Hello ๐ I SI every day, but after eating lunch, I get terrible IBS ๐ซ If I'm not on the toilet, I am in bed as I'm so fatigued.๐ I take Imodium just before I eat... but sometimes it doesn't work. ๐ค
I've tried going without SI for a few days and the IBS does Improve but my fatigue comes back and end up in bed.๐ด
I feel I'm on a roller coaster ride.๐ซฃ
Do any of you feel the same with IBS? Could B12 SI everyday be the cause of IBS? ๐ค
I'll be grateful for your help ๐ โค๏ธ
๐
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Onlyme75
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I'm sorry to hear you're suffering! I have not heard of IBS after SI especially if you've been SI'ing for a few years already, but perhaps others will have had this experience.
I see from previous posts you were SI'ing weekly. Did you recently change to daily and did that coincide with IBS? If so, do you have any other 'reversal symptoms' i.e. increase in tingling or temporary worsening of other b12 deficiency symptoms?
Are you taking certain supplements only when you SI, for example folic acid or B complex? Maybe lactose or gluten intolerance?
I've had my own problems with a " dodgy " stomach as I have B12 deficiency, but I only get my injection 3 monthly, it's seems people are prone to having gastric problems especially with having B12 deficiency, even pancreatic malnutrition functions run in the same system( apparently ) i also have to use imodium as an emergency back up to help me out during days when I know things are going to happen to quickly, as I know without them I would be in serious trouble, obviously losing our food more quickly is a tiring process, and it's pretty disturbing having to run tothe toilet every few minutes, and we are losing vital protein and other sources of vitamins every time we pass our motions, and perhaps lacking the ability to absorb B12 we also lose the ability to keep other vital vitamins in our bodies when we've had a bad day on the toilet, I'm clutching at straws myself but it seems a logical solution why we feel exhausted when we've had a bad day in the bathroom, maybe others have a better idea, best of luck.
i found the opposite. Terrible ibs pain etc for years, until I was diagnosed and started injections. Then they completely disappeared. Seems for me, lack of b12 was the cause. I hope you improve soon.
Your gastro problems sound awful. I hope you find some respite from them.
I find I have gastro problems when I donโt SI - currently doing daily. In the autumn it was bad and it has lessened since increasing SI. It can still flare up but nowhere near as troublesome as before. I rarely need Imodium. I found a food diary did help - I avoid caffeine, lentils and red wine!
Having IBS like symptoms was new for me and seems to have coincided with needing more regular B12 injections - which in turn may be linked to the peri-menopause. However, maybe itโs not linked at all!
The only person I remember saying anything about this sort of effect was pvanderaa ๏ฟผ but his was not severe or debilitating as far as I know.
Mostly I think it's OK... But that said, if it is happening to you, it's not good, so be kind to yourself. We are all different.
Is it OK with breakfast, tea and snacks? If so, it's worth considering what's different in your different meals.
I SI daily and my guts can be a bit quick, especially at times, but this is linked to chronic pancreatitis and other GI issues, not my B12. I understand your issues!
Curiously I can improve things with more gluten in my diet. I've been tested negative for coeliac this year, having found it in my notes (I was diagnosed with it when I was 3 but never told about it). I can become almost bowel incontinent on a gluten free diet!
Sounds like it's worth asking for a referral to a good gastroenterologist - but make sure you do your research first as there are some not-good ones out there.
I hope you can find a way to sort it very soon.
Don't give up on your B12 - you obviously need that.
Yes, I know how you feel planning your life around a loo! My gastric issues have worsened since I inject B12 but all my other symptoms have improved or gone. I think worsened is a little misleading because when I was so fatigued that I could hardly function, I was also too tired to eat so eating was not a big issue! Now I feel much better, am more active and I need and want to eat but I canโt!
I control my gastric symptoms by only eating once a day in the late afternoon. During the day I can drink - I usually have a milky coffee for breakfast and then drink plain kefir during the day. With this regime I can eat one meal without getting stomach cramps, diorrhea, bloating or severe wind. I also drink kefir in the evening.
It is suspected that I have low stomach acid which means I only have enough stomach acid after 24 hours to digest one meal - if I eat when not enough stomach acid then I have symptoms as you describe. I take a supplement Betaine and Pepsin which artificially increases my stomach acid which helps me eat breakfast sometimes, or cake when I take my mum out. It does relieve symptoms and I could just continue taking the supplement, but I am looking to find a long term solution by attempting to fix the cause. Hope this is making sense!
