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My Heart
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I need to get this out and don't want to share this with my loved ones. I'm worried about what damage has been done to my heart by all of this illness and stress I've been through. My doctor confirmed the "bubbles" I'd been experiencing were palpitations. I honestly thought they were bubbles - I guess I watch too many movies. I have had arrythmia since '11.

On Monday, I saw a cardiologist for low heart rate and palpitations. My resting heart rate was 44. I have had chest pain on and off but, of course now, it seems to be a constant pressure. Tomorrow, I go in for a resting ultrasound and next week, a stress test ultrasound.

This morning, I woke up with a lot of inflammation and know this isn't good for the heart. I never realized that my gluten discovery was only the beginning. I thought I was lucky as hell to have discovered my problem when I did as I was very sick and doctors were befuddled. It's as if I put all of my energy into those years seeking diagnosis and I need more now to continue and it's just difficult. It just didn't occur to me that I could have other damage from all of that inflammation and illness.

I'm scared that I'll be sick the rest of my life and the struggle will never end... or that I won't survive. I hope I can walk my way out of this or that it's a simple fix. Doing some serious bargaining like, if it's simple, I'll never complain about anything again.

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Did the cardiologist do a EKG on Monday? Let us know how your ultrasound goes today. I know this is all so scary. I hope someone else can chime in with more experience. I had a cardiology appointment not long ago because of symptoms but was cleared. Was basically told if symptoms persist to go back in six months for reevaluation. Just wanted to offer some sort of support but I'm sorry I don't know what to say. Update us when you can.

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I hope it's nothing too serious. (hugs)

I know thyroid issues can mess with your heart rate and cause palpitations. Maybe that's something to look at too? Just throwing a thought out there.

 

Hang in there. I think those of us who research health issues and actively search out health solutions have the problem that we read what COULD be wrong and scare ourselves with worst case scenarios. We have read how bad things can be, but we usually are not the worst case out there.  I was personally pretty convinced that I had lupus, but it turned out to be celiac complications - so still annoying but not as life changing.  Recently I was worried about acromegaly as my growth hormones were way off the charts but it seems to have been a blip of some sort, and I still have no idea why it was high.

 

Chances are it's not a life threatening thing.  Try not to worry too much right now when you don't know what it is.... I know, I know.  That's much easier said than done, isn't it?

 

Hang in there.

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My blood pressure was plummeting when I stood up and stayed down.  Other than that my blood pressure was high.  It was scary and I wondered if I could get better.

 

I had my heart screened recently and everything was normal.  I just did it since I wondered if any permanent damage had taken place. Everything looked fine.

 

Make sure that your nutrient levels are good.  Magnesium is one thing that helped me.  However, I had help from practitioners trained in nutrition and did tests, to see what I actually needed and I would recommend something like that. 

 

I felt I was ready to die, if I needed to, I had that settled. That eases fear and gives one hope too.

 

Dee

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Thank you guys. I went to a cardiologist in '11 and he told me I had a leaky valve that I shouldn't worry about as long as I didn't shoot up with street drugs. He also said I had a benign arrythmia. This was before I discovered gluten was my problem. He also didn't think anything was wrong with me when I walked in and then looked sheepish when he called me back in from the parking lot when he gave my ultrasound a closer look.

My regular doctor mentioned sick sinus syndrome which would mean I'd need a pace maker. I guess I'm afraid I did permanent damage to myself when I was severely anemic and doing the "boot camp" workout. I ended up having heart attack symptoms during a workout and that's when I found out I was anemic in '09. My hemoglobin was 7.9 and Ferritin was 3 and I was sprinting up hills and doing squat thrusts. (Oh yeah, and getting fake tan because my skin was pale. Really?!?).

