As you know I am a newbie and have been actively pursuing ways to restore my health. There have been successes and failures but more successes so defo going in the right direction. I thought I would summarise where I am as I feel I have had a break through in the last month.
I have had low stomach acid for many years but only came to the fore a couple of years ago when the low B12 symptoms started. All this is with hindsight as I was blissfully unaware I had PA.
For at least the last 2 years , more like 4, I have suffered stomach cramps, food intolerance, bloating and diarrhoea which culminated in me only being able to eat once a day to “manage” my symptoms. Not been able to get advice that helped other than from a dietician who told me to “listen to my gut” not Google.
So I followed her advice and for 9 months I lived on large quantities of natural kefir and homemade kombucha and ate one home cooked meal a day - my stomach began to settle. Meanwhile I read and researched what I could do to self treat.
Around 5 months ago I upped my B12 Hydroxocobalamin to every day. About 3 months ago I added methylcobalamin and B Complex liquid as well as zinc, magnesium, vitamin C, vitamin D and K and gentle iron as well as Betaine and Pepsin. Bloods hugely improved as of last weeks test - nothing below min levels now - and I feel better and had more energy but still could only eat once a day which was limiting so no coffee and cake with mum, no lunch with a friend …
Having read lots of books on the gut, my eighth read made most sense A book called the Plant Paradox by Dr R Gundry. I cleared my cupboards and rethought my menus. The outcome is incredible - I am able to eat three times a day or more if I chose! No cramps, stomach bloating, diarrhoea etc My skin looks incredible and a number of people have commented how well I look. I feel ”me” for the first time in a long time!
Interestingly, the focus of the Plant Paradox is lectins which can harm the gut. The book is incredibly well researched and way over my head. My cupboards were full of lectins tin tomatoes (skin on and seeds), corn, wheat pasta, sunflower oil based fish, oats, chia seeds, cashews, my beloved marmite and peanut butter!!! etc)
Here’s the interesting bit … I found some Japanese snacks made from rice and seaweed and enjoyed a handful - loved the peanut in the middle. About an hour later I had gut cramps and then you know the rest … I had forgotten that peanuts are high in lectins.
I used to eat oat porridge but I now have millet porridge - it’s about balance of what’s in foods I think and where we are in our health journey - for me at the moment my body appears not to be able to tolerate any more lectins and avoiding them has been like flicking a switch in terms of my body renewal and health.
Dr Gundry does videos but I can’t stand them as they are long and droney! So I bought the book- a far better read and evidence based in the references of research. Certainly worth a look.
If people are interested I will share more details with you about the food swaps we have made as a family - but despite reservations from my 21year old son that he would be eating “rabbit food” we had a family cook last night of a Chinese takeaway of deep fried crispy prawns with garlic and salt and pepper salad (the rabbit won!) and fried rice - it was delicious- hubby even licked his plate and son ate the rabbit food !!! Not one lectin in sight, no bloating either! 😁
I hadn’t planned to share this until I had been following it longer but went out to lunch yesterday and ate tea and no ill effects - so thought it’s time to share. I am happy to answer questions in the post or privately.
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Wwwdot
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That is so wonderful to read and it just goes to show that with foods there is no one size fits all - where have we heard that before??🤣
Just goes to show also we need to learn to trust our own instincts and to listen to our bodies more - could be that it’s not medicine we need but an adjustment to our diet.
The challenge nowadays is it’s hard to tell fact from fiction and so much subliminal misleading, profit driven claims, exaggerated claims to get noticed combined with advertising and social media.
Brilliant when we can close our ears and tune into ourselves. I think your mum and daughter are shining examples of what can be achieved.
Firstly, I'm glad that the changes you made have benefited your health.
From a nutrition science perspective, Gundry is quite confused and engages in a lot of ill-founded scare-mongering about "anti-nutrients" such as Lectins. The approach is quite a popular one in the low carb community (see Paul Saladino et al). For the most serious engagement with these issues I recommend the Sigma Nutrition podcast/blog linked below.
"My hope was that the book would provide a thorough overview of what is—and is not—currently known about the health effects of plant lectins. It did not. While the author emphasizes repeatedly that the Plant Paradox Program is based on scientific evidence, this is clearly not the case. "
Excerpt from an episode of Simon Hills "The Proof":
Thank you I will certainly take a look. You are right and without doubt there will be areas where there’s error or extrapolation and I am finding some of those as I apply the concept and experiment but on the whole the results are amazing!