I know this regime is not sustainable but itโs a management strategy whilst I research. My research has brought me to suspect SIBO (small intestine bacterial overgrowth) - confirmed by a recent consultation with a nutritionist and a NHS rheumatologist. I need a three hour breath test using lactulose so that the small intestine which is the suspected culprit is tested too (apparently a two hour breath test can miss the small intestine). Apparently SIBO is very common and often undiagnosed but can be a cause of low stomach acid and celiac intolerance and IBS like symptoms.
NHS would treat SIBO with antibiotics and the nutritionist with a 12 week diet change - I will be doing the 12 week diet route as I am looking for root causes and long term symptom elimination and I donโt react well to many antibiotics, especially penicillin.
A GP or gastroenterologist can refer you for a 3 hour SIBO with lactulose which is what I am currently pursuing.
This may give you an insight but everyone is different and the difficulty we have understanding and finding root causes is that many symptoms overlap so itโs a process of elimination rather than a simple test to identify.
The above is a summary of my journey to understand what is the problem with my body. It is beginning to look for me that the origin of my PA is in my gut.
I hope you find a solution for you because itโs a horrible situation to be in. ๐ค๐ค๐ค๐ค
Thank you .... I get IBS also after eating a dinner at 1 pm we are farmers so that's the time we eat. I'm going to cut it out and try evening.Si morning. Xx
I have a small holding so on the go much of the time. I dont think it matters so much when you eat but how many โeatsโ in 24 hours. I have found the kefir stops me feeling hungry - itโs got carbs and protein and fat. I can eat at breakfast by missing my tea so I can adjust my meal of the day if I need to do so but itโs not very convenient and the hot weather means I have to keep my kefir in a flask to keep cool.
I really hope you find something that works for you. ๐ค๐ค๐ค
The symptoms of B12 deficiency can be wide-ranging, and vary in frequency and severity. This can make diagnosis difficult.
In a Pernicious Anaemia Society survey of about 900 members with pernicious anaemia diagnoses, IBS is named on the list as an experienced misdiagnosis. 44% of those who responded were misdiagnosed initially with other conditions - IBS by 4% of them. By far the biggest percentage of misdiagnoses was "anxiety and depression" - at 16%.
This seems to reflect my experience. Quite a while after I presented with lower back/left groin pain, daily diarrhoea and fatigue, B12 deficiency was found to be the cause. Early on, I was also offered antidepressants three times, which I refused.
Eventually, when struggling to improve despite (by then) getting frequent injections for what was diagnosed as functional B12 deficiency, I was sent to a gastroenterologist - who diagnosed IBS. My GP did not agree with this, as not covering all of my problems .
Long after the start of B12 injections at the usual frequency given, it was still not unusual for me to go to the toilet more than 10 times a day. This took some years and far more frequent B12 injections to rectify. Eventually it has improved though.
Some people seem to experience IBS-type symptoms as part of B12 deficiency. Diarrhoea seems now not to be mentioned much as a symptom of B12 deficiency, but was once seen as an indicator of the condition.
Some people do not seem to get this problem until B12 treatment begins.
For me, this was certainly a big enough issue to mention it to my GP right back at the start in 2015 and got worse before better - but that was true of all my symptoms. The first referral I had was to check that I did not have bowel cancer, on a 2-week pathway. This may put your mind at rest if you have any concerns.
I have had the SIBO fasting breath test series, as described by Wwwdot . I was sent to have this by haematologists because my MMA continued to be raised even after EOD injections were given - the possible causes being B12 deficiency, SIBO or renal problems (which had already been ruled out). So a methylmalonic acid (MMA) test might be worth an investigation, too.
My SIBO test proved inconclusive: possible SIBO, possible IBS - the first ruled out by an antibiotic trial from my GP, the second dismissed by my GP again as not what we were looking for originally, and not able to explain away all of my other various symptoms.
I don't think injecting B12 has anything to do with the digestion issues your having. Rather is could be the destruction of your Parietal Cells (PC) which produce both Intrinsic Factor (IF) protein and Gastric Hydrochloric Acid (HCL). If you've been diagnosed with PA then you may have only been tested for IF Antibodies and not PC Antibodies. It is known that 90% of those PA that test positive for IFAB also have PCAB. So as this PA or actually Autoimmune Metaplastic Atrophic Gastritis (AMAG) AKA Autoimmune Gastritis (AIG) progresses to an advanced state and your parietal cells are destroyed your stomach acid will become less and less. Funny thing here is that you may even experience acid reflux as the amount of acid lessons because proper amounts of acid also cause your Esophageal Sphincter to close shut.