The thing that bothers me the most is my lack of ability to listen to my own body. I was living in bed, going to workout and getting back in bed until the next workout. My brain was crazy and I don't know why I would do such a thing except that I was just trying to be normal and get my muscles healthy from the previous illness from which I was recovering. That's how it was for ten years. Some big illness and then trying to recover like a champ. Was put on a ridiculous amount of drugs. Now I really am recovering and don't have what I had before all of those Herculean efforts. While seeking a diagnosis, I was hyper-vigilant about my symptoms while the doctors scratched their heads. Apparently, I've reverted back to just writing things off. Two modes here: hypervigilance or dismissal of symptoms

Yesterday, I had the resting ultrasound and then treated myself to lunch at the only restaurant I feel safe, True Food. I had a burning pain in my diaphragm area for 30 minutes and then that was it. It was so worth it. I stopped at my favorite store Gap Body and bought underwear and next door at my husband's favorite, William Sonoma and bought two spatulas. I was trying not to limp from the burning pain but determined to be "normal" while out. It was a red letter day. I ended up sleeping round the clock for 12 hours.

Maybe it's time to get more active and my heart just needs a reason to pump harder. That is what I'm hoping. My regular doctor read off my test results from September listing normal values and then mine, pausing to look to see if I was "getting it". I was in bad shape and it's no shock to her that I'm not exactly well yet. She believes if someone looked at my small intestine from beginning to end, they would see damage throughout. (And why do I believe I would heal faster than anyone else?? I have the worst arrogance.) We are retesting to see how much I've improved.

I had three health appointments this week (two cardio & one bone density) and that's just overwhelming. Again, I keep thinking I can handle more than should be expected.

Thank you for your support. I really appreciate it. I'll report how things turn out after next week's stress test ultrasound and am going to keep thinking positively.

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I was personally pretty convinced that I had lupus, but it turned out to be celiac complications - so still annoying but not as life changing.

I've sometimes thought I have Lupus. According to the Internet, all it takes to be healthy is to avoid gluten. Little did I know the road ahead with this thing. I have to look back to appreciate that I'm not as sick as I was a few years ago and thank goodness for that.

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I don't have experience to share but wanted to say that I'm so sorry to hear you're having these struggles right now. I definitely know what it's like to feel like the challenges will ever end.

 

Please try not to be hard on yourself. It's not your fault that you're sick. It's easy to go down that road wondering what if I had done this or that differently. You're doing the best you can and that's all you can do.

 

I'll be thinking positive thoughts that you get some answers soon that will make you feel better.

 

(((hugs)))  :)

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I'll be thinking positive thoughts that you get some answers soon that will make you feel better.

 

(((hugs)))  :)

Thank you! I did the stress echo today and it went well. The doctor said there was nothing concerning on my EKG. My heart rate stayed low & she said she was worried she'd have to install a pacemaker and then it rose a little. I laughed and said her words were magical. She kept encouraging me with "You have to get to 85% or else I'll have no choice but to put in a pacemaker" and I kept going. When I was tired she told me to go one more minute or else at that point, I'd need a pacemaker. The technician told me to think stressful thoughts, lol. So I hung on tight and the doctor called out, "82%, 83, keep going, 84, 85 done!". When I laid back down on the table, the technician said, "Look how fast it's dropping" and the doctor said, "Yes, I see that".

Anyway, she said my heart remembered my athleticism from the past and that she was encouraged by what she saw today. She said she'd need to look at it further but she thought whatever was causing the low heart rate & other symptoms wasn't because of my heart.

This is a relief. Every heart beat is vital! Before now, I've been thinking about the children in Calcutta and have reflected on just how many happy memories I've had of life. I've been more than a day-tripper here on this earth and it is good.

Monday is a sleep test and then preliminary testing for MCAS. With every heartbeat now, I hear "Strong heart. Strong heart. Strong heart". <3

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Yay! Thanks for letting us know... I already knew you had a good heart :)

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Yay! Thanks for letting us know... I already knew you had a good heart :)

:)

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Hi CS!

 

I had this -- turns out it was connective tissue inflammation within my chest walls -- well that is the consensus after I passed every heart test including that fun 24 monitor dealio. 

 

Hard as it is to hear -- stress causes inflammation -- do everything you can to reduce stress and try not to worry -- I know, I know -- many told me this and I asked -- how oh how do I do more than I am doing.

 

As you feel stronger, you will worry less -- at least that is my hope for you along with me ;)

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Great to hear!  Do you have a high enough magnesium level?

