Ongoing GI issues

[Annie2609]

Since I started with the daily ectopics, in December last year, I also started having GI issues - not uncommon as far as I understand among the AFib/ectopic sufferers. However, I have the GI issues every day.. and it's annoying, it gives me panic attacks already hearing the noises in my stomach every night.. and diarrhea every day (or loose stools..).. is anyone having this constantly for such a long time (months) ?? And if so, how are you coping? I am on a Whole30 diet plan, I was okay for a week or so, and then back to square number one..

[Hidden]

Very briefly as I'm off to work shortly. consult a Nutritionist, refer to BANT website for one near you (if you are in UK). This was part of my symptoms back in the day, probably need a course of probiotics to stabilise gut, then a more serious diet, maybe gluten free, wheat free and possibly even oats free ................ just for starters. If you click on my user name and do a bit of juggling around on this website you might find some of my past posts on this sort of thing. almost certainly you will need to review your diet in total. some foods or drinks will aggravate your Vagal (Vagus) Nerve and cause it to become inflamed. Read up on Vagal nerve too.

Sorry, that's it for now. good luck,

John

[Annie2609 in reply to Hidden]

Thank you John for your reply. I am on a diet - program and already eliminated all grains, dairy and artificial ingredients from my diet. I felt a bit better for a week altjough the ptoblematic bathroom trips never ended.. so what else can I do? Maybe try the probiotcs...

[CDreamer in reply to Annie2609]

As it is obviously not working for you have you seen your Doctor? I think you need to find the route cause of this. I know nothing of the Whole30 plan but seems to be a very strict version of the Paleo, was it suggested/supervised by a fully trained nutritionist or Doctor?

It’s difficult to know if the gut problem preceded the ectopics or vice versa? If you are having panic attacks then the first thing I would consider is managing your panic/stress as this will only severely exacerbate both and may be the cause. Please get some coping strategies and learn breathing/relaxation/meditation techniques. You can’t imagine the havoc that stress/anxiety wreaks on the body and both ectopics and diarrhoea can be symptoms but you need to exclude anything else causing these symptoms as well.

Any restrictive diet plan can cause issues, especially when you suddenly cut out a long list of foods you had been eating. Kefir/Kumboocha/sauerkraut/raw veg is the most natural way of getting the fibre you need for good Gut flora to thrive but could be you have too many of the wrong sort of flora. Any good Nutrition-is or Lifestyle Doctor would test before suggesting a big change in diet. My problem was just that - a course of several supplements - the type of bad bacteria I had didn’t like Tannin or Garlc so soon sorted the imbalance and all went back to normal. Probiotics in capsule form usually just pass through in 24hours especially if you have diarrhoea so may just be a waste of money. You need to eat to create the right balance and you need to eat to feed the good flora. Hope that makes sense and I’m sorry if you already knew this stuff.

The recommended eating plan for AF or heart palpitations is the Mediterranean Diet - lots of salads/veg/fats/handful of cereals/oily fish/white fish/pulses/small amount of red meat weekly and avoiding all processed foods, it’s much less restrictive diet and you can still avoid dairy & animal products if you prefer.

Best wishes CD

[Annie2609 in reply to CDreamer]

My digestive issues are usually preceeded by a run of ectopics. So there is definitely a panic component. However, they seemed to become a constant daily occurence..

Whole30 is a very restrictive diet.. I am doing it for 30 days and then was supposed to slowly introduce some foods and see how I feel. I realize there might foods that I won't be able to enjoy again and thats ok. I did a bit more research on IBS diet and compare to what I ate in the last few days, and discovered that some of these foods may not be gut friendly.. so definitely need to tackle the list and find more to be removed / introduced. One example is fruits like cherries and watermelon which have a high fructose content (and which I ate plenty in the last few days..

Hopefully I will be able to find something to work for me (GP didn't recommend anything like this.. just increase the meds..)

[CDreamer in reply to Annie2609]

See a Lifestyle Doctor or Nutritionist who will take the time to do a full study. GP’s rarely have the information or the time to do this. Yes, you will need to pay for everything but it is worth it! I was very lucky as one of our GP’s was a Lifestyle Doctor.

I really don’t think we can do this stuff on our own, it’s too complex and too nuanced.

