Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Vertigo And Gluten Connection


glutengal

Recommended Posts

glutengal Contributor

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



BRUMI1968 Collaborator

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.

glutengal Contributor

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.

  • 1 month later...
undiagnosedillness Newbie

I've also developed Vertigo the past two years I wonder if gluten is the answer ?? I'll keep you posted and see in maybe 6 months time if it's made any difference.

Good luck at the Doctors :)

Sammy

SGWhiskers Collaborator

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.

glutengal Contributor

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?

ravenwoodglass Mentor

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Reba32 Rookie

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.

glutengal Contributor

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.

BRUMI1968 Collaborator

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.

gf-soph Apprentice

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 :)

glutengal Contributor

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.

Reba32 Rookie

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.

ravenwoodglass Mentor

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.

BRUMI1968 Collaborator

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!)

glutengal Contributor

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.

notme Experienced

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 :(

glutengal Contributor

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.....

notme Experienced

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!!

Takala Enthusiast

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.

glutengal Contributor

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.

  • 1 year later...
Molly Stone Newbie

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?

eatmeat4good Enthusiast

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    dnamutant
    Newest Member
    dnamutant
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.