I haven’t followed it strictly as I am operating within a family unit but I did notice a backward step when I ate less greens like cabbage and kale and cos lettuce and avocado so I have upped them again.
I think like a lot of this nutrition and vitamin stuff is covering unchartered waters and is dumbed down and generalised to make it accessible. I certainly find my head swimming at times!
Its not as popular a book in bookstores because unlike the low-carb books, its not giving people good news about their bad habits but it does have the advantage of being backed by decades of nutrition research.
The first 7 minutes of his interview can be found in my profile and that already tells you 90% of what you need to know, then tailoring it to your own food preferences, intolerances etc; there are many varieties of a "good diet".
The Redpen review is excellent and strikes the right note. It was for this very reason I was hesitant to share my experiences as I do not like his podcasts and videos as the “hyperbolic” goes into orbit along with a most annoying American accent!
The only parts of the Plant Paradox I have experimented with is the lectins, source of meat and A2-casein dairy - although not strictly as I still have a coffee with cows milk every morning.
I have not found it to be more expensive once I work out my sources as may Indian and Asian shops gave the raw ingredients.
How do you manage to know so much? I am in awe - it takes me ages to read all this and most of the time I then forget it!! I so appreciate this info!
I spend most hours of my day studying nutrition 😁. It is difficult to sort the noise from the signal. Most of the diet books that are popular in bookstores are filled with claims that nutrition professionals regard as complete bunk. There are many conflicting studies and the media loves headlines like "everything you heard about nutrition is wrong!!!", while in the background, actual nutrition researchers are thoroughly rubbishing the study in question. As Nackapan would say, minefield.
You’re spot on and the whole key is that what works for one may not work for someone else and I think that could be extended to what works in one part of your life may not work at a different time in your life. As our bodies change so do our needs and as illness and disease comes in our needs change too. If you factor in the environmental factors that’s quite a challenge for anyone to fathom. So self awareness combined with knowledge and an open mind are key it would seem.
"We all need some sugar to feed the brain in the right form and eaten with something ....well I do for sure. "
Humans actually cannot live without carbohydrates. There is a minimum daily biological requirement of around 150 grams of carbohydrate per day. Organs which require carbohydrate as fuel include:
Brain Cells
Red and White Blood Cells
Cornea, Lens and Retina of the Eye
Innermost part of the kidney
How come people on low (or no carb) diets can survive then!? Because the body has an ingenious way to produce carbohydrate from fat and certain proteins called gluconeogenesis which takes place in the liver and kidneys. One might cut out carbs completely, but the body will not tolerate this 😆 and and will cannibalize other stuff to make carbs for you anyway.
(ingredients for gluconeogenesis also include lactate from red blood cells, pyruvate from glycolysis, malate and oxaloacetic acid).
Yes agree I just love honey comb and fruit and I don’t think you can beet the burst of zinginess in a perfectly ripe fruit weather it’s a little raspberry, blackberry or wortleberry up on the hills / you can feel the rush of love in your body!!
Firstly, I should state that, for the record, I don't see very compelling reasons to eliminate or even greatly reduce carbohydrate in the diet. In general, the quality of the overall diet matters a lot more. As long as most of the carbohydrate is from unrefined sources, total calorie intake is not excessive and the diet is otherwise well-balanced it doesnt make any sense to demonize carbohydrates.
Some people may feel that they do better on somewhat lower carbohydrate diets and that's fine. The dividing line of how low is "Low-Carb" is where it gets a bit tricky. With super low carb diets, the body will enter ketosis, and most of the necessary carbohydrate will be generated via gluconeogenesis. Ketone bodies will also be produced to fuel the brain (although some areas of the brain still need glucose and protein is sacrificed to meet this requirement). This is a fairly uncomfortable metabolic state and most people cannot stay in ketosis in the long term. If the state of Ketosis continues there may emerge concerns regarding elevated uric acid which may exacerbate kidney disease and/or increase inflammation of the joints) and symptoms such as constipation, low blood pressure, fatigue, muscle cramps, nausea and foul mouth odour are possible. Excess ketone bodies in the blood drops blood ph and for pregnant women is particularly dangerous as it may lead to fetal harm or stillbirth.
I don't think there have been any studies that have looked at the health effects of remaining in full-blown ketosis very long-term, so its hard to say that staying in such a state for a long time would be safe or healthy. The Inuit, who had traditionally eaten a very low carb, high fat diet, have a specific genetic adaptation that stops them going into ketosis, despite their diet which I think goes to show how keen the body is avoid this metabolic state in the long term.
