Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Atrial Fibrillation (Very Long)
0

16 posts in this topic

I've been reading the few old posts here about A Fib, tachycardia, and various other heart problems and Celiac/Non-Celiac gluten intolerance, so I want to tell my story and see if others can offer some advice.

It started, or maybe was first noticed by myself, this past summer (2011). I began to feel this strange pounding/fluttering sensation in my heart several times a day. It almost seemed to come out of nowhere, but as it was summer I figured maybe it was some kind of reaction to the heat, even though the summer was very mild and rainy.

Come September/October I realized it wasn't getting better even though the weather was much cooler, but as I had no pain or shortness of breath I figured it wasn't a big deal and hoped it would go away. It didn't, so I brought it up with several of my doctors and got the standard "Oh okay. Anyway..." As a side note I think most of my doctors thought I was making stuff up because they usually ignored me.

Things still didn't get better. They didn't get worse per se (still no pain or anything) but they did seem to be more frequent than in the summer. In December I had an EEG run to test for some neurological conditions, unrelated to the heart thing, and they also hooked me up to the blood pressure monitor which I mistakenly thought was an EKG as they attached sticky things to my chest. While the stickies were on my heart did that weird pounding/fluttering thing but nobody noticed.

In late December I moved to a new state and started a new school. At my school I wanted to join the gym, but in order to do so I had to pass a physical exam which included lifting weights and running on a tread mill. Boy am I glad! The weights and such were not a big deal for me and I did better than I thought I would. It was the treadmill that got me and I am very thankful.

Before the treadmill was started the woman who is the school's personal trainer attached a pulse thingy to my finger. I'm sure it has an official name :P While I was running my pulse was normal and, as I used to run a lot, this was no big surprise to me, though the trainer was pleasantly shocked that I was able to run as well as I did. The problems started when I got off. No sooner had I turned the machine off then my heart started racing and my pulse skyrocketed. Then it would drop for a few seconds and then sky rocket again. And I could feel the familiar pounding/fluttering sensation. The trainer told me that wasn't normal and had me walk around.

Several hours later my heart was still pounding/fluttering. The trainer thought I had a murmur, but after talking to the nurse she thinks it's A Fib and I have to go see a doctor now.

The problem is that nobody has ever heard or picked up on anything because apparently it is only noticeable when it is happening, so if it doesn't happen nobody seems to care. And it happens many, many, MANY times a day, everyday. Exercise, anxiety, lack of sleep, and possibly heat seem to make it worse. Maybe hunger too. Sometimes it was happen every few seconds for hours at a time. It also seems to get stronger (not more frequent, but physically the pounding is more noticeable) at night, though I can still feel it often during the day. It's just weaker so it's a bit harder to notice. But it doesn't only happen when I am laying down. I could be sitting, standing, climbing stairs (which makes me feel exhausted and out of breath), doing pretty much anything and it could happen.

It starts off with a strange feeling in my chest. I can't describe it more than it feels like my heart either skipped a beat or didn't complete a beat. Then it will pound for a few seconds, maybe 2 or 3, then go away. Then sometimes it will repeat a few seconds later. It's like boomBOOM-BOOM-BOOM-BOOM where the first two beats occur almost at once. It's hard to describe.

I heard that there are people here with Celiac and heart problems and that going gluten-free helped their hearts, but mine is still the same. And, though it's not painful, it's annoying, especially because I think that is what is making me so tired all the time. It's also annoying because I worry I might have to give up horse back riding and using the stairs and all that. And I worry that I'm gonna have a heart attack or something. And I hate the way the personal trainer looks at me with pity. I hate when people pity me.

Anyway, just wondering if you guys have any ideas on what it could be and what could be causing it. Obviously nobody here is a doctor and can diagnose anything, which is why I am going to see a doctor this week or next. But maybe somebody can offer some useful advice or maybe has a similar story. And feel free to ask questions or to ask for clarification. Thanks and have a great day!

0

Share this post


Link to post
Share on other sites


Ads by Google:

Yes, I am very familiar with atrial fibrillation, one of the banes of my life. I want to prefance what I'm saying here by saying I am not a medical professionall, I am just relating my experience and what I have been told.

The first thing you need to determine is if you are still in atrial fibrillaltion. I do this by feeling the pulse at my temple right at the hairline just below the "bone bump". of the skull. If the pulse is steady, regular and not racing you are not in afib. If it is a bit erratic, with BOOM BOOM BOOM BOOM bursts followed by pauses, you are probably in afib. If you remain in afib continuously and do not convert to normal "sinus" rhythm, which is what they call a regular heartbeat, you should go to the emergency room and tell them how long you think you have been in afib. Without intending to alarm you, if you remain in afib continuously you run the risk of stroke because the blood is not flowing normally out of your heart and may pool and clot, and this clot could find it's way out of your heart and clog an artery. You do not want this happening. Do this test now.

