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. - trents replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    2. - Scott Adams replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    3. - Aretaeus Cappadocia replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Dried Chickpeas

    4. - ainsleydale1700 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

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

    • Total Members
      133,434
    • Most Online (within 30 mins)
      7,748

    LexiBusch
    Newest Member
    LexiBusch
    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

    • trents
      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
    • Scott Adams
      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
    • ainsleydale1700
      Hi, could someone help me understand the result of my gene test? DQ2 (DQA1 0501/0505,DQB1 02XX): Negative DQ8 (DQA1 03XX,DQB1 0302): Negative The patient is positive for DQB1*02, one half of the DQ2 heterodimer.  The doctor said I don't have Celiac genes.  I asked him to clarify about my positive DQB1*02, and he said it's a gene unrelated to Celiac.  I have all the symptoms and my bloodwork is positive for antibodies, despite being on a gluten-free diet for the past 4 years.  He also did a biopsy but told me to continue a gluten-free diet and not eat gluten before the biopsy.  Based on the gene test and biopsy (which came back negative) he ruled out Celiac, leaving me very confused.    
×
×
  • 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.