But there is a variety of forms of low carbohydrate diet, many of which would not put someone into long-term ketosis and could be designed in a healthy way, including healthy high fat foods such as avocado etc. Unfortunately most people equate low carb diet with "tons of meat", but thats only one(poor) way to design such a diet.
Although I don't see any really compelling reasons to choose a low carb diet over diets like Mediterranean or Plant-Based, with careful effort (and nutrition knowledge) I think it is possible to design one that is healthy and sustainable.
If you are seriously committed to low carb but want to see how it can be done in a healthy way I highly recommend the interview with a low-carb Cardiologist ""Designing Low Carb Diets for Heart Health". There are many useful tips and you will immediately see the contrast between his low-carb diet, designed by someone who understands nutrition versus the more commonly seen high meat/high saturated fat variety.
I absolutely agree and carbs are an important part of a healthy diet.
In my 61 years I have never dieted, just eaten well and sensibly. This is the first time excluding any types of food from my diet - so no lectins. But I am not going to total exclude and gradually introduce some back - some sneak in already and that’s ok.
Thank you again for all your great info and insight.
It is certainly a minefield and I am so incredibly grateful for your fantastic response because I am picking my way through to find my way. I am so determined that I will find a way to get better and I know the problem and solution is my gut.
I am researching into historical and different ways of cooking and I what I was taught as a child but then had my teaching rubbished in the 80’s. For example my grandmother who lived to 95 years disease free taught me to always soak my potatoes and peas and beans before I cooked them. The same with oats, barley and lentils. She also explained never to use the soaking or cooking liquid but to discard it but I was never told why - yet my mother in law who is still alive but far less healthy always criticised me for NOT using the soaking and cooking liquid. (I discard it as I think it tastes horrid! )
I try to experiment for myself if possible and to research how different cultures prepare food and to try to find their “why”.
I will certainly cherry pick through the plant paradox and continue to eat cherries!!!
"This review discusses each nutrient and antinutrient regarding the effects of soaking and compares them with other studies done with legumes. The results were not unanimous but there was a greater advantage to discarding the soaking water before cooking"
So I think your grandmother wins 😆
But because of instant pots/pressure cooker, no reason to presoak beans or grains anyway. Just put them on high pressure for 25-30 mins and they're good to go.
Bless her🥰 her chicken soup from a carcass only and her tiny light dumplings make my mouth water 57 years later! I have never got anywhere near the taste she could extract from bones!
Interesting about the instant pot - which I use for my potatoes, rice and millet porridge. I was wondering if there is an optimal high pressure time to make legumes safe as opposed to soft? So could I cook for 5 mins on high and then allow to cool and depressurise over night and use the next day?
I find all this fascinating and appreciate you sharing your knowledge.
You can presoak to reduce the cooking time a lot but who has time for that. Just start the instant pot in the morning (or night before), forget about it and they'll be ready for lunch/next morning. Dont go under the minimum cooking times for stuff like red kidney beans. They actually do have significant amounts of lectins that need to hit the minimum cooking times to be safely broken down. You should be able to squash the beans with a fork. They dont need to be complete mush though. Most are a LOT more than 5 mins to cook from dry, other than lentils which dont need soaking or instant pot anyway. The time is not relevant if you run it overnight or in the morning since its hands-free once started.
Yes soaking SHOULD reduce flatulance too but not everyone (my son and my granddad come to mind 🤣🤣🤣) !
Yes also wash rice well and then soak fur 15 mins if you want super fluffy rice (with the boil / steam oriental method 😋- not the English boil to death and rince in cold water method 🤢)
I love potato skins so now they are instant pot cooked and then roasted … oooh I am now so wanting a crispy potato jacket !!!
Very happy for your progress dotty, no doubt I'll continue to learn from you. The reason for soaking oats is to neutralise phytic acid, which impedes iron absorption, something we all need good levels of! I've done that for years x
I thought you might say something like that...😉 however, the theorising behind it, the evolutionary approach and how different blood types evolved and how your blood type reflects your internal chemistry, made a lot of sense to me and it did make a difference to the health issues I had at that time.
Judging by the review, the blood type diet recommends a lot of healthy foods which, if eaten, would be an improvement to many diets, regardless of the veracity of the claims made in the book relating to blood types and the necessity to follow a particular diet based on them.
Many people report feeling health improvements following almost any diet as it causes them to eat more consciously, often losing weight, avoiding junk food, refined carbs etc.
