sjogrens blog

Is there a diet that helps Sjogren's Syndrome?

2012-02-18T18:57:00.004-08:00

Most doctors and specialist would say there is no specific diet for Sjogren's Syndrome and just to eat a healthy diet. Some may say to avoid your own known allergens. (Mine are dairy and wheat) This is due to the connection of SS to the immune sysytem.

Here at Sjogren's blog I will be highlighting some specific diets. This does not mean I have tried them or endorse them, I am just talking about them.

Dr. West has a Protocol for Sjogren's Syndrome which includes eliminating all milk, wheat, and gluten products for 30 days and helping you identify if these are triggers to your Sjogren's or not. You see every one is different. But you knew that, right?

Eye complications in Sjogren's Syndrome

2012-02-18T16:35:00.000-08:00

When I came out of the anasthetic, after the operation, my eyes were really dry and sore, especially one of them. I thought I must have had my eye open or had been leaning on that eye or something as it just didn't seem right. I now know that Sjogren's Syndreome can have this complication and the surgeon and anesthetist should have been told I had Sjogren's. The moral of the story is no matter how mild or under control Sjogren's is these doctors need to know you have it if you are having any operation.
After my operation I needed to use eye ointments which are thicker than artificial tears. Because they moisturize and protect the eye for several hours. They may blur your vision so they are most effective during sleep.

Venus William's attempts to beat Sjogren's Syndrome

2012-01-06T01:15:00.000-08:00

"Williams withdrew from September's U.S. Open with Sjogren's, a chronic disease where white blood cells attack moisture-producing glands and can cause dysfunction of organs and body systems.

The five-time Wimbledon champion, who changed her diet to include more vegetables after suffering fatigue from the disease, said last month that she hoped to return to the tour full-time in 2012 and to top the rankings. — Reuters" Read the full article from December 21st, 2011.

There is a wide variety of views regarding diet and Sjogren's Syndrome. Some people believe that modifying your diet can help Sjogren's Syndrome but there is no specific "Sjogren's diet". Here you will find a random variety of suggestions regarding diet. If you know of any more please let me know.

As Sjogren's depletes the moisture-producing glands keeping hydrated is extremely important.

Water is the best beverage to drink.

Reduce caffeine

Fruits and vegetables that are high in water content may be useful to hydrate the body. Some of these foods include celery, watermelon, peaches and cucumbers. Many people who have this condition feel that removing wheat and dairy reduce some symptoms.

Diet & Food Tips from Sjogren's Syndrome Foundation

Anti inflammatory diet at Sjogren's Syndrome site

Anti-Inflammatory Diet Tips from Dr Andrew Weil

Dr. West's Protocol for Sjogren's Syndrome

New Year Wishes

2012-01-01T03:16:00.000-08:00

Wishing you

a world

of moisture

New Year's Resolutions for Sjogren's

2011-12-31T16:13:00.000-08:00

These are my own personal goals to help manage my Sjogren's better and have a healthier year ahead:

1. Go to sleep at a regular and earlier hour

2. Drink more water throughout the day

3. Eat more fresh food - salads and fruits

HOPE YOU HAVE A GREAT NEW YEAR

Conditions often seen in conjunction with Sjogren's Syndrome

2011-12-27T01:22:00.000-08:00

Adie's pupil
Anemia
Arteritis
Biliary cirrhosis
Blepharitis
Candidiasis of mouth
Carpal tunnel syndrome
Chronic active hepatitis
Chronic interstitial cystitis
Dermatomyositis
Esophageal reflux
Fibromyalgia
Progressive systemic sclerosis or Scleroderma
Lymphoma: Non-Hodgkins
HTLV-1 Human T-cell lymphotrophic virus, Type I
Lymphoma, malignant (non-Hodgkin's)
Polyclonal hypergammaglobulinemia - a rare blood condition
Polymyositis
Systemic lupus erythematosis
Rheumatoid Arthritis
Vasculitis (of which there are many kinds)

I have made bold the ones I have and I am refusing to get any more.

RESOURCES:

NEUROMUSCULAR DISEASE CENTER Washington University, St. Louis, MO USA
Sjogren's and its treatment by Dr. Robert Fox and colleagues at the Scripps Clinic, and updated/modified by Dr. Robert Bennett.

