Does anyone here also have Afib

[Jhona]

Hi everyone...do any of you also have Afib along with celiac...just need some prayers and support

[Scott Adams]

I hope all is well, Atrial Fibrillation does sound fun. Hopefully you're able to treat it with meds or a device. 

[cricketboots]

On 11/22/2020 at 6:16 PM, Jhona said:

Hi everyone...do any of you also have Afib along with celiac...just need some prayers and support

Hi. I was dx'ed with afib a number of years ago. I have not really had any major complications but it scares me to death when I get these palpitations. I was just dx'ed with Celiac Disease on October 29th this year (2021). I am having a very difficult time coping with this and coming to terms with the dx. I wish you much peace with your dx'es. You are in my thoughts and prayers. 

[cristiana]

Hi cricketboots

Welcome to the forum!

I'm usually a Mod on this forum but I'm not around much at the moment due to work deadlines.  But I saw this post in my inbox and thought I must reply as I know how scary irregular heartbeats can be.   

How you are doing with the diet?  Are you managing OK?  There is a lot to learn in the first few months following diagnosis, but I hope you will find lots of help on this forum.

I started getting irregular heartbeats in the spring.  Because of COVID I haven't yet had a proper diagnosis but I have been told I have ectopics. I haven't been given any pills to take yet or anything.   Are you taking anything for your arrhythmia?  

I know that irregular heartbeats can be caused by deficiencies such as iron and B12 which are common in coeliacs.  I also understand low magnesium and potassium levels can cause issues.  Do you know if you have any of these deficiencies?  If so, I wonder if you might find an improvement in your situation once your levels normalise, as you heal although sometimes supplementation is necessary?

I find things that make my ectopics worse include dehydration, certain movements, stress and viruses.  Also, they seem to get worse sometimes if I am feeling bloated.  If you find the latter is the case, you may find this thread helpful.

Cristiana

 

[cricketboots]

6 hours ago, cristiana said:

Hi cricketboots

Welcome to the forum!

I'm usually a Mod on this forum but I'm not around much at the moment due to work deadlines.  But I saw this post in my inbox and thought I must reply as I know how scary irregular heartbeats can be.   

How you are doing with the diet?  Are you managing OK?  There is a lot to learn in the first few months following diagnosis, but I hope you will find lots of help on this forum.

I started getting irregular heartbeats in the spring.  Because of COVID I haven't yet had a proper diagnosis but I have been told I have ectopics. I haven't been given any pills to take yet or anything.   Are you taking anything for your arrhythmia?  

I know that irregular heartbeats can be caused by deficiencies such as iron and B12 which are common in coeliacs.  I also understand low magnesium and potassium levels can cause issues.  Do you know if you have any of these deficiencies?  If so, I wonder if you might find an improvement in your situation once your levels normalise, as you heal although sometimes supplementation is necessary?

I find things that make my ectopics worse include dehydration, certain movements, stress and viruses.  Also, they seem to get worse sometimes if I am feeling bloated.  If you find the latter is the case, you may find this thread helpful.

Cristiana

 

Hi Cristiana! I am not coping well with this disease and this diet at all, if I may be direct about it. The dx really has me down and I am basically not eating because I cannot find anything that doesn't taste horrid. All of this has my depression going back to the deep side again, which I truly fear because have been in that deep bottomless black pit many times before. Like you, I do not take any medications at this for my afib symptoms but the older I get, the more I wonder when that time will come when I should. As far as deficiencies, I have not had a full blood workup since my dx. This is something I am working with my doctor to get done. As far as the palpitations, since I was dx'ed with celiac disease they are much more frequent; stress-related I guess, I do not know. I just know it is scary and not eating, I know, does not help. I wish you much peace Cristiana. Have a good night. 

[cristiana]

Hi cricketboots

I am so sorry to hear that you are struggling like this.  It is not uncommon to feel this way, and interestingly, you will find that some coeliacs are affected by anxiety and depression prior to diagnosis.  It is something that can also improve once you have mastered the diet - it certainly has in my own case.

