Hi all, I'm very new to all of this, diagnosed 6 weeks ago with PAF which was a bit of a shock to say the least. Though at least it was good to get a diagnosis for the odd day when l had intense fatigue. My AF only started though after my stomach problems which started two years ago, intense stomach bloating every day regardless of what l ate. After various invasive procedures they are still unable to find a cause and l fear they are soon going to discharge me under the IBS diagnosis, despite the fact that l don't fit the profile.
My gastroenterologist doesn't think there is a connection, but my AF always comes at my worst bloating episodes, and always in the morning after a bad night. Does anyone else have this connection and have you found any way to stop your gastro issues from setting off your Afib?
I only scored one on the CHAD score and have decided against anti coagulants as they don't help my stomach! Is this wise or should l persevere, I've tried Edoxaban and Apixoban so far?
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Orbitpluto
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I'll reply more tonight when I get home. With respect to your gastroenterologist ... he/she doesn't know what it is talking about. There is a Heart/food/gut relationship and the link is the Vagal Nerve ...... basically, an information superhighway linking brain and gut and heart - suggest you Google it.
Some months after I was diagnosed with paroxysmal AF I realised the onset of an AF event followed food. My symptoms were .......... burping, intestinal gurgling, diahorrea and very, very painful bloating. Not all at once, any one in no particular order/sequence but it would always be the bloating that would kick off the AF.
I had decades of gastro issues and gaslighting. Both before and after a gall bladder removal!I do have IBS-C , gastritis, extreme bloating .
I also have occasional bouts of pancreatitis ( Chronic Pancreatitis) and the odd bout of Diverticulitis , Gut Dysmotility, Pseudo Bowel Obstructive Syndrome ( the nerves react in my bowel as though there is a blockage basically halting in a tight way reducing movement of things going through).
Recently I've been diagnosed with Pancreatic Enzyme Insufficiency and Functional B12 Deficiency Anaemia and Folate Insufficiency, basically my stomach acid is low from genetics and made worse with my required medication and I don't produce or release enough enzymes to fully absorb or metabolise vitamins from my diet. Because I had a good diet this was also overlooked for years , and as it caused me to be very thin any changes in my blood were brushed off as temporary dehydration or self inflicted malnutrition.
All of my gastro and cardiac issues are linked to having Ehlers Danlos Syndrome, a genetic issue that affects collagen production and anything that is made up of connective tissue in the body, including the digestive system , autonomic nervous system and the heart. And a condition that it's taken me decades to finally have added on my medical charts.
The effect of EDS on my autonomic nervous system has caused many of my Neurological gastric issues, which were all overlooked mainly because there are only a few Gastroenterologists in the UK that have any knowledge about Neurogastroenterology or the effects of Connective Tissue Diseases on the digestion , and most gastro consultants have no idea about nerve induced digestive issues.
The EDS also contributed to me having a genetic macro nerve fault in my heart which caused Chronic Dysautonomia and finally triggered aFib and other arrhythmias.
Why all of this detail, Bee?
Because , I can say from unfortunate experience that each element of your body can not be looked at in isolation, and IBS can be very severe and the final symptom of many illnesses that don't start in the digestive system so won't necessarily show up in tests of it,
Your aFib , for example , can be caused by Autonomic nervous system dysfunction and not just from changes in the physical heart or circulation system .
The ANS can affect your heart , but it's also in charge of all the, "rest and digest", as well as, "fight or flight" responses your body gets to do it's normal, involuntary jobs.
People with ANS dysfunction ( acute or chronic Dysautonomia) or Central Nervous System Sensitivity Syndrome can get various hard to diagnose issues throughout the body , some of which can be severe or cause greater risks of sudden health issues, which have neurological functioning issues at their core.
For people whom have aFib linked to ANS triggers and not just cardiac or metabolic or lifestyle roots it is far more common to have flares in aFib, palpitations and tachycardia triggered by things like digestion or stomach symptoms like bloating , IBS or bowel and urinary function , temperature swings, orthostatic changes ( positional movements) , environmental changes , sleep disorder and sudden physical and mental change , better known as , Stress.