Check out these sites:-

drchatterjee.com/ He does some great podcasts and The Four Pillars is the basis of Lifestyle Medicine and a ‘must’ read.

thedoctorskitchen.com/ Dr Rupy developed AF as a junior NHS Doctor and went back to nutrition and this was the result.

Hope they help.

[Annie2609 in reply to CDreamer]

Thanks CDreamer. I will take a look at the links you sent me. Before covid started I started going to a naturopath.. unfortunately later everything was shut down.. that's the reason I am reluctant now to explore additional options i do have extended health insurance (I live in Canada) so the cost isn't a problem..

I really appreciate your thoughts and feedback as ot helps a lot during these days..

[Hidden in reply to CDreamer]

I absolutely agree that you need to see a nutritionist. Sadly, doctors have very little training in nutrition. The best thing that ever happened to us was my wife getting diagnosed with Celiac disease and then referred to a Board Certified Nutritionist. I has made such a huge difference in all of our lives.

Except for butter, and grass fed cheese, both of which contain very little of the casein protein, we are a dairy free household and of course gluten free. Additional food allergy and food sensitivity testing has also made us a yeast free household. We find it is just easier to keep offending foods out of the house for everyone. That way my wife does not have to be a short order cook preparing different foods for each of us.

[Buffafly in reply to Annie2609]

I had daily diarrhoea for weeks and eventually resorted to the IBS medication I had previously stopped because I felt it made my symptoms worse. Very bad move as I ended up in hospital with a bowel abscess and sepsis, luckily caught early. Turns out I had undiagnosed diverticulitis. So unless your diarrhoea has already been thoroughly investigated I would be cautious about diets. I was advised to follow the NHS IBSD diet. FODMAPS is helpful because amongst other things it provides a list of things containing different sugars which may cause trouble. If I have a bad flare up of diverticular disease I follow a plan which is fluids only for a couple of days, then the NHS low fibre diet until pain etc goes, then return cautiously to normal diet. When I started having frequent ectopics and occasional AF I had bad gastro problems and I think the bowel problem caused the arrhythmia, not the other way about.

Horrible symptoms I know, hope something helps 💜

[Annie2609 in reply to Buffafly]

Thank you. I am looking into the IBSD diet now and readjust my current diet based on that.

I didn't understand if you ended up in hospital because you stopped the IBS meds?

[Buffafly in reply to Annie2609]

No, I stopped the IBS meds because I was having spells of pain and I thought they made it worse but when I complained to my GP he said ‘Well take the pills’ 😡 So when I got desperate with the diarrhoea I took a few, thinking I had just been stubborn. It did me a favour in a way, though a week in hospital and 7 antibiotics to avoid having a chunk of my bowel removed was something I could have done without but at least I know about the condition now! Being diagnosed with IBS is something like a diagnosis of AF - lots of GPs treat it as a chronic ailment you have to put up with 🙄 😤

[Hidden in reply to Buffafly]

Were you tested for Celiac disease?

[Buffafly in reply to Hidden]

No, but I’ve had a couple of colonoscopies which would have revealed that I believe. I haven’t been tested for lactose intolerance either but I’m pretty sure I am.

[Hidden in reply to Buffafly]

Nope, a colonoscopy enters the wrong end. To get diagnosed with Celiac you need to have a celiac blood panel run, maybe DNA testing and then an endoscopy. If you do not have the genes then it is highly unlikely that you have the disease, so in that case, no need to proceed to the endoscopy. They need to take multiple biosopy samples from different areas the small intestine, not the colon. Taking too few samples can result in a missed diagnosis.

Also, the newer blood tests are better at detecting it so you need to make sure it includes the Tissue Transglutaminase IgA antibody test, plus an IgA antibody in order to ensure that you generate enough of this antibody to render the celiac disease test accurate.

You also should get deamidated Gliadin IgA and IgG antibodies tested as well as the older IgA Endomysial antibody (EMA): The EMA test has a specificity of almost 100%, making it the most specific test for celiac disease, although it is not as sensitive as the tTG-IgA test.2 About 5-10% of people with celiac disease do not have a positive EMA test. It is also very expensive in comparison to the tTG-IgA and requires the use of primate esophagus or human umbilical cord. It is usually reserved for difficult to diagnose patients.

Total serum IgA: This test is used to check for IgA deficiency, a condition associated with celiac disease that can cause a false negative tTG-IgA or EMA result. If you are IgA deficient, your doctor can order a DGP or tTG-IgG test.