I'm based in the UK and when I was diagnosed I was given some very basic blood tests for B12, D and ferritin deficiencies.  I am not sure where you live but some countries will offer much more than this, and if you can, I'd definitely have the tests done as you may find that once these deficiencies are addressed, you feel a lot better.  Can you get this fast tracked?  In my own case I had a borderline normal result on B12 so it wasn't even flagged as a problem, but I remember reading on celiac.com at the time a borderline normal deficiency in the UK would be considered abnormal in Japan.   I supplemented B12 and I noticed after a while all sorts of odd tingling sensations in my nerve endings were getting better.   I also felt much less anxious.

With regards to your depression, a book I found really helpful with my own recovery was the Six Step Depression Cure by Dr Steve Llardi.  If you are taking medication for it I am not advising you to give up (please follow your own doctor's advice) but Llardi's book is so helpful as it highlights areas in our modern lives that only add to the depression problem, and gives solutions on how to improve our mental wellbeing through lifestyle changes.

If you are suffering from anxiety Paul David's book, At Last a Life, was another great resource for me.  Both books can be purchased online and have reviews you can read first.

Do you know any other coeliacs? Perhaps you could try to make contact so you have a buddy to travel with on this journey?  But do keep in touch with us too, we're here for you.  

This is a helpful link, if you haven't seen it already.  But try not to feel overwhelmed by it all.   This will all become second nature to you one day.  My husband gave me some great advice when I was first diagnosed and missing some of my favourite food - he told me, "Concentrate on what you can eat, rather than what you can't".  If you are struggling with gluten free bread - which I have to say I found rather unpleasant, until I found one particular brand that tasted OK - you may find it nicer toasted.  

C

 

 

Edited November 26, 2021 by cristiana

[Idnam]

Yes! pounding heart.

I was getting a kind of allergic reaction to things that had been fine yesterday (I am totally compliant) banana cheese even lettuce, and I get heart ahrythma ie my heart beats really fast and misses some beats, I have had an ECG twice, but this is after it has gone off and calmed down in a few days.

It was v scary. I took an antihistamine tab and it went off.

So, time to go further down the rabbit hole, Docs in UK know no thing about Celiac I was told to join Celiac.org and ask them!

I have, actually been mostly gluten-free for 28 yrs. Although I was not diagnosed until  2 yrs ago as I didn't eat gluten it never showed up in the endoscopies I had I been "clean" since then. but that's when all my problems started, maize starch, oats, real bad Heartburn for which the only remedy was Gaviscon.

The only symptom  I had had for 12 years and 3 endoscopies was Acid Reflux, pain upper left chest, I made a couple of visits to A&E.

During a time when I had found a bread I really liked that didn't affect me, I consulted my Doctor an told him I had no energy at all and I really felt there was something wrong with me. I had a full blood count and they picked up (finally because I had been eating gluten) that I had Celiac disease.

Now two years later I'm no better really, still get Acid Reflux and now this heart arythma, I started a google hunt (oh thank god for google). Could I find an anti histamine that was not pharma? I discovered during that search that there was a reason why Ranitidine an H2  antagonist was the only medication that had helped me,  worked for me, it's because it neutralises Histamine!

Apparently Celiacs have too much Histamine in their bodies, this level of H will cause the body to release more acid the help the body digest food.....hence Acid Reflux, caused probably originally by Histamine intolerance.

So here's another food list a list of things I should not eat!

Hey ho!

[Scott Adams]

It’s frustrating how little awareness there is around celiac complications, even among doctors. Your discovery about histamine intolerance makes so much sense. It’s interesting how interconnected these reactions can be (heart arrhythmias from food? No one warns you about that).

It’s great that antihistamines helped, and the ranitidine connection is a huge clue. Have you looked into low-histamine diets or DAO enzyme supplements? Some celiacs find relief there, especially with reflux and heart palpitations. And yeah, the ‘hidden gluten’ struggle is real—even after years of being careful, cross-contamination or sneaky ingredients (like maize starch or oats) can keep the inflammation cycle going.

If you’re open to it, a functional medicine doctor (or even a telehealth specialist in celiac/histamine issues) might offer more tailored help than the NHS. Keep us posted!