The nervous system reduces the efficiency of your digestive system to cope with normal things , but the knock on effect is that it is highly sensitive and then overreacts with a "fight or flight" response to ordinary changes in your body functions raising your heart rate , causing highs or lows in blood pressure, and having a knock on effect of triggering an aFib event.
Often , getting a good combination of nerve relaxant medication or cardiac medications that more specifically work on the ANS than just a standard beta blocker is required to help manage and control the ANS causing so many issues throughout the body. When the triggers are controlled by Pacing Activity , Diet , Appropriate low level exercise, Relaxation and Medicine it also reduces aFib and tachycardia related events.
Getting a diagnosis of this can take many years and often does not occur without you doing a lot of research and getting examined by a NHS consultant out of your area or Centre with experience of Neuro Induced conditions .
It worth asking your Gastroenterology Department if the issues you are having are linked and neurological in nature and asking for a referral for nerve testing.
Getting a referral to a Dietician can also help because they order stool and blood tests and other things that Gastroenterology or the GP seldom bother to do , even if you ask them, especially if things don't show up on scans which functional metabolic and neuro issues don't unless they are causing inflammation at the time of testing. They can also help guide you through doing FODMAP and diet and exercise changes that can help reduce flares from various gastro complaints that cause bloating , IBS and other painful stomach symptoms.
Trial and error with your Diet can be the final key to silencing that particular trigger, but avoiding overly restrictive Diet regimes unless they are medically appropriate. It can take time but you can get there.
If you want to chat more feel free to message me in private chat , Take Care , Bee
My goodness Bee ........... if I mentioned only one or two of the things you've touched on my GP would roll her eyes round and round - then they would go still and she'd go into a stare and slump in her chair.
Yes , which is probably the reason it took so long for me to get properly diagnosed , if it's not common they just dismiss it.Until I got proactive and learnt about what should be checked and found out where they should refer me instead of discharging me with the " it's just one of those things we don't know" comments I got nowhere.
Thank for all that incredible information Bee, you have given me a lot of food for thought, food which hopefully won't set off my stomach again 😊 I'm taking notes for my next appointment with my gastroenterologist, I'm flailing around trying to find a trigger, l think a dietician should definitely be on my list.
Don't be surprised if your Gastro rolls their eyes and brushes it off though, at best you might get the referrals. As I said, most gastro consultants have no knowledge and little experience or interest in neurologically induced digestive problems. If they can't operate on it or treat it with easy or common options , and it's a long term issue they aren't interested and you find yourself discharged with the symptoms diagnosed without finding out the root causes.
Neurologists also appear from from clued up on treating autonomic nerve issues that affect function in other parts of the body.....which always seems odd to me as the Autonomic Nervous System is half of the area they specialise in , and it's dysfunction is often a common cause of many of the long term conditions that people suffer alongside a chronic illness or after a severe infection.
Again , it feels like if it's not common , easy to fix with surgery or common treatments and takes a bit of less usual ( but cheap) tests to learn about they aren't interested and are more likely to breath a sigh of relief if you are asymptomatic on the day so that they can discharge you when the scans are clear.
There's a lot to take in there, I've read through all you have said twice it's so enlightening. You've made me think about my own situation and consider things I hadn't thought of.
So, how did you eventually discover all of this? In your view should Orbitpluto (great name btw) and possibly myself see a neurologist, gastroenterologist or someone else?
It really does depend on your particular situation and what illnesses you've already been diagnosed with, as well as which symptoms you have begun to get regularly.Keeping a good diary for a month of all symptoms and when they happen in the day , and your daily activity and diet is the best first start.
Not just heart or gastro ones but any symptoms or pain issues that come in a regular pattern or frequently through the month.
Take a record and print out any blood pressure and heart rate tests you do.
And, believe it or not, take photos and keep them on a tablet so you can show your doctors with dates and times when a visible symptom happens because they will often not believe something is happening unless they see it with their own eyes, especially if you are asymptomatic on the day of the appointment and basic tests are normal.
