Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Vagus Nerve Attack
0

9 posts in this topic

I was only recently diagnosed with Celiac but had a whole bunch of symptoms leading up to what eventually became very frightening.

I had, for some time been having all the symptoms of gluten intolerance, I just hadn't related it and neither had my doctor. I was getting alarmed at how much weight I was losing and how many hours in a day I found myself sitting on a loo. I went down to 82lbs before the first big attack came.

One day I was sat on the loo as usual but suddenly felt very sick and as though I was going to faint. My stomach felt like it had a rolling full term baby in it. I ended up calling my husband who managed to steady me and put a cold cloth on my head and then as soon as it came, it went.

I got up but within seconds I found I couldn't breath. It was as though my lungs had paralyzed. I must of been able to breath a tiny bit because the ambulance took a good five minutes to get to me but I was in total panic, I thought I was going to suffocate. They got me straight onto oxigen and told me I had hyperventilated but as soon as my breathing settled I started to go into shock. I started to feel extremely cold, like I had been thrown in ice water and i was shaking uncontrollably. My lips went blue and my arms and legs felt icy cold (all the blood was obviously rushing to major organs.

Once I was stabilized a doctor came in and suggested I had COPD or a bad asthma attack and so I was sent off for tests which showed no asthma and no signs of COPD.

A week later it happened again, exactly the same way and again once the busy emergency room had stabilized me and checked my heart and lungs, they sent me home. By now I was getting really frightened and so was my husband. My doctor scanned my liver, my womb, ovaries and stomach and just kept shrugging his shoulders.

10 days later it happened again but this time a consultant came in to see me and explained I was having something called Vagus nerve attacks and he suspected it was the small intestine that was the culprit. He took some blood tests and 'BINGO' it showed up Celiac disease.

I have now been on a totally gluten free diet for 3 months and touch wood have had no sign of another attack, though the thought of having another in the future terrifies me.

I have put on 17lbs in weight and am no more a regular at the loo than anyone else!

The only thing that really upsets me is, during this period of un-diagnosis my hair really thinned out. One of the things they discovered is that I was iron anemic but that has now been remedied. I hope my crowning glory does come back but even if it doesn't, I'm so glad that I am no longer poisoning my body and that I am getting better. I suddenly feel so full of energy and that old brain fog I had, had for so long has vanished.

To date, I haven't heard of anyone else having this sort of attack but would be interested to hear if anyone has had something similar.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Maria, I just sent you a PM with some info that might help you. Go to the top right of the page and you'll see where to click to get my message.

0

Share this post


Link to post
Share on other sites

Maria, I just sent you a PM with some info that might help you. Go to the top right of the page and you'll see where to click to get my message.

Bartfull, thank you so much for this. As soon as I am able to reply to you properly I will.

Maria

0

Share this post


Link to post
Share on other sites

Maria, I too have suffered from problems with my vagus nerve. Vaso-vagal syncope from the pressure of the bloating - I always passed out briefly, knew it was coming on with ringing in the ears, dizziness, sweating, and would come to freezing colld and weak. It has now progressed to atrial fibrillation where my heart goes into abnormal rhythms when I eat anything containing specific lectins (the ones in foods in my list below).

I have been the loo route too - not knowing whether to sit on it or kneel in front of it :o:lol: I even fainted on the loo once :unsure: Fortunately I don't go that road any more :)

0

Share this post


Link to post
Share on other sites

I had a Vegas nerve attack while on the toilet just a few weeks ago, even fainted! Mushroom, is there something you have done to keep it from happening again?

0

Share this post


Link to post
Share on other sites




I had a Vegas nerve attack while on the toilet just a few weeks ago, even fainted! Mushroom, is there something you have done to keep it from happening again?

After a couple of years and a lot of research I have tracked my problem down to being caused by lectins in specific foods, in my case the lectins in corn, nightshades, soy, citrus, legumes, and gluten of course. So I have eliminated them. However, before I found the last of them my problem converted to atrial lfibrillation, and this is sometimes now set off by things other than lectins :( although lectins are the primary instigator if any creep into my food :ph34r:. I also now have problems with high altitude which can set off the a-fib. (I have moderate COPD so it could still be associated with a lack of oxygen, because I believe the bloating pressure was preventing me from oxygenating my blood properly. - I would have difficulty breathing from the bloating pressure.)

0

Share this post


Link to post
Share on other sites

I had fainting attacks for years (before being diagnosed with Celiac) and then they stopped for quite a while. I was gluten free for a while then had restart gluten for some tests. When I started going back off the gluten, I had another attack and almost passed out twice. At the same time I had, not to be too graphic, an attack of explosive bloody diarrehea. It was really scary. I'm sure it's related to something I ate. The ER doc tried to say it was from food poisoning from some fish I ate for lunch, but I really believe it was some sort of reaction from going back off the gluten. I may have been accidentally glutened or my body was just freaking out about going gluten free. Either way, it was scary.

When I had the syncope problem before, then ran all sorts of tests - EKG, EEG, Holter Monitor, CAT scan, tilt table test, etc. They never could figure out what was causing my episodes. I was put on a custom compounded medicine that seemed to help, because my attacks stopped. At the time I thought they were probably stress related. Now, seeing the link between Celiac and syncope, I think they were a combination of stress-related and gluten related. When this last attack happened, I was definitely under some major stress.

One thing that my cardiologist told me that made me feel a little less stressed was that, when you faint, your body realizes what is happening and sends adrenaline through your system. As a result, you're not out very long. The adrenaline kind of "jump starts" your body. But the adrenaline is what speeds up your heart and gives you cold sweats.

