Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748

    Jamie0230
    Newest Member
    Jamie0230
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...