I watched 5 hours of resource videos on the PA youtube site, mainly a conference, and I came across some interesting slides that showed the small intenstine vili and cells of the GI tract before and after B12 injections. They healed! From what I understand, B12 deficiency can result in DNA replication issues which slows down the creation of tissues which require frequent replication such as the cells lining the GI tract and myelin membranes in nerve tissues, hence I figure, one of the reasons for the frequency of report of neurological and GI symptoms in people with B12 deficiency.
I also understand that GI dysfunction can occur alongside and/or exaccerbate B12 deficiency.
Can anyone point me in the right direction to help me understand more about the link between GI dysfunction and B12 deficiency, both personal experience and published info/resources?
Did anyone see positive changes in digestion and GI symptoms after starting injections?
The anaemia consultant I seen on Friday recommended seeing a functional GI doc in 3 months time as he suggested the root cause of my 'non-autoimmune functional B12 deficiency' is due to a functional GI issue, which I would agree with. I have had GI issues since 10 years old and despite seeing my GP several times over the past 3 and a half decades, they dont seem too bothered to explore this.
I am preparing to write to my GP practice and have a letter from the private consultant also. I have given up with GP's over the years but since learning about PA, I am highly motivated to help not only myself but others in my region who may be suffering unnecessarily and want to be proactive and useful and armed with as much info as possible.
This group is awesome BTW! Thanks in advance!
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Beccy_123
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In the past, I found it sometimes difficult to know whether it's my thyroid or B12 deficiency causing symptoms as they overlap. As you probably know, what most GPs consider a normal B12 result is usually not, as the tests are so unreliable. Hashimoto's Hypothyroidism and PA, both autoimmune, are often interlinked and, once you have one autoimmune condition, you are more prone to others.
Many researchers believe leaky gut/intestinal malabsorption is the source of autoimmune problems and I believe this is at the bottom of all our own family autoimmune/Hashimoto's thyroid/B12 issues. Dr Marc Ryan's article below (on his Facebook page) is one of the simplest explanations I've found re. leaky gut and lack of absorption leading to thyroid/B12def. as well as other autoimmune diseases:
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"Hashimoto's Health Tip: The Little Paint Brushes in Your Tummy
Anyone who has lived with Hashimoto's knows that this is so much more than a thyroid problem. The biggest axis of trouble is often found in the thyroid-brain-gut connection. And one common problem that causes this is leaky gut or intestinal permeability.
Many researchers believe that the gut is ground zero for autoimmune disease.It is the place that autoimmune disease is born and the place that makes it get worse and worse. And when things get worse in the gut, problems in the thyroid and brain often follow.
In this post, I wanted to shed light on some little known but very helpful enzymes called brush border enzymes.
The small intestines are the place where leaky gut often happens. And the walls of the small intestines are lined with tiny hair like protrusions called microvilli. On a regular microscope they kind of look like a tiny, fuzzy paint brush. This fuzzy appearance is why they came up with the term "brush border" to describe them. This is the place where absorption happens. And many people with Hashimoto's suffer from deficiencies of important vitamins and nutrients (like vitamin D, vitamin B12 and B6, zinc, selenium, magnesium, iron, etc.). One of the reasons for this is the breakdown of these brush borders. Foods high in lectins or other inflammatory substances (like gluten, and other grains, beans and nightshades) can actually cause these brush borders to get crushed and destroyed.
The microvilli (little hairs) that make up the brush border have enzymes for this final part of digestion anchored into their membrane as membrane proteins. These enzymes are found near to the transporters that will then allow absorption of digested nutrients."
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After years of stomach problems, acid reflux, hiatus hernia, H/pylori, I personally find kefir first thing in the morning and sauerkraut (or other bitters e.g. ACV, lemon, lime, etc.) after meals keeps the little villi healthy and happy 😊
Having been a member of the forum for many years, a lot of my past posts and replies were linked to various professors’ etc. comments & research into leaky gut etc. but I can’t seem to access all this past history any more 🤔?
I’d always used Biona sauerkraut with juniper from local health food store -and Yeo Valley Kefir (with a spoonful of honey) both now available from Tesco’s and delivered with rest of the groceries. At present though, for the first time, am using up a large jar of Bavarian sauerkraut from Waitrose but prefer the Biona small jar for my smallish fridge.