As the saying goes, even a stopped clock tells the right time twice a day.
It is more complex than that. I don't read reviews - I trust my own judgement and know my own body- I've read the actual book and was guided by that. I was always a healthy eater with a good, balanced diet, wasn't overweight and didn't tend to eat crap and processed foods anyway.
You are quite right as there is quite likely to be more we do not yet know than what we do know. It’s a very useful testimonial so worth a read - back in my ever growing reading list!
It's not about right and wrong, it's about finding a way forward that helps us ultimately. That evidently takes much trial and error, judging by this forum 😘
It’s hard to know what to share and what to not share as it’s all totally experimental and I am a rookie!
I think it’s the engineer brain that causes me to search for solutions as I have spent my whole life problem solving - just wish I had even a basic qualification in biology!
So happy to hear you have found relief through diet as well. Yes, plants affect us in so many ways but they have been said to be healthy, and they are BUT cause a ridiculous amount of inflammation to so many. Myself included. I have found a small handful that doesn’t cause me any type of inflammation or bloat. I have done the carnivore diet for quite a while but have gotten lazy and can feel it in every part of my body. I am actually looking forward to getting back on it as I have never felt better. I am able to SI much less while on it as well. I was down from 3x per week to once a month. I wish I didn’t love food so much🤦♀️. It’s a hard habit to break.
It’s interesting that you say that even though something works and we feel good yet we gradually drift away and presumably back to old habits.
I think that’s a great observation you make and certainly is the challenge for me as I have to “engage brain” before I eat otherwise it’s autopilot and old habits win!
It’s true isn’t it?! We are such creatures of habit. I’m my own worst enemy when it comes to my health. I know how often I should be injecting, I know what makes me feel so much better yet here I am eating these damn powdered donuts poisoning myself and making my body work harder than it needs to. I annoy myself so much that I allow this. I WILL get back at it though.
Try not to be too hard on yourself. This disease is insidious and subconsciously I think it’s hard to accept the extensive damage it does to us particularly when the “qualified” medics tell us we don’t need to SI very often and that we don’t need supplements as we are in range or that we don’t need to change what we eat or drink or vary self-treatment dependent on activity levels. Oh, if only that were true!! That would be heaven on earth would it not?
The fact is we DO need to SI frequently and we DO need to supplement to keep our bodies feeling good and functioning well. I DO need to change what I eat to feel better and I DO need to Cary my self treatment dependent on activity. The fact is we are on our own on this complex lifetime health journey with minimal support or understanding.
When we are in that good place, we so want to believe that we have arrived! We are “fixed” and that’s when the little nagging doubt gets stronger, as there is no evidence to shut it up and prove it wrong because we do feel great.
So perhaps after all, we ARE wrong and everyone else is right? We ARE hypochondriacs! We ARE attention seekers! We ARE making our own lives unnecessarily difficult! We ARE ridiculous!
So what happens then? As time goes on with no evidence of poor health, and we may even begin to feel normalish again, I think that little nagging doubt grows and we start to self doubt. We begin to subconsciously question our self treatment. Perhaps we don’t need to SI so frequently? to supplement so much? to watch what we eat and drink? or how and when we are active?
We start to question ourselves because we so badly want it to be true - that there really is nothing wrong with us that a single shot of B12 once in a while can’t fix!. That’s certainly my problem and that’s what happens to me and I suspect for others too.
In a way, it’s a bit like the ups and downs of life - without the bad times we cannot recognise the good times and vice versa. Just like we can’t have sunshine without the rain yet put the two together and we have a rainbow. I cannot accept the good and bad day up and down of too little self treatment. I cannot hide the fact that I want a rainbow every day … that’s what I am aiming for if that makes sense?
Lucky me I do not like powdered donuts! But I have my downfalls too 🍷🍷🤪
Thanks for replying and I wish you success ditching the donuts!
Thank you so much for this response! You could not have explained it any better. It’s as though you have written every thought in my head regarding my journey. When you have people that truly understand it feels as though they breathe some life back into us and confirm that belief that you truly are doing it all right. This is why this group is truly amazing. Thank you for inspiring me and being the rainbow for today♥️
You are so kind. Thank you too for your contributions- this group surely punches above its weight and is the guiding star in my search for that light at a very long tunnel (pardon the mix of metaphors!)
My nephew is allergic to leptins to the point he ends up in hospital. Who would have thought foods that are deemed good can cause so much trouble. As a coeliac I’ve discovered how many foods have gluten in them so is avoiding leptins as difficult?
