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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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Has anyone diagnosed with Celiac Disease and on a gluten-free diet have symptoms of peripheral neuropathy and/or vertigo just by being glutened once or a few times?   I think I was glutened by accident 5 days ago (after eating had the hallmark left-side cramp that I get when glutened).  That same day I was so extremely tired I was in bed for most of the day.  The next day when I opened my eyes, I suffered violent vertigo and vomiting.  Since then, I have vertigo when lying down in bed or when changing head position, tingling in hands and legs/feet, mild headache, dizziness when walking (I look like I'm drunk when walking), nausea, and the mild headache.  The vertigo and dizziness is driving me insane.  I went to E.R. yesterday, they did a CAT Scan of my head and couldn't find anything wrong that would be an emergency (such as a stroke).  Is it normal to have such a bad neurological reaction just by one glutened incident?  I've never had a reaction like this.

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While I am still very new, I can say while I was doing the Gluten challange, at times I felt vertigo-like symptoms. I can remember one time in a class I was taking I felt dizzy and ill so bad few hours after having lunch I had to grab my things and go home when I got up later that night to spend time with my husband I felt like I had a hang over, yet that weird tipsy feeling except I had not had any  alcholic drinks.  That is just an experience or two I can remember with myself.

Has anyone diagnosed with Celiac Disease and on a gluten-free diet have symptoms of peripheral neuropathy and/or vertigo just by being glutened once or a few times?   I think I was glutened by accident 5 days ago (after eating had the hallmark left-side cramp that I get when glutened).  That same day I was so extremely tired I was in bed for most of the day.  The next day when I opened my eyes, I suffered violent vertigo and vomiting.  Since then, I have vertigo when lying down in bed or when changing head position, tingling in hands and legs/feet, mild headache, dizziness when walking (I look like I'm drunk when walking), nausea, and the mild headache.  The vertigo and dizziness is driving me insane.  I went to E.R. yesterday, they did a CAT Scan of my head and couldn't find anything wrong that would be an emergency (such as a stroke).  Is it normal to have such a bad neurological reaction just by one glutened incident?  I've never had a reaction like this.

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While I am still very new, I can say while I was doing the Gluten challange, at times I felt vertigo-like symptoms. I can remember one time in a class I was taking I felt dizzy and ill so bad few hours after having luch I had to grab my things and go home when I got up later that night to spend time with my husband I felt like I had a hang over, yet that weird tipsy feeling except I had not had any  alcholic drinks.  That is just an experience or two I can remember with myself.

Thank you Serielda for your reply!  I guess I'm trying to make sense of all these symptoms.  I've never experienced anything like this.  Right now I'm trying to get some work done from home (as I can barely drive; turning my head makes me so dizzy) and the numbness in my hands while typing is making it almost impossible.  I feel so frustrated, to say the least.  I got glutened at a place I've always been able to eat, so one less place I can go to.  I was diagnosed much longer ago than you, but I feel so bad this week I'm super depressed. 

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Are you absolutely certain you were glutened? There are other conditions that can cause vertigo and peripheral neuropathy, like cervical spondylosis, or just compression in your cervical vertebrae. Just checking, because not everything that is wrong with us is because of gluten :)

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Are you absolutely certain you were glutened? There are other conditions that can cause vertigo and peripheral neuropathy, like cervical spondylosis, or just compression in your cervical vertebrae. Just checking, because not everything that is wrong with us is because of gluten :)

Almost 100% sure.  Had the stomach cramps and extreme tiredness immediately after eating what was supposed to be a gluten-free lunch (but who knows how it was prepared).  That's why I'm confused about all this.  These symptoms occurred at the same time as my "classic" glutened symptoms.  

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If you never had these type of symptoms prediagnosis you should strongly consider heading to your regular doctor. ERs can only check for so much and your GP can give you a full workup and a referral to a specialist if needed.  As another poster stated not everything is gluten related. This needs to be checked out, IMHO.