[Russ H]

I developed a heart arrhythmia and on several occasions had to wear a 24 hour Holter monitor. Among other things, I had premature atrial complexes (PACs) and occasional AFib. I was very fit at the time, running and cycling. This completely disappeared following my diagnosis and following a strict gluten free diet. I haven't had a single episode since, in 4 years.

[larc]

I've been on a gluten-free diet since 2006. But if I accidentally ingest gluten I get episodes of AFib (and other heart issues). After my most recent exposure my on and off again AFib -- starting each evening -- lasted about 10 days until it went away. 

[Scott Adams]

Do you need to take medication for you Afib issues?

[larc]

I don't take any medicine for Afib since it only happens after exposure to gluten. My cardiologist doesn't agree with me. My feeling is that since I get Afib and higher blood pressure after accidentally ingesting gluten if I took medicine for it it would only mask my symptoms of gluten exposure. 

[Scott Adams]

It sounds like you’ve noticed a clear connection between gluten exposure and your Afib episodes, which is really important insight. While it’s understandable to hesitate about medication if it feels like it might mask your symptoms, your cardiologist’s concern likely comes from wanting to protect your heart from potential risks, even if Afib is triggered intermittently. Have you considered discussing a middle ground—like monitoring your heart more closely or exploring whether certain medications could act as a safety net without completely hiding gluten exposure symptoms? Either way, your awareness of how gluten affects you is valuable, and hopefully, you and your doctor can find a solution that addresses both your immediate reactions and long-term heart health. Untreated high blood pressure can lead to some serious heart issues, and because you are already seeing a cardiologist you likely know this. 

[larc]

Thanks for your thoughts on this. My reactions to gluten are complex and involve more than just my heart and arteries. The problems with what It does to my cardiovascular system do present me with a bit of a conundrum at times. For instance, I had cardio bypass surgery in 2002 (at age 53) and then again had angina and artery issues in 2006. At the same time, I was also suffering symptoms of early onset dementia while also experiencing symptoms of psychosis. That was when I discovered I had celiac and went on a. gluten-free diet. On that diet, my psychosis disappeared, my chest pain stopped and my cognitive issues also cleared up. Subsequently I began running and exercising again with no cardio problems. And my stress tests and cardio exams since then showed no evidence of artery problems. Plus, my lipid panels showed significant changes. My arteriosclerosis had started in 1992. At that time, my HDL cholesterol had always been measured in the 20s even though I exercised religiously, ate what was supposed to be a heart-healthy diet and was never overweight. After going on a gluten-free diet in 2006, my HDLs have been in the 60s and 70s. Since then, my usual symptoms of ingesting gluten are a temporary increase in blood pressure and certain intense types of hypnogogic hallucinations. The Afib stuff is a recent development. I will be discussing all of this again with my cardiologist in May. I discuss some of this in my substack (no paywall) at https://diaryofapreviouslydementedpoet.substack.com/ 

 

[DebJ14]

My husband has had occasional A fib since 1986.  He spent years on Digoxin and Quinidine, with no reduction in the number of episodes.  Then, he was put on Verapamil as a pill in the pocket and did fine for about 5 years until it stopped working for him.  Then he went on Flecainide as a pill in the pocket.  His first 2 cardiologists had him on a "heart healthy diet" that was low in fat, practically no red meat, and high in pasta, Cheerios and Oatmeal and other carbs,  and he regularly went into A Fib.  

His new, younger, cardiologist reviewed over 30 years of his medical records and said there was never any indication of heart disease.  All the cardio tests were perfectly normal,  He is Vietnamese and has a more holistic practice than most cardiologists.  My husband's BP has been rising as he ages, but he has had severe adverse reactions to every drug they tried, so instead he is on Vitamin C to bowel tolerance, Hawthorne, Hibiscus, Celery Seed, Grape Seed Extract and Resveratrol and his BP has come down 35 points, to a level acceptable to the doctor for his age.  He has an MTHFR mutation, which they believe causes the drug reactions due to his inability to detox.  The only  levels he seems concerned about are how high is the HDL and how low are the triglycerides, and how high is his Vitamin D level.  HDL was 77, Triglycerides were 62 and Vitamin D was 86.  He is only concerned with LDL is the particle types  and he has the good kind, the "fluffy" ones, and they are in a good range.  He only uses statins as a drug of last resort because of the side effects.  My husband was on one years ago and within 6 months developed a cataract, which the cardiologist and eye doctor at the time recognized as a side effect so they said no more.

