6 month follow up this week - what should I be asking for ?

[ianwoowoo]

Hi All,

I am seeing a hospital gastro on Thursday which coincides with it being 6 months since my diagnosis. I wondered what sort of ongoing checks and care everyone gets and what is the minimum I should expect. My doctor didn't seem that bothered when I said that a lot of people seem to recomend a follow up blood test and biopsy after 6 - 12 months to check all is well.

Any comments and suggestions would be welcomed.

[Hidden]

Hi Ian, your gastro is a gut specialist and understands CD whereas your GP is an over worked General practitioner.

So your gastro will ask how you feel and will tell you about a follow up biopsy and talk to you about concerns that you have. Whether they they think that you need iron supplements, calcium supplements and vitamin supplements etc. You will then see a nurse who will take a blood test which will test your iron and mineral levels, the results of the tests will be with your GP in a couple of weeks and they will give you a prescription for any supplements that you need.

So I would write down the things that are still bothering you like how you feel health wise and when do they think that you will feel better because I believe you still aren't feeling tip top yet and you could ask their opinion on oats.

I've always got on well with my gastro and have total trust in their judgement they see coeliac day in and day out so they have seen it all before and what impresses them is coeliac who obviously stick to the diet.

Lastly just remember you are in the system now, so they are on your side.

And good luck.

[ianwoowoo in reply to Hidden]

Thanks Jerry,

I will be taking a list of my somewhat 'silly' questions but nevertheless questions I would like answered.

I am feeling much better of late - I cut out the breakfast cereals that CUK say were OK but contained Barley Malt Extract, stopped taking the vitamin C and Iron supplements that had Maltodextrin in and also started on Vitamin D3 supplements as directed by my GP following my bone scan results. Not sure if any or all have had an effect but I am able to run to the point of being tired where as before I didn't have enough get up and go to push myself to be fatigued - if that makes sense.

Anyway we'll see if he has any news for me and I'll let you know. The bad thing about the internet is that you can end up with so much info. you need someone to sit you down and talk about you!

[1stgls]

Follow up?????? what would that be!!!!!!!!! I've had no dietician referral, no follow up! the only thing I have had done was by a trainee GP and he was out to get "brownie points" by setting up the Coeliac data base in that surgery and these were the yearly blood screens ---- which have never been done routinely---I am assuming that now he has left we coeliacs will be left to our own devices again

[ianwoowoo in reply to 1stgls]

Hi there, I think from general feedback on here you need to be the one who asks the questions to get the ball rolling and make a nuisance of yourself. I saw one of the senior doctors who just referred me straight a gastro at the hostpital for follow up care, maybe so he doesn't have to be bothered with me.

[jennyann]

Hi ianwoowoo

Wow a follow up thats a new one on a lot of us. Do make the best of it. I am Coeliac 5 years and the gp skips over it as fast as he can with total disinterest when i try to refer to it and the consultant wished me all the best when he had finished the gastroscopy and given me the diagnosis.The one thing i would suggest is that you push for regular check ups and reviews, that would be really comforting.

Good luck Jen.

[Hidden]

i had two hospital follow ups after my diagnosis. Both of these were with a dietician, the first one was a general dietician and the second with a person dedicated to Coeliacs but have not had another appointment since October. This could be dur to cut backs. I think they do more tests after a year to assertain how the diet is afecting the gut. Hope all goes well.

[FionaGFG Administrator]

As we've posted before in blogs & on polls all coeliacs should receive:

- yearly follow ups

- blood tests (full blood count, Iron, Thyroid function, B12, folate, calcium, anto-bodies to gluten ttg and ideally cholesterol as the change in diet means we're more at risk of this rising)

- weight checks

- height checks

- after initial diagnosis a Dexa bone scan of the hip joint to assess if there are signs of bone damage & thinning due to coeliac disease

If none of you are getting these checks then it's down to you to talk to your GP. In some areas care is handled at primary level with your GP - alternatively in others it's handled via secondary care at the hospital. Many hospitals manage it by coeliac clinics run by nurse consultants where you won't get to see a consultant unless you have ongoing problems. Often these will also include s brief chat with a dietitian. Sadly there are no official guidelines in the UK for after care following diagnosis. Perhaps as it's only recently that firm guidelines have been formed in terms of diagnosis of coeliac disease.

