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#1 CaliSparrow

 
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Posted 07 May 2014 - 09:47 AM

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.
  • 0
Last glutening: 12/28/13 (long time FOR ME!)
April 2014: no more reintroducing foods, not rocking the boat, no studying (except during insomnia)
March 2014: Reintroducing intolerant foods. Yolks & banana are a "no". Dairy NO
Year 2: Mental clarity improving. Hello to normalcy.
October 2013: Functional Medicine doc ref to cardiologist for possible sick sinus syndrome (deadline May)
September 2013: 55+ food intolerances, mercury poisoning, sIgA 50, leaky gut, adrenal fatigue, hormone disruption, ferritin 7, low Vit D, low Vit B6
January2013: Dairy-Free, Soy-free
November 2012: Gluten-Free
Year 1: Migraines resolved, OCD diminished, Change in skin texture, EyeBrows lifting & eyes bigger, Better memory, Better cognitive function, Better problem-solving capabilities, Lower anxiety level, Better outlook, Arrhythmia reduced, hope

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#2 Celiacandme

 
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Posted 08 May 2014 - 06:20 AM

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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#3 nvsmom

 
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Posted 08 May 2014 - 09:36 AM

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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Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

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Celiac.com - Celiac Disease Board Moderator

#4 1desperateladysaved

 
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Posted 08 May 2014 - 11:40 AM

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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#5 CaliSparrow

 
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Posted 09 May 2014 - 10:52 AM

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.
  • 0
Last glutening: 12/28/13 (long time FOR ME!)
April 2014: no more reintroducing foods, not rocking the boat, no studying (except during insomnia)
March 2014: Reintroducing intolerant foods. Yolks & banana are a "no". Dairy NO
Year 2: Mental clarity improving. Hello to normalcy.
October 2013: Functional Medicine doc ref to cardiologist for possible sick sinus syndrome (deadline May)
September 2013: 55+ food intolerances, mercury poisoning, sIgA 50, leaky gut, adrenal fatigue, hormone disruption, ferritin 7, low Vit D, low Vit B6
January2013: Dairy-Free, Soy-free
November 2012: Gluten-Free
Year 1: Migraines resolved, OCD diminished, Change in skin texture, EyeBrows lifting & eyes bigger, Better memory, Better cognitive function, Better problem-solving capabilities, Lower anxiety level, Better outlook, Arrhythmia reduced, hope

#6 CaliSparrow

 
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Posted 09 May 2014 - 11:15 AM

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.
  • 0
Last glutening: 12/28/13 (long time FOR ME!)
April 2014: no more reintroducing foods, not rocking the boat, no studying (except during insomnia)
March 2014: Reintroducing intolerant foods. Yolks & banana are a "no". Dairy NO
Year 2: Mental clarity improving. Hello to normalcy.
October 2013: Functional Medicine doc ref to cardiologist for possible sick sinus syndrome (deadline May)
September 2013: 55+ food intolerances, mercury poisoning, sIgA 50, leaky gut, adrenal fatigue, hormone disruption, ferritin 7, low Vit D, low Vit B6
January2013: Dairy-Free, Soy-free
November 2012: Gluten-Free
Year 1: Migraines resolved, OCD diminished, Change in skin texture, EyeBrows lifting & eyes bigger, Better memory, Better cognitive function, Better problem-solving capabilities, Lower anxiety level, Better outlook, Arrhythmia reduced, hope

#7 FruitEnthusiast

 
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Posted 09 May 2014 - 05:22 PM

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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Sara  :)   "This life is a test. It is only a test. If it had been an actual life, you would

                             have received further instructions on where to go and what to do"

 

"If you're going through hell, keep going" :) Winston Churchill
************************************
Histamine Intolerant  Apr 2014

N C Gluten Intolerant dx Feb 2012  Also Intolerant to Rice, Eggs, Nightshades.
Gluten-Free/ Grain-free/ only whole foods prepared at home since  March 2012
Dairy, Soy, Chocolate free since Jan 2012   Sensitive to Corn and Mold since 1995
 


#8 CaliSparrow

 
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Posted 16 May 2014 - 01:48 PM

