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. - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Small Bowel Resection 12 inches

    2. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Small Bowel Resection 12 inches

    3. - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Small Bowel Resection 12 inches

    4. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Small Bowel Resection 12 inches

    5. - Ello posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Small Bowel Resection 12 inches

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

    • Total Members
      132,827
    • Most Online (within 30 mins)
      7,748

    ABC reno
    Newest Member
    ABC reno
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
    • Ello
      I have always eaten gluten and never stopped until my recent episode. I started more wheat products as my Dr. requested for the Tissue Transglutaminase Iga Antibody. mye result Value <1.0 Value interpretation: <15.0 Antibody not detected > or =15.0 Antibody detected I do not understand any of it. After eating all that wheat product my body exploded with all sorts of symptoms. I stop gluten ASAP. I am still in the healing process. I started having issues after my surgery. 
    • trents
      Welcome to the celic.com community @Ello! You say you had a blood test for celiac disease after eating gluten for 2 weeks. Were you gluten free before that? Had you ever been officially diagnosed with celiac disease previously? You say the result of the blood test was 1.5. Can you provide the name of the test and the reference range for negative vs. positive for the test? I ask because different labs used different reference ranges so scores without a reference range aren't very helpful.
    • Ello
      Surgery was in April 2023 due adhesions wrapped around my small bowel which caused blockage and had to be removed. Adhesions were so badly entangled that Surgeon could not cut out them, so the resection was performed. July 2025 started having severe yellow diarrhea and sometimes constipation. Just had another episode and was tested for celiac. Blood test stated 1.5 after eating gluten for 2 weeks. Lipase level was 120. Having an CT scan to check the pancreas. I have never had any issues eating gluten and now I am so fearful that I might have celiac. Has anyone had a small bowel resection? I am 65 years old. UGGH! I am still feeling bloating etc. 
×
×
  • 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.