18 replies to this topic

[kimis]

Some nights when I lay down to go to sleep my heart starts to beat really hard...not fast, just hard. I can feel my pulse throughout my body, mostly in my head, and I can hear it in my pillow. Sometimes I just lay there and fall asleep, but other times I have to get up for a while. It has woken me from my sleep a few times too, but when that happens it is fast and hard. Any ideas or similar stories? Thanks!!

[mushroom]

That has been a feature of my life since long before quitting gluten. The pounding in my head is sufficient to keep me awake and sometimes becomes very uncomfortable, like I can't bear to put my head on the pillow. However, with me this is normally accompanied by bloating which actually puts pressure on the heart, although I have had milder cases without bloating. I am sure it is related to other food intolerances and am currently exploring the theory that I am intolerant to lectins--have just recently stopped eating green beans and peas since the last dramatic event was after I had eaten fresh peas (organic, from my own garden yet!).

The lectin foods I avoid are gluten (there are lectins in gluten grains), corn, soy, peanuts, nightshades, legumes. Since I cut out the legumes I have not had that pounding heart although I still do have a very strong pulse. With the worst events, the heart would be pounding, racing, skipping beats and doing double beats, and there would be pain in my arms, hands and wrists, and my shoulders. It used to be quite frightening at times. I will be really glad if it has finally gone for good. (There are also lectins in dairy, but I am able to eat dairy.)

Are you aware of any other intolerances in your diet? Do you get the bloating as well? I could calm things down if I was able to get rid of the bloat.

Like you I would often be jolted awake, and I think that is the beginning of the racing pulse.

[elle's mom]

I have the same exact thing.......well, the pounding heartbeat, not the bloating though. And it does jolt me awake on occassion. The weird thing for me, is that it's almost an enjoyable feeling, not the jolt, but the moments just before the jolt, like a very deep peaceful type of sleep. I know, very weird! I'm sure I have other food intolerances also, but have not to this point completely narrowed them down, so it very well could be the legumes, interesting. I only notice this at the beginning of sleep though, it would be neat to participate in a sleep study and have this explained.

[kenlove]

Having just had minor heart surgery a few days ago I have to say that I never had any heart problems until I was diagnosed with celiac 5 years ago. While they were still in the process of diagnosing me for that I was ssent from the doctors office to the ER for a heart beat or pulse of 168 -- they go it down and put be on pills and didnt have any trouble until last july when I had a minor heart attack although I didnt know it for 3 days. - I have 0 blockage according to the 6 tests they gave me and the problems come from short circuit in the heart chamber which causes a totally irregular heart beat -- 24 hour monitors and no pattern. At tim es it went between
A-fib and Atriel fluttter. Finally they decided to do an ablation on me Friday which was amazing. Watching the wires and lasers in my heart on Tv in real time and not feeling it was pretty darn interesting. Getting a ton of energy back almost instantly was even better.
Still have to stay in bed for a week.

Guess what Im getting at is that for me, i think celiac and reaction to being glutened caused the irregular heart beat. No science behind that, just my feeling. I would have your heart checked for regularity. We even bought one of the home blood preasure and pulse checking machines for $100.

good luck

[bluebonnet]

my experience - its absolutely terrifying when it happens. i have dealt with the irregular/hard/fast beating for 14 years. i have had numerous tests done too. i wore a monitor for 1 month straight one time. they told me that ablation would help correct it (like kenlove said he had). i usually have pretty good bp. (i check it often with a home machine). i have no idea if i have blockage. sometimes my heart rate would go up to almost 200 for hours and i would think i'm dying. i've been told it was everything from panic attack (although that just made no sense since it would happen while sleeping or totally relaxed) to there being "extra electric pulses that are misfiring". i haven't had an episode that sent me to the er in quite a while. i was on a betablocker for over a year and decided to wean off of it. i know thyroid can throw the heart into an off pattern too so for a while they contributed the palps to my medication, that was eventually ruled out.

since going gluten free i have noticed a major difference with episodes ... if i eat a lot of sugar or something with msg or major lack of sleep (i have insomnia already but if its particularly bad several days in a row)or gluten i notice the palps and racing. i know there is a link there just by my own experiences. it can't all be coincidences.

definitely see a doctor ... but make sure they don't just have you walking away thinking its a panic attack or too much stress. have them run tests. so many people have irregular heart palps that come and go but if yours comes and goes on a regular basis you want it to be diagnosed.

what's weird to me now is that i hear my pulse in my ear all the time. on top of the ringing. no one can tell me what that is. it happens mostly when i get up from sitting for a while or when i wake up. so strange. i hope you find the actual cause and that its nothing serious.

