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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Vagus Nerve Attack
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8 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.

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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.

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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

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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 :)

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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?

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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.)

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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.

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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.

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