it very hard to believe that she has been vegan for 20 years, not bothered with B12 supplements or fortified foods and has had no problems.

I have heard such stories a couple of times as anecdotes but they do not fit with anything that I understand about human physiology of B12 metabolism. I have heard that in some rare cases, deficiencies may take decades to manifest although I don't understand how this would be.

Although technically speaking there IS some usable B12 in some plant foods it is unlikely you would be able to easily buy these anywhere (duckweed) and relying on them would be madness due to lack of robust testing.

Are you sure she does not use fortified plant milk or nutritional yeast regularly? Although inadvisable as a reliable source that might explain it.

I think the secret to iron on a vegan diet is legumes 2xday, especially lentils with onion and garlic, a vitamin C and beta-carotene source, and at some point in the day some nuts and seeds. Tinned, chopped tomatoes are an excellent choice for both iron and vitamin C together. Although its often recommended to avoid caffeine with meals I do not bother with this and still have never been deficient. I have never supplemented iron in my life. So much for the necessity of heme iron.

I would be not be reliant on blood tests to know that the diet is adequate - for example, Calcium is tightly controlled in the blood and will be pulled from bone to keep serum levels normal. So subclinical calcium intake can occur for a very long time with nothing showing in a blood test. The first indication that bones have become weak could be a fracture or osteoporosis. There are many other vitamins and minerals that do not test well but you get the idea.

I'm not really a fan of the "intuitive eating" you mention, if it was up to me I would just eat chocolate all day in fact... in my college days I seemed to intuit that bars of chocolate and 7up was what my body needed 🤣

On a serious note, I would really have a chat with your daughter regards B12. It is a very risky thing to do to avoid B12 supplementation as a vegan and I think we would all prefer she does not end up on this forum with the rest of us! 😁

Why avoid it when a small B12 supplement every day is so cheap and easy to do and gives tremendous peace of mind.

[thyr01d in reply to Technoid]

Yes Technoid, that's what I was saying, my daughter eats according to what she feels like, and she often gets up in the night to eat cereal, which is fortified and sometimes the plant milk is too and yes she is keen on baked potatoes with nutritional yeast. So her body seems to know what she needs. I also wonder if she gets B12 from soil, it's said to be on unwashed vegetables though unavailable apparently.

Your post is very interesting, lots of useful info, is this your specialist subject?

I think just the same as you, why risk B12D, but my daughter just scoffs and it's her body so her choice.

As part of a Yoga Diploma one of my subjects was advising students on diet. I lost a mark because my tutor was annoyed that my conclusion was that I would not advise. My reason was that I think we are all different, I eat plenty of your iron source suggestions, yet, as said, cannot get my ferritin levels up. My ex-husband and said daughter eat whatever they feel like and are both very healthy, hubby at nearly 80 still bright, alert, active, sporting, intelligent and working until last year. They both eat very fattening foods yet remain lean with no signs of fat on internal organs. Daughter once felt in need of a snack before dinner so opened a new big box of Weetabix. After her first bowl she was still hungry so had another and another ... until she found there were none left! I think there's more to it than we know yet.

Thanks for the interesting chat and thanks too to you Maypo for starting it all off.

[Technoid in reply to thyr01d]

Yes I am studying nutrition but only started on the formal education track for it this year so I don't have a qualification yet. Regular high intake of B12 fortified plant milk, fortified foods along with nutritional yeast fortified with B12 may explain the lack of deficiency. I don't think its too safe but thats her decision.

If calories are not excessive you can maintain healthy weight on a high fat diet, I eat around 34% fat which is somewhat high for a vegan diet (although the EPA/DHA may be tipping the scales). Nothing wrong with fat per se, its the type of fat that matters most.

Hard to explain on your ferritin but people do seem to operate on different levels and stomach acid can definitely affect absorption.

In nutrition there are general guidelines but obviously individual people have different genetics, different microbiomes, allergies, intolerances, different requirements for nutrients based on age, health conditions and many other factors. But I dont think that people are so different from each other that general nutritional guidelines or recommendations are completely useless or impossible, they just require nuance in their personal application.