So, now, hopefully, you have determined that you are not currently in afib and can relax a little. Afib can happen any time and does not always need a stress trigger. The body often self-converts to normal sinus rhythm without any medical intervention. I went along like this for years not knowing what it was, and it would last for an hour, then two or three. I wore a Holter monitor (a 24-hour walking around EKG)and nothing happened. I am always able to tell I am in afib because it always gives me a "kick" when it goes in and I always feel a weakness and shortness of breath while I am in it (weak lungs). It is a very alarming experience when something like that is going on with your heart and the first time it happened to me (with raging tachycardia) I thought I was going to die. That was 6 years ago and I am still here :) But finally, I could not self-convert and I ended up in the emergency room and ICU even (though that wasn't really necessary :rolleyes: )

The following link is one of the best articles I have seen explaining atrial fibrillation: http://www.answers.c...al-fibrillation

This is something that you should have evaluated right away by a cardiologist. He will probably have you wear a Holter monitor to see how your heart is behaving during daily activities. And then proceed from there. It is not something you should let ride, particularly as noted earlier, if you remain in afib. I have been instructed that if I am still in afib 12 hours later I should head for the emergency room. There they can give you medications that will lower your heart rate and blood pressure, and others that will control your rhythm.

So do get back to me and tell me how you are, please? :) Hopefully you are doing just fine and you should make a doctor's appointment a priority. Do feel free to ask any other questions that are bothering. I will be here today.

0

Share this post


Link to post
Share on other sites

I am going to try and get in to see the doctor either this week or next, but hopefully this week. I'm just a bit apprehensive that this doctor will say that nothing is wrong and send me home. And I can't get in to see a cardiologist just yet, so I have to stick with a regular PCP for the time being. But I have a note from the trainer explaining in more detail what she noted and I could probably get something written from the nurse as well, even though she hasn't noticed anything other than an increased pulse once when I was sick. With that information I'm hoping I can finally get some help as it's very scary when my heart is pounding on and off for hours. I worry that I am going to die or something. But I'm still kickin'!

BTW, is a Holter Moniter that big watch looking thing that one wears on the wrist and it records pulse and blood pressure and such, or is it much bigger? I can't exactly go lugging a big machine around work and campus, so I'm hoping it's small. And, if I had to wear one, is it something I have to stay in the hospital for, or can I still go to school? And also, has anybody with heart problems noted that they got better, or worse, from eliminating certain foods? I'm not sure if this is food related, but it would be nicer if it was.

0

Share this post


Link to post
Share on other sites

I am going to try and get in to see the doctor either this week or next, but hopefully this week. I'm just a bit apprehensive that this doctor will say that nothing is wrong and send me home. And I can't get in to see a cardiologist just yet, so I have to stick with a regular PCP for the time being. But I have a note from the trainer explaining in more detail what she noted and I could probably get something written from the nurse as well, even though she hasn't noticed anything other than an increased pulse once when I was sick. With that information I'm hoping I can finally get some help as it's very scary when my heart is pounding on and off for hours. I worry that I am going to die or something. But I'm still kickin'!

BTW, is a Holter Moniter that big watch looking thing that one wears on the wrist and it records pulse and blood pressure and such, or is it much bigger? I can't exactly go lugging a big machine around work and campus, so I'm hoping it's small. And, if I had to wear one, is it something I have to stay in the hospital for, or can I still go to school? And also, has anybody with heart problems noted that they got better, or worse, from eliminating certain foods? I'm not sure if this is food related, but it would be nicer if it was.

It doesn't go around your wrist but it isn't really huge. My DD had to wear one for a couple days before she was diagnosed as she was having palpitations and her lips would turn blue which had the doctors worried about her heart.

0

Share this post


Link to post
Share on other sites

I am going to try and get in to see the doctor either this week or next, but hopefully this week. I'm just a bit apprehensive that this doctor will say that nothing is wrong and send me home. And I can't get in to see a cardiologist just yet, so I have to stick with a regular PCP for the time being. But I have a note from the trainer explaining in more detail what she noted and I could probably get something written from the nurse as well, even though she hasn't noticed anything other than an increased pulse once when I was sick. With that information I'm hoping I can finally get some help as it's very scary when my heart is pounding on and off for hours. I worry that I am going to die or something. But I'm still kickin'!

BTW, is a Holter Moniter that big watch looking thing that one wears on the wrist and it records pulse and blood pressure and such, or is it much bigger? I can't exactly go lugging a big machine around work and campus, so I'm hoping it's small. And, if I had to wear one, is it something I have to stay in the hospital for, or can I still go to school? And also, has anybody with heart problems noted that they got better, or worse, from eliminating certain foods? I'm not sure if this is food related, but it would be nicer if it was.