Your symptoms sound exactly what I went through for about a year in 2020. It started after lunch then progressed to most every meal especially when I ate a high protein meal. I would eat and some time later I would get nauseous and eventually vomited anything I had eaten. I had both constipation and diarrhea. I lost 90 pounds before they actually measured my stomach acid during an endoscopy/gastroscopy. My stomach acid measured at a PH of 6, which is basically zero stomach acid. Your stomach needs a highly acidic environment of around a PH of 2 for it to work properly or even open the Pyloric Sphincter to let the chyme (gastric processed food) enter the small intestine. Then once in the small intestine the acid in the chyme excites cells on the wall of small intestine to release a hormone called CCK. That hormone is what causes your gallbladder to contract and release or squirt bile through the bile duct into the small intestine. Proper acid levels also help kill bad bacteria and maintain the good thus maintaining a good functioning gut microbiome. So without stomach acid (Achlorhydria), or low stomach acid (Hypochlorhydria) the whole digestion process is negatively impacted and in my case when I reached a PH of 6 it just came to a screeching halt. Also because of the Achlorhydria I ended up with SIBO meaning pretty much the bad bacteria had taken over.
The remedy this my doctor prescribed an Betaine HCL supplement and digestive enzymes to take before each meal. Once I started those my problems went away. Oh, I also had to take antibiotics to destroy the bad bacteria in my gut then rebuild the good bacteria with pre and pro-biotics. The rebuilding took many months but now I'm sailing smoothly and I've been injecting 2,000mcg Methylcobalamin weekly the whole time.
Here's what I take before each meal and both are available on Amazon.
Integrative Therapeutics Betaine HCL 1.3g capsules. I take one capsule. You may want to order a smaller dose of say 600mg to start with.
Integrative Therapeutics PanPlex 2-Phase I take two tablets
The PanPlex contains all the digestive enzymes such as Bile (in the form of Ox Bile), Pepsin, and Pancreatin.
Here are a couple of YouTubes on HCL from Dr. Berg.
Rexz, I'm really sorry you went through all that, but I'm really glad you shared your journey so we can learn and gauge some of our own symptoms.
I feel like most doctors don't talk about the kind of stuff you experienced/described, or acknowledge that it's even possible. It seems like often times medical practitioners have a fairly 'black' and 'white' sort of outlook, either you have the EXACT symptoms they expect in the EXACT way they think you should or you're "completely fine" and just need an anti-depressant. If that makes any sense?
Wow thanks... I do have low stomach acid... I take lansoprazole.... I'm under a Gastriologist I will go back and see what can do.... had small bowl MRI said Small bowl extended . Couldn't take the pre stuff for a sigmoid I thought I was dieing ๐คฎ xx
eat more fiber - walnuts, or anything with good fiber. it helps.
Also, being female, it gets worse for me during my cycle but just for a few days.
I have had IBS all my life.
I think that as mentioned before, b12 deficiency can bring loss of appetite and some constepation; perhaps the injections bring you back to norm.
the other thing that helped for me was keto but keto can cause the same problem due to shedding water esp during the first month. but after that initial adjustment, IBS went away. With keto, after the adaptation phase, the same solution of walnuts or a lot of fiber with the meal. Dr berg may have a video on this (fiber with meals) in addition to the ones listed here.
I have the same issue. I've been reading about b1 deficiency and started supplementing this wee. First dose stomach pain went away quickly. Woke up with it again. 2nd dose, pain went away but I quickly got a terrible migrain which I suspect is caused by potassium drop from b1. Ate 2 bananas, migraine went away in an hour. I've never had a migraine just go away. Decided I'm going to take my sublingual b1 in low dose, work my way up n make sure I eat a potassium rich food with it. Potassium supplementation does not sound safe. Also experimenting with plant based diet. This diet has had moderate success in the past so hopefully the combination will help. B1 is very interesting and a major player in its and gastr related issues.
Over past 20 yrs I've tried everything. Probiotics, keto, whole foods, adding and removing foods, elimination diet, ant acids and such, herbal medicines, teas, supplements, prescriptions, alternative therapies, Chinese medicine, the list goes on. Nothing has ever worked but some minimally helped, mostly plant based diet helped some.