SJOGREN'S SYNDROME BOOKS

2011-12-20T23:17:00.000-08:00

A Body Out of Balance by Nancy Carteron & Ruth Fremes

Medifocus Guidebook on: Sjogren's Syndrome Elliot Jacob PhD. (Editor)

Positive Options for Sjogren's Syndrome: Self-Help and Treatment by Sue Dyson

The New Sjogren's Syndrome Handbook (Sjogrens Syndrome Foundation) by Daniel J. Wallace

The Sjogren's Syndrome Survival Guide by Teri P. Rumpf & Katherine Morland Hammitt

Understanding Sjogren's Syndrome by Sue Dauphin

Do you know any others?

Return of Sjogren's Syndrome

2011-12-19T22:29:00.000-08:00

Stephen McPhail will miss this weekend's Championship football match in Cardiff City, Wales due to the Sjogren's Syndrome which he has suffered from in recent months. Read More...
Read about other celebrities with Sjogren's Syndrome.
Here 5 people with Sjogren's Syndrome talk about it at The New York Times Health Guide

Scientists identify protein sorting mechanism used by salivary gland

2011-11-08T12:21:00.000-08:00

This research could lead to advanced therapies for patients with dry mouth.
University of Louisville researchers are one step closer to helping millions of people whose salivary glands no longer work because of disease or damage from treating diseases.

Prof. Douglas Darling, PhD, Department of Oral Health and Rehabilitation, and his team identified a protein sorting mechanism used by the salivary gland. The scientific discovery could form the basis for advanced therapies for patients whose salivary glands are damaged or no longer function due to radiation therapy, prescription drugs or Sjogren's Syndrome - an immune system disorder often defined by its two most common symptoms - dry eyes and a dry mouth. Read full article at Medical News.

Do you have digestion problems and a dry mouth?

2011-11-08T12:01:00.000-08:00

Did you know digestion begins with the saliva in your mouth.
So it stands to reason if you have concerns with your salivary glands, as people with Sjogren's do and some other diseases, it may well affect the rest of your digestion.

"The largest of the salivary glands - the parotid - secretes important proteins into the saliva. As with all salivary glands, it has multiple secretion pathways, therefore it must sort proteins destined for saliva into the correct pathway for secretion. This can be tricky as there are seven possible pathways. One pathway takes proteins to the salivary duct, other pathways carry different proteins to the 'back' side of the cell to be secreted into the blood or to form a supportive matrix for the cells. Transport along these pathways occurs by sorting the proteins into vesicles (hollow membrane sacs) that carry their "cargo" to the correct destination." Medical News

So you can see this is a complex process and only the initial process of food digestion. Food is our fuel, and gives our bodies the substances they need to work well. But before food can do that, it must be digested into small pieces the body can absorb and use.
So Sjogren's is most probably affecting my digestion and energy levels and I thought it was just the mouth and eyes!

New dry mouth treatment

2011-11-08T03:44:00.000-08:00

I am always thirsty,
my tongue often has a burning feeling
and my mouth is dry no matter how much water I drink.
40 percent of American adults have similar symptoms!

A clinical trial using an all-natural lozenge to treat dry mouth, may change all that. It is conducted by Georgia Health Sciences University College of Dental Medicine.
"These patients' mouths are as dry as if you've closed the faucet, and we want to turn that faucet back on," said Dr. Stephen Hsu, Molecular and Cell Biologist and co-investigator of the study. "The cells and glands that produce saliva are still there, they're just not working." Continue reading

The cause of Sjogren's Syndrome

2011-11-03T02:10:00.000-07:00

The cause of many auto immune conditions is not clear. A combination of factors cause something to go wrong with the immune system. These factors relate to heredity, hormones, viral or bacterial infections, loss of immune tolerance or the nervous system.

The cause of Sjogren's is not clear either. The white blood cells, called lymphocytes, attack and damage the moisture-producing glands - mainly the tear and saliva glands. This causes dry eyes and dry mouth. Sometimes the skin, sinuses, airways and vaginal tissues are also affected, causing dryness in these areas. Sometimes the white blood cells damage other organs, including lungs, kidneys and liver.

