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Vasovegal Syncope & Celiac?

Macbre

By Macbre
in Related Issues & Disorders

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Macbre Explorer
Macbre
Posted

I have been gluten free since Dec. 2010, and have done well avoiding gluten. Prior to my diagnosis I was told I had Vasovegal Syncope. Rapid heart rate, feeling faint, diarrhea & would feel wiped out for 24 hrs. My symptoms improved, but I still experience them sometimes. Usually only after I eat (during digestion) or after getting overheated. They mainly happen at night when I'm relaxing & watching TV, but it happened today during a movie w/my kids. Had to rush from the theater to the BthRm. Does anyone else experience this after eating? I have days when my heart rate is out of rhythm and it seems to be after I have eaten something with gluten by accident. It will last for several days & then return to normal. I usually have chest pain & diff. breathing too. Does anyone else with Celiac's experience this? I just want to feel normal again & if there is something I'm eating, other than gluten, that could be causing this I would like to find out. I'm wondering if maybe I'm having a reaction to Soy or Soy Lecithin. I've never been allergic before. Prior to going gluten free I was a vegetarian & ate mainly soy products. Any ideas??

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Gfreeatx Apprentice
Gfreeatx
Posted

Hi there!

Actually I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome)six years ago and now just this past year Celiac disease so I know exactly what you are talking about fortunately or unfortunately. ;) Judging by the amount of damage to my intestines my doctors believe I've had Celiac Disease for many years and also believe this is what triggered me to have POTS. In any case, POTs basically makes you have Tachycardia a majority all of the time, I would pass out or feel like I was going to about 4-5 times a week and I had extremely low blood pressure which probably contributed to me fainting all the time. Also, I would have chest pains that would sometimes be really sharp and almost felt like something electrical was zapping me in the chest. There were other fun symptoms as well. Fortunately, most of these symptoms have gotten dramatically better since being on the gluten free diet. I notice that when I have accidently gotten glutened I can tell almost instantly as I will become tachycardic and will start to feel faint. Of course, I'll have the other tell tale signs of getting glutened hours later, but I am glad to have a good barometer to know when I've gotten glutened or cc. I don't know how long you've been gluten free, but I hope your episodes of Syncope become less and less as you heal!

Gfreeatx Apprentice
Gfreeatx
Posted

Sorry, just read that you have been gluten-free since Dec 2010. :) For me it has been since August 2010 and it took about 6 months for most of my POTs symptoms to get better.

mushroom Proficient
mushroom
Posted

Vasovagal syncope, yep, that's me. Had it for nigh on 20 years :o Knew it was associated with food, thought it was corn. Have fainted in restaurants, at parties, pretty much anywhere (couple of times on the john :o ). It took me forever to link it to gluten. And it is still linked to corn, and other foods that contain lectin, another protein fraction (present in gluten too). It has now progressed to where I get atrial fibrillation instead of vasovagal syncope, but it usually only lasts a few hours - that would be runs of tachycardia and ectopic heartbeats that "kick" against the chest wall, racing pulse, and a lot of other associated symptoms. You will see below my signature the foods I have to avoid because of this. As long as I avoid these foods I am okay (except just after the earthquake and all the aftershocks, when my adrenaline level was so high it set it off :blink: Usually happens at night after you go to bed. Your abdominal contents move around when you lie down, and bloating (for me) ends up putting pressure on the heart and lungs and sets it off. Not fun and you have my sympathies. Do you have any known problems with any other foods than gluten?

Macbre Explorer
Macbre
Posted
  • Author

Vasovagal syncope, yep, that's me. Had it for nigh on 20 years :o Knew it was associated with food, thought it was corn. Have fainted in restaurants, at parties, pretty much anywhere (couple of times on the john :o ). It took me forever to link it to gluten. And it is still linked to corn, and other foods that contain lectin, another protein fraction (present in gluten too). It has now progressed to where I get atrial fibrillation instead of vasovagal syncope, but it usually only lasts a few hours - that would be runs of tachycardia and ectopic heartbeats that "kick" against the chest wall, racing pulse, and a lot of other associated symptoms. You will see below my signature the foods I have to avoid because of this. As long as I avoid these foods I am okay (except just after the earthquake and all the aftershocks, when my adrenaline level was so high it set it off :blink: Usually happens at night after you go to bed. Your abdominal contents move around when you lie down, and bloating (for me) ends up putting pressure on the heart and lungs and sets it off. Not fun and you have my sympathies. Do you have any known problems with any other foods than gluten?

