This blog post summarises the key insights from the latest Virtual Education Session (VES) presented by Dr Alannah Quinlivan, a consultant rheumatologist at Southern Rheumatology and St Vincent’s Hospital. She is currently undertaking a PhD through the University of Melbourne with a research focus on gut involvement in scleroderma, with her research already being presented internationally at conferences including the Asia-Pacific League of Associations for Rheumatology and American College of Rheumatology annual meetings.

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Gut Involvement in Scleroderma: What We Need to Know

Scleroderma is often associated with skin changes – but did you know that it affects the gut in up to 95% of cases?

In recognising and managing these gastrointestinal (GI) symptoms early, quality of life can be drastically improved.

Quick overview:

  • What is gut involvement in scleroderma?

A common and often early symptom of scleroderma where the digestive system – from the mouth to the bowel – is affected, resulting in symptoms like reflux, bloating, diarrhoea, constipation and difficulty swallowing.

  • Why does it happen?

Due to gut dysmotility, where the muscles in the digestive tract stop working efficiently.

  • Who is affected?

Up to 95% of people with scleroderma – with 87% of Australians in one major cohort study showing gut involvement.

Common Gut Symptoms in Scleroderma

According to Dr Quinlivan’s research, the most frequently reported GI symptoms in Australian patients include:

  • Reflux and heartburn
  • Bloating and early fullness
  • Constipation and diarrhoea (sometimes alternating)
  • Difficulty swallowing (dysphagia)
  • Dry mouth, impacting chewing and dental health

These symptoms often appear before visible skin changes, making gut symptoms a possible early indicator of scleroderma.

How Gut Symptoms Affect Daily Life

Dr Quinlivan’s analysis of the Australian Scleroderma Cohort Study (900+ participants) found:

  • 50% reported moderate to severe gut symptoms
  • These symptoms significantly impacted social life, employment, and emotional wellbeing
  • Those with severe gut involvement were half as likely to be employed
  • Reflux, bloating, and diarrhoea were most closely linked with reduced quality of life and mental health

Managing Swallowing Difficulties (Dysphagia)

Swallowing issues in scleroderma can arise at multiple stages:

  1. Mouth Phase

Caused by dry mouth, jaw stiffness, and reduced mouth opening

Tips:

  • Sip water while eating
  • Use gravies or sauces
  • Avoid dry, salty or sugary foods
  • Chew sugar-free gum to stimulate saliva

  1. Throat (Pharyngeal) Phase

May lead to food going down the wrong pipe (aspiration risk)

Signs: coughing after eating, food stuck in the throat

Recommendations:

  • Sit upright while eating
  • Eat slowly and chew thoroughly
  • Avoid fibrous or dry foods
  • See a speech pathologist for swallowing assessment and retraining

  1. Esophageal Phase

Impaired esophageal movement (seen in 85% of patients)

Signs: food getting stuck in chest, regurgitation, vomiting

Management:

  • Eat smaller, well-chewed meals
  • Avoid eating before bedtime
  • Elevate the head of the bed
  • Medications like domperidone (Motilium®) can help early-stage symptoms

Reflux in Scleroderma: Why It Happens & How to Manage It

Why does reflux occur?

-Weak lower esophageal sphincter

-Poor esophageal and stomach motility

-Delayed stomach emptying

Common Signs:

-Heartburn

-Acid or bitter taste in the mouth

-Regurgitation, especially at night

Management Strategies:

  • Lifestyle changes

–Avoid acidic, fatty, and spicy foods (e.g. tomatoes, citrus, soft drinks, fried foods)

-Wait at least 3 hours after eating before lying down

-Sleep with head of the bed elevated

-Eat smaller evening meals

  • Medications

*Speak to your GP or rheumatologist about the most appropriate reflux management*

  1. Proton Pump Inhibitors (PPIs) (e.g. Nexium, Somac, Losec):
  • Most commonly used
  • Take 30 min before food or 3 hrs after, on an empty stomach
  • Up to 80% reported benefit
  • 40% use them twice daily
  • Stopping often causes symptoms to return – 70% restarted after symptoms worsened

Proton Pump Inhibitors (PPIs) have significantly reduced the rate of complications such as esophageal strictures*

*The Link Between Reflux and Strictures:

Before medications like PPIs became widely used in Australia, esophageal strictures (narrowing due to scarring from acid exposure) were common. Dr Quinlivan’s study revealed:

  • People diagnosed before 1990 had a 24% chance of developing strictures
  • Those diagnosed after 2000 had just a 10% chance
  • Early and ongoing reflux treatment can prevent long-term complications
  1. Histamine-2 Receptor Antagonists (e.g. Nizatidine/Nizac):
  • Can be added at night
  • Improves symptoms further when used alongside PPIs
  1. Other reflux meds:
  • Antacids like Mylanta, Gaviscon
  • Motility agents like Motilium (Domperidone) – used less, with mixed results

Why Treat Reflux Aggressively?