You beat me to it again as I was looking that up but unsure if it’s a typo. Biology and nutrition is hard enough without words being so similar yet functionally so different!
What a joy it must be to have found something that works for you! Fantastic!
I noticed you said kale and cabbage helps you, which is interesting, because they contain folate and I have been told this is needed for methylation. Methylation problems are often related to B12 deficiencies.
So if it works, it works, but if you want to understand more, it might be interesting to find out if it's the increased folate that is helping you or the reduced lectin. Or both!
My instinct is that it’s both because we always have eaten lots of leafy greens AND peas and beans. Peas and beans are high in lectins. So now eating only slightly more cruciferous vegetables but no lectins.
I love peas and broad beans but from now on mushy peas in my instant pot (I am a northerner so LOVE mushy peas) and I will peel broad beans like in the posh restaurants which is how I like them anyway. But I won’t be frying them young sliced in the pod anymore.
Wow Wwwdot, thanks for sharing this. I did order Dr. Gundry's book yesterday. But a wonderful thread of discussion from you, Technoid, Nackapan... I've much reading to do. One thing I've discovered is that as a result of achlorhydria I have Leaky Gut. We're and science is not sure which came first AMAG or was leaky gut the trigger that caused the damage but that's a whole 'nuther discussion. But with leaky gut I find my food sensitivities fluctuate depending on what I'm eating. This is verified by food sensitivity tests. So originally I was diagnosed with high sensitivity to gluten, dairy, and almonds. I cut those completely out of my diet and switched to a mostly plant based diet. Loads of veggies and beans. Then about a year later I tested again and this time gluten, dairy, and almonds did not even show up. BUT most every vegetable that I was eating did. I mean now I'm sensitive to lettuce, carrots, tomatoes, cucumber, you name it. The reason is that food sensitivity tests are looking for antibodies against that food. If you have Leaky Gut then microscopic particles if the food you ingest are slipping through unnatural microscopic gaps in the walls of the small intestine and entering your blood stream directly and causing your immune system to go batty haywire trying to fight off these foreign invaders. So what to do, what to eat. As we are trying to heal my gut with supplements we come up with a plan to eat small amounts of a very diverse diet. Much like our hunter gatherers ancestors are. That by itself helps feed a greater diversity of good gut microbiome.
Anyway as you can tell i've a keen interest in this topic Wwwdot.
I had all the symptoms of leaky gut but a year on and I am still waiting to see a NHS gastroenterologist- just had a text from NHS last week asking if I want to remain on the waiting list!
Technoid makes some great observations which I am so grateful for because I felt I was “cheating”as I have not followed the plant paradox completely as I have to operate within the context of an extended family so from 19 to 84 years and me as chief cook and bottle washer!
I do think the 9 months of kefir (about 2 litre a day) and kombucha with just one small meal a day helped do some repair to my gut - I think this was the main repair phase but I think the high amount of lectins I was eating was maintaining the damage to my body. I was also craving sugar.
For example, I have cut out all the obvious lectin sources and I felt the benefit within a week in that my body stopped needing kefir - it’s hard to describe but I just wasn’t hungry and after eating I didn’t need to calm my stomach. I felt I could eat around lunchtime which I did and amazingly I was ok.
We still eat fruit but have cut out fruit juices - this is where I cheat!
I haven’t cut out dairy completely as I still have a coffee in the morning made by hubby. This is part of my SI ritual and it was too big an ask to give it up but that has worked. I switched to French butter and non-English cheeses to avoid the A1 casein.
I started eating konjac noodles instead of wheat noodles and the whole family love them so that was an easy switch.
I wasn’t eating much bread other than sour dough so nothing changed there but currently trying to find my own recipe that is lectin and rice flour free - made my 5th “ brick” yesterday but going in the right direction - at least the birds are enjoying my disasters!
I switched the source of my meat and fish. So no farmed fish only wild fish (ironically I have found it is cheaper to buy wild salmon from Waitrose than farmed salmon from Morrisons!!). Switched from organic meat to pasture fed - I grow my own lamb and we have our own wild venison. So just beef and chicken which I buy online from regenerative farmers or local for beef. Not found a pork supplier that doesn’t feed grains to the pigs so no pork at present. The biggest difference we have all noticed on this is the amazing flavour and the lack of an unpleasant smell when cooking. The stock I make from the bones etc is better too (no more stock cubes which is a great saving!!) - doesn’t have the smell as before. Apart from my mum we are all super aware of odours so smell is a big deal for us.
