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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Vertigo And Gluten Connection
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glutengal    1

I was just wondering about the possible connection between vertigo and the consumption of gluten. I was gluten free for a year and was not diagnosed as celiac but because my daughter is gluten intolerant decided to go gluten free along with her. Well, the short of it is, I went back on gluten about 2 months or so ago and in the last month have had vertigo. Mainly hits in the morning when getting out of bed or turning in a particular position (room spins). Throughout the rest of the day I mainly have this weird sensation in my head just enough to be noticeable kind of a floaty or lightheaded feeling. Just wondering if this could be related to gluten as I never had vertigo before being gluten free for a year.

Thanks

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BRUMI1968    7

It might be related, but it might not.

I got bad vertigo a couple years ago. Just out of nowhere (typically how it comes on) I turned over in bed to get a glass of water and the whole world tipped around and started spinning. Whoa, I thought. Thinking it was over, I got up to go to the bathroom and as soon as I started to lower myself down (I'm a lady, after all) I lost my balance and had to put my hand out on the wall to make it the toilet w/o falling over. Getting up was the same way. This went on, getting fewer and fewer attacks, for a couple days. Then I felt weird for a long time. Then I got the vertigo again, etc.

I do believe I have BPPV (Benign Paroximal P..... Vertigo) which is an inner ear thing. It could be a coincidence with you that it started up with gluten again....but it might not be, as vertigo can come on from more things than BPPV. You should go gluten-free again and see if it goes away. It took me WEEKS if not over a month to get rid of the weird feeling you're talking about in your head. Every time I walked through library aisles or whatever it was worse (aisles of tall narrow places) and walking through doors or tunnels. Then you also get the fear of another vertigo attack. My stomach did not get upset; some folks do get that; but nonetheless, I lived in fear for a while. I ended up getting the whole thing again a few months later, and the recovery was very similar. Now it's been almost a year. I hope I don't get it again, but who can say. I only just started allowing myself to lay on one side in bed (usually one side is stronger for bringing on the vertigo than the other). Yuck. Vertigo. Just wrong wrong wrong. And it's so hard to explain to anyone how disconcerting it is.

Take care and good luck.

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glutengal    1

It might be related, but it might not.

I got bad vertigo a couple years ago. Just out of nowhere (typically how it comes on) I turned over in bed to get a glass of water and the whole world tipped around and started spinning. Whoa, I thought. Thinking it was over, I got up to go to the bathroom and as soon as I started to lower myself down (I'm a lady, after all) I lost my balance and had to put my hand out on the wall to make it the toilet w/o falling over. Getting up was the same way. This went on, getting fewer and fewer attacks, for a couple days. Then I felt weird for a long time. Then I got the vertigo again, etc.

I do believe I have BPPV (Benign Paroximal P..... Vertigo) which is an inner ear thing. It could be a coincidence with you that it started up with gluten again....but it might not be, as vertigo can come on from more things than BPPV. You should go gluten-free again and see if it goes away. It took me WEEKS if not over a month to get rid of the weird feeling you're talking about in your head. Every time I walked through library aisles or whatever it was worse (aisles of tall narrow places) and walking through doors or tunnels. Then you also get the fear of another vertigo attack. My stomach did not get upset; some folks do get that; but nonetheless, I lived in fear for a while. I ended up getting the whole thing again a few months later, and the recovery was very similar. Now it's been almost a year. I hope I don't get it again, but who can say. I only just started allowing myself to lay on one side in bed (usually one side is stronger for bringing on the vertigo than the other). Yuck. Vertigo. Just wrong wrong wrong. And it's so hard to explain to anyone how disconcerting it is.

Take care and good luck.

Thank you for your reply and I may try going gluten free again to see what happens. In the mean time I have an appt. with ENT in Sept. and will see what they have to say.

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SGWhiskers    45

Look into Gluten Ataxia. I'm not 100%sure, but I believe vertigo is one of the symptoms of gluten ataxia. I know clumsiness is.

