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
lonewolf
Posted

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
GFBetsy
Posted

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
Nancym
Posted

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
angel-jd1
Posted

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

-Jessica :rolleyes:

lonewolf Collaborator
lonewolf
Posted
  • Author
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
GFBetsy
Posted

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
Ursa Major
Posted

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
lonewolf
Posted
  • Author

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
aprilh
Posted

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
ravenwoodglass
Posted

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
bluebonnet
Posted

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.

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. Scott Adams
      - Scott Adams replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      If a package of dried chickpeas or lentils says “may contain” or “may have been cross contaminated,” that usually means they were processed in facilities that also handle wheat, barley, or rye. The concern is not gluten dissolved on the surface like dust that can simply be rinsed away, but small fragments of gluten-containing grains that may be mixed in duri...
    2. knitty kitty
      - knitty kitty replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      Welcome, While picking through chickpeas and lentils I have found little pebbles and on occasion, a kernel or two of wheat. Farm equipment and transport trucks are used to harvest different crops. It would be really expensive to have separate trucks and packaging lines for each crop. I have found sorting or picking through the peas or lentils...
    3. trents
      - trents replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      Welcome to the celiac.com community, @Thoughtidjoin! I would think so, yes. But you need to realize that cross contamination studies with lintels have shown the real problem isn't only coming in contact with gluten containing grains in processing but in the actual mixing in of cereal grain seeds in significant quantities with the lentils. I think it...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Origins of Celiac Disease
      7

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

      I think you're reading way too much into this study--it is a large population-based study, and when they do these they aim not to focus it on a particular smaller sub-set of the population, in fact, they take measures to be sure that doesn't happen.
    5. Thoughtidjoin
      - Thoughtidjoin posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      Can I wash gluten off dried chickpeas or green lentils when the packet says “may have been cross contaminated?” Has there been any research into this? If so what are the results? If no research has been done why not? I am getting mixed advice from different sources, how serious is this or are the food manufacturer being over cautious? Many tha...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,432
    • Most Online (within 30 mins)
      7,748
    Dave162
    Newest Member
    Dave162
    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

    • Scott Adams
      Dried Chickpeas

      By Scott Adams · Posted

      If a package of dried chickpeas or lentils says “may contain” or “may have been cross contaminated,” that usually means they were processed in facilities that also handle wheat, barley, or rye. The concern is not gluten dissolved on the surface like dust that can simply be rinsed away, but small fragments of gluten-containing grains that may be mixed in during harvesting, storage, or packaging. Rinsing and sorting can reduce surface flour and remove visible stray grains, and many people do this successfully, but it does not guarantee that all gluten contamination is eliminated. Some limited testing has shown that naturally gluten-free grains and legumes can contain measurable gluten when cross-contact occurs in shared facilities, which is why manufacturers use precautionary labeling. The seriousness depends on the individual: for someone with celiac disease, even small amounts of gluten can trigger intestinal damage, so choosing certified gluten-free legumes is the safest option. Manufacturers are not necessarily being overly cautious; they are often acknowledging real cross-contact risk in complex agricultural supply chains.
    • knitty kitty
      Dried Chickpeas

      By knitty kitty · Posted

      Welcome,  While picking through chickpeas and lentils I have found little pebbles and on occasion, a kernel or two of wheat.  Farm equipment and transport trucks are used to harvest different crops.  It would be really expensive to have separate trucks and packaging lines for each crop.   I have found sorting or picking through the peas or lentils along with a good rinse sufficient to make them safe for me.  Do remember that lentils and such are high in carbohydrates.  Eating a diet high in carbs can lower thiamine B1.  Good sources of Thiamine and other B vitamins are meats.  Extra thiamine is needed for tissue repair to grow the villi back and recovery from malabsorption.  Low thiamine symptoms (gastric Beriberi) are very similar to symptoms of a glutening.  Try adding thiamine hydrochloride or Benfotiamine and see if you still react to chickpeas and lentils the same way. Supplementing with extra thiamine is safe and nontoxic.   Best wishes.
    • trents
      Dried Chickpeas

      By trents · Posted

      Welcome to the celiac.com community, @Thoughtidjoin! I would think so, yes. But you need to realize that cross contamination studies with lintels have shown the real problem isn't only coming in contact with gluten containing grains in processing but in the actual mixing in of cereal grain seeds in significant quantities with the lentils. I think it was a study done by Gluten Free Watchdog I'm thinking of but they did an actual count of the seeds in a purchased mainline food company bag of lintels and found something like 20% of the content was wheat seeds. So, you'd better do some sorting first.
    • Thoughtidjoin
      Dried Chickpeas

      By Thoughtidjoin · Posted

      Can I wash gluten off dried chickpeas or green lentils when the packet says “may have been cross contaminated?” Has there been any research into this?  If so what are the results? If no research has been done why not? I am getting mixed advice from different sources, how serious is this or are the food manufacturer being over cautious? Many thanks Catherine
    • catnapt
      Collecting all possibly related lab work?

      By catnapt · Posted

      I've got some lab work results going back to 2010, various MRIs and CT scans and ultrasounds. I discovered two things that MIGHT be of interest to the GI doc tell me what you think? one is the results to an abdominal CT scan with contrast in 2013 that includes this:  "there is some thickening seen in the second and third portions of the duodenum"    Since this CT scan was for left lower quad pain, it was not followed up on   Then in May of 2024 I saw a foot specialist for problems with my feet. Some of that pain is due to a very obvious deformity of both of my legs- the right worse than the left. The dr suggested that my symptoms sounded like an auto immune condition (???) and I thought he was nuts but he ordered some lab work- it came back negative except for a weak positive on one test HLA-B27 and there was a follow up test recommended but that was never ordered and this dr gave me a useless Rx for custom insoles which he refused to address - and my calls to his office were never returned.   At that time I was having all over joint pains, plus some numbness in my feet (also stiffness) and some burning pain in my toes- esp the big toe on the right foot (the more deformed side of my body)   The last time I was eating any appreciable amount of gluten containing foods was in the period of Nov 2024 to around sometime in the summer of 2024. I regularly ate a barley soup that I loved and had subs and pizza and toast etc. I was no longer eating wheat pasta, had already switched to brown rice pasta but otherwise I had not yet made a clear connection between what I was calling 'refined grain products' and any symptoms that I had. And the symptoms were vague and could be attributed to other things.   I was referred to a neurologist in late 2023 for symptoms  of confusion/disorientation, that included loss of balance that I attributed, in part, to the inability to feel where my feet were. Some symptoms such as high spikes in blood pressure (some close to 200 over 100! scary stuff) were later determined to be due to covid or long covid (also had loss of sense of smell and taste)    I had periods of dizziness that did NOT include any spinning sensations, it was more of a feeling of lightheadedness as if my mind would go blank- very strange, never really got any answers about that but that eventually went away so not worried about that   WHAT OTHER THINGS from my past records might be good for the GI dr to know? I had my very first Vit D test done in 2023 and it was low at 23, supplements have gotten that up in the range of adequate but values varied up and down... most recent test was Nov 2025 and it was 45ish I think. That's on a min of 5000Ius per day (there are some fortified foods I eat sometimes that have added vit D)   I thought my serum calcium ran on the low side but it turns out that the reference ranges have changed for the labs that I use- one changed their RR back around er, 2014 I think? so I have no clue how to compare the results before and after those changes   calcium has never been below normal and most of my blood work looks "normal" except during illness or other issues like if I'm in afib- blood work looks insane LOL    I don't know what to make of all this but it sure will be nice to get some answers!         
×
×
  • 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.