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Burning Eyes - Sjogren's Syndrome?

Bethany516

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Bethany516 Newbie
Bethany516
Posted

Hi! I found out I have Celiac disease in 2014 and have been gluten free for 2 years now. I also am hypermobile and SIBO. I also have this weird issue with my eyes having extreme burning at random times when I am indoors. So far I haven't been able to connect it to any food, but has anyone else dealt with this issue? 

I'm wondering if it could be SJogrens which I've read can be related to Celiac....\

 

Thanks!

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kareng Grand Master
kareng
Posted

What does the eye doc say?

Pronghorngirl Newbie
Pronghorngirl
Posted

I just joined this group and have just recently been diagnosed with Celiac. I was also diagnosed the same day with a Sjogren, and Rynauds...it sucks. Lol. But the dry eye and mouth along with other things at times are horrible. My Dr told me to stay on top of hydration and to use things like hard candies. She recommended sugar free bust I can't do that due to the fibromyalgia. So I'm carefull and keep water and if I talk too much I make sure to sip water too. Good luck.

Bethany516 Newbie
Bethany516
Posted
  • Author

@kareng the opthamologist just told me to drink water and use eye drops. But I drink a gallon literally of water every day and eye drops don't help at all when I'm having a burning attack. 

Bethany516 Newbie
Bethany516
Posted
  • Author

@Pronghorngirl  thank you for responding!! do you ever have your eyes start burning out of no where, but very intensely? And what do you do when that happens? What tests did the dr use to help you diagnose it? 

captaincrab55 Collaborator
captaincrab55
Posted

Prescription eye drops,  RESTASIS twice a day does wonders.

kareng Grand Master
kareng
Posted
43 minutes ago, Bethany516 said:

@kareng the opthamologist just told me to drink water and use eye drops. But I drink a gallon literally of water every day and eye drops don't help at all when I'm having a burning attack. 

And when you told him/her or your " regular" Doctor that that doesn't work?  Did they talk about prescription eye drops?  Maybe it's an allergic reaction to something in the environment?  Are you staring at a computer or tv or reading when it happens?  Maybe give the docs a little info to go on.

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Gemini Experienced
Gemini
Posted
15 hours ago, Pronghorngirl said:

I just joined this group and have just recently been diagnosed with Celiac. I was also diagnosed the same day with a Sjogren, and Rynauds...it sucks. Lol. But the dry eye and mouth along with other things at times are horrible. My Dr told me to stay on top of hydration and to use things like hard candies. She recommended sugar free bust I can't do that due to the fibromyalgia. So I'm carefull and keep water and if I talk too much I make sure to sip water too. Good luck.

Just wanted to respond to your post and give a little information to those on this thread.  I have Celiac, Sjogren's, Hashi's thyroid disease and Reynaud's, so I definitely feel your pain. I have been doing all this for 11 years now when I was diagnosed with Celiac but I have had the others for far longer. I am almost 57 years old.

These are all related to Celiac because of the common inflammation theme. Undiagnosed or newly diagnosed Celiac's will have worse symptoms, until healing from Celiac takes place. You have no idea how bad my eyes and mouth were the few years prior to my diagnosis. Sensitivity to light, burning and extreme dryness in my eyes and dental problems galore, plus difficulty swallowing things like bread are the hallmarks of Sjogren's.  If you suspect you may have it, I would recommend the blood antibody test for it but not everyone with Sjogren's will test positive. Same as Celiac...its autoimmune and you never know who the serio-positive people are until you do testing. There is also the salivary gland biopsy for further testing, if needed. I tested positive for it so never did the biopsy.

Since I went gluten free, with time, symptoms improve because you are taming that inflammation demon down. Focus on doing that and in the meantime, the following products are extremely helpful......

Open Original Shared Link  The mouthwash is awesome and leaves a really, nice clean taste in your mouth. I do not use the toothpaste, though.  I am not sure if the toothpaste is gluten free but the mouthwash is.  The mouthwash contains enzymes that are found in saliva, that help protect your teeth from tooth decay.  This is BIG problem for us so if you do have Sjogren's, you may have many dental problems. I do, unfortunately.  I go to the dentist more than the doctor. 

Restasis eye drops, as mentioned above, are a life saver. They are Rx only but they work really well with the inflammation. I am NOT happy I may have to use them for the rest of my life but eyes are important so I have no choice. They work well so I can put that past me.

I also use OTC Refresh eyedrops liberally throughout the day and that helps to keep the eyeballs hydrated.  Think of it as not having the ability to hydrate your eyes like other people.....that happens automatically for them by their lacrimal glands. These are the glands, along with your salivary glands for your mouth, which hydrate your eyes. They are both compromised in people with Sjogren's so we have to do all the hydrating manually. And yes, sometimes I still have a pity party because I get fed up with all the maintenance I have to do to be fairly normal.  That's where the red wine comes in.......;)

Chewing sugar free gum and sucking on sugar free candies are very helpful. They must be sugar free because, without much saliva, if you use sugar filled things, your teeth will decay rapidly. This really sucks but reality is reality. Chewing gum stimulates saliva production and it really works.

Keep hydrated....you all know the drill.  I only drink red wine for alcohol and easily limit it to 1 6-8 ounce glass, period. If I drink more than that, my mouth gets very dry. Otherwise, its water, water everywhere. It doesn't help all that much short term because once you swallow the water, you are dry again.  But......if you keep hydrated overall, your mouth won't be as dry at the end of the day.

Burning of the tongue is also a common symptom of Sjogren's.........when things are really, really dry, they will burn.  That can go away also with proper maintenance to be more hydrated.