I didn't get much interest in my bloating and pain until I took in two photos one taken 15 minutes after dinner in which I looked 7 months pregnant the second taken an hour afterwards back to a wash board stomach..... They were pretty shocked but finally took things seriously.
It's that which can help you and the doctors see a pattern .
Also , get a better idea of the illnesses or health issues in your direct family, including aunts , cousins etc.
If you want to chat more please message me with more details , I can always help to guide you through from there, take care, Bee
I don't know where you're from, but that's an attitude a lot Gastro have, especially if they are "proceduralists" i.e. do a lot of endoscopies. If you can, it might be worth finding another Gastro for SIBO testing or treatment. Meanwhile, you might want to try the FODMAP diet on your own to see if it helps.
Getting SIBO recognised and diagnosed is an absolute nightmare , they all act like it's just a phantom illness that only exists in Google.It's one good reason for going to a Dietitian and asking them to do a stool sample if they don't automatically suggest one , because SIBO and many other autoinflammatory digestive disorders don't necessarily show up in the early days in the blood , and don't always cause bacteria in the urine.
They also don't show up in scans unless they are active at the time of testing or have progressed to the point to have caused damage or scar tissue.
Yet, for some bizarre reason , even if it's their area gastroenterologists resist testing your poop like the plague..... Maybe because they'd have to admit that there is something to treat and they'd got it wrong.
Doing the FODMAP under Dietitian guidance rather than just on your own is also the best idea too, only because you keep seeing them and they write down the evidence of how or if it has worked in their notes and retest you so you can see if it's helping along the way.
You can get a more specific profile of what foods you should avoid or not.
They can also choose to send you for further intolerance testing for specific foods and chemicals outside the realms of testing with diet changes.
And , most importantly, the GP can't ignore the results as they do if you come in and tell them how your diet affects you.
My daughter was diagnosed with subclinical inflammatory bowel disease off the back of poop tests and various intolerances by going by this route. Her M.E/CFS , IBS and constant gastric issues have improved massively since , which has helped her control her Tachycardia and Fibro too.
She got it all sorted with help in months whereas it took me decades to fight to get help for these things.
Thanks for that, the overwhelming theme of the answers seems to be that of a dietician, so I'm going to request a referral to one next week, either that or find my own. Thanks for all your help...
In the US they have a breath test for SIBO. But yes, many GIs do not take it seriously, however, some do. Fortunately, with my Medicare insurance, I'm able to see practically any G I want, so I will be seeking one or more that specializes in SIBO.
While the FODMAP diet can help, often a course of antibiotics, specifically Rifaflaxin, is needed. It's often combined with another antibiotic. There is also something called the SIBO elemental diet, which you can google.
When it comes to SIBO it's breath tests here too , but trying to convince them to do one before you they already give you PPIs or other medications that you need to stop for weeks because they cause false negative test results is virtually impossible.As, yet it juggling these timings that has eluded me getting a SIBO test done, I've not managed to get to the point that I wasn't in AandE and started on antibiotics before the effect of my medications would alter my results as yet!
The NHS seem to be terrified of the idea that SIBO actually exists.
Here they sometimes treat SIBO empirically with antibiotics, without testing, for some of the reasons you gave. I'm actually on the way for a G.I. appointment now and one of the things we will about will be SIBO. He's more of a proceduralist however, so not sure how much time will spend on that. If not, I will seek out someone that specializes more in SIBO.
It would be fine if the NHS had progressed to that point as at least the issue would be treated more proactively and diagnosed based on symptoms not just testing.Unfortunately, as well as being sceptical about SIBO they won't test for it or test stools for inflammatory markers or bacteria in good time either but they are not willing to treat without it which causes a lot of unnecessary pain and distress and far too many Emergency trips.
It's getting the timing right for the tests that is also crucial.
Well I said I write more. Following on from the four symptoms I described ... I presented to my GP at the time and he arranged some blood tests .... specifically looking at IBS and Coeliac Disease. These came back all clear. Although he knew of my AF he didn't link these four symptoms with AF.
