Anyone have Sjögren's with seronegative labs?

@lynda12345 I'm pretty sure I have it but same problem others have had, at 74 still not diagnosed. Have dry eyes, acid reflux, lips peel constantly, drink up to 40 oz of water durning the night etc. I have plugs in my tear ducts, helps with dry eyes but doctors said even if tested not much I can do but deal with symptoms! One thing I was always told I had celiac but tests were always negative since I don’t eat carbs due to high blood sugars but now there’s a blood test and I was very high for celiac. I guess since I went undiagnosed for 74 years I have developed all kinds of issues!

Hi Gene, this is Tina Hooper can you please tell me the time of when I start this and how far apart from the 1st 2 bottles of Gatorades to the next. Thanks

Yahoo Mail: Search, Organize, Conquer

Hi Gene, this is Tina Hooper can you please tell me the time of when I start this and how far apart from the 1st 2 bottles of Gatorades to the next. Thanks

Yahoo Mail: Search, Organize, Conquer

On Tue, Aug 25, 2026 at 1:24 PM, TIna Hooper wrote: Hi Gene, this is Tina Hooper can you please tell me the time of when I start this and how far apart from the 1st 2 bottles of Gatorades to the next. Thanks

Yahoo Mail: Search, Organize, Conquer

@saucy
I’m sorry to hear of your problems. Yes Drs are not sure what to do ? Sad
This is the invisible disease.
Acid reflux 🙁
For my eyes I use Theo Loz Duo eye drops 10ml size you can you as often as you wish no preservatives.
And sometimes i use Systane ointment at night
My Optomatrist was the first Dr that understands
Stress a big factor and watch what we eat. After showers apply baby oil when drying then add lotion or cream every where
Women Replens vaginal moisturizer I use once a week, use a nasal gel our eyes are connected to our noses. I know it’s frustrating but we need to be the experts here and educate family and professionals
Keep smiling

@lynda12345 thanks, I’ve had the eye plugs for years and really helps with dry eyes. They really have improved them over the years and going every 6 months to replace them. Medicare covers them. Just recently went on BRHT and vaginal Biest helps with vaginal dryness and UTI’s I used to get. I know that Celiac causes all kinds of autoimmune so have all kinds of issues with food.

Tested 3 years ago and have RA. Have you experienced negative for Sjogren's tho symptoms point to it? Thanks

@saffronsass I am seronegative in most tests, including lip bx. However, my ANA is “abnormal “ and sed rate is very high. Schimers is only 2, 3 dental implants over the years and now awaiting 5 more! I have 5 other autoimmunes: Primary Biliary Colangitis, Hashimotos, oral lichen Planas, lichen sclerosis, alopecia. The fact that a Mayo doc stated, “you don’t have Sjogrens,” when lip bx was negative, makes me think I need a second opinion? These symptoms have literally gone on for years. I am 78. Sorry, venting here!

@dianesbs I can’t answer your question about sjogrens but I didn’t want your posting to go unanswered! I know that many members of this group will answer you in the morning!

Unfortunately, it’s very common to have symptoms and have negative test results. I like to say antibodies are fickle and show up when they feel like! I have routinely tested negative for RA but my rheumatologist says I have it. My ANA was negative for a long time. Then it was negative but other tests were positive for ANCA Vasculitis and Sjogrens…a total surprise. Then next time those antibodies were negative in response to treatment but my ANA was a low positive! Who knows what they will be next time! Also, the thing about autoimmune disease is when there is one there will be others at some point. They like to bring their friends!

YES you can have Sjogrens and test antibody negative. I have tested. negative for the past two years other than a highly positive. SP-1(Salivary Protein-1) when I was initially tested. SP-1 is part of an early testing panel that is not recognized by established criteria/rigid. standards as definitive proof, I was told multiple times by different providers, I could not have Sjogrens without positive antibody tests,(even a rheumatologist), and that lip biopsy was required. I chose not to have a lip biopsy as I have MCAS/HaT/Seronegative Rheumatoid Arthritis/Eosinophilic Colitis/ Duodenal Intrapithelial Lymphocytosis/Lichen Sclerosis(thank you Covid for all of this), and my immune system is highly reactive. I was not treated, and now two years later, a new rheumatologist ordered a face MRI, and I have bilateral Grade II parotid gland damage. My understanding is about 30-40% of people can be anti-SSA/Ro and Anti SSB/La negative, and 15% of primary Sjogrens people can be quadruple negative for all standard markers, ( ANA, RF, anti-SSA, and anti-SSB) like me, but plese confirm those percentages. Alternatives to blood tests could be the lip biopsy, Ocular(Shirmer's test), salivary gland ultrasound, and other. Don't give up, and don't always take the first opinion; don't be afraid to advocate for yourself.