If any of you have questions, I am always willing to help. Having these problems can be very hard and currently, I have a lot of stress in my life and it is causing problems for me autoimmune wise. Suckaroo, I can tell you. So, things will get better if you do a good job on your diet and symptom treat the problems that stem from AI diseases like these. Try not to let stress take over but I know, it can very difficult to actually control that.

Hope this helps!  :)

 

joyful gma Newbie
joyful gma
Posted

I also have celiac and Sjogrens and Last week I was going bizurk over my burning eyes. This is the first time that they have hurt this bad. I just found out that gluten is in "everything".  At least it seems like it!     I just found out and experienced the fact that I am so allergic to Latex. I had put tape over a cut and also on a blister.  The longer I had it on, the worse it got until I figured out that that is what was probably causing all the pain.  I immediately pulled them off and the burning sensation was gone within the hour.  I also use Refresh eye drops to help before the hour was up.  There is something in the adhesive that causes the burning. I now have to go through my clothes and socks and underwear. As I eliminate the item, I am finding that my eyes stay "normal" a lot longer! Also it is very important to keep hydrated!!! Stay away from Latex paints also!!! Eyes are tooooo important!!!!

Gemini Experienced
Gemini
Posted
21 minutes ago, joyful gma said:

I also have celiac and Sjogrens and Last week I was going bizurk over my burning eyes. This is the first time that they have hurt this bad. I just found out that gluten is in "everything".  At least it seems like it!     I just found out and experienced the fact that I am so allergic to Latex. I had put tape over a cut and also on a blister.  The longer I had it on, the worse it got until I figured out that that is what was probably causing all the pain.  I immediately pulled them off and the burning sensation was gone within the hour.  I also use Refresh eye drops to help before the hour was up.  There is something in the adhesive that causes the burning. I now have to go through my clothes and socks and underwear. As I eliminate the item, I am finding that my eyes stay "normal" a lot longer! Also it is very important to keep hydrated!!! Stay away from Latex paints also!!! Eyes are tooooo important!!!!

Although it may seem that way to someone new to the diet, gluten is not in everything. There are many foods we can safely eat that will not cause a problem.

If you have a latex allergy, why do you need to go through your clothes? 

joyful gma Newbie
joyful gma
Posted

I was wearing hosiery on Sunday and it "destroyed" my eyes for the day, until I took them off and about an hour or so later, my eyes began to clear up again.  A scarf that I wore today did the same thing.  My bras leave a red rash around my upper torso, that itches terribly.. My socks affected my whole system.  So I am going to try my clothes and see what I can wear safely and what I can't.  I have only noticed it in the last week or so, or rather made the connection as to why I itch or breakout when I do.. I thought it was from something I ate, but it happened on days when I would eat perfect foods and I couldn't understand why.  Now I know!

kareng Grand Master
kareng
Posted
2 hours ago, joyful gma said:

I was wearing hosiery on Sunday and it "destroyed" my eyes for the day, until I took them off and about an hour or so later, my eyes began to clear up again.  A scarf that I wore today did the same thing.  My bras leave a red rash around my upper torso, that itches terribly.. My socks affected my whole system.  So I am going to try my clothes and see what I can wear safely and what I can't.  I have only noticed it in the last week or so, or rather made the connection as to why I itch or breakout when I do.. I thought it was from something I ate, but it happened on days when I would eat perfect foods and I couldn't understand why.  Now I know!

Just to clarify for those reading along...... This is not gluten, Celiac or Sjogren's related.  

cyclinglady Grand Master
cyclinglady
Posted

We have mild latex allergies  in our family.  All bandages must be latex free.  I have to buy latex free socks for my hubby.  All underwear must have the elastic covered.  We get rashes where latex touches our skin.   It has never bothered our eyes before, but I imagine it can based on this from the CDC and other medical sites:

Open Original Shared Link

I would get a referral to an allergist and discuss whether or not  you need an epi pen.  There are special websites offering latex free underwear and bras.  Not attractive, but effective!  ?

Open Original Shared Link

Like karen said this is not related to celiac disease.  Just a separate issue.  

 

cyclinglady Grand Master
cyclinglady
Posted
8 hours ago, joyful gma said:

I also have celiac and Sjogrens and Last week I was going bizurk over my burning eyes. This is the first time that they have hurt this bad. I just found out that gluten is in "everything".  At least it seems like it!     I just found out and experienced the fact that I am so allergic to Latex. I had put tape over a cut and also on a blister.  The longer I had it on, the worse it got until I figured out that that is what was probably causing all the pain.  I immediately pulled them off and the burning sensation was gone within the hour.  I also use Refresh eye drops to help before the hour was up.  There is something in the adhesive that causes the burning. I now have to go through my clothes and socks and underwear. As I eliminate the item, I am finding that my eyes stay "normal" a lot longer! Also it is very important to keep hydrated!!! Stay away from Latex paints also!!! Eyes are tooooo important!!!!

Latex paint is safe:

Open Original Shared Link

 

gilligan Enthusiast
gilligan
Posted

Refresh eyedrops didn't work well for me.  I really like Systane

gel for nighttime use, and using a humidifier at night seems to help quite a lot.

deb-rn Contributor
deb-rn
Posted

I was diagnosed w/ Sjogren's before I found out I was Gluten Sensitive.  I was advised by my Eye Dr. to take 5,000 mg of Fish Oil daily... it helps with a lot of things!  I did the Restasis for a few years... gave up on it.  I no longer really saw benefit.  Some days I feel like I'm looking through vaseline... I'm missing the liquid part of the tears and have only the oily part.  My mouth will randomly break out in various sores, my joints will inflame and my Plantar Fasciitis will act up.  All inflammation related!  Life gets interesting!

 

Debbie

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