If you’re out and about a lot, at work say, A.Vogel’s Centaurium, is a small bottle of the bitter herb, centaurium, which works equally well for the uncomfortable bloating after eating.
Thanks for all this Polaris , great to have recommendations, and info!
Is the Biona sauerkraut unpasteurised? I had understood that it was better to have unpasteurised for gut health, but haven't found any in supermarkets. I tried making it myself but haven't done it for a while as I don't have the energy 😔
Yes organic but pasteurised - also unable to find unpasteurised locally ktwing - The producers are maybe covering themselves so I guess you’d probably have to make your own - kimchi might be less smelly?
I only once made kombucha, which recipe said to leave somewhere warm so I put it in airing cupboard in the hall. When unexpected visitors arrived, the smell was a bit embarrassing 🤭. All these fermented foods are said to have huge health benefits though.
Haha, yes, I've kept up with sourdough, but had to give up making kefir and sauerkraut as the responsibility and time involved became too much, but my adult daughter laughs at how I talked about my cultures as if they're pets 😅
My personal story started when I got horrendous food poisoning symptoms.
I'd just moved house (major stress) had a chronically stressful job, wasn't getting enough sleep and wasn't eating well. I'd had a low intake of meat for some years, conscious of reducing the impact on the planet. I still ate mostly fish, cheese, eggs, and meat once a week. But with a stressful job I also did not spend time thinking about what I was eating.
The food poisoning was from some unfridged fresh pasta that I forgot about in the haste of moving house. It was bad but after a few days I recovered and felt fine.
Few months later I had ongoing terrible GI problems - tummy pain in the night and constipation. Intolerance to alcohol and anything sweet.
When to GP who sent me for colonoscopy and they found polyps. So I thought that was it. But at the same time, a tumour appeared on my jaw. This was a benign parotid (Salivary) gland and when I went for checks on it they also found a thyroid nodule.
Overall an exhausting kind of year in 2019!
By 2020 though, I began experiencing B12 symptoms like dry mouth, heat in body, insomnia, diarrhea (but I didn't know that's what they were). Went back to the GP who tested for diabetes and signed me off work for stress, effectively telling me I was stressed and the heat was in my head. So I went to an acupuncturist instead who did cupping and told me 'you have alot of toxins in your body' so thought I should cut out alcohol for a few weeks/months. The acupuncture made me feel better but had stop with the first lockdown.
I did have another drink, just a couple of glasses of prosecco to celebrate something, about 2 months later and experienced very weird symptoms. After that I went for the op to remove the tumours and within 3 months my B12 symptoms came on very strong.
I suspect I did have SIBO and a bacteria overgrowth in my gut - leaky gut. And I believe all of the symptoms I've shared relate to a bacterial imbalance in my gut microbiome caused by the ongoing stress of a job, house move, poor diet and no sleep. Alcohol probably didn't help but the GP did not think it could be the primary cause. I think in the end my gut needed cleaning up with the right diet and I did not know that at all at the time.
I now eat meat 4/5 times a week for an evening meal and believe I need more B vitamins than perhaps others, genetically. I think I am predisposed to deficiencies and have a sensitive gut. But I'm still injecting B12 so hard to know for sure. Bowel sensitivities are in my family.
GP's don't care about the gut because they don't study it, much like vitamins and B12. It's an unknown to them. So if you have IBS you have a somatic disorder - it's technically in your head because they can't find a cause.
We're unfortunately dealing with rudimentary healthcare that doesn't listen to age-old wisdom from Hippocrates:
"All disease begins in the gut"
I hope you can get to the bottom of your concerns. Here's some research on the effect of stress that I found very interesting. ncbi.nlm.nih.gov/pmc/articl...
Also - from my research it seems biodiversity in microbiome flora leads to better health outcomes. So much of today's advice suggests we should all eat more plants and vegetables and yes we should be consious of this, but the gut thrives on variety. So if you're not eating a range of nutrients and different foods, including meat, your health is likely to suffer in the end.