I have a theory that eating meat has always been a problem cuz it increases my intrinsic factor to create more antibodies attacking the b12. No proof of this, just a theory in my head
I'm obviously biased but happy to help with any vegan/plant-based nutrition questions. Have spent some time studying it including a nutrition course from Cornell
That's great, thank u! I'd really like to understand how nutrients affect and interact with one another. For example, I heard both b12 and b1 high dose supplementation can cause a drop or imbalace in potassium, which will affect magnesium. Can you share any resources for me to read about stuff like that? Most of the resources I'm finding are either limited to 1 nutrient or way too complicated for me to make sense of.
I lived a vegan lifestyle for 5 years, stopped about 5 years ago due to social pressure. On that diet I was very careful about nutrition and supplemented with b12 sublingual, which I never did when I ate meat. This was before I knew I had PA. This seems to explain part of the reason I felt better on that diet. I started again 3 weeks ago. I feel better in many ways but still dealing the IBS. I've only been on b12 injections for 3 months. It's been a rough ride but I went from 80% bedridden to like 10%. I feel there is something still missing. Maybe b1, idk will see.
Are there any nutrients u know of where b1 or b12 will cause an imbalance with? I'm also curious about b6 but have been hesitant to experiment with high dose cuz of stuff I read, like too much can cause nerve damage.
Large doses of B12 should not affect potassium except in the early stages of correcting anaemia, when more red blood cells are produced to replace the defective ones. In most cases, simply getting good amounts of potassium from legumes and the green leafy stuff should be sufficient. You shouldnt need to bother with large doses of B1 either, I think that is a waste of time and money.
A teaspoon of fortified nutritional yeast at lunch and dinner can help boost all the B vitamins without the need for a B-Complex. Nothing wrong with an RDA B-Complex but nutritional yeast is tastier
There are a couple of resources I'd highly recommended if you're going 100% plant-based. Contrary to what you might have read elsewhere, B12 and Vitamin D are not the only things to be aware of. Fortunately there are now several companies producing custom supplements that complement a vegan diet with everything that you need and nothing you don't. I don't recommend a normal multivitamin as in most cases you will be paying for things you don't need - like folate or vitamin C, while not getting, or not getting enough of some others like B12, EPA/DHA etc.
In terms of an overall dietary pattern I cannot recommend more highly Dr.Gregers "Daily Dozen" guide/app
The only addition I would make to his plan is to ensure something orange at most every meal for beta-carotene. So carrot, sweet potato, pumpkin, canteloupe melon, or spinach which is not orange because the green is masking the orange lol. Carrot juice is fine if you keep to < 40 ml per meal and sip slowly over the whole meal to avoid any sugar hit. This is a tiny amount of juice but carrot juice is a beta-carotene powerhouse. Skip the juice for any meal with sweet potato, pumpkin or spinach.
General plate guideline of 50% vegetables/fruit, 25% legumes, 25% wholegrains.
Buy an instant pot or other pressure cooker if you don't have one already, the budget models are inexpensive and essential for cooking beans and grains in batch. For example, mix 50% wholegrains (200g) with 50% mixed beans(200g), high pressure for 30 mins, you have your grains/protein for a week in the fridge
Finally, the supplements!
Multivitamin
1. Complement. Ideal supplement outside of the summer months, perfectly dosed other than the magnesium (you wont need it) and lack of Calcium (which you probably could do with a little extra of). 1 tablet at every meal or three in the morning and you're set for the day.
2. Eimele Essential 8. Good dosing. May need an extra 1000IU vitamin D in winter months. Has Iron which Complement does not so may be preferable to Complement for anyone who is prone to iron deficiency.
Quite minimal supplement with just B12, 1000IU D, Iodine and Selenium. I like this as my base supplement in summer months due to lower Vit D. The disadvantage is you still need a few other things on top, like Zinc and EPA/DHA.
All vegan multis recommended above cover the minimum B12 supplementation requirements.
Calcium
Getting to the Calcium RDA is difficult for vegans. You may read claims that its not necessary to get all the way to RDA but this isnt accepted by most nutrition or diet professionals. Plant milks fortified with Calcium are a must. High Calcium greens like Kale or Broccoli should be regularly on the menu. As insurance it can be worth it to supplement Calcium at a low-dose, 200-300mg, to help reach the RDA. Avoid high-dose Calcium supplements (500mg+), they can cause issues with iron absorption and the body will be challenged to deal with the huge Calcium spike. 300mg is the equivalent of a glass of dairy milk so stay at or under that - most of the Calcium should still be from diet. Check intake as needed with a diet calculator like Cronometer. You only need to check a sample day, not log everything every day so this isnt as much of a bother as it sounds. Avoiding arthritis and broken bones is worth the time. The effort will pay off. Set and forget. I take one 250mg tablet in the mid morning between meals.
