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

Strange Eye Movements And Twitches


lonewolf

Recommended Posts

lonewolf Collaborator

My 11 year old son developed some really weird eye movements (excessive blinking at times, rolling eyes to side involuntarily and twitch-like movements) a few years ago. The doctor and his teacher thought it was related to stress, since we were in the process of adopting our youngest. Other symptoms started pointing me to celiac or gluten intolerance. He has been off milk since he was a toddler.

He had blood tests (whole celiac panel) in December, which were all normal, but the pediatrician agreed that a gluten-free diet trial would be a good idea. His behavior in school and at home improved, digestive problems got a bit better and we didn't notice at the time, but his eye twitching/moving thing got better too. But he decided that I was crazy and that he was fine, so he started cheating constantly and I gave up. That was last month. Now his eye thing is getting really bad again. Other symptoms are returning too. I just ordered the Enterolab tests for gluten and the gene test. We agreed that if the tests show he is gluten sensitive then he will go back to being gluten-free. He is an intelligent 11 year old and wants "proof" that there is something wrong before he sticks to a doubly restricted diet.

Anyway, sorry to ramble, but has anyone else had this experience with their child or themselves? I've seen other people with the same eye thing and I've always wondered what caused it. Can it be related to gluten?


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



Celiac.com Sponsor (A8-M):



GFBetsy Rookie

What does he say about his eye movements? Does he notice that he's doing them? Does he feel like he "has to" do them, or do his eyes just move like that on their own? I know there may not sound like much of a distinction to you, but what I'm trying to get at is: does he feel like he is choosing to move his eyes because he really needs to move them, or does he feel like he has no control over the movements?

I ask because if he feels that he has voluntary control over the movements, but that he "needs to" move them that way, it could be an indication of OCD. Many people don't realize that OCD is an anxiety disorder - people with OCD do compulsive behaviors in order to decrease their anxiety. And, as those of us who've looked into celiac know, anxiety can definitely be caused by gluten.

Just wondering.

Nancym Enthusiast

Wow! Yes. I saw an episode of Mystery Diagnosis where a toddler had this along with things that looked like seizures. He had the involuntary eye movements. Of course, no doctor believed them until they videotaped it. It could be gluten sensitivity affecting neurological functioning.

angel-jd1 Community Regular

Stress can definately cause twitching. Also, have you looked into Tourette's?

-Jessica :rolleyes:

lonewolf Collaborator
What does he say about his eye movements? Does he notice that he's doing them? Does he feel like he "has to" do them, or do his eyes just move like that on their own? I know there may not sound like much of a distinction to you, but what I'm trying to get at is: does he feel like he is choosing to move his eyes because he really needs to move them, or does he feel like he has no control over the movements?

I ask because if he feels that he has voluntary control over the movements, but that he "needs to" move them that way, it could be an indication of OCD. Many people don't realize that OCD is an anxiety disorder - people with OCD do compulsive behaviors in order to decrease their anxiety. And, as those of us who've looked into celiac know, anxiety can definitely be caused by gluten.

Just wondering.

He can't control it and sometimes isn't even aware that he's doing it. When he is aware, he gets upset and that makes it worse. The thing that caught my attention is that he completely stopped doing it when he was gluten-free and it just started again. Once he started again we all realized that he hadn't been doing it for several months. School is out, stress is reduced and the only thing that's been different is that he's back on gluten.

GFBetsy Rookie

Lonewolf -

That sounds much more like tourette's than OCD. Which doesn't mean that it is not gluten related . . . it just means that it isn't likely to be because of anxiety. Good luck in figuring out what's wrong and what's causing it. You might also try keeping a record of how often he is doing these things and then record how often he does them once he's gluten-free again. This may be enough "proof" for him to be willing to stay on the diet.

Best Wishes!

Ursa Major Collaborator

Liz, he has some of the very same symptoms as me, and they are possibly Tourette syndrome, not OCD. I find that my tics aren't as bad since I've gone gluten-free, but always increase under stress. And the eye blinking is the only one I have absolutely no control over (most other tics I can suppress for a while, but eventually they have to come out, or my anxiety will get to where I will have a meltdown).

So, find information about TS (here is a link to start out with Open Original Shared Link , for you to find some info), and see if your son has other TS symptoms.

Ah, I see that Betsy was writing at the same time as me, and we were thinking the same thing.


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



Celiac.com Sponsor (A8-M):



lonewolf Collaborator

I had looked into Tourette's a couple of years ago. The only thing he has is his eyes. And he has some ADD behavior that went away, or at least got WAY better, when he was gluten-free. He doesn't have any other tics, shoulder movements or anything, no vocal tics or any of the other symptoms listed.

aprilh Apprentice

When I had gluten in my diet, I had wierd muscle twitches, the worst being the muscle right under my eye involuntarily twitched for months. I though it was a mineral depletion so I started taking vitamins and minerals, which only helped on occasion. Now that I am gluten free, its gone.