Latest developments in Sjogren's from Garvan Institute

2011-10-05T03:43:00.000-07:00

An important breakthrough, that will enable development of more tailored treatments for Sjogren's Syndrome, has been made by Australia's Garvan Institute.
"Recently, Garvan researchers identified sub-forms of Sjögren’s syndrome that are triggered by mechanisms that to date have been thought to have little to do with this disease. Sjögren’s syndrome is believed to be caused by improper regulation of two immune cell types, T and B cells, which comprise the ‘adaptive’ half of the immune system that responds specifically to antigens (foreign substances). Indeed, in many patients this is the case.
Garvan’s scientists have shown that many patients suffering from Sjögren’s syndrome have high levels of something called B cell-activating factor (BAFF) in their blood serum, as well as locally in their glands. BAFF plays a critical role in B cell survival and immune responses." See full article.

Venus William's about Sjogren's

2011-10-03T15:19:00.000-07:00

"I'm really disappointed to have to withdraw from this year's U.S. Open," Williams said in a statement. "I have recently been diagnosed with Sjögren's syndrome, an autoimmune disease which is an ongoing medical condition that affects my energy level and causes fatigue and joint pain...I enjoyed playing my first match here and wish I could continue, but right now I am unable to. I am thankful I finally have a diagnosis and am now focused on getting better and returning to the court soon." Venus Williams in USA Today.

The difference between primary Sjögren’s and secondary Sjögren’s?

2011-09-11T04:18:00.000-07:00

Sjögren’s syndrome is usually classified as either primary or secondary. All people with Sjögren’s can experience severe discomfort and complications.

Primary Sjögren’s occurs by itself and causes early, gradual and progressive decrease in the gland function in the eyes and mouth. It can include a variety of extraglandular conditions involving dysfunction of the heart, lungs, liver, renal system, nervous system, muscles, joints, skin, vascular system and blood.

Secondary Sjogren's occurs in people who already have another autoimmune connective tissue disease, such as rheumatoid arthritis,vasculitis or lupus. These people then develop dry eyes and/or dry mouth.

Further reading:

Similarities and differences between primary and secondary Sjögren's syndrome Research report at PubmedNeurological Manifestations Of Sjögren's Syndrome by Steven Mandel, M.D.

Difficult diagnosis in Sjogren's syndrome

2011-08-31T23:45:00.000-07:00

This disease, Sjögren's syndrome, affects over three million Americans and is a common autoimmune disorder but how many people have heard of it?
Few people know how to pronounce it, let alone have heard of it and doctors rarely consider it when patients describe their symptoms. Apparently medical students do not learn much about Sjögren's and the symptoms are wide and vary from patient to patient. All of this leads to an average six years delay before diagnosis.

This is a dilemma as early diagnosis is important especially as people with Sjögren's have a higher risk of developing lymphoma. If they knew they had Sjogren's they could be alerted to the early warning signs of lymphoma cancer.

International Sjögren's Syndrome Registry

2011-08-13T15:24:00.000-07:00

Sjögren's Syndrome International Collaborative Clinical Alliance (SICCA) is a worldwide registry that aims to:

develop standardized diagnostic criteria for Sjögren's syndrome (SS).

oversee the collection, processing and storage of clinical data and biospecimens (tears, saliva, blood, minor salivary glands) from individuals with SS.

promote research into Sjögren's syndrome to help diagnosis, epidemiology, cause, prevention and treatment.

More information about the worldwide International Sjögren's Syndrome Registry.

SYMPTOMS OF SJOGREN'S SYNDROME

2011-08-09T05:03:00.000-07:00

Symptoms of Sjogren's Syndrome (SS) vary from person to person. No one person has all the symptoms listed. Some people have mild dry mouth and eyes and extreme muscle pain and others have only dryness and no muscle pain, making SS harder to diagnose.

Signs and symptoms of Sjogren's Syndrome may include:

Dry eyes
Dry mouth
Light-sensitive eyes
Corneal ulcers
Fatigue
Enlarged glands — especially salivary glands, located behind your jaw and in front of your ears
Difficulty swallowing or chewing
Change in sense of taste
Hoarseness
Oral yeast infections, such as candidiasis
Irritation and dryness in your nose
Dry skin
Skin rashes
Vaginal dryness
Dental cavities
Dry cough
Joint pain, swelling and stiffness
Muscle pain - especially on use
Nerve pain
Damage to tissues of lungs, kidneys and liver

While Sjogren's Syndrome cannot be cured many of the symptoms such as dry eyes and mouth can be managed.