Thanks Pickle500 for sharing your story. I too believe strongly that a healthy microbiome is critical and have tried every gut healing diet published to date over the years and have become acutely aware of what works and when so adapt accordingly. I got that I couldnt digest any animal product and some fruit and most veggies 6 years ago when I was at my worst before this past 6 months, and found a plant based diet life saving 5-6 years ago. I still drink celery juice most mornings and can eat a much wider variety of foods before 6 year ago. I think I have SIBO which I mostly had under control before 2 bouts of covid. COVID was the switch for me and has sent me into a bad place once more physically - I need to do an even deeper dive into my lifelong GI issues with expert help. Im giving the B12 injections time to do their thing first. I love acupuncture BTW and found it actually helps. Stress is also a trigger for me but over the years I have studied and found I can reduce stress and improve my own resilience by practicing proven techniques such as HeartMath exercises (I am a licensed heartmath coach!). 😀
That's interesting - HeartMath is a new one for me! Never heard of that before but open to exploring.
What I would say is that, after my initial bout of food poisoning and troubling GI symptoms which sent me off for investigations, I assumed that reducing my meat intake would help. I was having similar difficulties digesting meat, for some reason, and thought that more plant based fruit based intake would be better.
I think that is where things went particularly wrong for me, since within 2 years I had a severe B12 deficiency. I doubt that it was solely due to low intake--more gut imbalance--but I am now very scared about plant-based diets and the risks of low protein intake/overeliance on beans which promote bad bacterial. I also ate alot of hummus and chickpeas and recently read that it is terrible for the gut.
Now I'm literally consuming meat, veg, potatoes most evenings of the week and keeping things clean. My body seems to want this, but it is difficult to know for sure with the B12 injections. Certainly the injections quite quickly resolved the diarrhea and poor stools I had.
Lots of free info and guides here on HeartMath - really helpful for overall stress and help for GI tract via regulation of nervous system, but everything, not necessarily a panacea:heartmath.com/
Great to hear you are proactive, want to help others and I heard about HeartMath when studying the gut-brain connection.
It may be worth looking at the gut-Brain axis so that’s the central nervous system, the autonomic nervous system, the enteric nervous system, the vagus nerve, the gut microbiota etc.
Just to show, how connected the gut & Brain are, in the 3rd and 4th week of pregnancy, the gut is formed from special ‘brain cells’.
My own personal experience has been completely character building. Had lots of antibiotics as a child for recurrent ear infections. undiagnosed coeliac for decades, have had salmonella, campylobacter, norovirus.
Small Intestinal Bacterial/Archea overgrowth proved by gut Microbiome test as severe reaction to breath test. Plus my ataxia came back, my tinnitus became deafening and the penny dropped - I am being robbed !! 😂
Several flares. I can’t say my gut problems have improved as the valve between my small and large intestine doesn’t function properly. Overlooked but common with coeliac/SIBO, under neurological and hormonal control.
I just been diagnosed with the same as you,PA caused by malabsorption, and have had the same thing GI issues past few years,
I’ve just seen a private consultant too who gave me my first injection and taught me to self inject, also diagnosed me with sever iron deficiency, another thing my GP said I did not have😡,
how is this all possible is beyond me, so shocking we have to go private for something they can so obviously detect and treat easily! Like you I want to help my local area become aware of this and be able to access treatment and get the correct diagnosis rather that suffer from this horrendous illness, Im on my 3rd injection today not much different yet! but he said it would take at least until Christmas to feel the Benifits, how are doing? How many injections are u on now and did you have neurological symptoms too?
Please can I ask what kind of specialist you saw? I used to get B12 injections years ago and have a hiatus hernia and acid reflux - my symptoms are now a million times worse after covid and taking anti virals for covid which really upset my stomach, I’ve cut out yeast as that definitely gives me more of an upset tummy but neurological symptoms still very much there including muscle weakness and cramping, panic attacks in the night and shaking, I had one last night and felt really cold before I went to bed but my bod felt red hot and then woke with my gut up to hernia feeling like it was cramping and my body feels exhausted this morning - I am meditating at the moment a lot so I calmed down quickly and things settled but then darent go to sleep? My GP keeps saying it’s long covid but I had symptoms which were not as severe before and acid reflux and a feeling my throat was closing would sometimes wake me through the night - I am in medication for a health condition so convinced my gut is a bit of a mess to be honest and it’s all linked - I just really want to get to the bottom of this and feel very stuck! My gran also had pernicious anemia for most of her life thank you Becky
Yes. I had increasingly bad digestive troubles for about 3 months before my diagnosis/treatment. It took about 4 months for my digestion to clear up but it did so completely and I've no troubles now at all in that dept.
many thanks for your very helpful post. While my main challenges with PA are insomnia and burning feet - I realise that I have been enjoying much greater health in my digestion and elimination! I used to suffer from bloating and gas but no more.