Deamidated gliadin peptide (DGP IgA and IgG): This test can be used to further screen for celiac disease in individuals with IgA deficiency, which affects 2-3% of patients with celiac disease, or people who test negative for tTg or EMA antibodies. IgA deficiency in a patient may be indicative of other diseases that may cause villus atrophy, such as giardiasis, small-bowel bacterial overgrowth (SIBO) or common variable immunodeficiency (CVID).2

While it is very rare, it is possible for someone with celiac disease to have negative antibody test results. If your tests were negative, but you continue to experience symptoms, consult your physician and undergo further medical evaluation.

Video capsule endoscopy (VCE): VCE has a sensitivity of 89% and specificity of 95% for celiac diagnosis. This method of testing is more sensitive at detecting macroscopic atrophies in comparison with regular upper endoscopy (92% vs. 55%). VCE is also useful in detecting complications linked with celiac disease.

Intestinal fatty acid binding protein (I-FABP): When cellular damage occurs, this cytosolic protein is released into the systemic circulation of blood and could indicate unintentional gluten intake.

Radiology: Some radiological findings may indicate the presence of celiac disease, e.g., small-bowel dilation, wall thickening, vascular changes, and others.2

All celiac disease blood tests require that you be on a gluten-containing diet to be accurate. So, never go gluten free without being tested first!

Tissue Transglutaminase Antibodies (tTG-IgA) – the tTG-IgA test will be positive in about 98% of patients with celiac disease who are on a gluten-containing diet. The test’s sensitivity measures how correctly it identifies those with the disease. The same test will come back negative in about 95% of healthy people without celiac disease.

My wife's blood work came back highly positive and her genetic test came back positive for the HLA DQ Celiac genes DQ2 and 8 are Celiac genes, while DQ3 indictes gluten sensitivity. If you have a 2 HLA DQ3 genes, your symptoms can be as severe as a celiac patient, but you won't get the diagnosis. You would still need to go GF. My wife could not have the endoscopy due to issues with anesthesia that make it, or any surgery for a non life threatening matter, too risky. Since she also had a horrible rash that she had since childhood the doctor recommended a biopsy of that and came back with dermatitis herpetiformis, the skin version of Celiac disease.

Due to her diagnosis both our sons had to be tested and her parents had to be tested. All first degree relatives need to be tested when a family member is diagnosed. Two of her first cousins were also tested and came back positive, but for both of them it was too late as they already had T-Cell Lymphoma, a common cancer among Celiac patients. They both died in their early 50's.

One son came back with Celiac and the other was diagnosed with non-celiac gluten sensitivity. Our daughter in law had all the symptoms so the doctor recommended that she be tested too. She was positive as well, so the doctor said there would be no chance for the grandsons to escape it. With children in the US they just do the blood work, genetic test and no longer require the endoscopy. Both grandsons have Celiac disease. Both my mother in law and father in law tested positive as well. It is a genetic autoimmune disease.

If you have a leaky gut from gluten, even if you do not have celiac disease, you can have neurological symptoms ranging from migraine to ataxia to depression, skin rashes, mouth ulcers, dental enamel problems, joint pain, muscle pain and systemic inflammation. There is a test for leaky gut. Wherever the undigested proteins lodge you can have a problem, including the heart.

I know that going GF in 2007 definitely helped all of us, even those without celiac disease.

[Buffafly in reply to Hidden]

🤣🤣🤣 You live in the USA, don’t you? My friend is coeliac - all they had to do was look at her villi - flattened, because she hadn’t stuck to her diet. I expect I’m wrong about which end the tube went in, but it sounds to me as though your doctors must be laughing all the way to the bank 😂

[Hidden in reply to Buffafly]

Yes, we are in the US.

The celiac blood testing is paid for by insurance. The doctor is only paid for drawing the blood, which at the last visit was only $13.00, also paid by insurance, The CLIA certified lab that processes the blood work is the one tht charges for the testing, so the doctor is not making much anything on that. We did not even have to pay for a return visit to get the results - the doctor faxed them to my wife with the recommendation to see the nutritionist, which was also covered by insurance.

If your friend had the flattened villi looked at, then it was definitely an upper endoscopy which goes down the throat. But, just looking at the small intestine is not nearly as good as doing multiple biopsies. They miss the subtle changes in the villi before they get totally flattened. The earlier one is diagnosed the better with Celiac disease.

