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

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


JessKirchoffMN

Recommended Posts

JessKirchoffMN Newbie

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. 


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



Celiac.com Sponsor (A8-M):



notme Experienced

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

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

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

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,036
    • Most Online (within 30 mins)
      7,748

    Cynthia Carlson
    Newest Member
    Cynthia Carlson
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wends
       So sorry and sending well wishes. Replying from the UK. The NHS Coeliac Screen test is igAttg (including total igA). Your toddler is unlikely igA deficient with a titer of 22, as a positive test. When the igA anti-tissue transglutaminase antibodies are raised above the reference value or positive, the endomysial test is performed. The TTG test is suggestive of coeliac disease BUT it can be transiently raised in type 1 diabetes, milk protein intolerance (common in early childhood. Can also cause malabsorption similar to coeliac disease). Can be slightly raised in other food sensitivity and food allergy and some other conditions. Whilst it is more specific for coeliac disease than the older...
    • trents
      Here is an article that gives an overview of all tests that can be used to detect celiac disease:    As you can see, the different tests vary in their degree of specificity and sensitivity. So, it is to be expected that if someone has celiac disease, not all the tests will be positive. Also notice that the tests break down into two large groups, IGA-based tests and IGG-based tests. There is also the EMA (Endomysial Antibodies) which is an older test and has largely been supplanted by he tTG-IGA which is less expensive to administer. So, when you report that the TTG score from your daughter's bloodwork is 22ku/l, we assume you are referring to the tTG-IGA test, which is the most popular test...
    • Scott Adams
      I’m so sorry to hear about your toddler’s recent Type 1 diabetes diagnosis, and I understand how overwhelming it must feel to now be navigating possible celiac disease as well. The slightly elevated TTG antibodies (22 ku/L) with normal endomysial antibodies could indicate a few things—sometimes, mild elevations can occur due to factors other than celiac disease, such as recent infections or even Type 1 diabetes itself. However, the symptoms you’ve noticed (changes in stools, itching, and hair thinning) could potentially align with celiac disease, so it’s understandable why you’re concerned. Since the consultant wants to retest in 3–6 months, it may be because they’re assessing whether...
    • mytype1diabetes
      Hi all, Posting from the UK.  My 2 year old was recently diagnosed with Type 1 diabetes. In the UK they routinely screen for coeliac disease. The test showed slightly elevated levels of TTG antibodies. The consultant wants to repeat these antibodies in 3-6 months time to determine clinical significance. In our letter it said "marginally elevated TTG antibodies (22ku/l), normal endomysial antibodies". I'm not exactly sure what this means, especially given one of the tests were within the normal range, and if we should be worried about the numbers. It is difficult to know if she has any "symptoms" but at the time she was diagnosed with Type 1 diabetes I noticed that her stools had changed. They...
    • slkrav
      I was feeling really sick last week, for several days I kept thinking I was getting cross contamination. Typical symptoms like not sleeping well at night and waking up with widespread inflammation in all of my joints, foggy head and of course bowel issues. I had read the article recently that was talking about body products. I was starting to get depressed. I was showering and decided to read the ingredients in the products I've been using. It turns out that two of the ingredients in my conditioning hair mask contain GLUTEN. I felt really stupid for not checking before and I threw that away and also checked the ingredients of everything else I've been using. I've heard of skin issues from...
×
×
  • Create New...