I have not given up potatoes ( this is where I felt I was cheating again) as I think my family would walk out!!! So I now pressure cook them in the instant pot, discard the cooking liquid, and then roast them in olive oil - best roast spuds ever, or mash etc! I do a batch and wrap them and stick them in the fridge - same with sweet potatoes.
We also cannot do without white rice so I soak this (as I did before) wash well and cook in the instant pot. So another cheat.
I now buy Italian tomatoes (no skin or seeds) from Lidl - 45p a tin instead of 33p a tin. I switched back to rice bran oil instead of rapeseed oil ( this made a big difference to me). I do eat red peppers but again in a jar and reskinned and reseeded.
I only buy sardines, tuna, mackerel, anchovies, olives etc in olive oil not sunflower oil.
I now make my porridge with millet and coconut instead of oats and my stomach is happier after it.
All in all, it’s not been too hard - my family have the same main meal as me but sort their own breakfast and lunch so bacon butties, sausages, ketchup, granola etc still feature on their menu but that’s ok as they don’t have the same gut issues as me.
I didn’t use much sugar before other than baking so currently experimenting with sugar substitutes oddly I am no longer craving sugar … famous last words!
I have stopped drinking white wine and now drink only red - not too difficult a swap.
Sorry this is a long list but if you want to ask questions please do. It’s early days and I am about to have my coffee, SI, sort my donkeys then start making what I hope won’t be brick number 6 🤦♀️
Hi Wwwdot, this is a lot to "digest!" 🤣Thank you for sharing. Yes, I've a lot of homework. Between you and Technoid.
About Gastroenterologists... Hmmmm in the US anyway I've yet to find one that really understands digestion let alone nutrition. I mean they are great at performing Endoscopies and colonoscopy and removing polyps and identifying an ulcer when they see it but digestion no.
I go to private doctors one of which is a naturopathic medicine doctor. I take my research and ideas to her on what tests I'd like done and we discuss and collaborate then she orders the test. So far this approach is working really well. You may want to try this for certain tests. I would guess they have food sensitivity tests in UK that you could get outside NHS?? I will send you the name of the test I have done it's just a blood test looking for antibodies to foods.
Oh yes, one other thing I found interesting ... While Oats.
When I cut out the gluten and dairy I also cut out potato and eggs. To replace that I ate whole oats oatmeal everyday. Do they call it oatmeal in UK? Or porridge?
Anyway on my latest food sensitivity test oats showed as highly sensitive or a level 4. Potato and eggs showed no sensitivity. So this was a further indication of leaky gut.
I now only drink water and one cup of decaf coffee. Is funny now I've found I love water.
Is funny you mention donkey because that's what I call myself when I'm hiking with my balance issues and all these thoroughbreds just pass me by! 😆
Anyway I ramble, enjoy your brick I'm sure they're getting better each time. 🙏
Thank you too! Sixth brick is about to be mixed! Donkeys are sorted and objecting being in restricted grazing still as grass still too sweet for their health.
I think food sensitivity changes depending on what you eat and I think it’s a whole new world of science over and above how the gut works. We just have to pick our way through and finds what works NOW for each of us.
Part of the battle is finding food grown without the glyphosate and nitrogen fertilizer, which is killing off the soil biome, and therefore our guts.Spelt, Emmer and Einkorn flour, by Sharpham Park, I found very digestible. Available in posher supermarkets.
Lucky you to have your own animals. I have an allotment plot, so at least can control what goes on my veg there.
Exactly one year ago I was diagnosed and I started B12 injections every other day in December.
Amazingly, in the last few months I have recovered to my health status about 20 years ago … hard to pinpoint the cause as I am taking three forms of B12 every day, taking a wide range of supplements and I have removed lectins from my diet.
But, the last three months have been the most tremendous change - supplants and diet .., and red wine!
Yes it does make a difference how long you were deficient and also if there were underlying conditions beforehand which for me apart from pneumonia which I kept getting I was fine as there were none.
It’s such a weird disease and everyone’s recovery looks different.
Really good to hear about your health improvements - you've worked hard on an answer.
Do you still take all of the vitamins etc mentioned above ? Do you get regularly monitored (blood tests etc) or do you get to know what you need, when you need it , how much and for how long ?
I once was sent to a dietician and put on Fodmap for three months : I followed it to the letter but that really did not change anything for me. I really find it difficult to know what exactly my body objects to.