I sincerely hope these burning feet become more soothed because they’re directly affecting my ability yo sleep.
Good morning and thanks for your interesting post. I have a hiatis hernia, acid reflux and have had gastritis many times over the last 10 years or so, when the hernia was diagnosed after an endoscopy. I was prescribed Lanzoprazole and regularly took Gavisgon extra for relief. The situation suddenly got much worse last November, when I had many neuro symptoms, fatigue and other B12 deficiency symptoms. I saw my gp here in Spain and explained my suspicions. She tested and said I had normal serum B12, so "didn't have a deficiency". A private haematogogist said I "didnt have anaemia, so can't have PA or a deficiency". I explained that my older sister has PA. I was given some very strong antibiotics earlier last year for covid like ear and throat problems, which left me with tinnitus. I wondered if it was all related. I began SI eod and within a very short time, the acid reflux and gastritis massively improved (unless I eat very fatty food or some green raw vegetables, such as brocolli, kale etc). I have also found that kefir in the mornings and acv every day has been very helpful to my digestion and stomach health. I have weaned myself off lanzoprazole all together and rarely get acid reflux now. If I have a delay with my injection however, indigestion, and acid reflux come back very quickly! Atm, Im trying to locate a functional gastro specialist in my region but not having much luck. I really need a gastroscopy to see whats going on after 10 years. Good luck with everything and please let us know how you get on.
Ive found a couple but too far for it to be practical. I also found a private specialist in London, who has written 40 papers on the subject. She is an English speaking Spanish lady. I can try to find again and post a link if you like?
Hi and sorry for the delay in reply. I couldnt share the link re the specialist but her name is Dr Natalia Zarate-Lopez and she works at the Cleveland Clinic London. It would be worth a look at her profile on there but it wont come cheap Im afraid.
Which of the PA Society's conference videos shows the small intenstine vili and cells of the GI tract before and after B12 injections? What were your levels of B12 before you started injecting? What are the gut problems you are experiencing?
Were your IFAB results positive - if you have PA, then you might have issues with low stomach acid. Equally problems with bile acid can lead to very low levels of B12.
There are some GI tests that can be done in primary care and some that can only be done in hospitals. Has your GP done any of the standard GI tests? It's incredibly expensive getting tests done privately so perhaps ask for the standard GI tests that your GP can do and if they show nothing ask for a NHS gastro referral.
There's nothing to stop you from going privately as well but ask for the private gastro referral via a private GP (one of the cheap online services which cost about £40 per appointment) so they are clearly separated.
According to private Doc K, he suspects non-autoimmune PA caused by functional 12 deficiency - he suggests functional gastric issue. IFAB negative. I havent had many GI tests to date, just obvious ones (celiac, etc). GP believe I have IBS but not proactive or interested in investigating further for many years now (😡). I will do more research and be properly informed before approaching them in a few weeks, once B12 treatment kicks in and my brain functions better lol! Digestion is improving even before B12 jabs but not without very concerted effort and supplements.
Can you say how priv Dr reached that conclusion? You didn't mention any test results.
I did look up your Dr as per your private message. He's charging £700 for iron infusions which includes £200 for the consultation. If you add blood tests this soon becomes very expensive.
I have mentioned more about tests in other posts. He seen test results prior to offering an appointment. I didn’t have an iron infusion, just a consult and prescription so less than £300 in total. I was prepared to pay as I’m not getting anywhere with NHS and no longer wished to suffer any longer. Personal choice which I realise might be different to others, which I respect. I would choose NHS if the choice was available, which for me, definitely wasn’t. He decided not to get more tests (MMA, homocysteine) after meeting me and discussion, as latest info suggests ‘treat for symptoms with B12’ as tests not going to provide clarity either way. I drove nearly 300 miles to see him with 2 days notice, due to recommendation from PA society and others here. Excellent value.
