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

Visual Disturbances


Cinnamon

Recommended Posts

Cinnamon Apprentice

Before going gluten-free, my 11-year-old had numerous neurological symptoms. He had what appeared to be partial seizures, though we don't know for sure since he never had one during either of the 2 EEG's he had. He staggered at times, had slurred speech. He had terrible brain fog, couldn't remember the names of common things. He had twitching, at times, that he couldn't control. All these things went away after going gluten-free, and he's doing great overall.

But one thing that he still has is visual disturbances. He says he often sees flashing lights, either at school or when he's in bed at night. He says it's hard to explain what they look like. They only last a minute or two. Sometimes he says he sees an area of blackness that goes up and down really fast, "like if your eyebrow was twitching and going up and down really fast", is how he describes it. He'll rub his eyes and then see black areas that "look like spiders when I look at the wall." It only lasts a couple of minutes.

His regular doctor says it's probably just ocular migraines without the headache. The eye doctor says it's just nothing and lots of people get that, especially when they're tired. The neurologist said nothing about it, but just examined him and pronounced him fine.

Is it a celiac thing? Does anyone else get these kinds of things? I started giving him magnesium supplements to see if that would help, since they say it helps with migraines, though I don't think he's ever had a headache in his whole life. But apparently you can have migraines without the headache.

Does anyone have any idea what else it might be, or have a similar thing going on?


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



Celiac.com Sponsor (A8-M):



NorthernElf Enthusiast

Has the eye doctor looked for retinal detachment ? If he hasn't, make him ASAP ! My daughter has a different condition that makes her susceptible to retinal detachment and it needs to be caught early to be "fixable". Symptoms include flashes, as well as seeing floaters and a narrowing of peripheral vision. We have spoken with other people with her condition and the longer it's left the harder it is to fix, or it can even be impossible.

I get blurry vision in one eye when glutened but not when I'm gluten-free, FWIW.

JerryK Community Regular

Blurred vision and dry eyes here....that's about it.

YoloGx Rookie
Before going gluten-free, my 11-year-old had numerous neurological symptoms. He had what appeared to be partial seizures, though we don't know for sure since he never had one during either of the 2 EEG's he had. He staggered at times, had slurred speech. He had terrible brain fog, couldn't remember the names of common things. He had twitching, at times, that he couldn't control. All these things went away after going gluten-free, and he's doing great overall.

But one thing that he still has is visual disturbances. He says he often sees flashing lights, either at school or when he's in bed at night. He says it's hard to explain what they look like. They only last a minute or two. Sometimes he says he sees an area of blackness that goes up and down really fast, "like if your eyebrow was twitching and going up and down really fast", is how he describes it. He'll rub his eyes and then see black areas that "look like spiders when I look at the wall." It only lasts a couple of minutes.

His regular doctor says it's probably just ocular migraines without the headache. The eye doctor says it's just nothing and lots of people get that, especially when they're tired. The neurologist said nothing about it, but just examined him and pronounced him fine.

Is it a celiac thing? Does anyone else get these kinds of things? I started giving him magnesium supplements to see if that would help, since they say it helps with migraines, though I don't think he's ever had a headache in his whole life. But apparently you can have migraines without the headache.

Does anyone have any idea what else it might be, or have a similar thing going on?

I agree have him checked out again maybe by another eye doctor--and do continue the magnesium.

However I have had all kinds of visions and blurriness etc. which only went away after I started taking more absorpable B vitamins. Co-enzyme B's to be exact. I find Country Life to be the best for me since they are tablets without sorbitol--which most of the sublinguals have (sorbitol that is). Problem being that sorbitol often has gluten. I have low B-1, however one can have a variety of B vitamin deficiencies--its not always B-12 like the docs will try to convince you of. B-1 can affect the eyes and brain as well as the nervous system in general creating Beri Beri like symptoms.

Celiac often makes it difficult to absorb B vitamins as well as vitamin D and E, A and the essential fatty acids. I suggest he take supplements for all those things. If he can handle it, take cod liver oil and it will give not only D but also A and Omega 3's.

Additionally, taking skullcap regularly will help both soothe and strengthen the nervous system.

