Adele is a registered NZ dietitian with over 24 years of advanced training and experience in various specialist areas of nutrition therapy (including gastroenterology, paediatrics, diabetes, bariatric surgery, disordered eating and oncology), mostly in the NHS, UK and the last four years in NZ.  She is currently working as a specialist dietitian for Digestive Health Clinic, which includes a dedicated national non-responsive coeliac disease specialist service. She helped develop the Standards of Care for Dietitians for Coeliac NZ and the Coeliac NZ Dietary information booklet. Alongside this, she delivers education courses for the MHT Diabetes Trust and is a passionate, trauma-trained volunteer for MentorEd; a charity who supports children who have experienced Adverse Childhood Events (ACE’s). With her MentorEd hat on, she has developed and delivered weekly cooking classes for children with various needs, in low-decile schools.

Dr Kamran Rostami is well known for his research on coeliac disease and non-coeliac gluten sensitivity. He received his MD degree from Carol Davila University Bucharest. He completed his PhD at the University of Amsterdam by which he defined the seronegative subgroup of coeliac disease and published the initial report on the correlation between serological tests and histological abnormalities in coeliac disease. This later became the inspiration and platform for avoiding biopsy approach in paediatric guidelines and recently young adults. He undertook his specialist training at Internal Medicine at the University of Groningen, the Netherlands. He continued and accomplished specialist training through the West Midlands Deanery in the UK and has been an attending Physician in the Gastroenterology Division, Department of Internal Medicine in both the UK and later at Palmerston North, New Zealand. His ongoing research interests are on gluten-related disorders and Nutrition therapy in Inflammatory bowel disease as highlighted in his publications.

Kamran and Adele presented at the Coeliac NZ Conference on the topic of "Management of non-responsive coeliac disease from a gastroenterologist and dietitians perspective." Non-responsive coeliac disease is defined as persistent symptoms, signs, and laboratory abnormalities including serology, micronutrient deficiencies or persistent/deterioration of histological changes typical of coeliac disease, despite at least 6 to 12 months of presumed adherence to a GFD.

The following questions arose from their presentations...

What are the common triggers of coeliac disease such as cross-reactivity of other grains, dairy etc?

Firstly, patients need to have a genetic predisposition for coeliac disease. The main triggers described in the literature are: a) infections, for instance, tropical sprue b) physiological stress, for instance during pregnancy c) consuming large amounts of gluten. A diet low in fibre and high in processed food are also triggers for auto-immune disorders, including coeliac disease.

Is there any way of telling how long you've had coeliac disease prior to being newly diagnosed? Do high levels in blood test results or gastroscopy results give you an indication of this?

We are led by symptoms and should a patient have experienced typical symptoms of coeliac disease for any duration before diagnosis, we would consider that it may have been part of the end diagnosis.  However, some patients with coeliac disease do not experience many symptoms and it would therefore be difficult to tell how long a person has had coeliac disease. This would also not be able to be determined through high blood levels in blood tests or gastroscopy results.

Labels that say yeast extract in marmite/vegemite are gf and are also in normal marmites so what's the difference...

Normal marmite is not gluten free as the major yeast extract used in it is extracted from brewers yeast which arises from beer making.  Beer is typically made from malted barley, wheat and rye and they all contain gluten.

Are there any tips or medication you can suggest that might help a refractory coeliac survive a long plane trip?

Not any that has yet been proven to be safe, however there is still ongoing research on this. The best is to pack extra gluten free snacks and get a doctor's letter explaining that it is necessary to take them on the plane. You may also ask the airline what precautions are being taken to ensure no cross-contamination occurs in the GF food provided.

Has there been research looking at marsh grades in non-coeliac disease but poor /UPFs diets?

Not that we are aware of.  However, it is known that a healthy lifestyle with regular physical exercises, mindfulness and a diet high in fibre and low in processed foods can be protective against autoimmune disorders.

Where can we get tested for T-cell reactivity?

This test is only indicated if a patient’s symptoms do not improve on a strict GFD guided by a well-trained dietitian. The test is usually done on a biopsy of small intestine tissue which is collected through a gastroscopy, performed by a gastroenterologist.

Is there any correlation between small bowel diverticulitis and type 2 refractory coeliac disease?

Diverticulitis in the small bowel is very rare. Diverticular disease is generally not an autoimmune disorder and it is related to age, 'wear and tear' of the bowel (mainly affecting the large bowel) and therefore not linked to type 2 refractory coeliac disease.

What are other potential reasons for elevated TTG when coeliac disease is not found?

Cross-reactivity between other autoimmune disorders, for instance, Chrons disease.

Can you develop non-responsive coeliac disease if you have been responding well to a gluten free diet for several years?

Yes. However, non-responsiveness mostly occurs at the start or within the first year of diagnosis.

Do you always use elemental 028 vs Ensure (as per on Fasano diet?)

The majority of the time, yes. The reason is explained in the table below:

ELEMENTAL vs POLYMERIC (i.e. Ensure Plus/ Fortisip)

The vast majority of our patients, tolerate Elemental 028 Extra very well and we've had minimal issues with palatability. The taste of Elemental has improved since the 1990s. We also emphasise to our patients that we use it as a TREATMENT and NOT ONLY a supplement. This aids compliance and adherence. Should a patient experience difficulties with palatability of E028, we would use a food-based diet, avoiding immunogenic nutrients and not use polymeric supplements until inflammation has settled and we are reassured that dairy intolerance is not present.  However, where a patient has true refractory coeliac disease, we would not use polymeric feeds at all. Even though E028 is more expensive than Polymeric feeds, in the long term it is more beneficial and cost-effective.

How can we get referred to the clinic in Palmerston North with non-responsive coeliac disease?

Patients can be referred either publicly or privately by their GP's or gastroenterologist. Both private and public patients will be seen promptly and receive the same treatment.  Referrals are to be sent to Dr Kamran Rostami, Consultant Gastroenterologist, Te Whatu Ora MidCentral, Palmerston North Hospital or Crest Hospital Specialist Centre, Palmerston North.

If you were unable to attend the Coeliac NZ Conference and would like to access the video recordings of the presentations these can be purchased via the website for $40 (incl gst). See here for details.