What's weird is that I never had any issues prior to 2 years ago except for the normal bloating with certain foods, but I got a severe infection that attacked my joints and had me almost bed ridden for two weeks. Several doctors later and a strong does of antibiotic I was finally able to walk again without pain. I suffered with arthritis for 1 1/2 yrs after that and noticed a change in my vision, heart, and other things (too many to mention). I was tested for lupus, RA, and many other diseases and still nothing showed. It wasn't until a routine physical that I tested positive for Celiac through blood work. I was sched. for the endoscopy, but backed out. I had already been gluten free for 6 weeks & felt so much better. I didn't want to be poked & prodded. I guess the infection triggered my symptoms and that's when I started having food allergies (would break out in hives). I was a vegetarian at the time and Soy was my main source of protein, but once I was diagnosed I started eating meat again and cut back on the soy, but haven't cut it out totally.

I'm starting to think that Soy lecithin bothers me, not sure about corn, but I'm going to keep an eye on that. After I eat chocolate that has soy lecithin in it, I get jittery and notice my heart rate picks up and gets out of rhythm and sometimes it causes the D, but not always. I've avoided it for a few days and haven't had as many issues. I only drink decaff coffee & avoid sodas. If I have caffeine I feel like my heart will jump out of my chest. Heat also triggers my syncope, and since I live in FL & our temps are already in the 80's, I'm having to be careful & stay hydrated. Can't lay out by the pool like I used too :(

What's weird is that I can go for weeks with no problem and then "boom" it hits me. Just lying down, my heart rate drops & I have to run for the bthroom. My heart is usually out of rhythm for a few days after and then levels back out. It happens even if I haven't eaten anything with Gluten so maybe it is something else I'm reacting to.

I'm even scared to go to the dentist for a crown (which I desperately need)because the Novocaine has epinephrine in it and I don't want it to effect my heart. I've never been afraid to go to the dentist until now. I had a reaction to eye dilation drops and didn't realize until after I was having severe heart palpations, dizziness & high blood pressure that it was the eye drops (they contain atropine). I won't do that again!!

Sorry to keep running on, it's just nice to know I'm not alone in this. It has been such a mystery to me for so long & now I know I'm not CRAZY!! :)

mushroom Proficient
mushroom
Posted

Oh no, you're not crazy (unless I am too). I have the problem with the novocaine too. Talk to your dentist - they have a version that doesn't have epinephrine in it. The epinephrine just helps control bleeding, it is not essential for the anesthetic effect. I always have it without epinephrine or I will be twitching all over the chair :lol: They use something else to dilate my eyes now too because I had an adverse reaction too. And I haven't had caffeine since somewhere around 1972 :o And I definitely avoid soy - it is poison to me. I have also fainted from heat :) We are a lot alike in many ways. Have you ever worn a Holter monitor for 24 hours so they can pick up what is happening with your heart? It does a 24 hr printout of what your heart is doing.

Macbre Explorer
Macbre
Posted
  • Author

Yes I did have to wear the halter monitor. I wore it once for the 24 hrs & then another time for 21 days (what a pain). I did not have a single episode during those times, but I was only eating enough food to survive because I couldn't digest it. And it was during the winter months so I didn't have the heat to trigger an episode. This was all prior to my being diagnosed. It's not as bad now as it used to be, but I'm afraid with the heat this summer that I'll start experiencing them again more frequently. I took my kids to the pool today, and within 5 mins in the heat my heart was beating faster/stronger & I had to take off for the bathroom because it triggers D. Maybe I'll move to Alaska! B)

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  • 2 years later...
cici947 Newbie
cici947
Posted

Hi - a friend of mine has vasovegal syncope which is manifested by seizures.  She has been told there is nothing she can do about it.  I have been wheat/gluten free for almost a year and have read about the mutlitude of diseases that can be caused by wheat.  As a result of this knowlegde, I have a tendency to blame wheat exposure for the symptoms of almost any disease or ailment.  That said, do you think wheat exposure could be a cause of my friend's vasovegal syncope?

GF Lover Rising Star
GF Lover
Posted

Hi - a friend of mine has vasovegal syncope which is manifested by seizures.  She has been told there is nothing she can do about it.  I have been wheat/gluten free for almost a year and have read about the mutlitude of diseases that can be caused by wheat.  As a result of this knowlegde, I have a tendency to blame wheat exposure for the symptoms of almost any disease or ailment.  That said, do you think wheat exposure could be a cause of my friend's vasovegal syncope?

CiCi, please be aware of the date of the posts/threads you are replying to.  This one is over 2 years old.

 

Thank you

 

Colleen

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