Omega-3 EPA/DHA
There is a lot of discussion around this but a consensus seems to be emerging for the benefits of direct EPA/DHA supplementation. Avoid the tablets and seek out the high dose liquid forms that provide algal-derived ~ 800mg DHA, 400mg EPA. In theory enough ALA from two tablespoons of broken flaxseeds would cover but best not to rely on this conversion, we are talking the health of your brain and nerves so....
Iron
Legumes but especially lentils are key here. Non-Heme iron absorption is greatly facilitated by beta-carotene (the orange stuff previously mentioned), vitamin c (red bell pepper or orange/kiwi before or after a meal) and onions/garlic. If you are avoiding lentils and legumes (yikes) you could choose one of the multis with iron onboard or take a separate iron supplement at or around the RDA. If you are taking more than the RDA take it on alternate days to reduce inflammation caused by increased hepcidin - the hepcidin will block iron absorption if high iron doses are taken every day, alternate day dosing avoids this. In general, avoid taking any extra iron unless you need to as it tends to be inflammatory. Seek out ferritin iron or bisglycinate which are gentler.
Zinc
Vegans with a well-planned diet can reach the RDA but due to reduced absorption may need more than this. Unless it is already in your multi, a supplement of around 8-10mg Zinc is worth it to make sure of getting enough. Most of the multis above contain this.
Iodine
Unless you have thyroid issues, you should aim to get 150mcg a day. Getting a bit more is not a concern unless you start to reach 1000mcg. Most of the vegan multis contain the 150mcg RDA which is fine. Otherwise you can take some iodized salt, eat bread made with iodized salt, or regularly use certain types of seaweed but most people wont eat seaweed everyday so I would just make sure you get it from a supplement, its the easiest and safest option.
Selenium
Its in all the multis I recommend, but is not needed in many parts of the US where they have selenium-rich soils. But a good idea for most Europeans to supplement the RDA. Yes you could try the 1 Brazil nut a day idea but I have read research that found wild variations in the selenium content of Brazil Nuts (very high to almost nothing).
Vitamin D
The obvious one, but a rough ballpark is usually 1500-3000 over the winter and 400IU to 1000IU over the summer if you're getting out in the sun somewhat regularly enough. Let labs guide but up to 4000IU daily is safe. Complement has 2000IU and others 1000IU. You can top these up with additional D as needed of course.
Protein
Where do vegans get their protein?!!? Well, from two-three servings a day of legumes, assortment of seeds, a handful of nuts and an otherwise balanced diet. If you'd prefer not to have peanut butter for breakfast, trying mixing a tablespoon or scoop of pea protein powder into granola, oatmeal, cereal or a smoothie.
I I'm now on a strict Gluten and lactose free diet. And it's helping. I've given up PPIs .... Celiac runs in my family, blood test show I haven't got it. But I've also heard some times it doesn't always show up in the blood.Seeing GP on friday.
I'll let you all know how I get on. Sorry for delay, I've just come out of hospital for the 4th time in 6 months!!
Good to hear from you, hope all is going better now.
I've had 2 celiac tests & both negative in blood & endoscopy. For the 2nd test i did gluten loading like you're supposed to, and got very ill. GI doc concluded I have non-celiac gluten intolerance, which amazingly is now recognized as a real diagnosis.
So don't let negative tests dissuade you from going GF if it helps symptoms. I like this site for info beyondceliac.org/celiac-dis...
I started taking b1. I started with HCL but moved on to benfotiamine (fat solvable b1). From the first dose of thiamine I've had zero intestinal pain. It's been a couple weeks and still working. Although the pain completely went away I still had bad bloating.
I've had all the allergy tests and did gluten free for 5 years. It helped but didn't fix my issues.
I got my test results back from my hair strand analysis test. I have eliminated all the foods on my allergy and sensitivity list 3 days ago. Within 24 hours no more muscle pain, fatigue, nerve pain or any issues at all. Bloat went away. I've never felt like this in my entire life, like normal and pain free.
I will continue on the diet to see if it continues to eliminate my physical issues but I feel hopeful. Also immensely sad if food allergies were my issue all these decades and I didn't figure it out til now.
The diet kinda sux. I have issues with all kinds off foods and preservatives and dyes. My ok to eat list is only a few pages long and my bad list is 10x longer.
It also showed my environmental sensitivities. In total tested for 985 substances (including vitamin/mineral imbalances). I will work on the environmental stuff that I have control over after I get a handle on the diet.
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