Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

Tips for Managing Gastrointestinal (GI) Symptoms

Posted on Mon, Aug 22, 2016

The gastrointestinal (GI) tract is an internal mucosal surface, rich in immune system cells/antibodies and nerves, whose main function is to digest food and absorb nutrients for optimal health. Enjoying food and sharing meals is an important part of every society, but for many with Sjögren’s, it is a major challenge.

90% of those with Sjögren’s and Scleroderma have GI complaints. Findings include focal infiltration of predominantly T-helper lymphocytes with or without glandular atrophy and nerve dysfunction.SSSF_Nutrition.dms For persistent GI problems in those with Sjögren’s, a Neurogastroenterology or GI Motility Center may be an option.

Here are some tips for managing GI symptoms in Sjögren’s: 

  • Eat smaller amounts more frequently. Chew as well as possible.
  • Swallowing problems may be related to esophagus muscle inflammation (myositis), dryness, or nerve dysfunction. Soft foods, olive oil, and coconut water might help.
  • GERD is more common and due to decreased Lower Esophageal Sphincter tone (60% vs 20% normal). Avoid reclining after a meal; various anti-acids are available. See tips for reflux in the SSF Patient Education Sheet, “Reflux and Your Throat,” found on the SSF website at www.sjogrens.org.
  • Gastroparesis (delayed gastric emptying) occurs in Sjögren’s (30-70%), and, similar to Diabetes, causes upper abdominal pain/fullness/nausea. Gastric parietal cells can be destroyed leading to B12 deficiency. H pylori bacterial infection, if present, can be treated.
  • Small intestine immune attack (Celiac) or bacterial overgrowth can result in abdominal pain, cramping, bloating. Try a wheat/gluten free diet, or other food group elimination diets. Most nutrients are absorbed here. MALT (mucosal associated lymphoma) can occur.
  • The large intestine is where liquid is reabsorbed. Constipation and diarrhea can occur with Sjögren’s. Increase vegetables. Try magnesium supplement for constipation.
  • The pancreas, which releases digestive enzymes, can have low-level inflammation (20-40%) in Sjögren’s. Pancreatic enzyme trial is an option.
  • Liver – Autoimmune cholangitis (PBC, hallmark mitochondrial Ab) or Hepatitis (smooth muscle Ab) can occur in Sjögren’s. Hepatitis C virus should always be excluded.
The SSF thanks Nancy Carteron, MD, FACR, Clinical Faculty University California San Francisco, with special thanks to Mimi Lin, MD, Center for Neurogastroenterology & Motility, California Pacific Medical Center, San Francisco, California, for authoring these tips from the SSF Patient Education Sheet, GI Tips.

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Topics: Diet, Nutrition, Symptoms, Sjogren's, Treatment, Top 5 Tips, Gastroesophageal Reflux, Gastrointestinal (GI) tract

NIH Hosts Dietary Supplement Database

Posted on Tue, Feb 09, 2016

Did you know that the National Institutes of Health has a database that allows individuals to search the labels of dietary supplements?

SSF_Dietary_SupplementsThe Dietary Supplement Label Database (DSLD) is a joint project of the Office of Dietary Supplements (ODS) and the National Library of Medicine (NLM) of the National Institutes of Health (NIH).

Considering the number of Sjögren’s patients who currently take dietary supplements to aid in the management of the disease, the DSLD could prove to be a very useful tool. An individual can search products, brands and ingredients. This can allow them to review the suggested use of a particular supplement, calories and daily values as well as search other brands and combinations that might be available.

For instance, if a patient is taking fish oil and vitamin D, they could find a combination supplement rather than two separate supplements. This can result in easier maintenance of supplements and cost effectiveness for the patient.

Remember that just because an over-the-counter product is natural, this does not make it safe or appropriate. The SSF recommends that you should always discuss natural remedies with your doctor.

Click here to learn more about Sjögren’s and an Anti-Inflammatory Diet

Click here to learn more about the  NIH Dietary Supplement Database This information was provided by the NIH DSLD web page. 

Topics: Diet, Nutrition, Sjogren's, Treatment, coping with sjogren's, Natural Treatments, Anti-Inflammatory Diet

Ask the Doctor: Sjogren’s and the Benefits of Vitamin D

Posted on Tue, Jul 28, 2015

Q. I keep reading about the use of vitamin D with autoimmune diseases. How important is it for Sjögren’s patients? 

A. Vitamin D is important in bone and cartilage homeostasis. New evidence indicates that vitamin D may have extraskeletal benefits on several systems including the immune system. Autoimmune diseases such as systemic lupus (SLE), and Sjögren’s have been associated in a few studies with low vitamin D levels. However, the significance of low vitamin D levels in disease pathogenesis and prevention is unclear.