[mommida]

I never heard of this being related to Celiac.
Has anyone noticed if they have a different blood pressure reading when sitting compared to standing?
Is your blood pressure in the high range or low range?
At least 2 of you feel it is related to another food intolerance.
My aunt (who has not been diagnosed with celiac disease) told me this is how she reacts to MSG.

[kenlove]

I had that month long monitor too and there were no patterns to my pulse which is one reasons they decided to give me the ablation. I know what you mean about that heart rate going up os much too. Passed out in a parking lot last July when it happened for an extended time. It was getting to the point where I would stand up after sitting for 2 hours and keel over as my legs were not getting the circulation as my heart would only beat at 38 or so for each time it was at almost 200.
So far so good -- been taking my bp a few times a day since I had the surgery on the 12th and its all good so far.

ken

my experience - its absolutely terrifying when it happens. i have dealt with the irregular/hard/fast beating for 14 years. i have had numerous tests done too. i wore a monitor for 1 month straight one time. they told me that ablation would help correct it (like kenlove said he had). i usually have pretty good bp. (i check it often with a home machine). i have no idea if i have blockage. sometimes my heart rate would go up to almost 200 for hours and i would think i'm dying. i've been told it was everything from panic attack (although that just made no sense since it would happen while sleeping or totally relaxed) to there being "extra electric pulses that are misfiring". i haven't had an episode that sent me to the er in quite a while. i was on a betablocker for over a year and decided to wean off of it. i know thyroid can throw the heart into an off pattern too so for a while they contributed the palps to my medication, that was eventually ruled out.

since going gluten free i have noticed a major difference with episodes ... if i eat a lot of sugar or something with msg or major lack of sleep (i have insomnia already but if its particularly bad several days in a row)or gluten i notice the palps and racing. i know there is a link there just by my own experiences. it can't all be coincidences.

definitely see a doctor ... but make sure they don't just have you walking away thinking its a panic attack or too much stress. have them run tests. so many people have irregular heart palps that come and go but if yours comes and goes on a regular basis you want it to be diagnosed.

what's weird to me now is that i hear my pulse in my ear all the time. on top of the ringing. no one can tell me what that is. it happens mostly when i get up from sitting for a while or when i wake up. so strange. i hope you find the actual cause and that its nothing serious.

[bluebonnet]

wow ... i know a few people that have had great success with ablation (as in no more racing or skipping beats!!) i often wonder what is goin on with mine though,especially when doing something like push ups makes my *skin* hurt to the touch right in the middle of my chest ... possibly inflammation from the push ups and years of undiagnosised celiac?? anyone ever heard of that or link them together? weird. because of all of the irregular beating and racing over the years i always worry something could be wrong with my heart.

i hope the ablation fixed the problem and everything is a-okay for you kenlove!

[kenlove]

Thanks bluebonnet

i'm still a little weak after running around outside, but considering it was only 9 days ago I cant complain at all. What did they tell you about ablation? I thought the technology was amazing.
I think I blame celiac for everythning since prior to that I never had a cold.
good luck
ken

wow ... i know a few people that have had great success with ablation (as in no more racing or skipping beats!!) i often wonder what is goin on with mine though,especially when doing something like push ups makes my *skin* hurt to the touch right in the middle of my chest ... possibly inflammation from the push ups and years of undiagnosised celiac?? anyone ever heard of that or link them together? weird. because of all of the irregular beating and racing over the years i always worry something could be wrong with my heart.

i hope the ablation fixed the problem and everything is a-okay for you kenlove!

