Mysterious me!

[Kennyholtsie]

Hi all, I'm not going to bore you with my history but even after diagnosis I continue with the same symptoms. 

For 4 years I have had swollen eye sockets, pain and pressure around eyes. Over the years i found that there is a relationship between food and my eyes. This is why I went to the GI and found out that I have celiac through DNA and Scope. Also low IGA which was covering up the celiac blood tests. 

Ive also been to hundreds of other docs over 4 years and had every test under the sun done. I'm very healthy!! (My primary calls me the million dollar man) ? Sorry health ins! 

Anyway, if I eat just about anything my eyes will hurt. Not my stomach or anything else. I get foggy headed, and then I have eye pain. It's literally all foods so eating has not been easy. If I stick to a very limited diet (meat, veggies) I tend to feel a bit better. There are certain foods that really set me off. Coffee, rice, corn, cheeses, all dairy, bananas, most OTC medicines etc, alcohol, sometimes potatoes and many more.  

I've been gluten-free for a year, and I continue to have these painful swollen eyes. 

Any ideas what could be going on with me? Please ask questions and I'll answer. 

Thanks!!

[ravenwoodglass]

Welcome to the board.  Could you be getting cross contamination somewhere? Sharing stuff like nut butters, jellies, mayo, butter etc can cross contaminate you. Whole unprocessed foods are the safest.  Eating in restaurants or in other folks homes can also be an issue as can simply kissing someone who eats gluten. Do you have your own toaster? Checked all meds script or OTC? Gluten can be sneaky. That said some problems can take quite awhile to ease. Do be sure to read the Newbie 101 thread at the top of the Coping section and feel free to ask any questions you need. I hope you get some relief soon.

[Lorjenn22]

for eye issue i think its your skin products or shampoos or soap. fir years i had itchy skin n rashes. turned out im allergic to sulfate. im not sure if that has gluton in it but i switched to aveno. once i used my moms shampoo bc i ran out n turn red lobster!! also make up or products or allegeons make my eye water all time! smtimes it’s something in air but i dont know what !!

[ravenwoodglass]

  On 10/15/2017 at 3:20 AM, Lorjenn22 said:

for eye issue i think its your skin products or shampoos or soap. fir years i had itchy skin n rashes. turned out im allergic to sulfate. im not sure if that has gluton in it but i switched to aveno. once i used my moms shampoo bc i ran out n turn red lobster!! also make up or products or allegeons make my eye water all time! smtimes it’s something in air but i dont know what !!

Expand Quote  

That's a possibility but I would advise looking carefully at the ingredients on Aveno products as many contain oats. 

[plumbago]

  On 10/14/2017 at 1:07 PM, Kennyholtsie said:

Hi all, I'm not going to bore you with my history but even after diagnosis I continue with the same symptoms. 

For 4 years I have had swollen eye sockets, pain and pressure around eyes. Over the years i found that there is a relationship between food and my eyes. This is why I went to the GI and found out that I have celiac through DNA and Scope. Also low IGA which was covering up the celiac blood tests. 

Ive also been to hundreds of other docs over 4 years and had every test under the sun done. I'm very healthy!! (My primary calls me the million dollar man) ? Sorry health ins! 

Anyway, if I eat just about anything my eyes will hurt. Not my stomach or anything else. I get foggy headed, and then I have eye pain. It's literally all foods so eating has not been easy. If I stick to a very limited diet (meat, veggies) I tend to feel a bit better. There are certain foods that really set me off. Coffee, rice, corn, cheeses, all dairy, bananas, most OTC medicines etc, alcohol, sometimes potatoes and many more.  

I've been gluten-free for a year, and I continue to have these painful swollen eyes. 

Any ideas what could be going on with me? Please ask questions and I'll answer. 

Thanks!!

Expand Quote  

Hi,

When you went gluten free did any symptoms improve (and then return)? If they did improve, for how long?

Have you been to an ophthalmologist?

A quick google turned up the possibility of TMJ
"Inflammation and irritation caused by friction in the temporomandibular joint can irritate and cause dysfunction in the trigeminal nerve which in turn leads on to pain and discomfort in the eye socket."

Also, thyroid - but doubtful, as that's usually hyperthyroid, and you'd probably know beyond a shadow of a doubt if you were hyperthyroid.

And your blood glucose is ok, right?

From what you describe it sounds kind of like a congestion of sorts. Are you sure it’s not sinus-related?

Please keep checking back in.

Plumbago

[Lisa1014]

Hi there. I've had ongoing issues with my eyes for a few months now, including pain in my eye orbit, swelling over and under my eyes, dry, wrinkled and flaking under eye skin that comes and goes. I thought that I was allergic to mascara that I had just purchased; that seemed to be when my symptoms began.

I'm presently I'm thinking that I have blepharitis. I'm also wondering about Sjorgens syndrome. I have an appointment with my ophthalmologist in a few weeks (my GP told me to put vaseline around my eyes-thanks for nothing!).

I'm practicing good eyelid hygiene and have noticed an improvement in just a day! Maybe you can check into those?

Good luck to you!

[cyclinglady]

Consider Graves Disease.  My mother struggled with it.  She did not have all the classic symptoms of Graves, but she did end up with permanent eye damage (she sees double).  My cousin had it even more severe.  Besides eye muscle pain, she had the classic eye budge (Grave’s affects the muscles in the eye and/or other muscles in the body producing weakness).

I have have Rosacea, but it presented  as Ocular Rosacea and not on my face.  My Hashi’s first presented with thyroid enlargement.  I was never cold, lost hair or gained a pound.  My celiac disease presented as anemia with none of the classic GI issues.  What I am saying is that Autoimmune Issues can have various symptoms and are often systemic.  

There was a point where I was having thyroid swings.  When hyper my eye muscles hurt.  Scared me because my mom was pretty much forced to give up working.  So......

Do not mess with your eyes.  Get checked by an ophthalmologist.