Tweet
I am recently diagnosed with Celiacs Disease, an autoimmune disorder. Have had MGD for 8 years. Only ever had problems with my lipid layer. However my aqueous tears have recently decreased as well. Doctor is now thinking it may be Sjogren's. My Grandmother has Sjogren's after years of having rhemutoid arthritis. However, I don't have dry mouth and still have reactional tears from crying. Can you still have reactional tears and have Sjogren's? I always thought you could not. MGD seems to have improved since going gluten free. But not aqueous tears. I am bummed as thought gluten free may help my eyes a great deal.
-
-
Yes, you can. It's a progressive condition so there are varying degrees. People with very severe Sjogrens cannot make reflex tears at all, but many people with Sjogrens have at least some reflex tears.Originally posted by BennyboyRebecca Petris
The Dry Eye Foundation
dryeyefoundation.org
800-484-0244 -
Benny- to clarify what Rebecca said:
I have Sjogrens Syndrome and can produce reflex tears. I had dry eyes long before I had dry mouth. Many years, in fact. You may never have dry mouth.
Also, this can vary greatly from day to day, in fact hour to hour. At times, my mouth is so dry I literally can't make a drop of saliva and need water. Other times, this is not the case.
LucyDon't trust any refractive surgeon with YOUR eyes.
The Dry Eye QueenComment
-
Thanks for info. Can Sjogren's affect the meibomian glands as well or just lacrimal? Is there any medication for Sjogren's?Comment
-
My ANA test has come back as negative. Does anyone know if this rules out Sjogren's at all?Comment
-
Unfotunately a negative ANA test doesn't always mean that you don't have/aren't developing Sjogren's. My mother's came back negative last summer and then just after Christmas it was positive. Now in May, her symptoms are much worse. Nasty disease.Comment
-
My 2 cents again, Eli is right about the ANA. Nagative ANA does not rule out Sjogrens. Just as a positive ANA does not necessarily mean you do have Sjogrens. Your ANA can be positive (although probably a low number) if you are fighting an infection, have been ill or a number of reasons.
If the ANA is positive along with other tests, then Sjogrens would be a possibility. Difficult to diagnose. I had a positive ANA 5 years before I knew I had Sjogrens. By the time of my diagnosis, the ANA was negative but other markers in my blood were positive for SS.
My experience sounds mucy like Eli's mother's problem except I was very sick last year about this time and did not yet know for sure why. I had a good idea, but the docs are adamant about the tests being positive. With treatment, I'm feeling much better.
LucyDon't trust any refractive surgeon with YOUR eyes.
The Dry Eye QueenComment
-
I would now say it's likely that I do have Sjogren's. While I don't have a dry mouth as yet. My saliva glands are often inflamed. I never understood why. I also have a pain in my jaw just below my ear lobe. I always thought there was something wrong with a tooth or my jaw was out of whack, but now I think it is to do with the gland. I think there are some tests and biopsies they can do on glands to get a diagnosis. I better do this as soon as possible.
My grandmother has both Rhemutoid Arthritis and Sjogrens and her ANA has always been negative.
Lucy - what treatment are you currently undergoing. Does this assist with your mouth or eyes as well??Comment
-
Benny, I will send you a PM.
PS. Many people have the pain you describe around the ear and/or similar to tooth pain. I do not have this, for which I am thankful.
LucyDon't trust any refractive surgeon with YOUR eyes.
The Dry Eye QueenComment
-
I have dry mouth, dry skin, dry eyes, even dry ears but they did a test and ruled out sjrogens. Is it possible that this test was wrong?Comment
-
Bloodwork alone is not conclusive for sjogrens. I think they say the lip biopsy is pretty much gold standard for a conclusive diagnosis.Originally posted by Danny_Rebecca Petris
The Dry Eye Foundation
dryeyefoundation.org
800-484-0244Comment
-
Sjogren's info
Hi Everybody,
Saw this discussion about Sjogren's so I thought I'd share some [relatively] recent news about Sjogren's research:
This is about diagnosing using teardrops:
http://www.medicalnewstoday.com/medi...p?newsid=22644
This is about green tea extract (GTE)
http://www.medicalnewstoday.com/medi...p?newsid=68406
I actually take a lot of supplements and have recently added GTE to my regimen. I also have vitiligo and other vit folks are trying GTE along with Olive Leaf Extract (OLE).
Best wishes...
JannComment
-
A biopsy would be a little too invasive for me, especially given that the bloodwork has already come back negative. If the biopsy also came back negative, then I would have gone through it for nothing.Originally posted by Rebecca PetrisComment
-
Yeah, I saw this. Hopefully, the test becomes available soon.Originally posted by jannzComment
-
Danny, when I read this post previously, I was going to write a blurb about the lip biopsy, but didn't. Lest I scare someone from not having the test. But, now that you've already decided not to............A biopsy would be a little too invasive for me, especially given that the bloodwork has already come back negative. If the biopsy also came back negative, then I would have gone through it for nothing.
I had a lip biopsy done last July. My lower lip is still numb as is the lower quadrant of the lower lip down to the gumline. Not everyone has this experience for sure, but from a Sjogrens board there are several besides me who have had this happen. My bloodwork is positive and if I had it to do over, I'd never have the lip biopsy UNLESS it meant access to medicine to help with the disease--or someone would give me a million bucks. The chances of you having Sjogrens is low at this time and to risk a messed up lip just isn't worth the extra aggravation.
PS. Not everyone has lip numbness, but this is part of the progression of MY Sjogrens. My mouth and lips are now as dry as my eyes.
LucyDon't trust any refractive surgeon with YOUR eyes.
The Dry Eye QueenComment
Comment