As a matter of routine he puts all his cardiology patients on a Sugar, gluten-free and Dairy free diet because it is his firm belief that inflammation is the root cause of all chronic disease and sugar, gluten and dairy are the foods he considers the worst offenders. They inflame the heart and the lining of the blood vessels leading to those blockages.   He also put him on Keto and severely restricted his carb intake.  Lo and behold, the A Fib disappeared.  My husband had to keep a food diary and  every episode of A Fib, which only occurred in the middle of the night, could be traced to his meals.  He was referred to a gastroenterologist.  His digestion is really poor.  So many foods cause him gas and that also puts him into A Fib.  The ran a test where they pumped his stomach full of air and on the table he went into A Fib.  They determined that his gut was pushing up on his diaphragm which in turn pushed on his heart triggering A Fib. So, no more Heart Healty beans!  His history told the tale too!  Abdominal radiation at age 21 for cancer damaged his gut and led to his dyspepsia, which led to A Fib. He now has a diagnosis of Roemheld Syndrome.

If he sticks to his very low carb, no gas producing, gluten, dairy and sugar free diet he is fine.  He also was told to take a probiotic daily and digestive enzymes with his lunch and dinner.  He is on an annual visit basis with both gastro and cardiologist.  He has a Kardio Mobile and has to send results to the cardiologist, along with his food diary for any day he has A Fib.  Every single time we are able to pinpoint the cause.  Sometimes he just can't help himself and eats a banana, an orange, cookies and pretzels on the same day and then no one is surprised when he goes into A Fib.  His cardiologist prescribes Flecainide as a pill in the pocket to stop an attack, which always happens within 2-3 hours.  The gastro recommends brands and dosages of probiotics and digestive enzymes after running annual blood tests to test his digestive enzyme levels.  

Having doctors get to the root cause, instead of just doling out prescriptions to mask symptoms has made all the difference in the world.  His cardio said no Covid jabs because of his tendency for A Fib and he also has a long history of blood clots related to his prior cancer treatment.  He also recommended that our adult son, with a history of pericarditis, skip them.  Thankfully  my doctor also said no because my other autoimmune diseases, Hashimoto's and Psoriasis, were finally both totally under control.

[Scott Adams]

Thank you for sharing your husband’s remarkable journey—it’s truly inspiring to hear how a holistic, root-cause approach has made such a profound difference in his health. It’s fascinating how his cardiologist connected dietary inflammation, gut health, and even historical factors like abdominal radiation to his A-fib, leading to a tailored plan that finally resolved his episodes. The emphasis on diet (especially sugar, gluten, and dairy), along with targeted supplements and careful monitoring, highlights how individualized care can outperform one-size-fits-all protocols. It’s also refreshing to hear about a doctor who prioritizes metabolic markers like HDL, triglycerides, and Vitamin D over rigid LDL targets, while acknowledging the risks of overmedication. Your husband’s story underscores the importance of persistence in seeking answers and the value of clinicians who look beyond symptoms to address underlying causes. Wishing him continued health and stability on this well-balanced path!

[DebJ14]

12 minutes ago, Scott Adams said:

Thank you for sharing your husband’s remarkable journey—it’s truly inspiring to hear how a holistic, root-cause approach has made such a profound difference in his health. It’s fascinating how his cardiologist connected dietary inflammation, gut health, and even historical factors like abdominal radiation to his A-fib, leading to a tailored plan that finally resolved his episodes. The emphasis on diet (especially sugar, gluten, and dairy), along with targeted supplements and careful monitoring, highlights how individualized care can outperform one-size-fits-all protocols. It’s also refreshing to hear about a doctor who prioritizes metabolic markers like HDL, triglycerides, and Vitamin D over rigid LDL targets, while acknowledging the risks of overmedication. Your husband’s story underscores the importance of persistence in seeking answers and the value of clinicians who look beyond symptoms to address underlying causes. Wishing him continued health and stability on this well-balanced path!