Vertigo is one of my "just got glutened" symptoms, but not as bad as before diagnosis.

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glutengal    1

Look into Gluten Ataxia. I'm not 100%sure, but I believe vertigo is one of the symptoms of gluten ataxia. I know clumsiness is.

Vertigo is one of my "just got glutened" symptoms, but not as bad as before diagnosis.

Thank you very much for the information and I will definitely look into it. What exactly is it?

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ravenwoodglass    1,218

Thank you very much for the information and I will definitely look into it. What exactly is it?

With gluten ataxia the antibodies are attacking the brain. It leads to problems with balance. It can make walking difficult and make it hard to know where your body is in the space around you. Kind of hard to explain. I used to have vertigo upon rising from bed or standing up but I think some of that was due to the very low blood pressure that I had pregluten free. I still have issues with ataxia when I get glutened. Sometimes the room will spin and it feels like I am falling but my body isn't. It is one of the first signs I have that I have gotten gluten. If your recent readdition of gluten to your diet is causing this stopping the gluten should resolve it. If it is the positional vertigo your ENT can do specific manuvers with your head that should relieve it.

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Reba32    41

I had unexplained vertigo for a while, and it went away when I started the Atkins diet (which in the first phases is gluten free). I did a gluten challenge for 8 weeks last fall, and within less than a week, the vertigo was back. After my diagnosis and going back to gluten free, the vertigo is gone again.

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glutengal    1

I had unexplained vertigo for a while, and it went away when I started the Atkins diet (which in the first phases is gluten free). I did a gluten challenge for 8 weeks last fall, and within less than a week, the vertigo was back. After my diagnosis and going back to gluten free, the vertigo is gone again.

Ravenwood and Reba thanks so much for your replies. It is much appreciated and I will try gluten free again to see what happens.

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BRUMI1968    7

Just a quick additional note. I have not had vertigo proper for a while now, but I do still get a sort of strange feeling like my vision is not quite right, I'm not totally balanced, slightly lightheaded etc. Last month I remember telling myself, hey, it's right around your period and you feel this again - watch for it next month. Sure enough, period came and feel slightly dizzy and strange. So that is something to consider as well. I don't think I'm getting glutened - had myself tested some time ago for antibodies and it looked like I was clean.

Anyway, just another sidenote. I'm going to look into the ataxia thing too, though. I definitely feel I have something neuro going on, but don't have the insurance to have it checked out. Taking iron helped it, and B12 helped it, but nothing seems to quite cure it.

Good luck.

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gf_soph    36

You've had some good suggestions already, and it sure sounds like it could be a direct gluten rection. However, I thought I'd mention that it could be useful to have your B12 and iron levels checked as what you are describing sounds a lot like how I feel when I am B12 deficient - things spinning, worse when moving about, general weird feeling. I used to decribe it like a mild out of body experience, like I was perceiving things from about 5 cm above my own body. The iron also leads to the general off feeling for me, and my eyesight can grey out when getting up from a chair or bed.

If you get the B12 checked, make sure you get your exact level and reference range, as the usual lab ranges are often too low. If you get iron checked, make sure they test your ferratin as well, which is your stored iron.

Hope you feel better soon :)

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glutengal    1

Thanks so much for all your responses, they are greatly appreciated.

Bully4You- My period has not been regular for about 3 years now. I go maybe 2-4 months without one and then it

comes. I have mentioned it to my GP and she just says I am at the age of possible perimenopause and brushes it off. I guess it is possible there could be some connection but don't really think so. I had a period about 2 months ago and none this month. Don't seem to notice the vertigo is at all associated with this. Never had problems with cramps, pms or heavy periods, they are always a fairly medium flow.

gf_soph- The B-12 is something I will mention to my GP as my father has taken B-12 injection for several years now.

P.S.- I also have hypothyroid and was just diagnosed with a vitamin D deficiency a couple months ago.

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Reba32    41

If you have Celiac disease, you likely have more than just vit D deficiency! With the malabsorption that comes along with Celiac, you are likely dificient in pretty much everything. I had all mine tested right after my Celiac dx and *everything* was really low.