For me, I can usually feel when I'm about to faint now. I get this weird deja vu like sense and my head feels fuzzy. As a result, I've learned to stop whatever I"m doing and immediately sit down so I don't get hurt. I learned that lesson the hard way after passing out in the middle of a drug store once and while driving my car another time. Now that I know it's about to come on, I can usually prevent myself from actually passing out by pinching myself or biting my lip and trying to slow down my breathing.

Hopefully the diet will keep you from passing out any more. If you do, you might want to see a good cardiologist who has dealt with this issue. As for the hair, I have the same problem too. My is thinning terribly. Someone else on this board recommended testing for Hashimoto's Disease. I had my blood work done this morning. Also, my hair stylist recommended taking Biotin supplements. They seem to have helped me. Also, I've replaced all my shampoo/conditioner/styling products with gluten free versions. I didn't realize, but all of mine had some form of wheat in them. I figure it can't hurt.

0

Share this post


Link to post
Share on other sites

Thank you all for the replies.

Up until going onto a full gluten free diet, I often felt as though I was going to faint and can happily say that since I eliminated gluten, I don't get that feeling at all. I also used to get a lot of pins and needles in my hands and feet and that too has now passed.

I know that a 'Vagus nerve attack' can be a term for a faint but the nerve attacks I was having wasn't. I never fainted, lost consciousness once though leading up to the VN attack I had previously felt faint. My lungs just became paralyzed temporarily. The consultant who explained what was happening to me said that my Vagus nerve was getting cross wired and that can only happen through internal pain (normally the small intestine) and this confused signal to the brain causes the body to disrupt itself.

They have wanted to try and induce another attack under hospital supervision but I have refused. I know that I could be part of the research as to why this happens, I'm just too frightened, even in the best hands to risk going through this again.

Its very interesting hearing from your experiences and it would be even more interesting to understand why this happens. It just seems that celiac is so individual with its huge abundance of symptoms.

My mum, sister and her daughters have all just been tested. My sister and mum are always iron anemic and both have IBS but there tests came back negative. My niece has come back positive. My sons are refusing to be tested which is a shame.

0

Share this post


Link to post
Share on other sites

Hello All:

I came across this series of posts from as Google search on "Wheat Vagus Nerve".

I find all of your replies very interesting and would like to add mine for those searching for information but with differing symptoms.

I have struggled with the vagus nerve impact to breathing as Maria mentioned in the original post, but only an impact to breathing and nothing else.  But my symptoms were brought on not only by wheat, but also by other ingredients such as dark chocolate, probiotics, caprylic acid, mustard, fluoride in toothpaste/mouthwash just to name a few.  I found when I sat down my breathing would return to normal, but as soon I got up, the impact would return.

The impact to breathing would come 4-6 hours after ingestion and last for about the same amount of time.  At times I could not even take ten steps without having to stop, not being able to breath even moderately.  The symptoms now are decreasing in severity but not in duration.

My doctor checked my blood for celiac and results were negative. A number of chest x-rays to rule out COPD.  I am waiting on an appoint with an allergy specialist in a few weeks to see what they have to say.  Needless to say, it is difficult to maintain a healthy weight.

Thanks for your posts, and I hope my contribution is of benefit to others also.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,918
    • Total Posts
      919,627
  • Topics

  • Posts

    • Weird things people have said
      I've had people say strange things about celiac to me lately... Like someone said, "Oh I'm just a mild celiac so I don't have to worry about cross-contamination." And then someone else said that they're celiac but things have calmed down now so they can have a bit of gluten here and there. And I told my doctor that back in 2014 I thought I had been gluten free but I actually wasn't because I had been repeatedly glutening myself with an old colander. And he just looked at me like I was insane, like a colander?? Sure... I'm not crazy, right? Even if you have no symptoms you have to avoid cross-contamination because you can be doing damage internally right? You can never have 'just a bit'. And a colander is a big source of cross-contamination right?? I know all this but why do these other people not? Why does my doctor not know? So confusing and spreading misinformation... And then they look at me like *I'M* crazy.
    • fructose malabsorption and gluten intolerant
      Look up FODMAPS.   That might clarify things for you.  There really are a lot of diet recommendations so make sure you bring a list of questions regarding foods to your doctor's  and dietician's appointments.  
    • Recovery?
      Thank you for sharing those web sites. I will look at them. We have been gluten free since December so it's been a while. Once, he had a gluten free beer, the kind that they take the gluten out, and his legs felt very heavy and had a more difficult time walking. I really don't want to experiment.  Although I am very careful about what we eat, I am concerned that some of our medication could contain gluten. Is there any easier way to tell if medication has gluten. I did find a website which listed drugs and known gluten but every drug was on it or was determined to be gluten free
    • fructose malabsorption and gluten intolerant
      I don't have celiac but doctors or amazed I don't so they told me to fallow the gluten-free diet like I have it... any way I was wondering if one can have corn, corn starch if they have fructose malabsorption. I am so confused on what I can and can't have.. i have an appt next week hopefully with a dietitian... also can you have sugar free stuff since it's not sugar.. I'm reading online and I'm getting a bunch of mixed info on both. 
    • Depression / anxiety issues
      Hi all.  Still feeling the same way this past week. I'm thinking of dropping dairy starting from today, I don't know if I have a problem with it or not, but I drink 2 coffees a day with milk. I'm just constantly tired all the time, and getting trough the day is pretty hard, I noticed a couple of weeks ago that my sleep was improving but the last couple of days I have been waking up at least 3 times during the night, then when I get up in the morning it feels like I have been hit by a bus, like I haven't slept at all. I keep waking up during the night needing to drink water as I feel dehydrated, I don't know why as I drink 2-3 litres of water everyday 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,962
    • Most Online
      1,763

    Newest Member
    Ktowncaroline
    Joined