Vertigo

[JaneWhoLovesRain]

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!!

[youwillrise]

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]

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]

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]

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]

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]

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

[JaneWhoLovesRain]

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]

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.