Sjogren’s syndrome, an autoimmune disorder, is usually misdiagnosed several times before the correct diagnosis is made.

You may have Sjogren’s syndrome and not even know this, despite visiting one doctor after another and after another to find out what’s gone wrong with your body.

Sjogren’s (show-grens) syndrome is an autoimmune condition that may affect many different systems of the body, various organs and produce a menagerie of symptoms, which range from annoying to moderate, to even severe to life-threatening (though the latter is rare).

Though Sjogren’s syndrome affects two to four million people here in the U.S., it is actually one of the most misdiagnosed diseases, even though there are several tests that can confirm it.

Because Sjogren’s syndrome causes joint pain in 80 percent of its patients, doctors who specialize in this condition are usually rheumatologists.

“Sjogren’s syndrome can be associated with a variety of autoimmune diseases including rheumatoid, thyroiditis, lupus, celiac sprue (disease), scleroderma, and even with non-rheumatic autoimmune diseases like hepatitis-C, autoimmune hepatitis, HIV,” says Ali D. Askari, MD, Professor of Medicine, Case Western Reserve University; Chief, Division of Rheumatology, University Hospitals Case Medical Center.

“Primary Sjogren’s syndrome (as opposed to secondary SS), though, is not associated with any of these conditions and there are differential points in each case.

“As opposed to rheumatoid arthritis, the joint involvement is not symmetrical, and nodules are formed less commonly, and destructive changes of the bones are seen less likely.”

Nine out of 10 people with SS are women, for reasons that are not known. The condition can affect any age, but it’s rare in those under 20. The mean age of onset is early to mid-forties.

“The specific radiologic changes and presence of subacute cutaneous nodules are more associated with rheumatoid arthritis,” says Dr. Askari.

“In lupus there is more involvement of the kidneys, the central nervous symptom (as opposed to peripheral nerves), and although the ANA is positive in both, anti-DNA is more positive in lupus than it is in Sjogren’s syndrome.

“Although photosensitivity can occur in both conditions, the very typical butterfly or malar rash (on the patient’s face) is more suggestive of systemic lupus.”

Celiac disease usually causes skin rashes, but the blood test for celiac disease will not show Sjogren’s syndrome antibodies. Furthermore, in celiac disease, diarrhea is far more common.

If you don’t get tested for celiac disease, yet you have this, and you go gluten-free (completely!) for 30 days, there should be remarkable improvement in your condition.

Dr. Askari continues, “Thyroid disease could be associated with Sjogren’s syndrome. Conversely, primary Sjogren’s syndrome is associated with more frequent occurrence of thyroid inflammation, the so-called Hashimoto’s thyroiditis.

“Neurological conditions such as MS in particular can be mistaken for Sjogren’s syndrome. More so, primary MS is getting diagnosed in patients with Sjogren’s.

“The differential can be achieved by the more frequent presence of specific antibodies in the blood in Sjogren’s syndrome and positive lip biopsy, but lesions on the MRI of the brain are similar to identical in both cases.”

The lip biopsy would confirm a decreased production of the salivary glands (the lips contain salivary glands), and this is a hallmark feature of Sjogren’s syndrome.

Dr. Askari explains, “Finally, in some cases of primary Sjogren’s syndrome, the dry eyes and mouth are later manifestations, and some unusual neurological manifestations, liver or cardiac disease may be one of the first findings.

“Additionally, the findings of dryness are not spontaneously expressed by the patient and are mainly attributed to the age, use of drugs, etc., and they should be solicited.”

Dr. Askari’s special interests include diseases of the muscles, fibromyalgia, general rheumatology, lupus and Sjögren’s syndrome.
Lorra Garrick has been covering medical, fitness and cybersecurity topics for many years, having written thousands of articles for print magazines and websites, including as a ghostwriter. She’s also a former ACE-certified personal trainer.