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

Corneal Damage From Contact Lenses & Solutions


emsimm

Recommended Posts

emsimm Newbie

I have been diagnosed with Celiacs, gluten-free and Soy Free (I have an intolerance) for a little over 6 months.

Just got back from the eye doctor for a visit that surprised me. Though there are some other threads on this forum dedicated to topics like contact solutions, etc, I wanted to start another dedicated solely to the topic of contact lens issues (intolerance, etc).

I thought that I had scratched my cornea in my right eye (hiking or via a collision with a friend's pooch), but it turns out that my contact lenses have been suffocating my eyes for some time now. My corneas have literally been starved for air and moisture and the contact solution I was using (Opti Free Express - recommended for a Toric Lens wearer like myself) is contributing severe irritation. I have an astigmatism and wear special toric lenses as a result. My doctor says that in order to survive, my cornea is growing blood vessels. There are pock marks around and on the cornea. This causes hyper-sensitivity to light, air, etc. Thankfully, we caught it.

I have been ordered to stop using contacts until I get the all-clear - could be weeks, could be months. I am also advised to switch to a hydrogen peroxide-based lens solution once I go back to contacts to avoid all of the chemicals in other solutions. Right now, I'm in a lot of pain and discomfort, am sensitive to light, and not looking forward to a summer filled with hiking, swimming, etc. while wearing glasses. But such is life! And it could be worse!

Has anyone had similar issues? I didn't consider possible issues with contact lens solution, so I'm interested to hear if others have had similar diagnoses like corneal damage.

Notably, my doctor told me to be patient, to which I replied 'I have honed that skill via my dealing with Celiacs'. He seemed surprised to hear that I was a Celiac. I did ask him directly whether or not there might be chemicals in contact solution derived from verboten grains or soy, but he wasn't sure. He did say that it would be very difficult to comment on any kind of correlation between the issues I was having with my eyes and Celiacs because a) frequency of Celiac patients in an Opth. office and B) lack of self-reporting of Celiacs to Opth.'s would complicate the ability to determine some kind of correlation.

Thanks for your help fellow intolerants! :)

Emily in Philadelphia


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



Celiac.com Sponsor (A8-M):



Roda Rising Star

Could you have sjogren's syndrome? It is an autoimmune disease that can affect the eyes, mouth, mucus membranes, and probably other things (there are several people on here with more knowledge than I) that could be causing the dryness? Here is a link: Open Original Shared Link On a side note I gave up wearing contacts in 1999 due to the constant dryness and redness despite how much I used drops. I decided last year to try them again and did well for about 8 months. The dryness came back with a vengence and I literally want to gouge them out and I only use them 1/2 the time alternating them with my glasses. I went back this year and told the eye doctor about my issues and we are trying different brands to see if a different material helps. I did not have any of the changes like you though. I may look at punctal plugs next if this last brand does not work. Otherwise I'll just keep wearing my glasses. I also don't wear the lens you do as the dr. said my astigmatism isn't severe enough. The reason I wanted occasional use of contacts is because I'm very rough on glasses when I am doing activities.

Skylark Collaborator

Corneal infiltration is pretty common. I haven't been able to sleep in extended wear contacts for years because they don't let quite enough oxygen through. I doubt it has anything to do with celiac.

Roda Rising Star

Also, I forgot to ask if your contact lens are the daily disposable ones that you use a new pair every day? That is what I have been using for the last year. The brand I am using now are alot more comfortable than the previous. Dr. said they are made out of the same material heart stents are made from. He told me that the material is more compatible with tissues. I like putting in a fresh pair every time I want to wear them.

ravenwoodglass Mentor

I had a similar experience with the toric lenses but no where near as bad. I stopped wearing them years ago but it was literally years before the red circles that marked the edges of the where the lenses were went away. Mine were a hard lense but I don't know if your's were. My DS and DD both use lenses with no real problems. Our doctor wouldn't give them the extended wear that you sleep in, he felt they were dangerous and too prone to problems. One wears the extended wear but removes them at night and the other uses the daily wear ones where you put in a new lense daily. Both have had good luck with those.

Myself I feel 'naked' without glasses as I have gotten so used to seeing them on my face so after my bad experience with contacts have just accepted that they are not for me. I did have dry eyes, mouth etc but doctors always attributed it to the large number of meds I was on. That has improved gluten free but I don't know whether the dryness was caused by the meds or the celiac.

emsimm Newbie

Could you have sjogren's syndrome? It is an autoimmune disease that can affect the eyes, mouth, mucus membranes, and probably other things (there are several people on here with more knowledge than I) that could be causing the dryness? Here is a link: Open Original Shared Link On a side note I gave up wearing contacts in 1999 due to the constant dryness and redness despite how much I used drops. I decided last year to try them again and did well for about 8 months. The dryness came back with a vengence and I literally want to gouge them out and I only use them 1/2 the time alternating them with my glasses. I went back this year and told the eye doctor about my issues and we are trying different brands to see if a different material helps. I did not have any of the changes like you though. I may look at punctal plugs next if this last brand does not work. Otherwise I'll just keep wearing my glasses. I also don't wear the lens you do as the dr. said my astigmatism isn't severe enough. The reason I wanted occasional use of contacts is because I'm very rough on glasses when I am doing activities.

I don't think so (re: Sjogren's), as I don't have any of the symptoms and my eyes are not generally dry. I think I'm going to give up contacts, too. Not worth the risk of losing eyesight! Thanks for the response! Sorry to hear that you have such issues with dryness - I hope you are able to find a solution.

