Coeliac Diagnosis at 63 Ongoing Symptoms

[kikimouse17]

Hello I’m posting on behalf of my dad and hoping for some advice for him. He was diagnosed with coeliac disease around ten years ago in his early 60s after his whole life suffering symptoms which were always written off as IBS until his eventual diagnosis. He has been on a GF diet since then but he is still in huge amounts of pain, and has just had his second bout in hospital with severe bladder and colon spasms needing catheter and pain management.

He is totally fed up at this point and doesn’t seem to be getting any help other than medical practitioners saying the GF diet should be stopping all his symptoms.

Has anyone else here been diagnosed that late in life and is now dealing with the effects of the wrong diet for so long on their nervous system and digestive system?

Any advice or suggestions on what to do or who to see would be much appreciated

[Dottie11]

Read up on Refractory Celiac and raise with his GP/Gastro. Treatment can be a small dose of certain type of steroid. Also not sure where you live but might be worth asking for a referral to Celiac expert. My Consultant told me if you have Refractory Celiac you will still have evidence of damage via Endoscopy so that might need to be repeated.

[kikimouse17 in reply to Dottie11]

Thank you so much this is very helpful!

[Dottie11 in reply to kikimouse17]

Your welcome. Your Dad and I were both told IBS and later diagnosed after poor health. Hoping things improve for him.

[kikimouse17 in reply to Dottie11]

Thank you Dottie. He was always suffering from his symptoms but just told IBS or was ‘all in his head’. He was relieved to finally get a diagnosis but struggling now with all the damage done over the previous 60 years. Thank you again we really appreciate it. Xxx

[Dottie11 in reply to kikimouse17]

I know how you both feel. It is great that so much more focus is put on this condition now. BUT I do think about all of us that were told "in your head, IBS etc" We have gone on to suffer far too much. Just take heart that he is not alone in that journey. Sheffield is a Centre of Excellence. xx