I hope your feeling better soon and welcome to the board. 

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Look up Gluten Ataxia.

I don't have it so I'm less familiar with it than general celiac, but when I saw the symptoms you mentioned, it is the first thing that came to mind. 

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I developed Vertigo when my Thyroid decided to go Hypo.  I fell off a stool and had to crawl up the stairs.  For me it was a quick trip to the Doctor, a couple blood tests and nausea meds.  I stayed pretty horizontal until the results the next day and started on Levothyroxine.

 

I agree with Raven, you should have it checkout independently of Celiac.

 

Colleen

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I know pre diagnosis, I had similar but not exact symptoms. A few after thoughts I have is one do you have any sinus or allergies like hay fever? I know sometimes I can feel that way due to congestion? Also have you monitored your food intake? One time I had tried to do a diet based on calorie restriction optimal nutrition based on a 1,500 calorie diet, and upon leaving the, gym I felt woozy. Turned out I was not supplementing correctly after my personal trainer viewed my dietary log. Just other ideas that could be mimicking such. Problems.

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hmm...inner ear infection comes to mind.  but you do need a workup, NOW.  good luck

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@Frieze,

That is interesting,about the ear infection thing now needing work ups. I did not know that but as having not ever had an ear infection(knocking on wood) I have been spared that unpleasantry.

 

hmm...inner ear infection comes to mind.  but you do need a workup, NOW.  good luck

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I have recently passed out, in a restaurant no less, and in a different country, for the first time ever! I have been having dizzy spells for 5-6  months prior to being diagnosed with Celiac Disease last Friday. (I have two co-workers with the Vertigo virus and have suffered and missed a lot of time from work for the past year!!)  I too, wondered if these symptoms are/were related. I still have dizzy spells and feel drunk at times. I know I stumble when I walk as people have noticed, even when I think I'm not and feel fine. My spells come on very suddenly and will last a few hours or all day and night. I can carry on with my day but am uncomfortable driving a car feeling this way. I  had a CT scan 2 months ago, with negative results. I have had very low blood pressure my whole life and will now watch carefully how I feel now that I am strictly OFF gluten!!! I hope your symptoms don't last too long without knowing what the triggers them! Good Luck, from Ontario, Canada.  

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I just wanted to chime in and say if this continues, it might be worth looking into to make sure it isn't caused by something else.

 

Last summer I was suddenly struck with a type of vertigo - my arms and legs felt odd when I walked, I felt like I was walking on a ship's deck at sea. Very anxiety inducing.  I really thought I was coming down with ataxia, it lasted months, and I could not understand why this was so, post diagnosis and after adopting a strict gluten-free diet.   Then my neck started to hurt a few weeks later. It it was at that point I began to wonder if this weird sensation was all tied up with my lifting my son above my head which only in retrospect I realised I had done just 24 hours before the vertigo struck.  I didn't even begin to make this connection until the neck pain started some weeks after the event. I then got tinnitus so was finally referred to an ENT to look into the tinnitus.  In the course of tests they discovered my neck vertebrae were badly out and I was diagnosed with Cervical Dizziness, as they call it here in the UK.  The tinnitus comes and goes and I think is unrelated, but at least it led to the Cervical Dizziness diagnosis.   Still from time to time the vertigo comes back but it is no longer 24/7.  Also, I got fizzy hands around the time of diagnosis.  I have just been diagnosed with ulnar compression after nerve tests, which I do have to say is worse for some reason after glutening but I am not sure is directly attributable.

 

It is complicated being a celiac because so many of our symptoms can be celiac - or something else!    

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@Frieze,

That is interesting,about the ear infection thing now needing work ups. I did not know that but as having not ever had an ear infection(knocking on wood) I have been spared that unpleasantry.

Sorry had a typo in there, iPad was acting nutty when first posted here, on this topic. Sorry.

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