[Technoid in reply to Technoid]

veganicity.com/Vitamin-B12/...

£5.25 for a 3 month supply of B12. That's 5 pence a day.

That's the price of not having to worry about permanent neurological damage.

I know its not your decision. But just sayin...

[Nackapan]

Did you ever get a b12 blood test before supplementing?

An IFAB test

Shows up about 50% of those with PA .

A vegan diet needs daily vitamin/ mineral supplements to meet your body's needs as im sure you are aware

If you've always done this and still getting ill.

Either consider changing / tweaking your diet or consider b12 injections 💉 or both. May be an absorbtion problem.

My friend was a vegan.

Got ill .

Had b12 loadng injections.

Changed her diet and only needs tablet form supplements now.

She managed to turn it round completely.

Very well.

No more ibs either.

Caught early by a good G.p.

Here not an absorbtion problem.

Do get folate ,vit D, iron ect done on a blood test so you know what's going on.

Your symptoms are typical of a b12 deficiency/ PA .

folate ,ferritin ,iron deficiency

So many things overlap.

Hope you get it sorted soon.

[Maypo]

Thanks, all. I actually work with a registered dietitian on my diet to make sure I am getting the nutrients/calories I need. I am plant-based--so I personally have some flexibility as far as non-vegan shots, etc. (It's just easier to say 'vegan,' than to go into the whole explanation. Also, I am not by any means here to start an argument about vegan/non-vegan, etc--I respect whatever choices people make in their lives.)

I was tested about 6 months ago and my B12 was in the high range, but I was supplementing. So it's odd that the stomach and lip symptoms started 6 months after that, despite high supplements and, as I said, working with a dietitian. The IBS predates being plant-based by several decades.

Do your symptoms come and go without any obvious reasons? eg, I track my meals for my dietitian, so they have not changed, yet the lips will sometimes get better, and the fatigue comes and goes.

Dr on Monday here--will test folate ,ferritin ,iron deficiency. Vit D too, but last test, that was excellent.

Back to swallowed B12 tablets too--I see here reports of people taking very high dosages because only a low %% is absorbed??

[Technoid in reply to Maypo]

~ 1-3% of oral doses are absorbed via passive absorption. If you don't have PA or another B12 absorption issue then intrinsic factor (the main way that B12 is normally absorbed) would allow an additional 1.5-2mcg to be absorbed approx provided 3-4 hours between doses.

In PA, intrinsic factor does not function so passive absorption is the only possible way that oral doses would work. Oral can work for some but many with PA find that it does not, or not sufficiently to keep symptoms in check.

[JHEW0836]

Regarding your gastric issues, are you sure you don’t have low acid? Gastro specialists seem to just throw PPIs at their patients without delving further into their digestive problems. PPIs deplete B12 and can make heartburn and reflux worse if you already have low stomach acid. Menopause and aging can lower stomach acid, causing vitamin deficiencies and digestive issues.

[Maypo in reply to JHEW0836]

No, the gastro just handed me an even higher dose of the PPI and wasn't even interested when I brought up my B12 symptoms. I have an appointment with my regular Dr next week. He has been pretty open to my concerns and last year told me that it's OK to take high doses of b12, so we'll see.

[MindfulSquirrel]

So I had symptoms that both came and went as my deficiency was progressing (and came came back and went in the reverse order during my loading doses - it was so weird!), AND have symptoms fluctuate according to my menstrual cycle. They’re definitely worse around the time before/of my period. Which happens to be now 😭

[EyesWideNow in reply to MindfulSquirrel]

Oh I feel your pain! I can’t find words and lose bladder control along with whole body aches and stiffness before mine-then wake up like a spring lamb the day it starts 😵‍💫🥴

[Maypo in reply to MindfulSquirrel]

Oh, thank you for that. Postmenopausal so no cycle anymore but it makes sense. Wonder if the body and symptoms still cycle some