Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Hard Heart Beat At Bedtime


kimis

Recommended Posts

kimis Collaborator

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!!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mushroom Proficient

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 :D 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 Contributor

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 Rising Star

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 Explorer

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 Enthusiast

I never heard of this being related to Celiac. :huh:

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 Rising Star

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. :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



bluebonnet Explorer

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 Rising Star

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 Community Regular

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 Rising Star

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 Community Regular

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 Enthusiast

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 Rising Star

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 Explorer

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! :)

jackay Enthusiast

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

I had hyperparathyroidism and had surgery to remove three plus parathyroid glands. I was having irregular heartbeats back when I was so sick with that and before I went gluten free. My heartbeat is normal now but unfortunately I still hear my pulse.

bluebonnet Explorer

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.

i googled that and it sounds scary. my bp is usually around 112/70ish and the doctor has listened to my neck checking for the telltale gurgling noise associated with blockage. he said it sounds normal. even though it happens daily but with no ryhme or reason i don't know the cause of mine and that's what is frustrating.

and thanks for the possible cause ... i've made a note of it and will bring it up at my next dr appt. who knows ... i insisted on testing for celiac so maybe bringing this to the table will help the doctor figure things out. crazy how sometimes the patients are smarter than the doctors, huh.

kenlove Rising Star

the sounds are scary at times. My chest has popped so loud it's woken me up out of a sound sleep.

GUEss I"ll have to deal with the parathyroid soon. They want to do a bone density first. I just dont want to go into a-fib or a flutter again.

I had hyperparathyroidism and had surgery to remove three plus parathyroid glands. I was having irregular heartbeats back when I was so sick with that and before I went gluten free. My heartbeat is normal now but unfortunately I still hear my pulse.

jackay Enthusiast

GUEss I"ll have to deal with the parathyroid soon. They want to do a bone density first. I just dont want to go into a-fib or a flutter again.

Kenlove,

I had a bone density test done before my surgery and had osteopenia. Supposably it is suppose to reverse quickly after surgery. My endocronologist hasn't mentioned having it rechecked. I'ts been 11 months since I had my surgery. I really would like to know if it reversed.

Jackay

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,258
    • Most Online (within 30 mins)
      7,748

    Tdodge
    Newest Member
    Tdodge
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.