 

Dee

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Good news! I hope as you heal those symptoms disappear for you. Let us know how your sleep test and MCAS go. So glad you had good news at the cardiologist!

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Yeah!  :)

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Hi CS!

 

I had this -- turns out it was connective tissue inflammation within my chest walls -- well that is the consensus after I passed every heart test including that fun 24 monitor dealio. 

 

Hard as it is to hear -- stress causes inflammation -- do everything you can to reduce stress and try not to worry -- I know, I know -- many told me this and I asked -- how oh how do I do more than I am doing.

 

As you feel stronger, you will worry less -- at least that is my hope for you along with me ;)

Thank you! That is good to know! There have been a lot of articles lately that reported higher cortisol in someone who just witnesses someone having a stressful moment (or even watching a stressful TV show). I have been noticing my inner dialogue and am making changes to the wording I use. That's a process. Just a few days before my appointment, I told my husband I couldn't be his sounding board right now. He has a stressful job and I've always listened and supported but it leaves me tired and stressed.

What I'm noticing most of all is that, it's true, so much depends on my current condition. Sometimes I get onto myself for not trying harder and then I'll catch a look at my bloated face in the mirror. You're right. The health is a step ahead of the mind and the stronger I am, the easier the mind and boundaries are to define.

So, that being said, my doctor called and left a message last night. The cardiologist is asking for bloodwork, specifically WBC, RBC and thyroid (she said it in that order). Now I'm scared again. She wants me to go get it soon. It could be any number of things, of course. I found a little snippet on a livestrong article that says, "Inflammatory diseases can cause slow heart rate as well as sleep apnea" and since I happen to be doing a sleep test right now, THAT'S WHAT I'M GOING WITH. That and your experience. I do know stress causes inflammation and am doing what I can to mitigate it. Right now I want off of this merry-go-round but it doesn't help me to think it.

I don't really know what to do with myself. I don't feel well but I still have responsibilities. I don't know whether to take it easy or to push. My face looks better today than yesterday. The last few months I've been bruising and bleeding during acupuncture and that's new. :( The MCAS possibility makes sense and I hope that's what it is. My husband has just come down with his second cold this year and *knock on wood* I've been spared so far. That's GOT to mean something good immunity-wise, right?!

Guess I need to make a new checklist and get this all out of the way. It seems that one test begets another. Maybe this is just to rule out the big stuff that is very, very uncommon. Or maybe my thyroid needs some help and it's good it's being checked. (Argh)

It sure is nice to have the windows open and a cool breeze blowing today.

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Great to hear!  Do you have a high enough magnesium level?

 

Dee

I really don't know. In 2011, I began taking a liquid magnesium bicarbonate to help me sleep and that's around the time that the arrhythmia started. I was suspicious and took it into the cardiologist I was sent to at that time. He brushed it off when I asked him if it could have an impact on the heart. However, last year when I was told my heart beat was slow, I showed it to my current doctor and she said it could absolutely have an impact so I stopped taking it in the hopes that my heart rate would improve before May (that's how long I was told I could wait before seeing a cardiologist).

I'll ask this new cardiologist about magnesium next time I see her.

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For me, I am always happy to have more tests done rather than less.

I've had everything you are listing and all were normal with minor issues related to my thyroid tests that have now corrected themselves.

Get the tests and strive to be patient waiting for results....again I know easier said than done.

As for the hubs...being a sounding board for him may help his stress level which in turn lowers your stress level. Limiting stress really isn't about eliminating all stressors...that is not possible unless you are a very isolated person...which can also increase stress.

Sorry...hope that makes sense.

Hang in there :)

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For me, I am always happy to have more tests done rather than less.

I've had everything you are listing and all were normal with minor issues related to my thyroid tests that have now corrected themselves.

Get the tests and strive to be patient waiting for results....again I know easier said than done.

As for the hubs...being a sounding board for him may help his stress level which in turn lowers your stress level. Limiting stress really isn't about eliminating all stressors...that is not possible unless you are a very isolated person...which can also increase stress.

Sorry...hope that makes sense.

Hang in there :)

Yes it does make sense. Thank you.

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Yes it does make sense. Thank you.