I went off on my own and consulted a Nutritionist, recognised by BANT. She suggested I go initially Gluten free and advised me how to keep a food diary ... like cause and effect ! During this process I widened the scope of free froms. I then cut out Wheat and Oats.
Following this I began to identify foods that I could associate with my symptoms. This was a long progressive process over several years. Eventually I mastered these 'dark arts'. I have now been AF free for some 4 years however in that time there have been some minor AF eruptions. One in the lst week.
Edoxaban and Apixoban are some of the newer anticoagulants. I have only tried Edoxaban and found it damn well useless. My own personal take on these NOAC's is they have been developed in a laboratory, aimed at a market, and to meet the legal requirements of governments. They have not been tested with humans to any significant degree - and therein lies the problem.
My anticoagulant of choice/preference is the long tried and tested Warfarin ( Coumadin ). I have my own handheld device and carry out all my tests at home reporting into my INR clinic according to agreed parameters with my Surgery and have no issues. Nor does my INR Clinic.
I hope this will be of interest but if you wish to ask questions, don't hold back.
Thanks for that John, the only bit l didn't like was the 'several years', that seems like a long time with a lot of bloating. But then I'm already two years in with still no answers. I definitely need to see a dietician to get to grips with abstaining from certain foods. I'm probably not staying off from them long enough and when l have a really good two days l think I've cracked it only to find out two days later that l haven't!
Thanks for the advice, it's a long process obviously, onwards and upwards 😊
Sorry I didn't make myself clear about the 'several years' bit 😱.
Gluten was the first mover and shaker and I did get some relief by eliminating this. More relief came by eliminating wheat and oats. Even small traces of any of this stuff could upset my gut. Even chocolate wheaten biscuits !
There was never a magic 'cure all' bullet that fixed it. As my wife said at the time .......... 'well you've been years getting into this state' - it isn't gonna disappear in a hurry. The food diary is important because it's no good relying on memory. I progressively dismembered every meal , eating small not big ........ if I went out to dine in a resturant ........ go where there was gluten free on the menu.
Bloating was the main thing and acting on advice from the Nutritionist I cut out peas and runner beans (pulses ) I remember I was so savage that about the only veggie I could handle was broad beans and cabbage ( even though I had been put on Warfarin and am still on it). Anything that the Nutritionist recommended I cut out.
This is the key ... I said ... CUT OUT. Exactly that stop eating ..whatever... cut it out for ever. Look I'm a simple soul but I learned way back in the day - about the Vagal Nerve this seems to be a building block of the heart - food - gut relationship. It was explained to me how certain foods and their ingredients even could upset the Vagal Nerve, inflaming the Vagal Nerve thus generating all these upsets of the gut. I recall all silly stuff, like give up Yoghurt, but Mousse is OK. I gave up soft cheeses, but hard cheese is OK., gave up Raspberries, but Strawberries are OK. Roast Duck was lethal, so was Roast Pork, the bit with crackling on ........ but Pork butterfly steaks were fine. It just went on and on and on. One day way into the future, you will be able to return to these things, you will but you must do all you can to eliminate them initially. Give your gut a holiday. The whole process was a demanding time ....... BUT ........ IT DID WORK EVENTUALLY ! I also found there were some foods I never ate again because I lost interest in them, i.e Eggs. hardly ever eat an egg these days no matter what format, boiled, scrambled, fried or poached - whatever. I don't touch lettuce either, but rocket is OK. Hardly eat any greens these days - maybe brussels, maybe Broccoli.
I would urge a consultation with a Nutritionist/Dietician - he/she should have the skills to advise you on foods themselves. If you are in UK consult the BANT website. There should be a search box in which you can type your area and it should produce a guide to practioners near you. This way you will avoid fake practioners.
I have heard the digestive system referred to as the bodys second brain and it does seem to be equally as complex as the first brain. I found GP's useless in advising on diet. You may find it useful to read up on the Vagal Nerve as well.
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