heart related question

[ironictruth]

So my heart has been doing weird stuff post gluten challenge. Skips beats, arrhythmias, chest pain. It was getting a bit better then worse again in July.  

My cardiologist has done 2 stress tests, halter monitor, and we have not caught anything other then harmless pvc's. But I KNOW this is not right for my heart and it has gone wacky out of sync and we never catch it on a damn test.

All of my doctor's were connected out of a larger practice, so the GI, cardio, neuro, and primary care can all see the mountains of tests I had and think I am a nutcase the moment I walk through the door. I will admit that I informed the old GI about the DGP test being positive and I sent over some info on the test as they were basically using TTG and old gliadin tests, and they were receptive. But for the most part, I do not trust doctors. I was once told I was in false labor when I actually had 13 gallstones and an infection in my bile duct. I have more horror stories, as we all do.

So, my protein and RBC were low in the hospital but all up to good levels now so it is not a vitamin deficiency. My heart has already skipped multiple beats today. The other day, it again went out of rhythm for just 20 seconds or so. I am not drinking coffee or alcohol because of the acidity, so it is not that.

I was glutened on August 24th and probably once in July. Does anyone have weird heart issues that vanish eventually? If so, how long does it take?

I am an over-thinker, which has its pros and cons. I know we are at an increased risk for CAD which is not really my concern right now. My gut is inflamed, my thyroid is inflamed and my adrenal gland was effected by all of this. I sort of wonder if an exposure to gluten causes some kind of myocarditis, an inflammation that would not be picked up a sonogram per se, and may eventually vanish with a gluten free diet.

Has anyone ever had experience with myocarditis? I did a lot of reading on Roemheld syndrome, gastro-cardio syndrome, which is basically a set of cardio symptoms resulting from your gut. Praying it is just that!

I just feel like now that I have a diagnosis, I need to rebuild a team of doctors that I feel have my back. This is a sucky disease that can have a lot of ill effects and I need a team I feel is intelligent, supportive and willing to research. I already have a new GI and a great Endocrinologist. I am seriously contemplating a new cardio and neuro as they both talk to me like I am a 12 year-old with "hysterical girl syndrome".

[Gemini]

Here is an article, albeit short, about Myocarditis and Celiac disease.  I have read before about a connection between the two and A-Fib is another one that can happen with undiagnosed Celiac. From one over-thinker to another......its the inflammation thing, along with maybe some genetic components to it.  I can't remember how long you have been gluten-free but it can take awhile for things to settle down, especially if your thyroid is wonky also.  I have Celiac and Hashi's so feel your pain, even though I have not had any cardiac involvement. 

Some doctors really suck. I have a lifetime of bad with them so do not go that often, only when I have to and am leery about seeing any new ones. I am so done with that attitude of theirs. I think you need to find someone who has knowledge of Celiac and it's related conditions and who actually listens to the patient. That might be harder than finding a needle in a haystack but I wish you luck! 

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[squirmingitch]

For a number of years pre diagnosis I had irregular heartbeats - anything from a fluttering type thing to seemingly skipping one or more beats to rapid beats to something like a short drum riff. I had multiple ECG's which didn't find anything odd. It never did it when I was at the doctors or getting the ECG's. Sometimes it seemed to pound very hard & rapid, at these times I discovered if I just laid down flat on my back, it would restore normal rhythm almost instantly. These things happened at random whether I was at rest, sitting, standing, running or working hard. It was always short lived -- lasting only 1 to several seconds, perhaps the longest was close to a minute.

I too have little faith in docs as I've had my share of being blown off, to misdiagnoses.

The whole heart thing quit after I had been gluten-free for a while but if I get glutened, it returns.

[Froggymom3]

I too have heart palps, flutters, skips whatever you want to call them. Ecg shows nothing. I was told by my doctor it is due to my low iron which is due to celiac. They pretty much went away after being gluten-free. But occasionally do come back. I've actually been having them for the past 3 days. But I was glutened with really severe reaction about a week ago so not sure if its due to that. Or if iron is low right now. I am on supplements but it still goes up and down. I hear you about doctors. It seems if you don't do research yourself or ask questions they don't say or do or test for anything. 

[ironictruth]

Thank you everyone! Good to know I am not alone with this. I am asking for a referral to a new cardio. Hopefully it will all go away the longer I am gluten-free. It started up in February/March after a gluten challenge and mostly vanished until July when I had a lot of shortness of breath. It absolutely was CRAZY just a few days after the glutening. I was gasping for breath and the beats were all over the place just walking through a parking garage and I was only mildy anemic at the time.  

But it seems to "quiver" and do funny things for a bit still.

I sort of theorized maybe it was inflammation in the heart because after this last glutening, my head felt like it was in a vice and my eyes would sting or get stabbing pain hurt (that is finally going away thankfully...knock on wood).  The head/eye pressure I learned also happens to my sibling who has celiac and his naturopath told him that sometimes the brain gets inflamed.

Hopefully I can meet the new cardio soon and feel confident that he is taking me seriously.

It is sort of difficult to feel confident in the opinion of a doctor that your ticker is ok when they are not really listening and end up making you cry. LOL.

A friend of mine in the mental health field recently listened to my story of doc after doc and test after test and said that it was akin to the folk story of blind men describing an elephant. A group of blind men all feel one part of an elephant (tusk, tail, ear, tail) and then compare notes only to find they all disagree.  In some  versions they argue intensely. In other versions they have to collaborate and listen to each other in order to "describe" an elephant.

   

[Mr. Pep'r]

  On 9/28/2016 at 2:19 PM, ironictruth said:

I was glutened on August 24th and probably once in July. Does anyone have weird heart issues that vanish eventually? If so, how long does it take?

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ironictruth, three years ago I was glutened and had some serious GI distress.  I went to my doctor for some blood work thinking my Iron was low, but it turned out my Potassium level was really low from the days of malabsorption.  Just prior to my blood work I had a heart palpation that made me think it was a heart attack.  Same thing with me, I went to a Cardiologist, did some tests and even wore a monitor for 30 days, the good news, they found absolutely nothing!

My Potassium level has been fine since and haven't really noticed any kind of palpation of that level since then.  On a side note, I have also stopped eating out at so-called "safe" restaurants for over a year now and my over all health has greatly improved. 

Hope this helps.

[ironictruth]

  On 10/7/2016 at 4:46 PM, Mr. Pep'r said:

ironictruth, three years ago I was glutened and had some serious GI distress.  I went to my doctor for some blood work thinking my Iron was low, but it turned out my Potassium level was really low from the days of malabsorption.  Just prior to my blood work I had a heart palpation that made me think it was a heart attack.  Same thing with me, I went to a Cardiologist, did some tests and even wore a monitor for 30 days, the good news, they found absolutely nothing!

My Potassium level has been fine since and haven't really noticed any kind of palpation of that level since then.  On a side note, I have also stopped eating out at so-called "safe" restaurants for over a year now and my over all health has greatly improved. 

Hope this helps.

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Thank you. Ironically, I was in the hospital after an arrhythmia and potassium wand magnesium were fine. When they were taken a week later, they were lo due to the D. But they have been fine since (at least when tested).