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
  • 1
Last glutening: 12/28/13 (long time FOR ME!)
April 2014: no more reintroducing foods, not rocking the boat, no studying (except during insomnia)
March 2014: Reintroducing intolerant foods. Yolks & banana are a "no". Dairy NO
Year 2: Mental clarity improving. Hello to normalcy.
October 2013: Functional Medicine doc ref to cardiologist for possible sick sinus syndrome (deadline May)
September 2013: 55+ food intolerances, mercury poisoning, sIgA 50, leaky gut, adrenal fatigue, hormone disruption, ferritin 7, low Vit D, low Vit B6
January2013: Dairy-Free, Soy-free
November 2012: Gluten-Free
Year 1: Migraines resolved, OCD diminished, Change in skin texture, EyeBrows lifting & eyes bigger, Better memory, Better cognitive function, Better problem-solving capabilities, Lower anxiety level, Better outlook, Arrhythmia reduced, hope

#9 FruitEnthusiast

 
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Posted 16 May 2014 - 01:55 PM

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


  • 0

Sara  :)   "This life is a test. It is only a test. If it had been an actual life, you would

                             have received further instructions on where to go and what to do"

 

"If you're going through hell, keep going" :) Winston Churchill
************************************
Histamine Intolerant  Apr 2014

N C Gluten Intolerant dx Feb 2012  Also Intolerant to Rice, Eggs, Nightshades.
Gluten-Free/ Grain-free/ only whole foods prepared at home since  March 2012
Dairy, Soy, Chocolate free since Jan 2012   Sensitive to Corn and Mold since 1995
 


#10 CaliSparrow

 
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Posted 16 May 2014 - 01:58 PM

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


:)
  • 0
Last glutening: 12/28/13 (long time FOR ME!)
April 2014: no more reintroducing foods, not rocking the boat, no studying (except during insomnia)
March 2014: Reintroducing intolerant foods. Yolks & banana are a "no". Dairy NO
Year 2: Mental clarity improving. Hello to normalcy.
October 2013: Functional Medicine doc ref to cardiologist for possible sick sinus syndrome (deadline May)
September 2013: 55+ food intolerances, mercury poisoning, sIgA 50, leaky gut, adrenal fatigue, hormone disruption, ferritin 7, low Vit D, low Vit B6
January2013: Dairy-Free, Soy-free
November 2012: Gluten-Free
Year 1: Migraines resolved, OCD diminished, Change in skin texture, EyeBrows lifting & eyes bigger, Better memory, Better cognitive function, Better problem-solving capabilities, Lower anxiety level, Better outlook, Arrhythmia reduced, hope

#11 GottaSki

 
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Posted 16 May 2014 - 02:10 PM

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 ;)


  • 1

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#12 1desperateladysaved

 
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Posted 16 May 2014 - 03:08 PM

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

 

Dee


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#13 Celiacandme

 
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Posted 17 May 2014 - 05:06 PM

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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#14 nvsmom

 
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Posted 18 May 2014 - 04:59 PM

Yeah!  :)


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Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

Celiac.com - Celiac Disease Board Moderator

#15 CaliSparrow

 
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Posted 20 May 2014 - 10:11 AM

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.
  • 0
Last glutening: 12/28/13 (long time FOR ME!)
April 2014: no more reintroducing foods, not rocking the boat, no studying (except during insomnia)
March 2014: Reintroducing intolerant foods. Yolks & banana are a "no". Dairy NO
Year 2: Mental clarity improving. Hello to normalcy.
October 2013: Functional Medicine doc ref to cardiologist for possible sick sinus syndrome (deadline May)
September 2013: 55+ food intolerances, mercury poisoning, sIgA 50, leaky gut, adrenal fatigue, hormone disruption, ferritin 7, low Vit D, low Vit B6
January2013: Dairy-Free, Soy-free
November 2012: Gluten-Free
Year 1: Migraines resolved, OCD diminished, Change in skin texture, EyeBrows lifting & eyes bigger, Better memory, Better cognitive function, Better problem-solving capabilities, Lower anxiety level, Better outlook, Arrhythmia reduced, hope




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