Dr Peter D'Adamo explains SS:

2011-08-02T00:24:00.000-07:00

"Sjögren's syndrome is a chronic disorder of unknown cause characterized by a particular form of dry mouth and dry eyes. This loss of tears and saliva may result in characteristic changes in the eyes (called aqueous tear deficiency or keratoconjunctivitis sicca) and in the mouth with deterioration of the teeth, increased oral infection, difficulty in swallowing, and painful mouth. There are many different causes for dry eyes and dry mouth. When they occur as a result of an "autoimmune" process, the condition is called Sjögren's syndrome, which usually occurs in middle-aged women and has prevalence in about 1 in 500 persons. Patients may also have inflammation of the joints (arthritis), muscles (myositis), nerves (neuropathy), thyroid (thyroiditis), kidneys (nephritis), or other areas of the body. Also, patients may have severe fatigue and disruption of their sleep pattern. Also, the blood of Sjögren's patients may contain antibodies directed against normal cellular substances such as nuclear antigens and immunoglobulins. Therefore, this disease is termed an "autoimmune" disorder to denote the apparent reaction of the immune system against the patient's own tissues." Dr D'Adamo's site explains why he recommends the use of Fucus, Nettle Root and Probiotics to help ease the symptoms of SS.

Sjogren's Day

2011-08-02T00:08:00.000-07:00

Sjogren's Day came and went and did anybody really notice?
July 23rd was World Sjögren's Day!
This day was chosen as it commemorates Dr. Henrik Sjögren's birthday and he discovered and named Sjogren's Syndrome.
What was done about Sjogren's syndrome that you noticed? Please post in comments.

What is autoimmunity?

2011-07-30T02:05:00.000-07:00

Auto immunity is an overactive immune response of the body against substances and tissues normally present in the body. In other words, the body attacks its own cells. It is caused by a reaction similar to allergy where the immune system reacts to a normally harmless thing. In autoimmuny, the immune system reacts to normal "self" body tissues. There are more than 40 human diseases classified as autoimmune diseases. Sjogren's syndrome can develop at any age but most people are older than 40 at diagnosis and unfortunately have had symptoms for a long time. The condition is more likely to occur in women than in men and can even affect children. There is no cure for Sjogren's syndrome, but many of the symptoms can be treated.
From Auto immune Disorders

What to do for dry eyes and dry mouth

2011-06-21T16:14:00.000-07:00

Yesterday was extremely windy and it is the winter solistice here and people with Sjogren's do not cope well with heaters and wind as it dries them out even more. Today I have dry eyes, blurred vision, eye discomfort, dry mouth, swollen glands behind the jaw and difficulty in swallowing and I am very thirsty and fatigued.

I will use more mouth spray lubricants* for dry mouth and more drops for my eyes even though I always wonder if these things actually help much.
I definately need to get and use a humidifier.
More ideas for dry eyes.
More ideas for dry mouth both from (NIAMS) National Institute of Arthritis and Musculoskeletal and Skin Diseases
*The mouth spray lubricants are a saliva substitute that try to mimic saliva by making the mouth feel wet. You swallow them sooner or later. "It is best to use these products rather than water when awakening from sleep: They reduce oral symptoms more effectively, and they do not cause excessive urine formation." Interesting information from Is there any treatment? showing that they do have some benefit over just sipping water, but sipping water is important too.

Treatment of Primary Sjögren's Syndrome Reviewed

2011-05-03T04:38:00.000-07:00

"There is a very low level of evidence for the majority of drugs currently used in primary Sjögren's syndrome, according to the results of a systematic review reported in the July 28 issue of the Journal of the American Medical Association." Read more of this 2010 article by Laurie Barclay, MD, at Medscape News.

What is the prognosis? *

2011-04-13T14:46:00.000-07:00

The symptoms are many and varied - every person may have a different combination of symptoms however dryness, in one of it's forms, is usually a common symptom.

Sjögren's syndrome can damage vital organs of the body with symptoms that may remain stable, worsen, or go into remission. Some people may experience only the mild symptoms of dry eyes and mouth, while others go through cycles of good health followed by severe disease.

Many patients are able to treat problems symptomatically. Others are forced to cope with blurred vision, constant eye discomfort, recurrent mouth infections, swollen parotid glands, hoarseness, and difficulty in swallowing and eating. Debilitating fatigue and joint pain can also seriously impair quality of life.