In the US they are actually doing the endoscopy less and less now that the blood tests have gotten more accurate and I know several people who had inconclusive blood work and swallowed the video capsule instead of getting the more invasive upper endoscopy. Their insurance companies were willing to pay for it because with the endoscopy there is a hospital/facility charge, fees for the anesthesiologist and the anesthesia and for the doctor. Swallowing the pill, retrieving it from stool and returning it for analysis is done by the patient. So the expense is for the pill itself and the company that analyzes the data.

Our private insurance companies have to OK any procedures done, so doing an endoscopy is the last resort, not the first. That is not money maker you might think it is because the doctor has to prove there is a need to do the procedure, and it is the hospital or outpatient facility making the big bucks from it, not the doctor who performs the procedure.

But the good thing is we get our tests done really fast. My wife had her blood drawn at the first gastroenterologist appointment, and had her cheek swabbed and sent off for the genetic testing at the same time. She had her skin biopsy done at the first dermatologist appointment. The gastroenterologist called the dermatologist to get her the appointment quickly because he wanted her off gluten ASAP, even without seeing test results because her symptoms were so severe, but she needed to still be eating gluten for both the blood work and the biopsy. She had the the dermatologist appointment the day after she saw the gastro and had blood results and biopsy results within a week. The genetic testing took about 3 weeks to come back.

I would rather not have to wait like those of you on the NHS. No need either for me to get a referral from a GP to a cardiologist or an EP, or any other specialist for that matter.

Where my wife ran into trouble after the ER visit for her back, that I discussed in other posts, was that the orthopedic surgeon required her to finish her steroid dose pack and one full round of pain killers before he would see her. Because she was so severe they got her insurance approval for the MRI done at that first office visit, but she had to wait 3 days to get it done the because of our President's Birthday national holiday. That resulted in a 10 day delay right off the bat and then the doctor wanted a second radiologist to review the results of the MRI before he had her come in for the results. That is what resulted in her permanent nerve damage.

The hospital should have done the MRI that night and taken her to surgery within 24 hours. Sadly, the same for my father's cauda equina.

They could have coded the MRI as an emergency in the middle of the night and gotten permission later, but that hospital's policy was the problem. Needless to say, we no longer use that hospital's emergency room. Luckily we have 4 other hospitals we can go to instead of that one. We only went there because it was the closest and had the supposedly best orthopedic practice located there. But, the ER doctor never consulted with the orthopedic surgeons.

Every time I had been there for my heart, the first call they made was to my cardiologist who came in, even in the middle of the night, to see me in the ER and then after he admitted me, came every morning and evening to see me until I was discharged. When the EP came in to review test results he was accompanied by my cardiologist. None of this being cared for by multiple unknown doctors in the hospital. My cardiologist was there every step of the way for me on every hospital stay.

[CDreamer in reply to Buffafly]

Many of these Blood tests are done in the UK and can be ordered by GP. I just had antibody IgA - that one should be routine.

[Buffafly in reply to CDreamer]

I’m sure, but I think I’d have to be ill to have more than the basic. My coeliac friend had numerous tests and investigations.

[Auriculaire in reply to Buffafly]

I used to do that to treat my diverticulitis attacks. My gastroenterologist persuaded me that the correct solution was a bowel resection. A pre op colonoscopy to rule out any cancer could not be completed as my lower bowel was so messed up it would have been unsafe to proceed. The surgeon took out 26 cm and said that despite 14 days of antibiotics 6 weeks prior to the op there were still signs of infection and sooner or later I would have perforated. I now have a much altered transit but at least I don't worry anymore about peritonitis. Were you not offered this operation after getting the abscess?

[Buffafly in reply to Auriculaire]

No, the surgeon did everything possible to avoid it at the time and as I recovered well I’ve never seen anyone again. My friend was like you, recurring infections, but when she asked her consultant what the outcome would be he said she would eventually have to have an emergency operation. Needless to say she was not happy and pushed for an elective procedure which revealed her bowel to be very messed up too. She still has digestive problems so not totally happy but it must be better than what she suffered before.

