Non-responsive coeliac disease from a dietitian’s perspective

Adele Rostami- NZRD, Coeliac NZ Conference 2023
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 deliver weekly cooking classes for children with various needs, in low decile schools.

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As someone who had non responsive celiac disease (diagnosed as a seronegative Marsh 3b) i had am improvement during the first year and despite following a strict gluten free diet , after 4 years my atrophy was Marsh 3a. I then removed lacotse free products ( lactose intollerance)fructose intollerance ( test did it) and i developed hypothyroidism and metabolic syndrome. I do now reversed all my chronic condition with a carnivore/fish ( omega 3 diet) and ji do just eat fresh products. I also had gastroparesis with eosinophilia and severe vitamin b12/folate and even iron deficiency ( neurological degeneration).
Can this diet be followed forever ?
The only deficiency that I do have currently is Folate ( I use questran for bile malabsortion) and I have planned a visit to check for a possible hemochromatosis ( iron saturation at 60% with high ferritin) polycectemia vera: high hematocrit (53) /hemoglobin (19).
Can untreated celiac disease damage the production of red blood cell in the bone marrow even if I am just 37 ? Thansk