[mamaw]

Hi Ken
I guess I didn't read this post before now! I'm glad you are doing well after the ablation. They wanted to do this to me in Oct 09 because of A-Fib that was way out of control... But my problem is I'm allergic to the deep sleep meds! I can only do versaid which is the twilight drug & I just didn't think it would cut-it for heart surgery. They finally got my BP down after I reacted to four meds first then one worked! I had migraines for two weeks just trying to have my body accept this drug.....

anyway take it easy & I'm glad you are recovering ...
blessings

mamaw

[kenlove]

thanks mamaw
they didnt knock me out for this procedure and I didnt feel a thing. mostly topical --
there are no nerves inside the veins so I never knew they already had the wires in me until I saw it on TV.
What an amazing difference in just breathing easier!

take care

Hi Ken
I guess I didn't read this post before now! I'm glad you are doing well after the ablation. They wanted to do this to me in Oct 09 because of A-Fib that was way out of control... But my problem is I'm allergic to the deep sleep meds! I can only do versaid which is the twilight drug & I just didn't think it would cut-it for heart surgery. They finally got my BP down after I reacted to four meds first then one worked! I had migraines for two weeks just trying to have my body accept this drug.....

anyway take it easy & I'm glad you are recovering ...
blessings

mamaw

[mamaw]

Ken..
I did know that there was no pain but they thought they wanted to knock me out for some reason. I agreed with the versaid but not anything else... I've watched twice the wires go through my groin & up to the heart. Wow, it is amazing , no pain what so ever so I'm still not sure why they wanted to knock me out!
I do believe the next time I go into A-Fib I will do the ablation.. I always have mild A-Fib & sometimes flutters only. I never had heart trouble until my thyroid put me into A-Fib three years ago... then a thyroid storm . I've had my thyroid ablated already......
It is good to know how well you are doing . I didn't know anyone who had this procedure done ..
thanks

mamaw

[jackay]

what's weird to me now is that i hear my pulse in my ear all the time. on top of the ringing. no one can tell me what that is. it happens mostly when i get up from sitting for a while or when i wake up. so strange. i hope you find the actual cause and that its nothing serious.

Bluebonnet,
This is called Pulsatile or Vascular Tinnitus. There are different causes for it. I have had it for most of 4 1/2 years. It went away for a short time about 15 months ago but returned. Mine started when I got extremely high blood pressure from severe headaches. It didn't go away when I went on blood pressure medication. I got the headaches and blood pressure under control and was able to go off the medication. The tinnitus still didn't go away.

When my headaches were so bad, it actually was a very loud squeaking pulse. Now it is just a regular pulsing noise. I normally hear it all waking hours except when I am driving a car, exercising to music or walking. I hear it as I am writing this.

Now that I am gluten free and and working hard to eliminate other food intolerances, the pulsing isn't nearly as loud and not quite as annoying. I question that it will ever go away.

[kenlove]

Interesting about the thyroid - i was told I have a parathyroid problem with calcium buildup and they will want to remove it in the next year or two. Two more tests scheduled for the next few weeks. Never put it together with the heart trouble since that started along with the celiac.
Then again they know so little about celiac it is most likely all tied together.
take care
ken

Ken..
I did know that there was no pain but they thought they wanted to knock me out for some reason. I agreed with the versaid but not anything else... I've watched twice the wires go through my groin & up to the heart. Wow, it is amazing , no pain what so ever so I'm still not sure why they wanted to knock me out!
I do believe the next time I go into A-Fib I will do the ablation.. I always have mild A-Fib & sometimes flutters only. I never had heart trouble until my thyroid put me into A-Fib three years ago... then a thyroid storm . I've had my thyroid ablated already......
It is good to know how well you are doing . I didn't know anyone who had this procedure done ..
thanks

mamaw

[bluebonnet]

i've got hypothyroid that's been "under control" for about 18 years. i've been told that thyroid can definitely impact heart function. i thought it was my thyroid causing my arrhythmia but now i wonder if its celiac finally discovered. i'm only 2.5 months or so into this with a couple of cross contaminations so i've got a ways to go before i see improvement or (prayerfully) resolved issues.

my friend's husband had the ablation and he was wide awake and saw the whole procedure. he would have tachycardia episodes regularly and has passed out from them. it was atleast 3 years ago and he is doing just great! he's very glad he did it. for awhile he would worry it was going to happen any moment especially if he felt a palp or two. as time went by he felt more confident the problem was fixed.

another woman i know had it done 3 or 4 years ago and hasn't looked back ... she also said it was an unnerving but painless procedure and she is totally fine and active to this day. at the school i used to teach at there were 2 teachers who had it done because of SVT's and recommend it and feel so much better. its a pretty common procedure. in my little circle i know of 5 people who had it done.

and kenlove, you sound like another success story which is fantastic!