An important thing to do is soothe and heal the lining of the gut which no doubt got eroded from years of celiac. So taking marshmallow root and/or slippery elm caps will help with this a lot.

Taking bromelain/papain and pancreatin with food will help with digestion. And taking bromelain/papain away from food with nattokinase or serrapeptidase (these act as fibronylitic agents--you can look them up on the Internet) will help get rid of the scar tissue which has more than likely formed in his intestines---though the good news that as a child its easier to get rid of than as an adult. As a child he wouldn't need much. You can have him take the fibronyltic agents with the co-enzyme B's which for best effect should also be taken away from food. Best last at night and first thing in the morning. This cold be important to improve his absorption of basic micronutrients he needs to improve his nervous system etc.

Hope this helps!

Bea

Cinnamon Apprentice

Thanks so much, you guys. It's great to be able to get opinions from others on things. I'm definitely getting some co-enzyme B's. I was giving him regular B complex, and it seemed to help, but then I was afraid it was too much of a mega dose and stopped. He should have a second opinion, too. I just ordered some serra peptidase, so we'll see if that helps, I was reading the thread about it in another section earlier and it sounds like a good thing. Hopefully it will tone down the inflammation. I'm hoping it helps me with my thyroiod nodules and other assorted blobs of lymph, as well as help him heal. Thanks again.

Cherry Tart Apprentice

Wow - this sounds familiar! I too experienced flashing lights in my peripheral (with eyes open and worse when they were closed) and single black dots at the center of my vision path. These occurances happened in great frequencey before the gluten-free diet. They began to diminish a year after going gluten-free. However, I do get them from time-to-time when I get glutened. I too was told by a doctor that they were caused by constricting blood vessels in the optic nerve due to a migraine. Sometimes I did experience an actual headache, often times just the visual disturbance. I would suggest taking your child in for a second opinion, just for peace of mind :)

Cinnamon Apprentice

Thanks, Cherry Tart! He's only been totally gluten-free since January, so maybe it will get better with time. It's worrisome to me, but the doctors don't seem worried about it. It seems like gluten can affect every single part of our body!


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

I had this for years and it was ocular migraines. I would only get the headache a few times a year but the flashing lights were almost daily. It did go away after I had been gluten-free for a while. It sounds like you have addressed this with both his regular and eye doctors but if your still not comfortable totally it wouldn't hurt to have another eye doctor look. Gluten is a pretty nasty neurotoxin and it sounds like your son has quite a bit of neuro involvement. One thing about the brain though is it can recover especially in one so young. You will most likely be astounded with the difference in just a couple of months.

tom Contributor

I had the peripheral flashes for a while last year - strangely years after going gluten-free.

Never tracked down a cause, tho I haven't had them since - called photopsia, I believe, in my case.

My mom was having VERY strange visual disturbances when glutened - it finally convinced her to be vigilantly 100% gluten-free.

chb Rookie

I have visual disturbances that sound very similar. For me, they were the "straw that broke the camel's back" and led me to search for what the heck was wrong.

I started with the migraines in the fall of 06. My doctor described them as textbook for ocular migraines. They weren't too bad until the end of last summer. Even on the days I didn't have a full blown migraine, I would be very light sensitive and have constant flashing. The best way I can describe it is that it seems like someone has flashed a bright light in my face and I have to blink and clear away the flashes. (Kind of like the paparazzi is following me around constantly.) It is often associated with mental dullness like you descibed for your son. When I saw the neurologist at the beginning of the year, she was totally not concerned and just wanted me to take medicine to decrease my nuerologic sensitvity. It did not work that well, but what did make a HUGE difference was the gluten free trial I tried.

I have had my blood tests (high for only antigliaden IGA) and am waiting for my GI referral on the 17th. I can't wait to go gluten free and get rid of this stuff.

I hope your son continues to get better with the diet. I have not seen an eye doctor, but my regular physician and the neurologist acted like it was no big deal.

Cinnamon Apprentice

Thanks so much for your replies. I'm feeling better about this. His doctors don't think it's a big deal, either. Hopefully the longer he's gluten-free, the better it will get. I think sometimes he gets glutened at school with all the crumbs.

Thanks for sharing your experiences!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748

    LowellFrancis
    Newest Member
    LowellFrancis
    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

    • Rogol72
      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.