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Celiac.com 11/02/2017 - What is the link between the autoimmune diseases Sjögren's syndrome and celiac disease? In a study, 14.7% of Sjögren's syndrome patients were found to have celiac disease and 11.8% of non-celiac Sjögren's syndrome patients were found to have inflamed mucosa in the small intestine. With this knowledge, people who suffer from Sjögren's syndrome may be able to find relief for their symptoms with the gluten-free diet. Four million Americans are suffering from a disease they don't even know they have and their doctors don't even know to test for. Sound familiar? If you're familiar with my work as a gluten-free advocate, you have probably guessed that what I'm describing is celiac disease, an autoimmune reaction triggered by gluten, a protein component in wheat, barley, and rye. If that was your guess, you would actually be wrong: there is another underdiagnosed and common autoimmune disease that we and our doctors need to be aware of—Sjögren's syndrome, which affects the exocrine, or moisture-producing, glands. Unlike celiac disease, Sjögren's syndrome doesn't have a standardized effective treatment, but fortunately, research is demonstrating a link between these two autoimmune diseases, bringing good news for Sjögren's patients who may see relief of their symptoms by eliminating gluten from their diet. Chances are, many haven't heard of Sjögren's syndrome. This relatively unknown and underdiagnosed disease is an autoimmune disease in which the immune system attacks the tear and saliva glands of the body, reducing their production and resulting in dry mouth and eyes and other symptoms. Complications of Sjögren's include tooth decay, corneal ulcers, and non-Hodgkin's lymphoma. In women, vaginal dryness can also be a symptom. According to the UK's National Health Service, 9 out of 10 people who suffer from this condition are women, and the average age onset is between the ages of 40 and 60 years old. In a study by the Institute of Medical Technology, University of Tampere, Finland, 34 Sjögren's syndrome patients and a control group of 28 people were given a small bowel biopsy; five (14.7%) of the Sjögren's patients tested positive for celiac disease and four (11.8%) of the non-celiac patients were found to have inflammation in the mucous membrane of the small intestine. According to the study's conclusions, "The findings show a close association between Sjögren's syndrome and celiac disease." Currently, there are two classifications of Sjögren's syndrome as either primary, meaning that it has developed on its own, or secondary, which means that it has developed as the result of another autoimmune disease, such as rheumatoid arthritis or lupus. There is no "cure" for Sjögren's; researchers have identified a combination of factors—environmental, genetic, and hormonal, according to the National Health Service. There are a variety of treatments which can vary in effectiveness, including saliva-stimulating medication and eye drops. The good news is that Sjögren's patients who are found to be celiac may see the relief of their symptoms through a gluten-free diet, currently the effective and only treatment used for celiac disease. Just as with celiac disease, Sjögren's syndrome is under diagnosed relative to its frequency. As a diagnosed celiac American, I consider myself very lucky that I've been correctly diagnosed with celiac disease. With the help of advocate groups all over the country, gluten-free awareness and celiac diagnosis is on the rise. By spreading the word about the association between Sjögren's syndrome and celiac disease, we can help those with Sjögren's achieve better health and quality of life. Resources: National Health Service (UK): Sjögren's syndrome http://www.nhs.uk/conditions/Sjogrens-syndrome/Pages/Introduction.aspx National Institutes of Health: Celiac disease and markers of celiac disease latency in patients with primary Sjögren's syndrome http://www.ncbi.nlm.nih.gov/pubmed/10201480 Nutritional Healing: Articles. Sjögren's World: Links http://www.sjogrensworld.org/links.htm
So, it guess it's a long story, but I'll try to keep it short. I've been gluten free following 7 years of strictly following the diet. It seems that about 8 years ago when I had my daughter, I developed several health issues. Looking back it's hard to tell what caused what, etc, but at one point I developed mastitis and I was put on an antibiotic which caused me to develop C-Diff. After awhile, I had lots of symptoms: purpura (vit K def), positive ANA, Sjogren's antibodies. This could have all been in the works before the infections. My primary doc diagnosed Sjogren's. I felt there was more. Online research led me to believe I was having gluten issues, but not necessarily classic Celiac symptoms. (FYI - my 2nd cousin was diagnosed Celiac by biopsy.) I did Enterolab and the results said I was having issues with gluten and casein. As best I could, I adapted the diet and found that I felt better. I found a new Doctor who went from a traditional practice to a focus on nutrition and functional medicine. He did testing and I found over time (lots of visits, lots of tests) that I was deficient in Vit D, B12, ferratin, ostepenia, B1, B6, B9. He confirmed my Celiac disease without sending me to the GI doc. I also found a rheumatologist who also confirmed my "Celiac". After all this time, I still don't have these vitamins in check. I'm not vegetarian and eat a lot of meat, particularly red meat and I still can't get the ferratin and B12 up. I've been realizing the last year or two that I still have stomach issues despite following the diet - seems to be no rhyme or reason. And I developed new autoimmune symptoms. No thyroid issues. Decided to go to a new Rheumatologist nearer to where I live. Since I'm a new patient, she's questioning everything. Wants to be sure I have Sjogren's and Celiac or whatever before she starts treating me. Said one of my new symptoms is probably a magnesium deficiency or the B12. Anyway, she questioned the Celiac due to no biopsy. She sent me to a good one who has experience diagnosing Celiac. He had me start a gluten challenge. I was hesitant and honestly scared b/c I feared how sick I would be, but I guess I'm desperate for answers. He wants to confirm Celiac vs Non Celiac Gluten Sensitivity, plus the possibility of Crohn's disease or microscopic colitis. In the past I've been dry eyes, dry mouth, migraines, stomach issues, flank pain, intersititial cystitis, etc. The thing is....I've been eating gluten and dairy for just under 2 weeks. I have had limited issues. Do I feel 100% awesome?? No, but heck I'm not used to eating this way. I've been enjoying pizza and donuts, etc and what I feel mostly feels like anyone would when they are eating junk. Of course, I don't want to eat this way everyday forever, but I'm really feeling fine. I'm at a total loss. It doesn't seem like I have any issues with gluten and mild issues with dairy, but I think it best to minimize or eliminate altogether anyway. The endoscopy and colonoscopy will be at the end of the month. Has anyone else experienced this? I guess I'm wondering if I was misdiagnosed by Enterolab and well meaning doctors didn't question anything. Instead, my symptoms could be totally caused by Sjogren's and as far as not absorbing vitamins, I have been wondering about Pancreatic issues - low enzymes, pancreatic function issues, etc. This can also be caused by Sjogren's. Sj can also cause harm to the digestive system which could explain the whole thing instead of a joint diagnosis of Sj + Celiac. What do I do if he says that I don't have Celiac??? No symptoms and no villous atrophy??? Mind blown.