1st TTG Coeliac antibody result and NHS cutbacks

Had the results of my 1st antibody tests today after 3 months on the gf diet result came out at 3.2, I was told between 0 and 7 was normal. Very pleased because my initial blood test before biopsy was higher than the meter could read in the laboratory. Unfortunately my ferritin levels are still low considering I have been taking 644mg of iron a day. I wonder how long this should take to improve.

I was referred straight back to the GP from the Gastro for my future care, apparently it is no longer PCT policy to take a biopsy after a year on the GF diet to check the villi. I got the impression the GP hasn't done a follow up before.I am concerned to find out how will I know if I am well on the inside?

Has anyone else had any experience of this situation.

5 Replies

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  • Hi there, I live in West Yorkshire and I asked my doctor to refer me to a Gastro for follow up care which he did. The Gastro was happy to do a follow up biopsy - after 6 months and has also booked me another appointment in 6 months to check progress. I guess it's very much a case of individual doctors and gastro's as well as individual care trusts. I think you need to keep pushing for one yourself maybe through another doctor.

  • I cannot even get them to do a biopsy on my three year old, even though he has been clearly intolerant (at least) to wheat and gluten since he was one. We have seen several GP's and paediatrician's but none of them feel the need to do it - because he is 'doing well' at the moment. But that is only because I am super vigilant about his diet and keep him away from all of his triggers! Everyone tells me he may just be intolerant and may just grow out of it. They say we should consider 'challenging' him again with the wheat products in a year or two to see. But if he has Coeliac he won't grow out of it, so we could be making him ill for nothing!

    I think the medics are reluctant to uncover all the cases out there because the NHS would probably collapse under the strain. Good luck with your fight, keep pushing them. I will too.

  • I have never had a follow up endoscopy. The first was conclusive and am followed up yearly at the GI clinic..

  • I was diagnosed 18 years ago and had another upper and lower endoscopy + blood test 6 months later which showed that my villi had recovered as had my iron levels. I then had another biopsy a couple of years later and have had an annual check up. But at this years check up I was told that the PCT had directed that an annual check up was no longer necessary and to see my GP for an annual blood test. My Gastro also said reassuringly that should I have any other issues then all I had to do was ask to be referred to him from my GP. I have also had 2 bone density scans.

    So what I would recommend that you do is ask your GP about having a bone scan and if your iron levels remain low after 6/12 months then ask to be referred back to the Gastro.

    Lastly good luck and don't be afraid to ask your GP about your issues.

  • Thank you all for your comments, I'll speak to my GP about future monitoring

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