One of my sisters has several autoimmune problems (including Grave's disease) which means that she has had to take immunosuppressants. She has to keep changing what she eats as her body tends to treat food as an enemy. She had long covid - but thankfully is starting to get over this now and getting some of her energy back.
Yes, I still take them all although some days I don't for no reason other than I don't feel like I need them all and I will "cherry pick". I have a blood test every 6 months if I am lucky depends on how the GP is feeling!
Last bloods October 2023 showed Vitamin D around 107 nmol/L compared to 35 nmol/L in Oct 2022 so good improvement there. I can see a big difference in my thumb nails which now have full healthy slight convex nail beds compared to sunken nail beds before.
My B12 in October 2022 was 106 ng/L - now obviously it is so so so much better and for once the GP did NOT test it, so I think he is learning!!
In October 2022 my folate was 4.4 ug/L and in October 2023 is >20 ug/L but no actual value given so again that is good and I now take 400 ug every time I inject (which currently is daily).
In October 2022 my ferritin was 90 and it dipped rapidly once I started B12 injections to around 70 and then peaked in Feb 2023 at 137 but its declining again as now it is 105 ug/L and oddly I suspected it might be declining as I am beginning to feel tired again so iron is a definite every day until the next bloods.
I self-treat based on my symptoms and the driving force is definitely B12 and iron those are the ones that I know I have not taken enough of. The rest I rely on blood tests and ensuring that no odd symptoms creep back into my life! I know that's not very scientific but its the best I can do at the moment.
I have seen several dieticians and basically I have been told its menopause - really?? - I have not had a period for 15 years and to be honest I didn't notice any obvious changes as a result - I know I was lucky. I have been told its hormone imbalance but again no evidence on which to base that, I have been told its gluten intolerance - but again not too sure on what that was based and it was suggested to try FODMAP but when I researched it, I could not see how the issues it was trying to address mapped onto my experience so I gave it a miss.
What I am doing now has given me a sense of being the normal me for probably the first time in 10 years or so, I feel better mentally and physically. The main concern is that I still feel marooned to go back to the boat issue, I can see land ahead, but not too sure what the land is for if its the right place to be, if that makes sense - or whether I am seeing a mirage - only time will tell!!
I think what I need to factor in is that our body's needs are dynamic and as we heal what our body needs and benefits from changes - that is what I am trying to tune into. Every day is a new day and that's the key I feel.
Sorry to have prattled on! I hope you and your sister find support and relief too as it is a long hard journey, constantly assessing and analysing the slightest things.
Your B12 was really low - like Nackapan 's - where my B12 was found to be low after about a year of looking for an answer, and even then, not very : 196 ng/L, with normal range starting at 197 ng/L. I was on the floor by then, so really don't know how anyone with very low test results even manages to put one foot in front of the other !
Your folate was very low but now appears to be over measurable amount (>20 ug/L ) a year later, so surprised that you are still taking supplements. I remember having to take 800 ug a day at one point in the first year or so to try to stop it dropping, though.
Not sure where you would like to see your ferritin. It seems okayish. My GP said below 60 ug/L may give you symptoms, but Oral Medicine consultant thought 80 a better bottom line for me.
Vitamin D and "sunken nail-beds" ?? Care to elaborate ? Or better yet, you wouldn't happen to have a photo, would you ?
I still have large piecrust tongue and angular cheilitis (if I stop twice-daily treatment). The daily burning tongue "syndrome" is, I've now been told by another Oral meds consultant, nerve damage and likely permanent. No cause given. I'd say "B12 deficiency" - but I'd far rather they did !
If you supplement based on symptoms, how do you disentangle symptoms of B12/folate/vitamin D/ferritin deficiencies ?
I was literally crying my way through my work (I am self employed) and crying after looking after my animals and my family and basically really really struggling to get through each day - I looked forward to bed before I got up!!
But I had to look after my kids, my mum, my nephew my animals and earn money as I am the only bread winner. I put it down to grief and old age as the GPs kept saying nothing was wrong until a chance meeting with my own GP who was shocked how I looked.
The reversing symptoms were dreadful and painful and I ended up in bed for a good week each time ( my loading doses were 3 weeks apart) but once I started to recover it was reasonably swift. I find I didn’t cope well on every other day injections as it was like a good day bad day pattern so I went to every day.
I keep a list of what symptoms could be attributable to too little or too much of a supplement and I use that as my guide - very crude but it works. My hubby ‘s ferritin is at the high end of normal and that’s where I am aiming for too as I tire too easily compared to how I used to be.
