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Could Celiac's be causing my corneal erosion in bot of my eyes?

JessKirchoffMN

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JessKirchoffMN Newbie
JessKirchoffMN
Posted

I was diagnosed with celiac's 2 years ago.  I didn't have the typical symptoms (diarrhea, stomach pain, weight loss).  Mine seemed to be inflammatory.  My esophagus was swelling and making it difficult to swallow.  I follow a strict gluten free diet.  For the past year, I have been having issues with my left eye.  My cornea will just randomly open up.   It's the worst pain I've ever encountered.  After about 8 months of conservative treatment that was unsuccessful, I had to undergo surgery to smooth out the surface of my cornea.  This past Friday - my right eye is now doing the same thing.  My ophthalmologist said it's pretty uncommon for this to happen in both eyes as it's usually do to some type of trauma. I have not had any trauma to either eye.  Prior to the cornea opening up in both eyes - I get a sense of fullness or swelling in my eye.  I am wondering if anyone else has experienced this.  I have a gut feeling it's related to my celiac's but no MD is willing to look into it.  I'm still trying to find a MD that is familiar with this and can help manage things ongoing for me. 

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notme Experienced
notme
Posted

ugh, i'm so sorry this is happening to you :(  your post, however, is of interest to me as my daughter has been having corneal problems since she was twelve.  she was also dx'd with r.a. at the same age.   so, we attributed it to that sort of inflammation....  fast forward to my celiac dx (the 'hail mary' dx, lolz) and i am trying to convince her to get tested for celiac.  she is now 26 - i am so afraid of the damage she's doing.  

what does your doctor say is causing it?  (half these medical people have no clue, i'm sorry to say)

JessKirchoffMN Newbie
JessKirchoffMN
Posted
  • Author

I go in Wednesday to see my celiac doc... So far nobody (optho or my PCP) seems to think it's related.  I have also noticed my hands aching more over the past 3 months.  I'm sure my next stop is a rheumatologist.  It's getting so old.  I hope your daughter decides to get tested.  I apparently had it for a long time but ignored the symptoms because I didn't know any different.  I was diagnosed when I was 34 and have been dealing with complications of it ever since. 

notme Experienced
notme
Posted

it's such an odd thing - i would have never associated half of my symptoms to celiac but i have had amazing results - dx'd at age 47 and i'm 5 years on the diet - sooo many seemingly unrelated issues have cleared up.  so, it's not that far of a stretch that this could be caused by that pesky gene :(  nobody who treated my daughter could tell me what caused either issue (although she had irritated her eye at the time we saw specialists - somebody poked her - idk how many times i've been poked in the eye and my cornea didn't start peeling apart!)   and being as her eyeball is made of cartilage (?) they thought they should test for r.a. as well, which came up positive.  they put her on meds for the r.a. and gave her eye drops for her cornea.  went back numerous times and they told us it wasn't working....  they didn't know what was causing it....  shrug....  nothing else to do.  bye :(  (o, and that it would continue to get worse until she will probably need a corneal transplant)  so, yay.  celiac almost killed me (and over 25 yrs i was so sick) before they stumbled over my dx, and they were not really all that willing to commit to it!  so, without her being super convinced (or nearly dead)  i'm sure i can't get her to change her diet.  i did tell her that someone on my forum had symptoms similar to hers and her ears perked up, so please keep me posted as to your progress.  thanx :)  

ps - 34 isn't that old, whippasnappa !!  lolz

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