I would say if the gluten free helped him, you definately need to do that. Even it is an underlying issue, the gluten does not help. And he obviously has other issues with gluten.

When I accidentally ingest gluten, I get wierd muscle twitches. I feel like light is really brighter than it is and I can't concentrate. It messes with my vision and I feel like if I kept eating it, the next level would be some kind of epilepsy.

ravenwoodglass Mentor

My DD had problems similar to this and experienced whole body shudders. This was of course blown off by her doctor as they never occured 'on demand' in her office. She was experienceing minor seizure activity due to the neurological effect of gluten.

  • 3 years later...
bluebonnet Explorer

well i decided to take the gluten challenge and have been eating it for a week after not eating it for 3 1/2 months. all the gi issues are there as well as bone and joint PAIN and for the past 3 days my right eye has been twitching like crazy all day long. hopefully your son's will subside when gluten is eliminated. :)

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 HectorConvector's topic in Related Issues & Disorders
      322

      Terrible Neurological Symptoms

    2. - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

    3. - knitty kitty replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

    4. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      322

      Terrible Neurological Symptoms

    5. - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

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

    • Total Members
      133,594
    • Most Online (within 30 mins)
      7,748

    Deedeewhiteside
    Newest Member
    Deedeewhiteside
    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
      Thiamine Mononitrate is "shelf stable" and won't break down easily when exposed to heat, light and over time.  This makes it very hard for the body to absorb and utilize it.  Only thirty percent is absorbed, less is utilized because it takes additional thiamine to break it down.   Thiamine Hydrochloride is great.  Benfotiamine is wonderful, too.   Retaining water, edema, is a symptom of low thiamine.  I'd bloat up like a puffer fish.   The ingrown toenail problems I had that I attribute to Niacin deficiency and Vitamin C deficiency.  My toenails curled in and grew thick and yellow, thickened heels.  It was awful.   So glad you're going to give thiamine hydrochloride a try!   Let me know how it goes.  You may feel worse before you feel better, the thiamine paradox, but it does clear up.  It's like a car back firing if it hasn't been run for a while.   Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • Known1
      Thanks again, I'll keep pressing on.  🤞
    • knitty kitty
      @Known1, Search for "niacin flush fades the longer you use it" and "Niacin flush worse if deficient".   It takes a couple to three weeks for the body to adjust and you're at that point now, so things should improve. Riboflavin makes the neon color, which glows under black light.  If not absorbed, excreted.  Absorption of riboflavin will improve as the body starts healing the intestinal lining and villi grow back.   You could skip the multivitamin instead.  
    • HectorConvector
      The conversion factor for mg/dl and mmol/L is 18. So 5 = 90, 7 = 126, and so on. In the US, blood sugar regulations now are the same as what we use in the UK except for this difference in units. In terms of how they compare in the past, the numbers today that I quoted are stricter than they used to be. Blood sugar numbers for +1 and +2 hour postprandial are measured from the beginning of a meal in these official numbers. In regards to the thiamin supplement I have: it says it is thiamine mononitrate. I had not until now been aware there were different types (it seems I find that is the case with everything, including the magnesium I take!) and this one I have is the only one available in my local stores. I know it makes my pee smell strong when I take it which would seem to indicate my body is absorbing enough that the remainder gets ejected, but I could be wrong. Of course, I'm willing to try anything reasonable to correct this long standing condition, whatever it might be so I will try and get thiamin hydrochloride. Back on the note of diabetes (potentially) I haven't had the blood test for a while and I did notice ingrown toenail type infections a few times in the last 3 years that kept coming back. I heard that diabetes caused high urination. But eating sugar and elevated blood sugar causes the opposite in me. If I eat a lot of sugar I retain water, like big time. If I ate a bunch o sugar in the afternoon say, I can produce little enough urine that I can go over 12 hours and have nowhere near enough urine to need to void in that time or longer which seems abnormal.       
    • Known1
      @knitty kitty For me, the flushing lasts about 10 hours and not just 60-90 minutes after consuming the vitamins.  I am 10-days into taking this already.  My urine is neon colored around the clock and I drink between 1/2 to 3/4 of a gallon of water per day.  I'll stick with 2 a day for now, but am honestly quite hesitant to do so. I am curious, where are you reading "the worse the flush, the more your body needs the niacin"?  I have been searching for that, but haven't found that anywhere.  
×
×
  • 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.