I basically try to listen to my body each day - know where I took a risk and try to be as aware as I can of internal feelings and external factors. I do get it wrong but most of the time I seem to get it right.
I recorded daily symptoms for six years - and finally gave up looking for any pattern at the end of November 2022.
My GP surgery have not done routine blood tests since 2020. My consultant started doing routine testing for me :
In March last year, my folate was down to 10.5 (not low, just lower than I'd want) and my ferritin was at 40 (which I needed to raise to 80+). But this was a routine set of tests, and otherwise I would have been completely unaware. Neither of these results would have necessarily been commented on, as neither out of a "normal" range.
This March, I had more routine blood tests, but despite requesting a copy of the results, have not received any.
Glad you have managed to work out what you need by listening to your body. That's not easy. I honestly think my own body is not talking to me at all - still too furious !!
That’s a good description “my own body is not talking to me at all” I really get that.
So what if we could look at it the other way round and you do things to see if there is a response - good or bad.
I don’t know how often you inject or what supplements you take or what symptoms are worse for you. My mouth issues were among the last to heal - ulcers and swollen tongue and wilted posits s as t the back of my throat - these only cleared in the last few months so basically every day b12 SI plus two extra types plus the supplements. Could you up your B12 and supplements and see what happens.
Patience has never been my strong point, I always have too much on the go and too many ideas but when it comes to my illness I think that has helped as I am constantly looking and searching and trying things out.
It’s a thought anyway and I am sure you will find what works for you and all our bodies are different.
I have watched this with great interest and it is very informative. Without doubt I was eating a very heavy lectin diet - I ate green beans virtually every day - only just cooked and dry fiend not boiled. I still eat lectin laden legumes, grains and nightshade plants but I prepare and cook them differently.
I am 6 weeks in now and still no IBS symptoms so I have clearly stumbled onto managing to exclude something that was the aggravator to my gut. I will look at the FODMAP and over lay with what I eat now which is still pretty broad but certainly owed differently except I do exclude refined sugar, peanuts and cashews unlike before.
Fear not the lectins 😁 By the time you've cooked the legumes properly there's not going to be enough left to cause any issues.
A fun fact is that your skin "epithelial cells" actually produce lectins. It is part of something called the "Lectin Pathway", part of the "complement system" which is part of the innate immune system. These lectin-type proteins bind to carbohydrates on pathogen surfaces. So you probably have tons of lectins inside you right now! aiee! 😜
That’s good news too as I don’t want to exclude anything that’s necessary to my recovery. Clearly there was an antagonist in my diet - more detective work is needed!
Thank you. I have watched this and great debate and discussion. It certainly is good for thought.
I think the surveys tend to be with healthy individuals but I do not see myself in that category as I have autoimmune PA and have suffered excruciating IBS for two years now. But since excluding lectins and it’s over 8 weeks now I am still IBS free but I do eat potatoes, legumes, pulses and fermented wheat. I still drink cow milk too.
As you have said before it is possible that something within the group was problematic such as fructans. Or could it be that removing these foods enabled my gut to heal to a point that my gut is now able to function? I am still able to eat anything at any time now without any symptoms.
Withdrawing problematic foods and then slowly reintroducing them seems to be one of the best ways to handle IBS. If you're now in the position that you can eat anything without symptoms, then you're set! 😁
Yes prior to this I was removing subsets such as gluten, dairy etc but with no results. It was only when I went whole hog and took out all lectins, gluten, A1-casein and switched to wild fish only and pasture fed meat that I have made incredible progress. I am documenting best I can but it’s complex as life is getting in the way!
I am also still supplementing and self injecting more frequently to spur on body healing. I cannot say where I am heading but only know that day by day is progressively more promising that where I was.
Thank you again Technoid. I really appreciate your input.
I have never listened to a Dr Grundy podcast as I find them annoying!
I chose instead to read his books and cherry picked what made sense and what I had not tried.
I doubt I will ever know for sure which element of what I have tried over the last year was the main success factor for me - I have an open mind but I do think that we all need to test and see.
I have reintroduced some foods and some have had no immediate effect and some are almost immediate. I think exclusion and slow reintroduction of potential “wwwdot” triggers was the key. We have to be our own scientist and keep good records to learn as our bodies have unique past experiences and unique current symptoms. I hugely value touch points from this forum when we have shared experiences that take me a step forward in my health journey.
Thank you for this Technoid - invaluable and shows the unfortunate commerciality of seeking health as well as the minefield of learning we have to achieve.
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