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

Unexplained Eye Pain


LookingforAnswers15

Recommended Posts

LookingforAnswers15 Enthusiast

Hi all,

 

once again I need some help. Since September/October of last year, I have had (on and off), what appeared to be an eye infection in my left eye. It was constantly tearing and at some point it would start hurting. I went to see different doctors multiple times, just kept giving me eye drops and saying that it makes no sense and it is possibly connected with something else in my body. I asked my gastro doctor and she said i was tested for Sjorgens (no idea which test that was) and that I did not have it. When I was diagnosed with celiac, in the hospital they said they tested me for lupus and i did not have it. However, i wonder if anything has changed. I still have another 3 weeks to wait for the results of my recent tests:

 

ANA, rheumatology factor, anti-CCP, anti-TTG, C3,C4,CIC, ACA, B2-glycoprotein, Anti-gastric parietal, ENA-6. I started googling those ones, but I am not completely sure what they would be able to tell a doctor. Do you know what they are supposed reveal? 

 

My eye is tearing and it hurts again. So, I worry again about having other AIs. If it is Sjorgen's, I read that people with Sjorgen's usually have Rheumatoid arthritis or lupus....exactly what I have been scared of.

 

It seems like I keep questioning whether or not I have one or another AI. I was worried about MS (because of random twitches, weakness, pain), but luckily my MRI was ok. Every time I am hopeful, some symptoms appear or reappear and scare me. 

 

Do you have any advice regarding my eye and what these tests are for?

 

THANK YOU!


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Have you been to an actual eye MD?  Actually, could just be an allergy.  My eyes water and hurt during certain seasons.

LookingforAnswers15 Enthusiast

Yes, I have been to three ophthalmologists. The last appointment was in August, at that time my left eye was not tearing or hurting, but he said that he can see chronic inflammation and he kept saying how weird all this seemed to him. The only reason why i went to see him then is because I mentioned to the neurologist that i sometimes have this eye pain so he sent me there. The ophthalmologist also said that he did not think it was Sjorgen's but he was the one who thought it could be MS. That was another reason why I did an MRI.

 

I would be happy if it was an allergy but I had these problems on and off. Sure enough it is September again, when originally it all began last year, but I really don't know.

 

Thank you Kareng! 

ravenwoodglass Mentor

Have they done the test where they put a little piece of paper in your eye? That is the way the eye doctor tested me for Sjorgen's when I was having problems with my eyes. IMHO the doctor who was puzzed by the inflammation shouldn't have just basically shrugged his shoulders.  Can you get a referral to another doctor for a second opinion?  The eye doctor I was referred to was not just an eye doctor but also an eye surgeon. Maybe someone like that might have a better idea what is causing the inflammation.

Do you ever see auras or sparklies? I used to get that and was told what was going on was ocular migraines. Have those been ruled out?

LookingforAnswers15 Enthusiast

Hi Raven, 

 

yes, I have done it a couple of times. I think it is called a tear test or something like that because they use tear test strips to see how many tears you produce and I was producing plenty. I honestly saw 2 doctors at one hospital. They gave me some  corticosteroids eye drops telling me that if they worked I would know it is related to the autoimmune disease. After a few days I stopped using them because my eye felt stiff (a weird way to describe an eye) but almost as if the eye drops were numbing the eye but not taking pain away. Soon after, although slowly the eye begin improving so I was assuming that it was not  getting better from those eyedrops. When these doctors said there was nothing they could do after that (they did do that tear test), I went to a private doctor who said it could be related with autoimmune system but could not tell me anything else. The last doctor checked the eye pressure and did all other exams that he had equipment for. He really took his time with me but said he really was confused why this was happening when I also did well on the eye exam. 

 

I do not think that I have seen those. I just noticed that my vision was worse at night especially with all those bright lights (Street lamps, store signs,etc).

 

Do you know what some of those tests (ANA, rheumatology factor, anti-CCP, anti-TTG, C3,C4,CIC, ACA, B2-glycoprotein, Anti-gastric parietal, ENA-6) are meant to reveal?

 

Thank you!!

cyclinglady Grand Master

Have you been tested for thyroid disease? Graves Disease (autoimmune hyper) can affect one or both eyes (lots of doctors assume it should affect both eyes....). It can cause tearing and eye pain, especially the muscles around the eye. It took some time for doctors to catch my Mom's Graves Disease.

Regarding the blood test.... I assume the TTG is a celiac re-check. The others are for R. Arthritis, lupus and pernicious anemia. I guess they are checking for other autoimmune disorders -- but not for thyroiditis (in this case, Graves).

LookingforAnswers15 Enthusiast

Hi Cyclinglady,

 

I have been tested for thyroid but someone suggested making sure that I also have FT3 and FT4 (I think) tested to make it more accurate. So, I am planning on getting it done.  My eye pain is just like you described it, with the muscles around it hurting.

