A Question For British Celiacs (Coeliacs) Re: Nhs Follow Ups

[cristiana]

Just wondering, can any British celiacs (coeliacs!) let me know if I will have to see my NHS gastro consultant forever more.  I was diagnosed about a year ago and so far have had to see him in September, next appointment is in April.  The last time I saw him he was very pleased with my blood test results, thankfully, but I have another lot lined up before I see him next month.  I find all this a bit stressful as prior to my diagnosis my blood results gave the doctors great cause for concern and I dread there being a problem again.  Do we have to do this six month testing for the rest of our lives?

[Kate Hardie]

Just wondering, can any British celiacs (coeliacs!) let me know if I will have to see my NHS gastro consultant forever more.  I was diagnosed about a year ago and so far have had to see him in September, next appointment is in April.  The last time I saw him he was very pleased with my blood test results, thankfully, but I have another lot lined up before I see him next month.  I find all this a bit stressful as prior to my diagnosis my blood results gave the doctors great cause for concern and I dread there being a problem again.  Do we have to do this six month testing for the rest of our lives?

Hello, My little boy was diagnosed with Coeliac Disease 3 years ago. Our experience of the NHS process living in the UK so far has been that we visit the paediatrician every 6 months for a review, weight/hight measured and general conversation to see how our little boy is adapting and how we are managing. I believe we have to do this until he is 18yrs old with the intention that it will reinforce to our son how important it is to manage the auto-immune disease. The paediatrician said we would not need a repeat blood test or biopsy though as there was a very strong indication that he had coeliac disease. It sounds like you have had a very stressful experience at an already stressful time. If I can help answer any other questions please ask. All the best. Kate.

[cristiana]

Hi Kate - thanks so much for your helpful post.  It looks like it is your first one, too, so welcome to the forum!   I see that it looks quite a road ahead but I guess it is much better your son and I know what we have got and the follow ups will help keep us on the straight and narrow.  I am in my mid-forties so after years of not feeling well and unwittingly making myself a lot worse in the process, eating lots of gluten products to boost my energy-levels, I felt like kissing the doctor when she gave me my diagnosis - it was an answer.   I guess I have just acquired a blood test phobia en route.  Not the needle but the wait and then wondering what the news will be next time.  I am glad your little boy doesn't have that but I supposed for us who have only found out in mid-life a lot more can go wrong because of the damage of forty years plus of gluten.  Thank you again.