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

JaneWhoLovesRain

Recommended Posts

JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted

Do any of you suffer from vertigo or off balace feelings as part of your celiac disease? I started having severe vertigo attacks about 4+ years ago and have been unable to get a firm diagnosis for this because while my symptoms fit some parts of all the dizzy disorders they don't fit enough of any one to give a firm diagnosis. For instance, the vertigo is severe enough that one would think I have Meniere's but my hearing is barely affected. I've had several tests and I end up with a lot of shoulder shrugging from the doctors. I have also suffered my entire life from extreme motion sickness (and not just from being in a moving vehicle, but any kind of movement can make me feel sick). I've been eating gluten-free for about 2 years and have noticed an improvement but I'm definitely not feeling 100% yet. However, I'm not 100% gluten-free either, maybe 98%.

Now I am trying to figure out if celiac might be my problem because last night I came across something I never heard of. I've had a weird rash since December, started slow on my neck but in the last couple of weeks it has spread and now I have it on my elbows, hips and backs of knees. Very symmetrical and very itchy. In trying to figure out what this is I came across dermatitis herp.... (can't remember the spelling) which really seems to fit the pattern of my rash.

BTW, my intestines seem fine, so I'm stumped!!

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

Celiac.com Sponsor (A8-M):


youwillrise Rookie
youwillrise
Posted

I don't have a celiac diagnosis as of now...but I have been experiencing vertigo and dizziness amongst all the other symptoms. I've also been prone to motion sickness since I was young, though I didn't consider that as a possible sign...hmmm...now that I think of it, though, I've considered myself a healthy person most of my life...I realize now that I have had a lot of sensitivities and intolerances that I haven't really put into perspective until recently. I've thought of them separately, but I never thought of them as being parts of a bigger issue. Hmmm

I'm sure someone more knowledgeable will chime in! Your post just made me think some more about my own history.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Do any of you suffer from vertigo or off balace feelings as part of your celiac disease? I started having severe vertigo attacks about 4+ years ago and have been unable to get a firm diagnosis for this because while my symptoms fit some parts of all the dizzy disorders they don't fit enough of any one to give a firm diagnosis. For instance, the vertigo is severe enough that one would think I have Meniere's but my hearing is barely affected. I've had several tests and I end up with a lot of shoulder shrugging from the doctors. I have also suffered my entire life from extreme motion sickness (and not just from being in a moving vehicle, but any kind of movement can make me feel sick). I've been eating gluten-free for about 2 years and have noticed an improvement but I'm definitely not feeling 100% yet. However, I'm not 100% gluten-free either, maybe 98%.

Now I am trying to figure out if celiac might be my problem because last night I came across something I never heard of. I've had a weird rash since December, started slow on my neck but in the last couple of weeks it has spread and now I have it on my elbows, hips and backs of knees. Very symmetrical and very itchy. In trying to figure out what this is I came across dermatitis herp.... (can't remember the spelling) which really seems to fit the pattern of my rash.

BTW, my intestines seem fine, so I'm stumped!!

I get dizzy and off balance from gluten. I went 100% gluten-free last July. I accidently got "glutened" and the symptoms came back stronger than ever. Some Celiacs don't get GI symptoms, and some of us get neurological AND GI issues.

The rash you are now experiencing sounds like it could be DH? If you can get in and have a biopsy, which is taken from the skin right next to the rash, you may have your DX?

AVR1962 Collaborator
AVR1962
Posted

Do any of you suffer from vertigo or off balace feelings as part of your celiac disease? I started having severe vertigo attacks about 4+ years ago and have been unable to get a firm diagnosis for this because while my symptoms fit some parts of all the dizzy disorders they don't fit enough of any one to give a firm diagnosis. For instance, the vertigo is severe enough that one would think I have Meniere's but my hearing is barely affected. I've had several tests and I end up with a lot of shoulder shrugging from the doctors. I have also suffered my entire life from extreme motion sickness (and not just from being in a moving vehicle, but any kind of movement can make me feel sick). I've been eating gluten-free for about 2 years and have noticed an improvement but I'm definitely not feeling 100% yet. However, I'm not 100% gluten-free either, maybe 98%.

Now I am trying to figure out if celiac might be my problem because last night I came across something I never heard of. I've had a weird rash since December, started slow on my neck but in the last couple of weeks it has spread and now I have it on my elbows, hips and backs of knees. Very symmetrical and very itchy. In trying to figure out what this is I came across dermatitis herp.... (can't remember the spelling) which really seems to fit the pattern of my rash.