 

I love it when that happens ;)

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I love it when that happens ;)

Yes, dumbstruck is definitely a better place. Thanks again! :) :-o

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Just a few days before my appointment, I told my husband I couldn't be his sounding board right now. He has a stressful job and I've always listened and supported but it leaves me tired and stressed.

Good for you! He can reroute that in another direction... like to another coworker. You have enough on your plate.

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Good for you! He can reroute that in another direction... like to another coworker. You have enough on your plate.

Thank you :) I wish he had co-workers. That's the rub. However, the request seems to have had a positive impact on us both so far. Better for the heart? :) It's curious. In the meantime, a friend of mine just had a heart attack and he's not going to make it. What a crazy time this is. I feel like I'm floating through space right now.

I haven't started the sleep test yet. A lady who hadn't seen me in two months told me today that I looked healthier and had more color in my face. That is encouraging.

Time for bed.

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I hope it's nothing too serious. (hugs)

I know thyroid issues can mess with your heart rate and cause palpitations. Maybe that's something to look at too? Just throwing a thought out there.

 

Hang in there. I think those of us who research health issues and actively search out health solutions have the problem that we read what COULD be wrong and scare ourselves with worst case scenarios. We have read how bad things can be, but we usually are not the worst case out there.  I was personally pretty convinced that I had lupus, but it turned out to be celiac complications - so still annoying but not as life changing.  Recently I was worried about acromegaly as my growth hormones were way off the charts but it seems to have been a blip of some sort, and I still have no idea why it was high.

 

Chances are it's not a life threatening thing.  Try not to worry too much right now when you don't know what it is.... I know, I know.  That's much easier said than done, isn't it?

 

Hang in there.

I was just curious if you could share what was going on that you thought you had lupus but it was celiac related?  The reason I ask is that I was diagnosed with Celiac in April of 2012 but my mom refused to get tested because "she's never had any problems with her stomach" which I tried explaining that doesn't have anything to do with it but she wouldn't listen.  Now she's breaking out in splotchy redness all over her face - big red spots - and the dermatologist told her she might have lupus.  She noticed that when she ate bread it was worse so I told her to watch what she was eating and when the break outs occurred - but then she avoided bread for a day and still had a break out so now she doesn't thing bread/gluten has anything to do with it.  I am insisting she get tested for Celiac because she might have it or DH.  They are going to do a full work up but they leaning towards Lupus.  Anything you can share would be helpful for me to share with her.  I appreciate it!  

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Sorry to hear about your friend CS. The timing is so poignant. It really puts things into perspective when these things happen, sort of takes the wind out of you.

 

That was nice someone said you look healthier. Encouraging!

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Good evening!

 

I'm still undiagnosed but I have a close relationship with unknown heart palpitations Calisparrow, and although I think we have very different symptoms maybe saying what I had/have can help?


At my worst I was an insomniac 2 hours of sleep was the longest I could get in, heart palpitations off of any easy amount of work/stress, and palpitations shortly after eating (I was still eating gluten at the time.... genius).   As my doctor put me on the fodmap/no gluten diet i noticed the palps would reduce, but I noticed the palps return when my heart would be slower?  (that's what it would feel like)

 

Shortly before my colonoscopy they had my heart rate on the screen and I was showing 46bpm (I'm 25 years old, not an athlete)

I started taking powdered magnesium as doc thought gi problems/possible thyroid.   Drinking magnesium would really help the stress, and my palps dropped to a few times every hour, but I noticed my bpm was dropping to around 40bpm.

 

EKG comes back as sinus bradycardia with sinus arythmia, doc tells me i'm a healthy young person and should be thankful.  I did not like that answer considering how I feel.  thyroid/hormones/CBC came back normal.

 

Come 6 months later, I am 99.9% palp free.  I occassionally get them if i'm gassey,  I'm currently using a paleo-ish diet while I still see what I have, and I no longer take magnesium.   My bpm averages just under 55bpm.  My heart palpitation battle was close to 7 months before it seemed to slowly get better.

 

Again I do know if any of this is of any real help but just wanted you to know it randomly scared still scares the hell of me too!

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    • 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!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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