Living with Sjögren’s feels like assembling a piece of furniture from IKEA. On the surface, Sjögren’s appears as a “simple” dry syndrome, but once you put all the pieces together, you discover an often complex, overlooked, and undermanaged autoimmune disease. No offence to the world’s most convenient Swedish furniture and home décor store.
Before sharing my experience, let’s describe Sögren’s and its prevalence.
What is Sjögren’s?
Sjögren’s pronounced (SHOW-grins), also known as Sjögren’s Disease or Sjögren’s Syndrome, is a systemic autoimmune disease characterized by lymphocytic infiltration of the exocrine glands resulting in sicca symptoms (dry eyes and dry mouth). The disease also involves extra glandular manifestations, including the gastrointestinal tract:
- Extreme fatigue
- Arthritis
- Neuropathy
- Pulmonary involvement
- Renal disease
- Vasculitis
- Esophageal dysmotility
- Gastroparesis
- Atrophic gastritis
- Pancreatic insufficiency
- Gastroesophageal reflux disease
- Irritable bowel syndrome
Is Sjögren’s a rare disease?
Sjogren’s Ireland had the best answer: “Sjögren’s is not rare, but rarely diagnosed.”
Sjögren’s is as prevalent as rheumatoid arthritis affecting 0.5-1% of the population. Yet, the treatment is primarily symptomatic. Likewise, almost 25% of patients with other autoimmune diseases also live with Sjogren’s. For example, rheumatoid arthritis, lupus, Hashimoto’s, and fibromyalgia.
A Dietitian’s experience with digestive issues
For the past 30 years, Sjögren’s has influenced how I eat and enjoy meals thanks to the severe dry mouth and slow presentation of digestive issues.
Although my symptoms began in childhood with frequent parotiditis and unexplainable gut problems. My Sjogren’s wake-up call happened when I moved to Canada from Medellin, Colombia, in 2007.
I suffered from extreme dry mouth, dental decay, burning mouth syndrome, oral candidiasis, heartburn, swallowing difficulties, iron deficiency anemia and irritable bowel syndrome. My diet consisted of liquid meal replacements and crackers for almost a year. I lost an incredible amount of weight, further weakening my body and depleting my energy levels.
Thankfully, my knowledge of medical nutrition therapy armed me with the tools to improve my gut health. The Low FODMAP diet (LFD) was my first step, a novel dietary therapy at the time.
Nowadays, the LFD is an effective strategy for managing irritable bowel syndrome in adults, especially when a trained Dietitian is involved in the assessment and implementation process. When you follow the LFD on your own, you are at risk of non-compliance and negatively impacting your gut health, gut bacteria diversity and immune response.
A low FODMAP diet is low in fermentable oligosaccharides, disaccharides, monosaccharides, and polyols and consists of three stages:
1) Low FODMAP diet
2) FODMAP re-introduction
3) FODMAP personalization
For more information, check out the resources from Monash University – the Low FODMAP Diet.
Nonetheless, my diet was not the only factor exacerbating Sjögren’s. Like any other autoimmune disease, environmental factors have a significant impact on disease control:
- Uncontrolled rheumatoid arthritis
- Cultural shock
- High levels of stress while adapting to the Canadian lifestyle
- Drastic weather changes
- Debilitating fatigue
- Less physical activity
- Unawareness of an interdisciplinary care team for Sjögren’s
Top 10 digestive problems in Sjögren’s
Fast forward to 2021, the Sjögren’s Foundation conducted the Living with Sjögren’s Survey on 3622 adult patients (+18) in the U.S. to gain a greater insight into the physical, emotional and financial impact of this disease on the quality of life of the participants.
Upon reviewing the survey results, I identified 10 gastrointestinal tract symptoms that I developed at some point in my Sjogren’s journey over the past 30 years:
- Dry mouth
- Neuropathy (Possibly including delayed gastric emptying)
- Reflux or heartburn
- Choking/Trouble swallowing
- Constipation
- Diarrhea
- Dental caries/cavities
- Mouth ulcers/sores
- Dietary adjustments due to the inability to enjoy many foods
- Tooth decay
Besides, Sjögren’s also affected the ability to enjoy or taste food, leading the participants to make dietary adjustments.
Reality check
Sjögren’s seems to take a back seat in the medical and research community compared to rheumatoid arthritis (RA), systemic lupus erythematosus (SLE) and multiple sclerosis.
I’m not trying to undermine these conditions, as I have suffered the devastating effects of rheumatoid arthritis for 20 years. Thus, joint damage, chronic pain, treatment changes, disability, isolation, career changes, etc.
But, I still have treatment options to explore for RA, while the alternatives for Sjögren’s fall in the grey area of trial and error.
Individuals with Sjögren’s are often shamed for their symptoms while suffering in silence. They live with extreme fatigue, pain, depression, skin, gut and neurological disorders. All affections that are well beyond dry eyes and dry mouth.
Cristina Montoya @arthritisdietitian
Finding your tribe
I firmly believe it takes a village to thrive and survive with Sjogren’s. In 2015, I found a fantastic community of Sjögren’s warriors through the Sjögren’s Society of Canada. For the first time, I met people who understood my pain. I found my tribe. This disease was real. I felt acknowledged.
Support groups are vital to empowering patients with valuable information and new skills. Evidence shows these safe spaces lower the levels of depression, anxiety and isolation.
Every month, a group of survivors living within Ontario’s Durham region gather to share conversations, resources, products and services available within the area. So, if you live in Canada, contact the support group leaders within your Province.
Sjogren’s complexity is profound. It requires an army of interdisciplinary health care to help us thrive with the unpredictability of this disease.
Reputable websites
Facebook support groups and similar forums can be helpful in times of despair and uncertainty. The risk is that you may feel tempted to try potentially harmful interventions to your body.
The truth is that people share extreme sides of living with chronic illness: the worst and the best-case scenarios. So, you must equip yourself with reputable information to guide your care and conversations with your healthcare providers. Here is a list of my go-to reliable websites and healthcare professionals:
- Sjögren’s Society of Canada
- Sjögren’s Foundation in the U.S
- Sjögren Europe
- The British Sjögren’s Syndrome Foundation
- Asociación Española del Síndrome de Sjögren
- Sjögren’s Research Ireland
- Sjögren’s Advocate Blog by Dr. Sarah Schafer, MD and Sjogren’s patient
- Smart Patients Sjögren’s Community
- Becoming Immune Confident Podcast by Dr. Kara Wada
Beat the Sjögren’s Bloat Project
Thirty years of living with Sjogren’s and 15 years as a Dietitian has led me through many treatment and self-care paths. I’m committed to filling some of the misinformation gaps by creating resources to eat well with Sjögren’s, heal your gut and reclaim your inner bliss.
Please fill out this short anonymous survey will help me tailor the information to be relevant to you. Please don’t hesitate to reach out at info@arthritisdietitian.com
Don’t be shy and join the waiting list for the FREE Signature Program Beat the Sjogren’s Bloat in honour of World Sjögren’s Day.
If you want to learn more about my ongoing journey with Sjögren’s, listen to this SickBoy podcast episode hosted by beloved Canadians Jeremie, Brian and Taylor. I had a fantastic time chatting with “los muchachos” about rheumatoid arthritis and Sjögren’s during the height of the COVID-19 pandemic in 2020.