Managing coeliac disease from diagnosis to dietitians

So, what are the signs to look for and when should you seek help? Dr. Kim Faulkner-Hogg, Advanced Accredited Practising Dietitian helps us understand more.

In this article:

• What is coeliac disease?
• People who are at increased risk
• Signs and symptoms
• When should you seek help, and how?
• Managing coeliac disease
• What kind of specialist will I be referred to
• Where should I get help with my diet

What is coeliac disease?

Coeliac disease is when the body’s immune system reacts negatively to gluten.

This gluten reaction causes the tiny, hair-like projections (villi) that line the small bowel to become inflamed and flattened

This damage decreases the bowel’s ability to break down and absorb the nutrients provided by the food.

Gluten is found in grains such as wheat, rye, barley and controversially oats.² Oat gluten is quite different and only causes this damage in 5-8% of people with coeliac disease, hence the controversial debate surrounding this grain that is best discussed with a qualified dietitian.

People who are at increased risk of coeliac disease

Risk factors for coeliac disease include:³

• A family history of the disease
• The presence of specific genetics
• Type 1 diabetes
• Liver disease
• An existing autoimmune disease.

Signs and symptoms

The symptoms of coeliac disease are varied but can include:

• Iron deficiency anaemia and/or other vitamin and mineral deficiencies
• Stomach and digestive symptoms such as:
  • Diarrhoea/constipation
  • Nausea/vomiting
  • Excessive gas
  • Cramping
  • Bloating
  • Abdominal pain
• Non digestive symptoms such as:
  • Fatigue and lethargy
  • Brain fog or poor concentration
  • Headaches and migraines
  • Body aches and pains
  • A specific itchy, blistering skin rash
• Osteoporosis (or an easily broken bone injury)
• An autoimmune disease
• Unexplained weight changes
• Fertility issues (unable to have a baby).

When should you seek help, and how? 

According to Kim, if you’re experiencing ongoing issues with any of the above symptoms, it’s time to visit your GP for a medical review.

"It can be tempting to experiment with removing foods from your diet to see what happens with symptoms, but it’s important to rule out any medical condition that may be treatable first," says Kim.

It’s also important to distinguish between having coeliac disease vs a wheat intolerance.

Kim adds, “Many people with an intolerance just need to reduce the quantity of wheat or gluten foods to the level that their symptoms are tolerated, rather than remove the foods altogether.”

You should only start on a gluten-free diet after the diagnosis of coeliac disease and under the guidance of your GP and a specialised dietitian.

Managing coeliac disease

Currently, there are no medications to cure coeliac disease or remove the need to eat gluten-free.

The following can help to manage the disease:

• Accessing specialised dietitian-led information about gluten
• Being taught how to read food labels correctly and being aware of hidden gluten
• Understanding the possible risks associated with small amounts of gluten
• Being surrounded by family and friends who understand, support, and help advocate for gluten-free foods especially when eating socially, at family gatherings, and travelling
• Accessing support, advocacy, and information from Coeliac Australia
• Attending regular follow-ups with a healthcare team. Ideally, see your GP every 6 months until stable and then yearly after this.

What kind of specialist will I be referred to and what are the steps to diagnosis?

Kim advises that a variety of specialists will likely be involved in the diagnosis and management of coeliac disease:

1. A GP will take blood to screen for the presence of coeliac specific antibodies, and upon findings refer you to a specialist. If you’re an HBF member, you can minimise your out-of-pocket costs by asking to be referred to a Member Plus or ‘Full Cover’ gastroenterologist.
2. A gastroenterologist will investigate whether there is villous damage in the small intestine. This involves a procedure in which several tiny samples (biopsies) of the small bowel are taken, called a gastroscopy.
   
   A gastroscopy is a simple day procedure where you are placed under light anaesthetic sedation. The full procedure only takes about 10 minutes and is needed because in the majority of cases, the bowel damage present in those with untreated coeliac disease is not visible to the naked eye. The biopsies are examined under a microscope to confirm the presence of villous atrophy.
   
   This procedure is recommended for everyone. However, only if the bloods fulfil specific requirements, a diagnosis could be made without the biopsy in children.
3. Depending on your diagnosis, a dietitian can help you understand and adapt to gluten-free eating, reading labels, eating out, and inform you of the nutrients you need to be more aware of on a long-term gluten-free diet.

Where should I get help with my diet?

According to Kim, once you have a diagnosis of coeliac disease you can ask your GP or gastroenterologist for a referral to see a specialist dietitian. Or you can seek out a dietitian who specialises in coeliac disease and gluten free eating.

Kim recommends membership to  Coeliac Australia which is a registered charity, supporting and advocating for people with coeliac disease.

To get a diagnosis, am I covered?

Depending on your hospital cover you may be able to claim benefits toward hospital treatment for the investigation and treatment of the digestive system, including the oesophagus, stomach, gall bladder, pancreas, spleen, liver, and bowel.

You can learn more about hospital cover and the gold, silver, bronze and basic categories that it’s made up of here.

Extra value for HBF members: A benefit may be available towards the annual Coeliac Australia membership fee under Healthy Living Programs.^ Call 133 423 to learn more about health education memberships.

If you’re an HBF member, you can check what you're covered for by logging on to myHBF or calling us on 133 423.