GI Manifestations Impact 80-95% Of Sjogren’s Patients.
GI manifestations are caused by mechanisms unique to Sjogren’s. Manifestations are not the same thing as symptoms (what you feel) or comorbidities (associated diseases).
Learn the difference between SIGNS, SYMPTOMS, AND MANIFESTATIONS.
Why Are GI Manifestations In Sjogren’s Underdiagnosed?
Clinicians frequently do not know that GI symptoms can be related to neuroimmune dysfunction caused by Sjogren’s. Rheumatologists sometimes overemphasize oral dryness as a cause of swallowing and digestive problems. Although saliva quality and quantity are crucial for healthy digestion, they only make up one part of a much bigger picture. Dysautonomia and small fiber neuropathy may cause abnormal esophageal motility, delayed stomach emptying (gastroparesis), and intestinal dysmotility. Intestinal dysmotility produces abdominal pain, diarrhea, and/or constipation, which are often misattributed to irritable bowel syndrome (IBS). NOTE: IBS is a catch-all phrase for a cluster of GI symptoms; it is not the name of a specific disease. In Sjogren’s, IBS symptoms are often caused by autonomic dysmotility (dysautonomia) and small fiber neuropathy, which are neurologic manifestations of Sjogren’s. Comorbidities such as food intolerances, medication side effects, small intestinal bacterial overgrowth (SIBO), or celiac disease may contribute to IBS symptoms. In Sjogren’s patients, clinicians should not default to an IBS label but should search for the underlying cause(s) of the GI symptoms. When a cause is determined, the IBS label should be dropped. Clinicians may not know that GI manifestations are caused by Sjogren’s because GI manifestations are not part of the main tool used in Sjogren’s research, the European Sjogren’s Syndrome Disease Activity Index (ESSDAI*). Because few studies include GI manifestations, clinicians often assume, incorrectly, that GI manifestations are not a part of Sjogren’s. Even if clinicians are aware of GI manifestations, they may lack referral resources for diagnostic tests that evaluate GI dysmotility and neuropathy. These tests are usually performed at neurogastroenterology or GI motility centers, which may not be easily accessible (242).
*See SJOGREN'S IS ALWAYS SYSTEMIC to learn about the uses and limitations of the ESSDAI (European Sjogren’s Syndrome Disease Activity Index).
About This Blog Post
This blog post lists GI manifestations, approximate prevalence, typical symptoms, and the specialists who usually diagnose and treat these manifestations. Comorbidities are also discussed because they should be addressed as a part of comprehensive Sjogren’s care.
The numbers on this page are derived from the few studies that specifically look at GI manifestations in Sjogren’s disease. The estimated percentage of patients impacted by each manifestation varies because each study uses their own methods.
GI Manifestations (Caused Directly By Sjogren’s)
Esophageal Dysmotility - 33-92%
Dysphagia, or trouble swallowing and a feeling of food or pills getting stuck, occurs when the smooth muscles of the esophagus do not coordinate properly. If severe, it may be difficult to eat anything other than soft food or liquids (201, 242). Most studies show no correlation of symptom severity with salivary flow (242). This suggests that abnormal esophageal motility is a major underlying cause. “...dysphagia and related symptoms are frequent and severe in pSS, heavily impact on the patient quality of life and satisfactory specialist care remains an unmet need.” – POS1464, EULAR 2023
Tip: Speech and language therapists are a valuable resource for help with dysphagia and dysphonia (trouble speaking), which often occur together.
Gastroesophageal Reflux Disease (GERD) - 30%-60%
Heartburn, chronic cough, chest pain or upper abdominal pain (112, 242) are typical GERD symptoms. GERD is common in the general population (about 20%) but is more common and often more severe in Sjogren’s. Patients can often manage this with lifestyle interventions; others may need medications. An ear, nose, and throat specialist (ENT) or gastroenterologist should evaluate more severe cases. Learn more about GERD.
Laryngopharyngeal Reflux (LPR) - Unknown %
Heartburn, chronic cough, reactive airways disease, hoarseness, and throat pain (242) occur when stomach acid goes into the upper airway. This condition is usually diagnosed and managed by ENTs. Learn more about LPR.
Atrophic Gastritis (Chronic) - 25%-80%
Anemia, upper abdominal pain, nausea, and nutritional deficiencies such as vitamin B12, iron, or folate (224) are common signs and symptoms of atrophic gastritis. Patients with H. pylori infection have an increased risk of developing gastric (stomach) cancer. Keep in mind that gastric cancer is rare, even in those at increased risk. Learn more about atrophic gastritis.
Mucosa-Associated Lymphoid Tissue (MALT) Lymphoma of the GI tract, is related to H. pylori infection. In Sjogren’s, MALT lymphoma is the most common type of lymphoma, although it usually arises in the salivary glands, not the GI tract.