It is difficult to predict the course that the condition may take.

* Prognosis is the probable course and outcome of a disease, especially of the chances of recovery.

Trying gluten free again

2011-04-13T05:37:00.000-07:00

I do not remember what happened last time and why I stopped but I am going gluten free again. I now know that it is not a cure but it can help reduce some symptoms. I also understand that a small percentage of people with Sjogren's have inflammed small bowel mucosa similar to Coeliac disease.
The reason why I decided to try this again is the puffiness and aching I get in my fingers and toes after eating wheat ( which I rarely do). This make me think there is some dietary connection for me.
I am also going to add green tea on a daily basis as I have just read of a Dr who believes it can reduce inflammation in autoimmune conditions. Wish me luck and stay posted.

Who Gets Sjögren's Syndrome?

2011-04-12T16:22:00.000-07:00

It is probably hard to know these facts but it is estimated that 1 to 4 million people have the disease Sjogren's Syndrome in the USA alone and 90 percent of those are women.
It can occur at any age, but it usually is diagnosed after age 40 in people people of all races and ethnic backgrounds. It's rare in children, but it can occur.

Sjögren's syndrome was named after the Swedish ophthalmologist Henrik Sjogren.
He was born in 1899 in Koping. "He became a doctor in 1927 and served in various hospitals in Stockholm. 1933 Henrik Sjögren defended his thesis, written in German: "Zur Kenntnis der keratoconjunctivitis sicca. " From 1936 until his retirement in 1967 worked Henrik Sjögren, who head for the eye department of Engineering, then he moved to Lund.

Henrik Sjögren was honorary professor at Gothenburg University 196 1st In May 1986 he was honorary chairman at the first International Seminar in Copenhagen, Denmark. Henrik Sjögren died in Lund on 17 July 1986" This info translated from the Swedish site

Blood tests that may be required for diagnosis

2011-03-31T04:17:00.000-07:00

•ANA (Anti-Nuclear Antibody)
70% of Sjögren’s patients have a positive ANA.
•RF (Rheumatoid Factor)
•SS-A (or Ro) and SS-B (or La)
These are the antibodies for Sjögren's.
•ESR (Erythrocyte Sedimentation Rate)
Measures inflammation.

Diagnosis of Sjogren's Syndrome

2011-03-31T04:04:00.000-07:00

A rheumatologist diagnosed my SS using a Schirmer's Test. He placed a small, thin paper under my lower eyelid to check the dryness of the eyes. It was very simple and quick and done in his office and scored to tell the amount of dryness in the eye.

Results of a Schirmer's test:

1. Normal which is 15 mm
2. Mild which is 14-9 mm
3. Moderate which is 8-4 mm
4. Severe which is 4 mm

It was this result of 5mm and my symptoms that confirmed the syndrome as no single test is specific in diagnosing SS. It was followed with a blood test to show antibodies.

The rheumatologist said I had primary Sjogren's.

Synonyms of Sjogren Syndrome

2011-03-20T20:46:00.000-07:00

You think Sjogren's Syndrome is strange sounding well have a look at these, they are other names used for it in the medical profession:

Dacryosialoadenopathia atrophicans
Gougerot-Houwer-Sjogren
Gougerot-Sjogren
Keratoconjunctivitis Sicca
Keratoconjunctivitis sicca-xerostomia
Secreto-inhibitor-xerodermostenosis
Sicca Syndrome

From NORD - National Organization for Rare Disorders

Diagnosis

2011-03-20T04:57:00.000-07:00

I remember clearly the day I was diagnosed with Sjogren's Syndrome - where I was, what the room was like and how relieved I was to finally have a diagnosis. My husband said "I have never seen anyone so pleased to be told they have an illness." My mother said "Why do all the things you get have such weird names?"
I was very pleased because I had finally found out I was not going crazy and there really was something that caused all these weird symptoms:

eyes that felt gritty
a burning tongue
hoarseness
constant sore throat
loss of taste and hearing
many dental cavities
painful intercourse
itchy skin
constipation
light-sensitive eyes
fatigue
joint pain and stiffness
muscle pain and nerve pain
increased sensitivity to cold.

I was pleased because I'd had these symptoms for many years with no relief. As far as strange sounding diseases I knew that many diseases had strange names and I was soon to learn that this one was named after a Swedish doctor named Henrik Sjögren.