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"I wish everything else could be so efficient"

About: Forth Valley Royal Hospital / Dietetics

(as a parent/guardian),

My son and daughter were both separately diagnosed with coeliac disease in March 2023 and October 2023. The journey to diagnosis was painfully experienced - we have a family history so are aware how difficult this is and were relentless and persistent in achieving this for both children. But without our existing family awareness I genuinely don’t think we would have achieved a diagnosis. I would advise that explicit what you need to eat advice is provided prior to any testing… because without being guided by a consultant or dietitian I think that GPs to be issuing incorrect advice - I received it first hand and knew to ignore it! Even posting it on a publicly available website would be beneficial as I have since shared the guidance I asked for with other parents - who were also incorrectly advised by well meaning GPs. 

However since we received the diagnosis we have gone from strength to strength - and recently I am delighted that I have seen joint dietitian and paediatric consultant in a single single appointment for both children - efficiency at its best! They are from the same family, sharing the same diet so it just makes sense - I wish everything else could be so efficient! And their latest test results show that the advice and care from diagnosis is working and their results are excellent as a reflection. Thank you!

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Responses

Response from Kay Devlin, Dietetic Team Lead, Dietetics, NHS Forth Valley 2 weeks ago
Kay Devlin
Dietetic Team Lead, Dietetics,
NHS Forth Valley
Submitted on 19/03/2025 at 16:09
Published on Care Opinion on 20/03/2025 at 08:49


Hi many thanks for sharing your experience, I am sorry to hear that your journey to diagnosis was so challenging.

I am however pleased to hear that your post diagnosis experience has been more positive and this has been shared with the team- we shall discuss your whole experience as we are always looking at ways we can improve our service.

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