I also find that when I get low on sodium I get dizzy. A home-made "sport" drink usually does the trick. 1 litre of water, 3 tablespoons lemon juice (or squeeze half a lemon) and 1/4 tsp of sea salt.

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ravenwoodglass    1,218

The B-12 is something I will mention to my GP as my father has taken B-12 injection for several years now.

I would suggest that you urge your father to get tested for celiac.

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BRUMI1968    7

On B12 - a sublingual is just as effective as injections, at least the one I was taking. I as borderline deficient two years ago; then a year ago, after pounding some B12 for about 2 or 3 months, I was WAY OVER...and this was from taking sublinguals. They were called PERQUE I think, but anyway, I was glad to know they were working!

(I am working on anemia right now, and don't know if that was a contributing factor to the weird feelings I was getting - but I am getting much better on the anemia since I quit drinking tea w/i two hours of drinking, and starting eating red meat - veggie for 20 years!)

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glutengal    1

I would suggest that you urge your father to get tested for celiac.

I have suggested it but think it is on deaf ears as he was also diagnosed with non-hodgkins lymphoma mantel cell about 3 years ago (in remission right now)but they say it is most likely to recurr with this type. I mentioned to he and my mother to be tested for celiac because of the relation between non-hodgkins and also B-12 and he also just recently (as well as my mother recently)was found to be vitamin D deficient. He is a very stubborn person and it is very difficult to get him to listen to anyone. Just last week he had sudden terrible stomach pains and was very constipated and tried to relieve the constipation with a vegetable laxative and an enema and the next morning was still in horrible pain. He went to his GP and the GP sent him straight to the emergency room because he thought my father had a possible bowel obstruction. At the emergency room they thought the same thing and sent him immediately for a CT scan. They were totally shocked to find out he actually had an acute ruptured appendictis and if he had not gotten to the hospital when he did they said he probably would have died very soon. Soooo scary. I had mine out at 18 and they said mine was close to rupturing.

I hope he will reconsider the test for celiac but I don't really think he will.

Thanks for the suggestion.

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notme!    287

i had vertigo a few years back. it was so bad i went to the emergency room. (panic attack) couldn't drive for like a month. ENT said it was partly allergies and partly because of my inner ear.. i did head exercises and got on allergy meds. i still have balance issues and wow if that would clear up being gluten-free maybe i could dance again. not like i was a great dancer but it was fun. as of now, i am too afraid of falling :(

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glutengal    1

i had vertigo a few years back. it was so bad i went to the emergency room. (panic attack) couldn't drive for like a month. ENT said it was partly allergies and partly because of my inner ear.. i did head exercises and got on allergy meds. i still have balance issues and wow if that would clear up being gluten-free maybe i could dance again. not like i was a great dancer but it was fun. as of now, i am too afraid of falling :(

I understand the feeling of being scared of falling. I was scared to drive also and it has taken a while to get the courage up to try it. So far so good.....

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notme!    287

I understand the feeling of being scared of falling. I was scared to drive also and it has taken a while to get the courage up to try it. So far so good.....

well, let's see if it will go away!! my sense of smell is coming back (i can never smell anything - a blessing sometimes, i suppose! lol!) and i am hoping as i heal my allergies will also go :) so many things i believe are related to pesky poison gluten that i have developed over the years. so gradually and seemingly unrelated it's soooo sneaky...

then, we'll go dancing!!

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Takala    413

If you are gluten intolerant or celiac, and go off of it for a long time, when you re introduce it, you may notice that you have become more sensitive to some of the side effects.