It was a long road to get to this point, but we have discussed many times that if my husband had not seen the remarkable transformation in my health with just diet and supplements, he never would have accepted the advice of this cardiologist.  He would have thought he was a quack and found another doctor.  As it was, he was leery of seeing this guy, but his cardiologist retired and this was the man who took over the practice.  He left that hospital for a bigger practice, but my husband, and most of his patients followed him, even though it is an hour away now.

 

[Yaya]

My heart went into A-Fib following my recovery from Covid. It is now known that Covid is a catalyst for Long Haulers syndrome.  In Dec 2022 I missed the last booster until I was already incubating COVID. Became ill 5 days after the shot. I thought I was completely well 10 / 12 days later, felt great. Then collapsed on Feb 17, 2023 as my formerly perfect heart went into A-fib. This was the kickoff to so called Long Covid and a host of accompanying symptoms.
A week prior to becoming ill, I had completed heart tests that showed my now damaged heart was in perfect condition.  Now I visit the cardiologist every 6 months as well as my endocrinologist who tests me every 3 months.  Because of this I'm on Flecainide every 12 hours and will be for life.  Fortunately, it's a very safe drug. 

[knitty kitty]

I know I'm late to the party, but I thought these articles are very interesting.  

Doctors don't recognize vitamin deficiency symptoms.  

Thiamine deficiency is linked to Long haulers syndrome, too.

I had palpitations that only resolved with thiamine Vitamin B 1 supplementation.  

Association of vitamin B1 with cardiovascular diseases, all-cause and cardiovascular mortality in US adults

https://pmc.ncbi.nlm.nih.gov/articles/PMC10502219/

 

Vicious cycle of vitamin B1 insufficiency and heart failure in cardiology outpatients

https://pmc.ncbi.nlm.nih.gov/articles/PMC11579856/

 

Micronutrient deficiencies and new-onset atrial fibrillation in a community-based cohort: data from PREVEND

https://pmc.ncbi.nlm.nih.gov/articles/PMC11772465/

 

Spontaneous Recovery of Isolated Advanced Heart Block in Patient with Celiac Disease by Starting a Strict Gluten Free Diet: A Case Report and Review of the Literature

https://pmc.ncbi.nlm.nih.gov/articles/PMC10482138/

 

The Efficacy of Vitamins in the Prevention and Treatment of Cardiovascular Disease

https://pmc.ncbi.nlm.nih.gov/articles/PMC11432297/

 

Thiamine deficiency disorders: a clinical perspective

https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/

 

Thiamine and benfotiamine: Focus on their therapeutic potential

https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/#:~:text=Benfotiamine (Fig.,]%2C [62]].

 

Recovering from Long Covid with Thiamine

https://hormonesmatter.com/recovering-from-long-covid-with-thiamine/

https://hormonesmatter.com/covid-19-thiamine-interview-with-dr-derrick-lonsdale/

Edited June 4 by knitty kitty
Typo correction

[Yaya]

Yes, I had COVID for 10 days thought I recovered like EV1 else, but suddenly had A-fib, hospitalized for 3 days, and now taking Flecainide 2X daily.  Long C also ruined my once excellent metabolism.  I do take B 50, and my bloodwork is always very good. 

 

[knitty kitty]

@Yaya,

Vitamin supplements should be stopped eight to twelve weeks before testing blood levels.  If vitamin supplements are not stopped, the tests will reflect the vitamins in circulation in the blood stream from the supplements, and blood levels may appear within "normal" limits.  Blood tests do not reflect the amount of vitamins stored inside cells where the vitamins are actually utilized.  There can be "normal" levels in the blood, but organs and tissues may be depleted.  The brain sends messages to  tissues and organs to give up their stored vitamins so that the brain and heart don't run out. 

That "excellent metabolism" is fueled by Thiamine and the other B vitamins.  Do read the articles above.   Dr. Lonsdale and Dr. Marrs' research changed my life.  Taking high dose thiamine (thiamine hydrochloride, Benfotiamine and TTFD (tetrahydrofurfuryl disulfide)) really improved my health in an impressive way.  Thiamine is water soluble and nontoxic.  Thiamine is safe in high doses.  If not needed, it's easily excreted.  If needed, the improvement will become apparent in a very short time.  No harm, no foul.  

