Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
      130,534
    • Most Online (within 30 mins)
      7,748
    Barbx4
    Newest Member
    Barbx4
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Fabrizio
      Kan-101

      By Fabrizio · Posted

      Thanks for your article. 
    • NCalvo822
      Newly Diagnosed

      By NCalvo822 · Posted

      Thank you.  Very helpful.
    • knitty kitty
      Newly Diagnosed

      By knitty kitty · Posted

      Migraines can be caused by Thiamine deficiency.  Thiamine is a B vitamin that becomes depleted quickly because it can't be stored long.  All the  B vitamins work together to make energy, ATP, which is used to fuel all the cell activity.  Without Thiamine, the energy production cycle doesn't even get started.   There's studies done on mice showing thiamine deficiency affects the offspring of thiamine deficient mothers and fathers.  The offspring have fewer thiamine receptors and are prone to becoming thiamine insufficient quickly.  They have a higher metabolic need for thiamine.  Supplementing with extra thiamine helped them  tremendously. Migraines have run in my family for several generations, too.  Once I started taking TTFD, a form of thiamine that can enter cells without using thiamine transporters, my migraines have vanished.  TTFD is tetrahydrofurfuryl disulfide. Benfotiamine is another form that can improve migraine frequency, too. Thiamine is safe and nontoxic even in high doses.  There is no upper limit because thiamine has never caused a death even in high doses.  It is excreted via kidneys if not needed or not absorbed.
    • knitty kitty
      Lymphocytic Colitis with Celiac

      By knitty kitty · Posted

      Thank you, @Oldturdle, I greatly appreciate that.  I've always been a curious kitty.  I wanted to figure out why I didn't feel well because I knew it wasn't all in my head like they told me.  It pleases me to be able to help others in the same boat. Yes, alcohol prevents the absorption of thiamine and stops thiamine from working properly.  This can lead to Wernicke's Encephalopathy and Korsakoff syndrome, where thiamine deficiency severely affects brain function.  Doctors are trained to look for the triad of symptoms: opthalmoplegia (nystagmus), ataxia, and altered mental state.  However, not all people present with all three symptoms.  Many (80%) don't get diagnosed until their autopsy.   Alcohol has to be processed through the liver.  If there's insufficient thiamine, Alcoholic Fatty Liver develops.  In thiamine insufficiency, calories are turned into fat and stored in the liver instead of being turned into fuel ATP for the body.  Alcohol also prevents absorption of calories from food and other nutrients.   Non-alcoholic Fatty Liver can develop in nonalcoholics, storing excess calories as fat in the liver.  However, excess calories can also be turned into fat and stored in the abdomen, hence the increase in obesity.   In Celiac disease, we don't absorb sufficient nutrients like thiamine from our food.  If we eat a diet high in carbohydrates, we can run out of vitamins like thiamine and the other Bs needed to turn those calories into fuel ATP.  For every extra thousand calories of carbohydrates consumed, our bodies require 500 to 1000 mg of additional thiamine to process them into fuel, ATP,  the "bitcoin" of energy in our bodies.   Wernicke's encephalopathy can occur in non-alcoholic people, but doctors can miss the symptoms because the patient doesn't drink, and doesn't have all three symptoms of the classic Triad of symptoms seen in Wernicke-Korsakoff syndrome.  My doctors failed to diagnose me with thiamine deficiency, Wernicke's Encephalopathy,  because I didn't drink alcohol, although I had ataxia and an altered mental state.   Doctors don't think outside the box!   I went home and took thiamine.  I had improvement in my symptoms within an hour.  High doses of thiamine are required to correct Thiamine deficiency.  Thank God I had studied nutrition, microbiology, and the research of Dr. Derrick Lonsdale and Dr. Chandler Marrs.  ("Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition" is Drs. Lonsdale and Marrs' book.).  And I've kept learning and sharing that knowledge to help others.   It's wonderful you've been supplementing with vitamins so long!  Don't worry about the bright yellow urine.  That's excess Riboflavin B 2.  Interesting note, Riboflavin glows under black light!  Those lights used to detect where pets have soiled outside of the box, that's the Riboflavin in urine glowing.  Riboflavin can be put in sugar syrup when making rock candy and it will glow under black light.  Fun for Halloween. I hope you feel better, @Oldturdle.  If I can be of further help anytime, you can send a personal message here.  Thanks for reading my posts.  P.S. Thiamine deficiency and Wernicke's Encephalopathy are completely reversible if treated promptly with high dose Thiamine.
    • DebJ14
      Newly Diagnosed

      By DebJ14 · Posted

      Migraines ran in my family, on my father's side.  All of my female first cousins on that side, and our grandmother suffered from Migraines.  Grandmother died in 1984 so we do not know if she ever would have been diagnosed with celiac disease. However, all 4 of us cousins were diagnosed with celiac disease between 2003 and 2007.  The dermatitis herpetiformis rash is a blistery, super itchy rash.  When they do the biopsy they take it from non-involved skin that is next to the rash.  If done wrong, the results may not be accurate.  Have you ever had one done? In that case, I agree that maybe she has you still on gluten for a biopsy.  But, if she has not ordered it nor referred you to a gastroenterologist, then I would question her advice.  
×
×
  • Create New...