With your daughter being gluten intolerant, that means she had to have inherited the genes predisposing her to it from at least one parent.... that and your low thyroid and low vitamin D, and this new symptom, sounds like you may be be wanting get tested for the celiac blood antibodies while you're still on it, and/or the genetic test if you want a diagnosis.... it seems we people with the gluten intolerance symptoms who aren't classic at wasting away just can't get no respect ..... I went for about a decade with the ataxia and other neurological symptoms, until I had my brain scanned, and the neuro Dr. STILL could not and would not connect the brain lesions with being gluten intolerant because she was insisting at that point I was a head case - because she had deliberately misdiagnosed something else, too- well yeah, actually I did have a head interior that was messed up, but with an actual physical cause that they missed, along with an ongoing and permanent c spine blown disc problem that's related, because of bone loss and bone spurs and some stenosis.

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glutengal    1

If you are gluten intolerant or celiac, and go off of it for a long time, when you re introduce it, you may notice that you have become more sensitive to some of the side effects.

With your daughter being gluten intolerant, that means she had to have inherited the genes predisposing her to it from at least one parent.... that and your low thyroid and low vitamin D, and this new symptom, sounds like you may be be wanting get tested for the celiac blood antibodies while you're still on it, and/or the genetic test if you want a diagnosis.... it seems we people with the gluten intolerance symptoms who aren't classic at wasting away just can't get no respect ..... I went for about a decade with the ataxia and other neurological symptoms, until I had my brain scanned, and the neuro Dr. STILL could not and would not connect the brain lesions with being gluten intolerant because she was insisting at that point I was a head case - because she had deliberately misdiagnosed something else, too- well yeah, actually I did have a head interior that was messed up, but with an actual physical cause that they missed, along with an ongoing and permanent c spine blown disc problem that's related, because of bone loss and bone spurs and some stenosis.

Thank you for your input and yes I am looking in to being tested for celiac but being that I went back to eating gluten I am trying to wait at least 3 mths. to hopefully get accurate results with a gluten challenge. Not to bad at this point. I hope I can deal with it for long enough. If not I will go back off gluten without a definitive diagnosis. I am also trying to get my dad to be tested as his medical history suggest the possibility he is celiac also. My daughter also just got diagnosed a month ago with Eosinophilic Esophagitis and the doctor wants her to eliminate the 8 major food allergens. Whoo Hoo!!! What a treat. Is there anything else? Let's hope not. She has already been through so much in her 26 years, starting with a brain tumor at 6 years old. Then lost her hearing and now has a cochlear implant.

Thanks all for letting me vent. This forum is great and everyone is so helpful and informative.

Best of health to you all.

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Molly Stone    0

I hope that I'm doing this correctly. I have just had the blood test for gulten and it was positive. I am now going to have the bio done just to confirm. I am 60f and I have never had any symptoms that I know that were Celiac. 16 years ago I had a bad fall and had Vertigo which lasted for 5 months. Mid Dec. I started having Vertigo again. My ENT said it was my sinius's and Middle Ear. My Mother had Celiac, and I have been on a Gulten free diet on and off all mt life.Except when I lived in Europe from 1976 till 1990 where I ate tons on wheat. This winter I have been eating allot of Oatmeal, but very little wheat. So I guess I need to wait and see what the bio says. It could be that I since I have been on a Gulten free diet that my symptoms never developed. All I know is that Vertigo is a drag, if it will clear up by not eating Gluten then that would be wonderful. Can Celiac develop or show up when your in your 60's? I also had a bad fall in August 2011 and fractured my T 12. So my body has been going through allot. Could my Celiac be trauma related?

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eatmeat4good    313

Yes, it can show up at any time.

Yours may have been in say "remission" during the times you were gluten free.

There are some Celiacs who have silent symptoms yet they are Celiac all their life.

There is also research to show that there is often a "triggering event" like a stressful or traumatic situation.

Celiac is genetic, but it takes a triggering event for some people to develop the disease.

Either way, you may be feeling better soon as you go gluten free.

There are some people who have had vertigo resolve when going gluten free.

Neurological symptoms are very common. Read about gluten ataxia and consider whether it may have been the cause of your fall and vertigo.

Welcome to being one of us.

It's quite a ride your first year. But you do get to watch yourself age backwards as you re-claim your health.

Eat mostly whole foods and learn about trace gluten and cross contamination.

Ask away, everyone here is very helpful.

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