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

Occasionally Feel Like I'm Going To Fall Over?

amberlynn

By amberlynn
in Coping with Celiac Disease

 Share

Recommended Posts

amberlynn Contributor
amberlynn
Posted

So, I don't know what this is called, but every now and then I feel like my brain has lost contact with the rest of me and I might fall down. Not really dizzy, nothing else is wrong, I just feel like I'm completely out of balance.

Just now, sitting in the chair, it felt like I was falling to the left (its always the left!), though I hadn't moved at all. My vision seems like its slipping, but the rest of me is fine?

I've been gluten-free for 2 months now (2 and a half??), and I'm as careful as I can be - because I hate the way my body seizes up on me when I've gotten gluten.

Is this normal?? Will it go away? It isn't something that happened when I was 'on gluten', if YKWIM...

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

Celiac.com Sponsor (A8-M):


Wolicki Enthusiast
Wolicki
Posted

I am not certain, but this sounds a bit like gluten ataxia. Put that in the search engine on the site. There are lots of posts on it. I guess it is pretty common to develop neuro issues after going gluten-free. I did, with neuropathy. I never had it before I started the diet. Doesn't make sense to me, but many others have noticed the same thing.

GFinDC Veteran
GFinDC
Posted

For a while I had episodes where I would start to fall over sitting at my computer. I would be working and suddenly catch myself falling over/blacking out. Later these got less severe and I would notice kind of a rushing noise in my ears and feel sort of weak. I think this was caused by periodic low blood pressure but not sure. Doctors didn't find anything. Eventually I started taking a thyroid supplement and stopped drinking coffee and tea. Those things helped quite a bit. Then I found that one of my vitamins had an effect on me. I stopped it and slowly got much better. Now I only get these passing out episodes rarely and not as severely as before. I even stopped taking the thyroid pills although it took me a couple weeks to adjust to not having them.

I went back on my elimination diet to find the vitamin issue. I suggest you consider that also as it might help.

TrillumHunter Enthusiast
TrillumHunter
Posted

Have you been test for vitamin deficiencies? I would think b12 in particular.

That weird, "I'm not in my body, but it's moving" has a name but I can't ever remember it. It isn't vertigo because you aren't spinning. B12 cured that for me.

I'll know what you're talking about. It's a disturbing feeling.

Lisa Mentor
Lisa
Posted
Have you been test for vitamin deficiencies? I would think b12 in particular.

That weird, "I'm not in my body, but it's moving" has a name but I can't ever remember it. It isn't vertigo because you aren't spinning. B12 cured that for me.

I'll know what you're talking about. It's a disturbing feeling.

Yes, I agree. Do have a full metabolic panel done. My b-12 was very low in conjunction with other things. I could not walk a straight line. B-12 injections, once a week for a month, then once a month for six, and a good balanced diet ofter healing...made it go away.

amberlynn Contributor
amberlynn
Posted
  • Author

They did a full panel a week after I went gluten-free, and everything came back fine. I take Kirkman's prenatal vitamins (cause I have a million of them, lol).

I have NEVER been able to walk a straight line without concentrating on it (and my husband has always commented on it). So weird.

tarnalberry Community Regular
tarnalberry
Posted

If you haven't specifically worked with your doctors on this one, I would HIGHLY recommend it. You might start with a GP, but if you can self-refer, you might just start with a neurologist. It could be something as simple as crystals in the ear canal (they screw with balance/dizziness), but it might not be.

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

Celiac.com Sponsor (A8-M):


TrillumHunter Enthusiast
TrillumHunter
Posted

You could see and ENT to check for ear related balance issues. I went that route before a neurologist found the b12 deficiency. The test for inner ear is very uncomfortable. They blast your ears with warm and then icy water. They try to make you dizzy. I came very close to puking.

Keep trying! It does have a source, I'm sure.

Swimmr Contributor
Swimmr
Posted

I will be looking into this for myself soon too!

I had been corresponding with someone who suffers in the same fashion.

I am hoping it's ear related (due to a history of severe/chronic ear infections).

Swimmr Contributor
Swimmr
Posted
They blast your ears with warm and then icy water.

OMG! :o

ang1e0251 Contributor
ang1e0251
Posted

Has anyone ever tried ear candles? Are they effective for this type of problem? I'm curious about them and how they work and what they actually work.

carsondcat Newbie
carsondcat
Posted
Has anyone ever tried ear candles? Are they effective for this type of problem? I'm curious about them and how they work and what they actually work.

I haven't but i have a friend who swears by them, she uses them to unblock her ears when they become plugged with wax. you lie down with head to one side popin the candle (it's hollow) light the end furthest away from your head and stay with the candle in you ear until it burns down, it's not fiercely burning quite innocuous to watch, but it's not recommended to do it on your own for safety reasons.

chiroptera Apprentice
chiroptera
Posted

WOW Sounds like a "big episode" I had in the Spring, about 2 months before going gluten free. I had been standing for about an hour ironing, stopped, called my mom on the phone (as I was still standing) and all of a sudden I told her, OMG, I feel like I'm falling, I AM, and I gently fell to the floor on my left side all the while talking. I never ever passed out, just fell over. Of course she flipped out, came flying over to my house and by that time ( about 5 mins) I"m sitting up worried my 4 year old is playing with scissors or eating dog food :(

So I called my doctor's office and they talked to me about low blood pressure, low blood sugar (both of which can lead to problems.) I spent months using a glucose monitor and my numbers were never that bad ( high or low). Now I do have real low blood pressure.

My doctor explained that sometimes when you stand for long periods ( or sit a certain way without moving your legs much ) blood can pull in "one spot" or something of that nature and you fall over. She was not very concerned as I am 100 percent I did not black out!!

I know that there is a condition called Orthostotic Hypotension where you just can't stand long. Don't know if you are familiar with The Wiggles, kid performances, but if so, that's why Greg (yellow shirt cute one) left.

I really think I had/have that BUT (and your post really got me thinking) I have NOT had ANY issues since going gluten free in June.

Very Interesting! OH, also sometimes your sodium can get too low and I have this tendency and that can cause issues as well......my doctor since I have low blood pressure it is very important to eat salt, esp if I crave it. Total opposite of what most people are told I know.

Good Luck! It is a very scary feeling, at least it was for me. And sometimes I would feel like that while I was driving and would have to pull over.

  • 9 years later...
Malika Griffith Newbie
Malika Griffith
Posted
(edited)

I do have similar experience, about an half HR ago I was in the yard standing, I suddenly felt as though I'm gonna toppled over twice..it's not the first time I felt that way...I would kind of tumble or get off balance but i do not fall

Edited by Malika Griffith
Word misspelled
  • 10 months later...
DJFL77I Experienced
DJFL77I
Posted

bump.. feel dizzy always

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing

  • 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. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    2. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result. I am interested to know, is your gastroenterologist concerned? Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous...
    3. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    4. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    5. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,192
    • Most Online (within 30 mins)
      7,748
    DenisC
    Newest Member
    DenisC
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.