Gemini Experienced

Could you have sjogren's syndrome? It is an autoimmune disease that can affect the eyes, mouth, mucus membranes, and probably other things (there are several people on here with more knowledge than I) that could be causing the dryness? Here is a link: Open Original Shared Link On a side note I gave up wearing contacts in 1999 due to the constant dryness and redness despite how much I used drops. I decided last year to try them again and did well for about 8 months. The dryness came back with a vengence and I literally want to gouge them out and I only use them 1/2 the time alternating them with my glasses. I went back this year and told the eye doctor about my issues and we are trying different brands to see if a different material helps. I did not have any of the changes like you though. I may look at punctal plugs next if this last brand does not work. Otherwise I'll just keep wearing my glasses. I also don't wear the lens you do as the dr. said my astigmatism isn't severe enough. The reason I wanted occasional use of contacts is because I'm very rough on glasses when I am doing activities.

Roda...do you have Sjogren's yourself? It sounds like you do. I have never been a contact lens wearer as I just couldn't stand them. Maybe I had developed Sjogren's earlier than I thought but I wear glasses for driving and don't have to wear them all the time. It's the small print glasses for reading that are worn more than anything else. If you have dry eye, wearing contacts is a bad idea. I can't understand why people wear them as they can damage your eye badly. Having Lasix eye surgery is a bad idea if you have dry eye also. It will dry them out even more and it will become extremely problematic as you age, believe me!

Try asking for a Rx for Restasis eye drops. They work wonders for dry eye. I finally broke down and tried them when I was diagnosed with Sjogren's officially (I already knew I had it before the doctor did) and my eyes have improved dramatically. Yes, I have to use it for the rest of my life but that's a tiny price to pay for eye relief. My eyes were so dry, I could have lost my vision eventually if I didn't take aggressive action to make things better. I would advise trying that over punctal plugs. I told the eye doctor no way were they going to do that to me but fortunately, my lower eye lids turn slightly inwards so the plugs would have irritated my eye anyway. You can only have them if your tear duct opening doesn't come into contact with your eyeball.


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



Celiac.com Sponsor (A8-M):



Roda Rising Star

Roda...do you have Sjogren's yourself? It sounds like you do. I have never been a contact lens wearer as I just couldn't stand them. Maybe I had developed Sjogren's earlier than I thought but I wear glasses for driving and don't have to wear them all the time. It's the small print glasses for reading that are worn more than anything else. If you have dry eye, wearing contacts is a bad idea. I can't understand why people wear them as they can damage your eye badly. Having Lasix eye surgery is a bad idea if you have dry eye also. It will dry them out even more and it will become extremely problematic as you age, believe me!

Try asking for a Rx for Restasis eye drops. They work wonders for dry eye. I finally broke down and tried them when I was diagnosed with Sjogren's officially (I already knew I had it before the doctor did) and my eyes have improved dramatically. Yes, I have to use it for the rest of my life but that's a tiny price to pay for eye relief. My eyes were so dry, I could have lost my vision eventually if I didn't take aggressive action to make things better. I would advise trying that over punctal plugs. I told the eye doctor no way were they going to do that to me but fortunately, my lower eye lids turn slightly inwards so the plugs would have irritated my eye anyway. You can only have them if your tear duct opening doesn't come into contact with your eyeball.

To my knowldege no. It came up in casual conversation while at my eye appointment, but the eye doctor didn't elabroate any more on it. He just mentioned that I just might have to give up on the notion of wearing contacts. I have no redness or damage to the eye from the contacts. I remember when I was 14 when I first got contacts, the doctor did tell me I was not a canidate for extended wear contacts. I have no idea why, since no other reason was given. I was alright with that because the thought of leaving them in for weeks grosses me out anyway. After reading a little on sjorgens the only other symptome I can relate to is possible reynauds syndrome. I've thought I might have had this years ago. My hands a feet can get so cold and become discolored. It can take forever for them to warm up. People will look at me like I have something wrong with my hands. I've just always joked saying I must have bad circulation.

WW340 Rookie

I had to see a corneal expert last summer due to constant corneal tears that happened at night during my sleep (recurrent corneal erosions). He feels my problems are probably celiac related. He said celiac sets off lots of other autoimmune problems.

He said I have an inflammatory issue with my eyes it could be sojourns or rosacia of the eyes. He said it didn't matter which it was as it was still an inflammation issue. I am on a ton of meds to control the inflammation, which is working.

I have never been able to wear contacts for any length of time. I occasionally wear them for special occasions.

Tina B Apprentice

Corneal infiltration is pretty common. I haven't been able to sleep in extended wear contacts for years because they don't let quite enough oxygen through. I doubt it has anything to do with celiac.

Agreed. I have had giant cell conjunctivitis and now have dry eye syndrome and have to use Systane drops or Genteel Gel. I had to stop wearing lenses years ago. I doubt it has anything to do with celiac. Too many non celiacs out there with the same problem. My husband, for one. It's a very common problem. My husband got Lasik because he had trouble with the extended wear lenses and the others were too much hassle.

georgie Enthusiast

What type of lens do you use? I wear gas permeable rigid ones. I would "never" wear extended lens and sleep with them. It is no effort at all to remove them before sleep. I have been wearing contact lens for 40 years now. The originals were not gas permeable but rigid. I tried soft lens about 30 years ago and did not get on well with them. Have had gas permeables ever since. I live in a very dry climate and have some astigmatism. I get regular health checks every 2 years with a Specialist and yearly checks with an optician. I have a huge prescription strength so that normal glasses ( even micro lens ) do not work and I get curvature problems with the glasses. Eventually after cataract surgery I may then not need contact lens but they have been a miracle for me.

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. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    2. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    3. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    4. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,151
    • Most Online (within 30 mins)
      7,748

    Travis25
    Newest Member
    Travis25
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • 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.