What are the sources of vitamin D? Vitamin D has two precursors, Vitamin D2 (ergocalciferol) and Vitamin D3 (cholecalciferol). Vitamin D3 is synthesized mainly in the skin by the action of ultraviolet light. Vitamins D2 and D3 are found in very few dietary sources, such as fish oils or fortified dairy products, as well as supplements.

SSF_Blog

Recommendations regarding desirable levels are based upon evidence related to bone health. Some controversy exists, but experts such as the International Osteoporosis Foundation suggest that a minimum level of 30 ng/mL is necessary to decrease the risk of falls and fracture. 

Vitamin D deficiency is very prevalent in the general population and some studies indicate a higher prevalence of vitamin D deficiency in certain autoimmune diseases. However, these studies have not been conclusive. As an example, in SLE patients, recent studies have indicated the prevalence of vitamin D deficiency to range between 38% and 96%. The wide variation can be attributed to many factors, such as the age of the patients recruited, geographic location, season at the time of the study, ethnicity, medications used and the accuracy of the vitamin D assay method used.

In Sjögren’s, few small trials have been performed to assess the prevalence of low vitamin D levels and the association with disease severity. No conclusive data has been assembled to indicate that subjects with Sjögren’s have lower vitamin D levels than healthy subjects, or to suggest a pathogenic relationship between lack of vitamin D and development of disease.

Patients with Sjögren’s can be prone to vitamin D deficiency. Photosensitivity, where exposure to ultraviolet light triggers a rash is prevented by avoiding exposure to sunlight, could contribute to lower levels of vitamin D. Furthermore, certain medications may aggravate vitamin D deficiency. Chronic corticosteroid and hydroxychloroquine use are suspected to affect vitamin D concentration and activity respectively. 

In summary, although there are no guidelines regarding optimal vitamin D levels for extraskeletal and immune system health, it would be reasonable to recommend that patients be screened for vitamin D deficiency and treated with supplementation. The American College of Rheumatology recommends a daily intake of 800–1000 IU per day of vitamin D in patients on treatment with steroids.

by Stamatina Danielides, MD

 This information was first printed in the The Moisture Seeker, SSF's patient newsletter for members. 

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Topics: sun and sjogren's, Diet, Nutrition, Sjogren's, Sun Sensitivity, Vitamin D, Lupus

Tips for Muscle and Joint Pain in Sjögren’s

Posted on Tue, May 13, 2014

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Joint and muscle pain in Sjogren’s syndrome may result from a variety of causes including inflammation, fibromyalgia, age-related osteoarthritis, vitamin D deficiency, hypothyroidism etc.

Work with your rheumatologist to identify the specific cause(s) of your pain and find the best treatment regimen for you. Maintain a positive attitude and be an active partner in the management of your pain.
The tips below will also help:

  • Become knowledgeable about your medications
  • Get a good night’s sleep
    • Maintain a regular sleep schedule.
    • Set aside an hour before bedtime for relaxation. Listen to soothing music.
  • Consider taking a warm bath before going to bed
    • Make your bedroom as quiet and comfortable as possible.
    • Avoid caffeine and alcohol late in the day.
    • Avoid long naps during the day.
  • Exercise regularly with the goals of improving your overall fitness and keeping your joints moving, the muscles around your joints strong and your bones strong and healthy
    • A physical therapist, occupational therapist, or your health-care provider can prescribe an exercise regimen appropriate for your joint or muscle problem.
    • Start with a few exercises and slowly add more.
    • Make your exercise program enjoyable. Do it with your spouse or a friend. Include recreational activities, such as dancing, walkingand miniature golf.
    • Try different forms of exercise, such as Tai chi, yoga and water aerobics.
  • Balance rest and activity
    • Pace yourself during the day, alternating heavy and light activities and taking short breaks to rest.
  • Control your weight
  • Protect your joints and muscles
    • Use proper methods for bending, lifting, and reaching.
    • Use assisting devices, such as jar openers, reach extenders and kitchen and garden tools with large rubber grips that put less stress on affected joints.
  • Use various therapeutic modalities that can relieve joint and muscle pain
    • Use heat (heating pads, warm shower or bath, paraffin wax) to relax your muscles and relieve joint stiffness.
    • Use cold packs to numb sore joints and muscles and reduce inflammation and swelling of a joint
    • Consider massage therapy.
    • Practice relaxation techniques, such as guided imagery, prayer and self-hypnosis. 
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Thank you Alan Baer, MD for these tips. Dr. Baer is an Associate Professor of Medicine, Director, Jerome L. Green Sjogren’s Center, Johns Hopkins University School of Medicine

Topics: Nutrition, Symptoms, Sjogren's, Joint Pain, Fatigue, Treatment, Top 5 Tips, coping with sjogren's, Chronic Pain

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