[Auriculaire in reply to Buffafly]

I was in hospital twice here in France with attacks . I am sure that if I had been in England I would have been given antibiotics and told to do the liquid diet at home. The first time I was on nil by mouth and hooked up to saline and antibiotic drips till my CPR came down. Then oral antibiotics and the low fibre diet for a couple of days before being discharged . The second time was just before the op. For nearly 4 years in between I managed it myself without antibiotics and with liquid then low fibre diet. I had to stop eating all sorts of stuff. Anything with seeds would set me off. Pork too for some reason. But over that 4 years my lower bowel was deteriorating bit by bit with each attack even though I did not have severe pain or even an elevated temperature. The op has left me with some problems that I know now after 2 years will never resolve ( they did warn me about this) but I am still glad I had it.

[Buffafly in reply to Auriculaire]

My friend who had the op insisted I should eat a high fibre diet at all times and didn’t need to avoid seeds but seeing how that worked for her I ignored that. I am careful to avoid poppy seeds in particular, not wanting to give TMI but I had a colonoscopy after I recovered from the abscess and that was a revelation 😧

[Auriculaire in reply to Buffafly]

I have read interesting stuff online about how a high fibre diet can actually contribute to diverticulitis. It said that it depends on the type of fibre. Soluble fibre contained in fruits and veg is ok but insoluble fibre from wholemeal grains causes too bulky stools which put pressure on the colon and causes the pouches ! So much for eating those breakfast cereals touted for constipation! I have had 3 colonoscopies ( second one a failure after the prep and anaesthetic ) .The last one which I had to have post op to check all was well will hopefully be my last as the prep was so awful I am very reluctant to have another in 3 years time as my gastroenterologist has suggested.

[Buffafly in reply to Auriculaire]

I simply cannot eat anything with whole meal flour. If anyone asks why I say it gives me the symptoms of a cold in my digestive system and leave the rest to their imagination. I have proved the link by accidentally eating something with it in so was only aware later 😖

The only thing worse than prep is double prep - I had the normal one but physical procedure was cancelled because scheduled too early 🙄 so I had to keep fasting and take prep for CT colonoscopy - nearly killed me 😱

[Auriculaire in reply to Buffafly]

That's terrible.

[Hidden in reply to Annie2609]

Hi Annie,

More time now. Back in the day Jan 2010, I was diagnosed with paroxysmal AF, gradually over a long time I began to realise the onset of an AF event followed food, particularly the evening meal ...... so during the night or even as late as getting up around 6 am I developed the following symptoms, burping, massive, massive and very painful bloating, loud and antisocial intestinal gurgling and diarrhoea - not all at the same time all at random, the bloating was the worst and the one most likely to trigger an event of AF ... I could feel the upward pressure and pain up into the left side of the chest. No flatulence ! None at all.

Of course at the time I was also at the start of my journey with Warfarin too.

I spoke to my GP who organised a range of tests for IBS and Coeliac Disease but I was cleared, although my GP at the time still felt I could be marginally IBS.

Following this I consulted a Nutritionist who prescribed probiotics in the form of a white powder stirred into water ( here in UK they are ..........VSL#3, a Probiotic Food Supplement, live freeze-dried bacteria, 450 billion bacteria per sachet (powder). Can't remember how long I was on the stuff. A while.)

These were not over the counter health store or online Probiotics ! Eventually the diet began to work and after some 3 years I was virtually AF free. Nowadays, I look back and since April 2015, I have only had 1 AF event, in February 2018, while sleeping on my left side, kicking in about 2 am and waking me up.

Over the years my diet has been a journey of observation and experiment to the point that now I can take virtually no green veggies. I have to balance gut and warfarin - both are affected by different green veggies. Stuff I like is not advised with warfarin and pulses upset my gut.

So there we go, hope its of interest to you.

Yet I can devour a bucket of KFC without any problems 😂😂

John

[Annie2609 in reply to Hidden]

Thank you John, i read your post with a lot of interest as your symptoms were exactly like mine. I am trying to get in touch with a nutritionist but it might be difficult due to covid. They should be able to do a phone consultation at least.

My concern (and my cardiologist's concern) is that my GI symptoms cause my body to lose minerals and in response I keep getting these constant ectopics. So I need to take action to stop this vicious circle..

[CDreamer in reply to Annie2609]

Sounds like you are connecting the dots.....

One of the first things a nutritionist will often do is to ask you to keep a very accurate food/symptom diary which I found is one of the most useful things you can do to shorten the process. There are several apps which can help but sometimes pen and paper comes useful.