Ultimately your health is your responsibility - as much as we'd love Drs to be on the ball and aware of what we need many are under strain and busy with the cuts in the NHS. So it's always worth doing your part and then nudging your Dr to do theirs.

See our other posts on this topic:

glutenfreeguerrillas.health...

[ianwoowoo]

Hi All,

Well I had my visit to the Gastro-enterologist today. It was pretty good really. He has requested another Endoscopy to see if my gut has recovered / is recovering, has scheduled another follow up in six months.

He didn't need to do blood tests as I have had plenty recently and all the results were there for him to see - pretty impressed really.

He has suggested that my wife and I consider getting our 2 daughters screened as well as my brother. Something I knew was a good idea but until a Dr tells you it doesn't seem important.

Already had a DEXA scan so he knew I had bone issues, he said I'd obviously had CD for a long time as a fit, exercising person my age shouldn't see bone thinning. Told him I was on Calcium and Vit D3.

All in all a very worthwhile visit and has restored my failth in the NHS - for now !

Thanks for all your comments.

[jennyann]

Ianwoowoo

Super, all very positive comments and results

Fiona

Taken onboard what you have said will try again with my GP.

...Jenny

[FionaGFG Administrator]

Ianwoowoo - Great to hear positive feedback on the NHS! Don't forget to rate your hospital & give them credit so other coeliacs can see which ones are the best. Just click on the 'hospital' tab to answer a few questions. And do let us know how the family tests go. Always worth doing yet so few Drs mention it so well done to yours for flagging it!

Ian why don't you cut n paste your comments into a positive blog post about how NHS checks can work so you can inspire others?

Jenny - let us know how you get on.

[ianwoowoo in reply to FionaGFG]

Good idea Fiona, will do both suggestions.

[ianwoowoo]

Wow, only went for my follow up appointment last Thusday (12th April) and have just received an appointment for follow up endoscopy in 3 weeks time and have another 6 monthly appointment for October as well.

NHS all is foregiven!

[LauraJB]

I was diagnosed last August, my doc was very blasé when he phone me with results of my blood test, he never suggested referring me to a gastroenterologist or a dietician. In fact he said "oh well it's up to you if you want to follow a gluten free diet or not, after all you have got to age 49 and you are still healthy.

It left me very confused until a helpful advisor at Juvela said I should push for a referral to gastro for a biopsy as very occasionally blood test might not be correct. Well what a difference, the gastro specialist was brilliant (still Positive after biopsy, but much better care)

The GP has left me wondering though, whether in some way he is right, if I am pretty healthy, should I have to be so strict about avoiding gluten as it doesn't make me ill as such, mine is an iron deficiency thing. So eating a bit of gluten now and again won't give physical symptoms like it might for some people.

[Penel in reply to LauraJB]

What a terrible comment from your doctor, he obviously knows nothing about cd!. You may not feel ill but damage is being done to you every time you eat gluten. Your iron deficiency will have been caused because you cannot absorb iron through a gut damaged by gluten. Long term problems include osteoporosis, neuropathy and even cancer. Check out all the long term effects of gluten before you go back to eating it!

[romiky]

If you have been diagnosed with CD then you need to follow a gluten free diet. It is true that everyone with CD has different levels of tolerance to wheat and gluten but, you wont be able to keep nutrients in your body, you will be anaemic, your B12 will be very low, you will may feel terrible and fatigued,everyone has different symptoms of varying levels The first biopsy is looking for damage to gut the 2nd biopsy which should follow no longer than 6 months later is looking to make sure it is normal. A dietician is only needed if you have questions a GP will not refer you unless you push for that. As for cereals the only one's you can eat are from the gluten free section in supermarkets stay away from normal one's. As for GP's they are getting better but, still don't know enough. It is up to you to make sure you keep getting blood test and also make sure any medications you take are gluten free as some are not.