 

Would an MRI of my neck show my thyroid and whether it is ok? I hope this is not a stupid question but since the MRI revealed swollen lymph nodes, I wonder if it can catch anything with thyroid.

 

Thank you for your suggestion and clarifying what those test were for.


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



Celiac.com Sponsor (A8-M):



cristiana Veteran

What it can capture is if you have thyroid nodules.  I had a C-Spine MRI which showed them present.  They then had to be investigated by ultrasound  and samples were taken with a fine needle to check they were benign.   If someone has had other thyroid difficulties revealed by MRI perhaps they can chime in. 

LookingforAnswers15 Enthusiast

Thanks Christina!

 

The ultrasound originally did not show anything. I wanted to do an MRI of my neck, thinking it would show atlas, c1,c2 to see if that was causing my headaches. Did not know and the doctor did not tell me that is completely a different MRI. The MRI I had showed these lymph nodes and I was told by the doctor who looked at my MRI to go to otolaryngologist who might choose to take samples. However, when I went to otolaryngologist, he said it was not a big deal and gave me some antibiotics.  

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,915
    • Most Online (within 30 mins)
      7,748

    marcusdarrell1
    Newest Member
    marcusdarrell1
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      I followed the Autoimmune Protocol Diet which is really strict for a while, but later other foods can be added back into your diet.  Following the AIP diet strictly allows you digestive system to heal and the inflammation to calm down.  Sort of like feeding a sick baby easy to digest food instead of spicy pizza.   It's important to get the inflammation down because chronic inflammation leads to other health problems.  Histamine is released as part of the autoimmune response to gluten.  High histamine levels make you feel bad and can cause breathing problems (worsening asthma), cardiovascular problems (tachycardia), and other autoimmune diseases (Hashimoto's thyroiditis, diabetes) and even mental health problems. Following the low histamine version of the AIP diet allows the body to clear the histamine from our bodies.  Some foods are high in histamine.  Avoiding these makes it easier for our bodies to clear the histamine released after a gluten exposure.   Vitamin D helps regulate the immune system and calm it down.  Vitamin D is frequently low in Celiacs.  The B Complex vitamins and Vitamin C are needed to clear histamine.   Supplementing with essential vitamins and minerals boosts your intestines' ability to absorb them while healing.   Keep in mind that gluten-free facsimile foods, like gluten-free bread, are not enriched with added vitamins like their gluten containing counterparts are.   They are empty calories, no nutritional value, which use up your B vitamins in order to turn the calories into fuel for the body to function.   Talk to your doctor or nutritionist about supplementing while healing.  Take a good B Complex and extra Thiamine in the form Benfotiamine (shown to promote gut health).  Most B Complex vitamins contain thiamine mononitrate which the body cannot utilize.  Meats and liver are good sources of B vitamins.   Dr. Sarah Ballantyne wrote the book, the Paleo Approach.  She's a Celiac herself.  Her book explains a lot.   I'm so glad you're feeling better and finding your balance!
    • klmgarland
      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure!
    • knitty kitty
      Some people prefer eating gluten before bed, then sleeping through the worst symptoms at night.  You might want to try that and see if that makes any difference.   Several slices of toast for breakfast sounds okay.  Just try to work up to the Ten grams of gluten.  Cookies might only have a half of a gram of gluten.  The weight of the whole cookie is not the same as the amount of gluten in it.  So do try to eat bread things with big bubbles, like cinnamon rolls.   Yeah, I'm familiar with the "death warmed over" feeling.  I hope you get the genetic test results quickly.  I despise how we have to make ourselves sick to get a diagnosis.  Hang in there, sweetie, the tribe is supporting you.  
    • Clear2me
      Thank you, a little expensive but glad to have this source. 
    • Xravith
      @knitty kitty  Thank you very much for the advice. I did the exam this morning, my doctor actually suggested me to take something called "Celiac duo test" in which I first do the genetic test and if it's positive, then I'll have to do the antigen blood test. I have to attend 1 month until my results are ready, so I have some weeks to increase the amount of gluten I eat daily. It will be hard because my health is not the best right now, but I also did a blood test to cheek my nutritional deficiencies. The results will arrive on Tuesday, so I can ask my doctor what should I do to control my symptoms and blood levels during this month. For now I'm resting and paying attention to what I eat— at least I don’t look like a vampire who just woke up, like I did yesterday. I'm still scared because is the first time I've felt this sick, but this is the right moment to turn things around for the better.  I realized that if I eat gluten at lunch I cannot finish the day properly, I become severely tired and sometimes my stomach hurts a lot - let's not talk about the bloating that starts later. Do you think is it ok to eat gluten just in the morning, like some cookies and slices of bread for breakfast? 
×
×
  • 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.