It’s not just about comfort:

  • Uncontrolled reflux can worsen interstitial lung disease (ILD) in scleroderma
  • PPIs (and adding Nizac) were linked to improved survival in those with scleroderma + ILD (Australian Scleroderma Cohort Study)
  • PPIs reduce acid damage, though they don’t fix the root muscle/sphincter problem

Common Issues and Clarifications

  • NSAIDs (e.g. ibuprofen, voltaren, celebrex): Worsen reflux – avoid if possible
  • PPIs and stomach folds: Can occur with long-term use; discuss with your doctor, but benefits usually outweigh risks in scleroderma
  • Dry mouth: Common in scleroderma; worsened by some antidepressants (e.g. Endep/Amitriptyline)
  • Face/neck involvement: Yes, even in limited scleroderma, face and mouth are commonly affected – including dental care and eating

Gastroscopy (upper endoscopy) is recommended when reflux isn’t improving with medication.

Research Updates

Nerve signaling in GI tract is impaired by antibodies in scleroderma

Studies suggest smooth muscle atrophy in the gut – irreversible

Still no evidence that motility agents or immune suppression fully reverse gut symptoms, but more research is coming (especially from the U.S.)

Dietary Approaches

Low FODMAP diet:

  • May help with bloating, diarrhea, SIBO (Small Intestinal Bacterial Overgrowth)
  • Effectiveness is individual; best done with a dietitian
  • Don’t stay on strict FODMAP long-term – reintroduce tolerated foods
  • Gut microbiome: Altered in scleroderma, but unclear if it’s a cause or result. Research is ongoing in this area.

Where to Get Help

  • Pathways Telehealth Nurse Service (a free Australia-wide, nurse-led support for scleroderma patients)
  • Your rheumatologist or GP
  • Speech pathologists, dietitians, and gastroenterologists with experience in autoimmune disorders

For Dietitian Referrals & Hospital Care:

-Ask your rheumatologist for a referral to hospital-based dietitians, especially at public hospitals with scleroderma clinics (e.g., St. Vincent’s, Monash).

-Tasmania patients: Fall under Scleroderma Victoria and should receive communications, including surveys.

For Dental Support for Scleroderma:

-Royal Dental Hospital in Melbourne has an oral medicine service for scleroderma patients.

-Patients need a referral from their rheumatologist, ensuring scleroderma is noted in the referral.

-Scleroderma Victoria can help facilitate the process if needed.

Key Takeaways for People Living with Scleroderma

  1. Gut symptoms are common and often appear before skin symptoms
  2. These symptoms can negatively affect mood, employment, and social life
  3. Early management improves outcomes – lifestyle changes and medication are both crucial
  4. Don’t ignore symptoms like difficulty swallowing or reflux – see your GP, rheumatologist or gastroenterologist
  5. Scleroderma GI involvement is complex and varies widely – there is no one-size-fits-all approach
  6. Access support — including telehealth nursing services and speech therapy referrals

FAQs

What foods should I avoid if I have scleroderma-related reflux?

Tomatoes, citrus, carbonated drinks, spicy foods, and fatty meals can worsen reflux.

Should I sleep flat if I have reflux?

No. Sleep with your **head elevated** and avoid eating within **3 hours of bedtime**.

Can reflux in scleroderma cause long-term damage?

Yes, if left untreated, it can lead to **esophageal strictures** or aspiration pneumonia. Medication and lifestyle changes help reduce this risk.

What is gastroscopy (EGD) used for?

Uncontrolled reflux, dysphagia, suspected strictures, iron deficiency, Barrett’s esophagus or suspected bleeding. Not needed routinely.

Where can I find a dietitian?

Some work in public hospitals or through gastroenterologists but there are no scleroderma-specific ones widely available yet. Ask your rheumatologist for a referral to hospital-based dietitians.

For those living with Scleroderma, staying updated and informed can make a world of difference. Connecting with others can also be hugely beneficial. Find out more about support in your area here.

If you’d like to gain firsthand knowledge, our National Education Sessions and Virtual Education Sessions are available to you at no charge. Our Virtual Education Sessions are held every month through Google Meet. You can sign up for these free Virtual Education Sessions here.

These sessions provide an opportunity to engage with medical professionals and seasoned legal experts who will address common inquiries about Scleroderma and related topics.