Possible Sjogens Syndrome?

Question

Back in March I had a positive ANA titer of 1:320, speckled pattern.  My family Dr. said this indicated lupus so sent me to a rheumatologist.  My appointment was today and he said that I didn't have lupus from looking at me and my bloodwork from early March, that instead I had Sjorgen's Syndrome due to my severe dry mouth.  But my Sjogren's SSA and SSB tests were both negative.  So I'm totally confused now!  All my bloodwork came back negative for the other stuff like Scleroderma and Smith's AB.  My Rheumatoid Fact was 8.6, and my Sed rate was 15, both within normal range. 
  He said with me having hypothyroidism and Celiac Disease that it probably caused my ANA to be positive and that I actually have Sjorgen's and not Lupus, so don't worry and see him in a year!  Now obviously I don't want to have lupus but I'd rather know than not.  My Mom had it and it did quite the damage on her before she died!  He also said my rash from being out in the sun was due to me having fair skin!  So I guess what I'm asking is, does this sound like Sjorgen's even without a positive test for the antibodies?
Thanks,
Vicky

TheLightSeeker · Accepted Answer

HI Vicky and welcome to the forum.

 It is possible you have seronegative Sjögren's, so in this case the determination  has to be from the clinical symptoms/history and not the labs.
If they match the SS profile well, it likely is SS. 
Coexistence of Sjögren's syndrome with lupus, is also possible.

However, the good news-possibly- is that because of your hypothyroid diagnosis, there's a chance that your SS or Lupus might be treatable (normally there's no effective treatment for it other than maintenance drugs), in the event that your hypothyroid is at least partially unresolved and directly linked to your suspected SS/lupus symptoms, including the butterfly rash!
Poof! This was a long sentence.

So here's what I would suggest you do.
Low thyroid function, even if you are on thyroid meds/supplements, will 
be indicated by doing Dr Barnes Basal Temperature Test.
Just do an online search for it and follow the simple instructions precisely!

 Conventional serum Thyroid testing is not necessarily accurate, nor indicative of cellular thyroid function and every cell of the body has thyroid receptors. In the event the thyroid hormones do not enter the cells, what good will the "normal" serum levels do???

IF I were you, hmm, what would I do-besides the above test?
Probably I would ask my primary care doctor to increase the dose gradually-hopefully you're on natural desiccated thyroid-according to symptoms and of course if your temp. test indicates low thyroid function.

After some tweaking for a few weeks, the dosing will be matched better to what your actual thyroid needs are and the side benefit might be  a gradual resolution of your SS/Lupus symptoms.

 The butterfly rash is very characteristic and I could spot it easily from across the room. It is unlikely caused by sun exposure.
Just do a comparison with online images. Look for red or purplish colors, 
lightly scaly and in the shape of a butterfly.

I cannot tell you to avoid gluten since you are Celiac's and you already know this very well, however, make sure you have a complete list printed of all the "illegal" foods and products.
Gluten is often included in products nobody suspects like playdough, shampoo, stamps, many cosmetic creams etc.

But I can tell you to avoid cross-reactive foods with gluten, which could be anything your immune system reacts to the same as gluten, because of similarity in the molecules. Dairy is tops at almost 50% of all celiac's.

You may want to do Dr.Coca's Pulse test, which will indicate which foods/drinks your immune system may treat as offensive.
It's a free download and it takes a week to complete, however, there's a fast version, perhaps not as accurate, but quite acceptable.
If interested, I can dig it out and send it to you. 
Oh I think I have it saved here somewhere.

Dr. Cocoa's Pulse Test (simplified version)Just sit in a chair and come to rest for about 5 minutes. Take your pulse for a full 1 minute (not the 15 sec. multiply by 4 thing). Then put whatever you want to test in your mouth and chew it for 30 seconds. If a liquid, just swish. Then take your pulse again.
 If you find it is faster by 6 beats, you are allergic or have a sensitivity to it.
 If you have type “O” blood, use 4 beats as the criteria instead of 6.
 It’s that simple!

I hope this helps, however, please note that my suggestions and comments do not constitute medical advice.

Let me know if you need any further details.

Best wishes.
Niko

TheLightSeeker · Answer

Vicky, because Sjögren's is not a specific disease, but rather a systemic syndrome, it can affect any part of the body, including muscle and joint pains,
(part of its arthritis aspect).

The other possibility is that some  hypothyroidism (under-treated) symptoms may overlap.

Cheers!
Niko

my4pickles · Answer

Do you know with Sjogren's Syndrome, do you have muscle aches and joint pain?

my4pickles · Answer

Thank you so much!  Extremely informative!

Red_Star · Answer

Undifferentiated Connective Tissue Disease (UCTD) is used to define the signs and symptoms suggestive of a systemic autoimmune disease that doesn't satisfy the criteria for defined connective tissue diseases such as lupus, Sjogren's, rheumatoid arthritis and others. Over time, UCTD may develop into a specific connective tissue disease.

Possible Sjogens Syndrome?

undifferentiated connective tissue disease(UCTD)

need help understand blood test results

Could this be Lupus or other autoimmune???

OA or autoimmune issue?

undifferentiated connective tissue disease(UCTD)

need help understand blood test results

Could this be Lupus or other autoimmune???

OA or autoimmune issue?

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