Could you post your B12 levels before you started having injections. Are you a vegan? If you are youngish and not a vegan, you should not have low levels of B12.
Could you give a bit more information about your symptoms - are we talking about chronic diarrhoea?
It would be a good idea to list the tests that you have had. Apart from coeliac, have you had the standard primary GP stool tests - faecal calprotectin which gives an indication of inflammation in the bowel, faecal occult tests for blood in the bowel (it's the bowel cancer screening test), H Pylori stool antigen test and there's another test that checks for salmonella etc whose name escapes me.
For people with low levels of B12, there are various conditions to look out for. Low stomach acid occurs in patients with PA and it is linked to levels of the gastrin hormone. This post explains it well:
Low levels of stomach can be diagnosed with serum gastrin blood test which will set you back about £300 privately. It's nuts but a GP will not be able to authorise a serum gastrin test.
Another condition to look out for is bile acid malabsorption (BAM). There are no tests in primary care for BAM - two key pointers are low B12 and high triglyceride levels. In terms of symptoms, the patient typically has urgent episodes of diarrhoea, sometimes many times a day, and is very sensitive to fatty foods (e.g. ice cream).
IBS is considered by some (e.g. Professor Spector who runs ZOE) to be an unhelpful diagnosis.
I won't rush into private consultations. There's a myriad of gut disorders. It's better to plod through the tests one by one ruling out conditions. Lots of people with low B12 have gut problems so this is a good place to ask questions; people with PA have a specific problem but as you don't know whether you have PA, you will need to consider the other options. I would definitely ask for a referral to a NHS GI consultant; you might need an endoscopy or colonoscopy to investigate what you have and these are not cheap privately.
Thanks for this! In a nutshell I didn’t have b12 tests before being plant based, but had symptoms for 30 years of both Gi issues and B12 deficiency. I’m going to scroll through my entire medical record to see exactly what what over the years soon as this just arrived from my GP and will update soon with more info. I avoided gluten since early 20’s based on brain fog, bloating and diarrhoea. Essentially bloating, intermittent diarrhoea and over the years, less tolerant to certain foods, animal products of all kinds in particular. I respond best to a low fat, high carb diet rich in fruit and veg. The only grain that currently agreed is oats. Even rice and quinoa can be troublesome. I have tried (over many months), diets such as low FODMAP, carb specific diet, keto, low carb, paleo and since late twenties, have always eaten as clean as possible. I had a big reduction in symptoms and became much more tolerable to a wider range of foods when plant based and supplementing daily with B12 and folate 6 years ago but slowly this declined, until last oct when I had covid. So tests have shown high B12 but haematology hints at PA. Symptoms certainly do but cross over with thyroid etc. I’ll investigate further in due course. Lots to research first on gi, thyroid etc. I have improvements since B12 injections and the idea is that after supporting with B12, after 3 months, this will assist with identifying and hopefully treating/managing the underlying functional cause.
Your preference for a low fat diet and your preference for oats does indicate that you might have a bile acid issue. If eating too many scoops of ice cream causes you diarrhoea, that would be a pointer. Oats are a natural bile acid binder which might indicate why your gut likes them. Imperial College and University of Warwick are universities that research bile acid issues. If you live near either Coventry hospital or NHS Imperial trust in London, they would be good places to ask to be referred to.
It sounds as though it might be worth getting a referral to a GI department for a test for BAM. I posted some more information about BAM on yesterday's post by SleepyBunny:
For 6 years or so I took a liquid 50% mix of adenosylcobalamin and methycobalamin, 2 or s drops a day: metabolics.com/vitamin-b12-... (76 mcg per drop) and metabolics.com/vitamin-b12-... (86.5mcg). I may have missed the odd day too. I also took Methyl folate amazon.co.uk/Methyl-1000mcg... (1000mcg) daily for most days. This summer, I felt I needed more, after the first COVID bout, and added a multi b vit, I wasnt digesting well and my diet was more restricted too: bodykind.com/product/12881-... so an extra 200mcg folate and 200mcg each of the adeno and methyl B12.
thanks! B12 dosage seems ok for healthy person with no absorption issues although good you upped to 400mcg, I think 500mcg is a good spot if taking a single daily dose and without deficiency. That covers you even via passive absorption. Liquid methylcobalamin makes me a bit nervous due to its light stability issues and if bottle was not used up fairly quickly.