Gastroparesis (Delayed Gastric Emptying) - 18%-up to 70%, Often Undiagnosed
Nausea, bloating, loss of appetite, and weight loss are common in gastroparesis (112). Gastroparesis is sometimes mistaken for an eating disorder. In rare instances, gastroparesis becomes severe enough to require a feeding tube. Learn more about gastroparesis.
Exocrine Pancreatic Insufficiency (EPI) - 36-63%
EPI is usually asymptomatic (79, 214 p. 335), although it may cause trouble with digestion. Learn more about EPI.
Pancreatitis - 0.5-5%
Pancreatitis may cause upper abdominal pain, nausea, vomiting, and fever. If it is recurrent or chronic, IgG4-related disease and gallbladder disease should be ruled out (224, 242). Tissue changes suggesting chronic pancreatitis have been found in 25-33% of patients, suggesting that subclinical pancreatic inflammation is common (242). Learn more about pancreatitis.
Peritonitis (Serositis Of The Abdominal Cavity) - Rare
Peritonitis may cause severe abdominal pain and malaise. Peritonitis is more common in systemic lupus erythematosus but may be caused by Sjogren’s and is usually diagnosed by a rheumatologist or gastroenterologist. Learn more about peritonitis and other types of serositis.
Vasculitis Of The Bowel - Rare
Vasculitis of the bowel may cause abdominal pain, nausea, vomiting, diarrhea, and/or blood in the stool which may be hidden (occult) or visible (79, 151 p. 122, 153).
GI Manifestations That Usually Have Both Sjogren’s And Non-Sjogren’s Causes
Chronic Constipation - 25% (79)
Chronic Diarrhea - 9% (79)
Food Intolerances - Common, Unknown %
Examples include lactose intolerance and non-celiac gluten sensitivity.
Intestinal Dysbiosis - Very Common, Exact Numbers Unknown
Small Intestine Bacterial Overgrowth (SIBO, a type of dysbiosis) - 20%
Intestinal dysbiosis (abnormal gut microbiome) is well documented in Sjogren’s.
While SIBO may be treated with antibiotics, a role for probiotics in Sjogren's care has not been established. “More research is needed, however, to identify the specific microbiome signature in Sjogren’s that can be used to guide prevention and therapeutic strategies” (214, p. 80). Learn more about probiotics.
Tip: Science has not advanced enough to recommend interventions such as probiotics and supplements, other than a healthy diet that includes a variety of fruits and vegetables.
GI Comorbidities
Comprehensive Sjogren’s care includes monitoring for common comorbidities.
See the MANIFESTATIONS VS. COMORBIDITIES blog post to learn the difference.
Liver Disease - Common
Sjogren’s patients are at increased risk of developing multiple types of liver disease. Screening for liver disease should be part of routine Sjogren’s care. See the LIVER DISEASE AND SJOGREN’S blog post for more information.
Celiac Disease - 5-12%
Up to 1 in 10 Sjogren’s patients has celiac disease. Every Sjogren’s patient should be screened for celiac disease, regardless of symptoms. This should be a high priority in patients with nausea, abdominal pain, bloating, diarrhea (or constipation), or unintentional weight loss. See the blog post, CELIAC DISEASE, GLUTEN, AND YOUR HEALTH to learn more.
Microscopic Colitis (MC) - Unknown %
Though MC often causes chronic watery diarrhea, in Sjogren’s it may cause chronic constipation. Learn more about microscopic colitis.
Please Note
This blog post is not meant to be printed out and used as a handout for clinicians. Instead, please make use of the references and handouts provided here and elsewhere on Sjogren’s Advocate. Some of the citations are open access, which means they can be printed out and shared with clinicians. This Sjogren’s Foundation brochure is a good place to start.
See HANDOUTS FOR CLINICIANS to learn how to share information with your clinicians.
Resources To Share With Your Clinicians
If your clinician insists that your gastrointestinal symptoms are not related to Sjogren’s, share the abstract of this article (112).and the Patient Education Sheet, GI Tips from the Sjogren’s Foundation.
Visit Association Of Gastrointestinal Motility Disorders for general information and a list of neurogastroenterology and motility centers, clinics, and programs specializing in digestive motility disorders.
Article: Dysphagia And Related Symptoms Are Frequent, Severe And Heavily Affect The Quality Of Life Of Patients With Primary Sjogren's Syndrome Dysphagia (trouble swallowing) is severe and frequent in Sjogren’s patients, unrelated to antibody status (e.g., SS-A) or disease activity, as measured by the ESSDAI.
For General Information
You can purchase these two excellent presentations from the 2022 Sjogren’s Foundation National Patient Conference:
"The Kidney, Liver, and Pancreas in Sjogren’s" by Dr. Chadwick Johr, MD
"Gastrointestinal Issues in Sjogren’s" by Dr. Lucinda Harris, MD