[Idnam]

Oh my, I have always had the symptoms for B12 deficiency, which is why I had the blood test that led to my celiac disease diagnosis I had been taking  B vits have been always been amazed that all ,my bloods were perfectly normal!

I queried this many times with my doctor as to whether the B12 was active and being absorbed or whether it was just in my bloodstream. They dismissed this idea. And of course I still take them.

Thank you so much, what a revelation and really quite understandable,

 I am about due for my annual full blood test so maybe I will just stop taking them?

[cristiana]

3 hours ago, knitty kitty said:

@Yaya,

Vitamin supplements should be stopped eight to twelve weeks before testing blood levels.  If vitamin supplements are not stopped, the tests will reflect the vitamins in circulation in the blood stream from the supplements, and blood levels may appear within "normal" limits.  Blood tests do not reflect the amount of vitamins stored inside cells where the vitamins are actually utilized.  There can be "normal" levels in the blood, but organs and tissues may be depleted.  The brain sends messages to  tissues and organs to give up their stored vitamins so that the brain and heart don't run out. 

That "excellent metabolism" is fueled by Thiamine and the other B vitamins.  Do read the articles above.   Dr. Lonsdale and Dr. Marrs' research changed my life.  Taking high dose thiamine (thiamine hydrochloride, Benfotiamine and TTFD (tetrahydrofurfuryl disulfide)) really improved my health in an impressive way.  Thiamine is water soluble and nontoxic.  Thiamine is safe in high doses.  If not needed, it's easily excreted.  If needed, the improvement will become apparent in a very short time.  No harm, no foul.  

Really interesting, Kitty, thank you. 

[DebJ14]

8 hours ago, knitty kitty said:

@Yaya,

Vitamin supplements should be stopped eight to twelve weeks before testing blood levels.  If vitamin supplements are not stopped, the tests will reflect the vitamins in circulation in the blood stream from the supplements, and blood levels may appear within "normal" limits.  Blood tests do not reflect the amount of vitamins stored inside cells where the vitamins are actually utilized.  There can be "normal" levels in the blood, but organs and tissues may be depleted.  The brain sends messages to  tissues and organs to give up their stored vitamins so that the brain and heart don't run out. 

That "excellent metabolism" is fueled by Thiamine and the other B vitamins.  Do read the articles above.   Dr. Lonsdale and Dr. Marrs' research changed my life.  Taking high dose thiamine (thiamine hydrochloride, Benfotiamine and TTFD (tetrahydrofurfuryl disulfide)) really improved my health in an impressive way.  Thiamine is water soluble and nontoxic.  Thiamine is safe in high doses.  If not needed, it's easily excreted.  If needed, the improvement will become apparent in a very short time.  No harm, no foul.  

Our Functional Medicine doctor has always ordered the Spectracell Test for Micronutrient Deficiencies.  It tests the intracellular levels of the nutrients, not blood levels.  When high dose, targeted supplementation did not resolve the deficiencies after retesting at 6 months and then a year, he ordered genetic tests.  I have a genetic inability to process Vitamin D, B12 and antioxidants, so I am on high doses of those for life.  The rest of the initial deficiencies resolved within 6 months to a year and a good multi vitamin is sufficient to address those.  My husband has historically had high homocysteine levels and his low folate, B 12 and B6  levels are because of his MTHFR gene mutation.  Always good to get to the root cause!

[Yaya]

This is difficult for me to deal with.  B complex is what stands between me and migraines.  Whenever I stop B for just a few days, I get a migraine.  All my adult life I would get a violent migraine for 3 days like clockwork until a doctor told me to try B complex and it worked.  The only time I get a migraine is when I've run out of B.  This has worked for me for over 15 years.  I am soon to be 79.  

My cardiologist has me stop all vitamins for about 3 days and I always have a migraine when I go in for the bloodwork.  

D level is nearly at optimal.  I don't take A, I get enough from food.   What a dilemma!