Okay, the Holter monitor is specifically designed to be worn while you are going about your normal activities. You will have a few electrodes attached which you can cover with clothes and the leads attach to the monitor which is about the size of a small paperback book which you can slip into a pocket. I wore mine when I was acting as a volunteer for a House and Garden home showing, that's how unobtrusive it is :D Not to worry - just don't go swimming :lol:

And yes, my heart related episodes were all initially related to food. Now that my heart has learned it can do this though, it chooses to do it at other times too. For me it most often happens when I go to bed when the abdominal contents move from the upright to the prone position and the bloating puts pressure on the heart and lungs and thence onto the vagus nerve. Prior to getting afib I used to get vaso-vagal syncope (fainting) from pressure on this same nerve, but then the response changed to afib somewhere along the way and I don't do the dramatic faint any more. You will notice in my sig. block a list of the foods I avoid. Of those, corn, soy and nightshades have been the worst offenders for me in setting off afib. These foods are all high in lectins, and I believe that lectins are responsible for the reaction (there are lectins in gluten as well). Here are some lectin links:

http://www.bmj.com/c...t/318/7190/1023

http://www.krispin.com/lectin.html

I will also look up the link for the Krispin Report and put that in here too in a minute.

I have mostly been able to control my afib up till about two years ago by avoiding those foods, but now I am finding that hypoxia (lack of oxygen) will bring it on and I have been summering at Lake Tahoe and the altitude is too much for my damaged lungs, and at night when my breathing slows it comes back occasionally. I do what is called "the pill in the pocket" treatment - when I get an attack I take a pill for rhythm control and it seems to work. I refuse to take it all the time (along with the Coumadin and baby a spirin the docs want to prescribe) and prefer to handle it this way. I might try for the ablation.

Good luck with the doctors because most of them have never heard of lectins and and won't believe a food connection. They need hard evidence and that is going to come from the Holter monitor. If you have any idea what induces your attacks you will want to do that while you are wearing the monitor (this is the one time you do want an attack :o ) :D I know that awful feeling, wondering if you will actually die or if it will pass. Strangely, there are people who are unaware they are in afib, which I find hard to believe and which is why I suggested ou check your pulse. I am often left writhing in agony.

0

Share this post


Link to post
Share on other sites




i dealt with this too and noticed a huge difference since going gluten free. i am not in the medical field but can tell you long story short after MANY tests they determined i had SVT. it feels like a-fib and i have sometimes remained for days with the condition where my heartbeat stayed upwards to almost 200 bpm. it was scary and i truly thought i was going to die. please check it out with a cardiologist. its not a life threatening condition (thank God) but its sooooo scary and dibilitating. if i accidentally eat gluten i find my heart skips and feels out of rhythm. and like the others said it just sort of kicks in high gear and then it pops back into a normal pattern. episodes can last a couple beats to several days.

i hope all turns out well for you. best wishes!

0

Share this post


Link to post
Share on other sites

Wooh! Doctors appointment on Monday February 13th! And the doctor sounds very good, so I'm excited:)

0

Share this post


Link to post
Share on other sites

Wooh! Doctors appointment on Monday February 13th! And the doctor sounds very good, so I'm excited:)

Yay!! Let us know how it goes.

0

Share this post


Link to post
Share on other sites

Id love to know how it goes as well since I'm experiencing the same sort of symptoms. Mine starts up abruptly and leaves just as fast. It's like this boomboomboomboom regular beat??

0

Share this post


Link to post
Share on other sites

Went to the doctor yesterday and all they told me was to come back next week for an EKG and probably Holter monitor. That's about all because my pulse was normal while I was there.

0

Share this post


Link to post
Share on other sites

What happened with you? My symptoms were very similiar to yours and I was diagnosed with NSVT and atrial tachycardia- devastated as I'm 27 with 2 children under 4

0

Share this post


Link to post
Share on other sites

I am so sorry to hear about your diagnosis. What is your doctor recommending for you?

0

Share this post


Link to post
Share on other sites

Absolutely nothing... Which is why I want to see an electrophysiologist for a second opinion. If it's nothing to be done fine, but I'd like to see if I'm a candidate for ablation.

0

Share this post


Link to post
Share on other sites

Absolutely nothing... Which is why I want to see an electrophysiologist for a second opinion. If it's nothing to be done fine, but I'd like to see if I'm a candidate for ablation.

That sounds like a good plan - make sure you get a good one at a center that does a lot of ablations.

I am scheduled for ablation this coming Thursday. :)

0

Share this post


Link to post
Share on other sites

Let us know how it goes. Tomorrow is your Big day so here's to feeling well!

0

Share this post


Link to post
Share on other sites

I have gluten intolerance and Hoshimoto's and Atrial Fibrillation. I found in a post about the truth of MSG that MSG is also a food ingredient that starts irregular heart beats. This is my experience within an hour of eating prepared foods. I found out that the glutamate competes in the body with cysteine. The body uses cysteine to make taurine, the body's heartbeat regulator, used as a neurotransmitter. A taurine deficiency state can be induced by MSG. Has anyone experienced this?

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,145
    • Total Posts
      919,571
  • Topics

  • Posts

    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,177
    • Most Online
      1,763

    Newest Member
    lolobaggins
    Joined