Why such a large methylfolate dose? and for such a long time? Did you have a folate deficiency or folate absorption problem? Pushing folate very high can mask a B12 deficiency.
Not a fan of the nearly 30mg B6 in that B Complex, thats only 20mg short of the dosage observed to cause issues in some people. I think any risk of causing further neuropathy is something very much to be avoided by anyone with B12 deficiency.
I suspected a methylation problem, cross over symptoms. I was advised by private do to reduce to 500mg on injection days only. No genetic tests done yet on this. I'm still impriving in all areas. This morning I had asthma symptoms, not had these for years, so maybe theres healing in the respiratory system since B12... I think there's a close connection between digestion and respiratory system. My digestion is healing/improving and I am already introducing more foods and even a little cheese - only 15 days since first injection! I cant stomach the smell of fish yet. (my sense of smell is extremely sensitive of late! Maybe another 'healing' response?..
I have had GI issues my whole life. I was given Cream of Wheat cereal as a child and would always get sick. I look at old school pictures and I look sickly pale, almost green The only time in my life that I was "healthy" was seven years being gluten free . After a major move, going back to eating gluten products and a fall that resulted in breaking both ankles last year ,my intestines have really been struggling. Probiotics and digestive enzymes help some. I was diagnosed with IBS and spastic colon before going gluten free. I really need to be tested for gluten intolerance. So far I have not had any digestive relief from my B12 shots. I do believe there is a connection.
I believe my PA started in my gut. I had my pelvic area ripped open by a large dog on Christmas day 1984. Over 6 years i had 4 abdominal surgeries to remove adhesions and Endometriosis and finally a hysterectomy. I was given lupron injections fora year to put me into menopause at 23 years old. My colon and intestines were detached and scraped of adhesions and reattached. I was put on so many drugs i can't even remember. This is when everything went downhill and now 38 years later of abdominal bloating, pain, bowl issues, weight issues, depression...... Mostly caused by Egotistical doctors telling me it was all in my head. Many of them questioning my surgeries, even though i have major scars to prove it. I have dropped my pants many times to prove it. I have taken some great products to help myself. I use a great liquid vitamin, and a probiotic with great enzymes, and a colon cleanser. They literally saved my life. So i suffered for what is now 38 years, with gut problems that i was able to control to a point with diet and supplements, that i could at least function at half capacity. Until last year I was diagnosed with breast cancer. That went well and I'm fine now, but they put me on another hormone blocker and that is when my health really fell apart. Nearly Any symptom you can think of for PA started happening. I soon was unable to walk at all. I was literally crawling on my hands and knees. And after 38 years of suffering and NEVER once having my b12 tested, my GP in my tiny town of 187 people found my PA!! So one can go an entire lifetime suffering from it. I strongly feel it all starts in the gut!!!! Now I have taken control of my health and my life and i self inject daily. I have what i feel are irreversible symptoms, but at least I'm in control and know exactly what it is, after nearly 4 decades of abuse from doctors, and family who didn't believe me and abused me because of it. I no longer talk to my family and Im treating myself with b12. I'm in control now!! And at peace finally, simply because i finally have an answer.
Good luck with your journey. We are all here to help. You found a great forum. I too feel compelled to make a change and try to educate as many people as i can. 🦋
Bless you for persevering. I'm 2 decades in, I even asked for b12 tests but was refused. I now have a kind Rheumatologist who sanctions tests. There is good out there, though it may take time to find them.
Thank you. I'm glad you found a good specialist. Blood tests are cheap and easy. I don't get why we can't just get what we ask for. What is the harm? Good luck. Power to your as well. 🦋
I had multiple vitamin and mineral deficiencies including b12 plus low thyroid and osteoporosis and I have pancreatic insufficiency, quite mild but I think the enzymes I take have helped. It’s complex and I feel it’s a bit chicken and egg as no one seems to know how it all happens but I suspect there is an interaction with all the various conditions I’ve developed in the last two years.
Would be great if the nhs had a holistic approach as I currently traipse around different consultants often getting conflicting advice.
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