BTW, my intestines seem fine, so I'm stumped!!

I was stumped too as my symptoms were not so much digestive initially. I was having some visual issues, very tired and then I became off balance. I could tip over if I were leaning to water a plant. Not spining in my head but more of an inability to keep myself steady. I would trip on my toes, my coordination was way off from normal. I did decide to go off gluten just to see what would happen. I tried for 3 weeks, went back to eating gluten and then is when I noticed the digestive issues. So I really cleaned up my diet, took all the gluten out, cleaned up my kitchen, cookware, etc. In 4 weeks of having no gluten all the dizzines stopped. I lived with the balance issues for 9 months.

The other issues I found too was that I was having vertigo (spinning) in reaction to other foods, however the reaction would not last as long, maybe 3 days. I kept a food journal and looked at all labels. I could not eat any gums like xanthan, caraageenan or high fructose. I also found I was lactose intolerant. Big changes at 48 and I wondered what in the world happened to me. The more I read the more I realized my intestines were a ship wreck and that's why I was haviong so many issues.

I have been gluten-free 11 months now. What I can say is it is a slow process and I at times in this I have questioned if this is really what is going on but I think I have to look at the obvious.....I have come a long way in less than a year.

I hope that helps!

YoloGx Rookie
YoloGx
Posted

I used to always wake up dizzy and had to be careful standing up from a sitting position so I would not faint. My dear bf has had the same problem, especially getting up out of bed. Sometimes even having had to crawl on the floor! My bp has always been low, and years ago I was diagnosed as having a condition where my bp would fall 30 points when I would get up. This was after I had fainted and broken 2 teeth and then fainted again and severely messed up my left foot which had caught under a stairwell.

I now don't faint anymore. It is like a miracle!!

I also have fewer problems with not being able to remember the names of things etc. etc.

I ascribe this to having gone off gluten, as well as, for me, going off high to medium salicylate foods. My bf has improved greatly too just going off the gluten.

So yes, you are not nuts. Neither are we. They call it gluten ataxia. Please be careful in the meantime; and its likely best to continue to stay off the gluten. Maybe try being 100% gluten-free?

I would meanwhile look into the rash. Sounds like DH to me. Though you never know, you could be unlucky and have a salicylate or some other allergy problem like me. The symmetry however and the locations make one think DH as the most likely cause. DH is a lot easier to diagnose by the way than classic celiac. They check the area immediately next to the rash/blisters.

Bea

deinanthe Newbie
deinanthe
Posted

Yes, vertigo is one of my main symptoms as a celiac. It is one of the ways I can tell if I've been getting into anything gluten contaminated, as the vertigo starts to come back. However, if I am 100% gluten free, I am also 100% vertigo free. If I were only 98% gluten free as you say you are, I would have vertigo all the time still. Get yourself to 100% gluten free and give yourself some time to heal, you may be pleasantly surprised to see your vertigo is gone completely.

Takala Enthusiast
Takala
Posted

For me this "vertigo" is caused by gluten ataxia. I also had other neurological symptoms which the doctors blew off or attempted to attribute to other diseases, which I then would not have, when they bothered to test me.

Most of it has resolved by sticking to a strict gluten free diet. I self diagnosed as at least gluten intolerant after the Neurologist From Hell

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

Celiac.com Sponsor (A8-M):


JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted
  • Author

Thank you all for your responses. While I don't want celiac I am kind of hoping this rash is DH and that I will then successfully go 100% gluten-free and both the rash and vertigo problems will clear up. I'm going back to the dermatologist Tuesday. My first visit a couple of weeks ago wasn't real productive. Since that time my rash has increased greatly so maybe he will actually do something about it this time.

I've been reading what I can about gluten ataxia but there doesn't seem to be a lot of info on it. Do doctors generally recognize this part of celiac or is it the sort of thing that they brush off?

Jane

IrishHeart Veteran
IrishHeart
Posted

Vertigo, among several other NASTY and persistent neuro issues, (ataxia, burning nerves, parasthesia, memory issues, muscle atrophy, etc. ) were among my symptoms of celiac.

Listen to TAKALA and insist upon that biopsy.

People with DH are celiacs, in most medical opinions. Period.

Actually, there is quite a bit written about gluten ataxia.

here you go:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

also, check the website called THE GLUTEN FILE--that person has generously complied MANY articles there.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,950
    • Most Online (within 30 mins)
      7,748
    stichael
    Newest Member
    stichael
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • 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.