Diagnosed 2008 and just told by consu... - Gluten Free Guerr...
Diagnosed 2008 and just told by consultant that day.1 visit with dietitian no follow up at all with anyone often wonder is this usual.jenny
Hi Jenny. Unfortunately this all too common even though there are NICE guidelines in place governing the ongoing support and care that diagnosed Coeliacs should receive.
Please go back to your GP and discuss your concerns. He/she should be carrying out blood tests to check your overall health.
As regard the dietitian our experience is that whilst they may be great if you have Diabetes or Crohns the people we have come into contact with just don't get Coeliacs. When we asked, a good year after being diagnosed and going on a strict gluten free diet, why we still felt so bad we were told that it was probably because we weren't managing our diet properly. The inference was that we were cheating because most of the Coeliacs she saw did this!
I never saw a dietitian just my original consultant who started me off on the diet & suggested I joined the coeliac society which I did. The second consultant I saw told me to delete lactose from my diet until my villii had regrown & my intestine was healthy again. This appears to be practised more in the USA than here. This I did for a couple of years, then gradually reintroduced milk, butter, cheese, cream etc & can now eat them all. I moved 13 years ago & my new doctor said he would not refer me to a dietitian as the only one he knew who specialised in coeliac disease was in private practise.
There is so much help now available on the internet & through the coeliac society that I find that I am now the expert on my diet & am able to lead a fairly normal life. In fact we went to a formal dinner in our local golf club on Saturday where they just altered the main course for me & omitted the bread from the starter. I have had no ill effects.
I had an appointment with a consultant and 1 appointment with a dietitian. The dietitian said that I could have further appointments if I needed them (I didn't) and I was told by the consultant that I'd get an appointment at the coeliac clinic in 6 months and then yearly for a check up and blood tests.
The dietitian was knowledgeable but I didn't really learn anything new as I'd been reading so much about it. However, I think follow up by a doctor on a yearly basis is a great idea, especially the blood testing to make sure that there are no complications.
Thank you girls....food for thought, gf of course...
Sorry to hear of your treatment by the health service. Others have writen vey negative comments so had to say that after being dianosed I was seen by a dietician who was very much like a talking text book. The second visit to the dietician was with a dietician who sees all the Ceoliac patents, she was very good. This was at Derby. Hope you are now coping well
Thanks for your reply Maurita and yes i am and have been very well and very careful, occcasionally though no fault of my own i can get glutened but recover. Just feel deep down that i should even once every two years or so have a check up from someone who is interested !!!
I was diagnoised this year by consultant who referred me to coeliac uk,i saw dietician pretty quick and saw her last week but coz my blood level still high.I am booked in 2 c her in may 12.So u should have more support hun.xxx
Hi, I was diagnosed with CD in October this year and I had to ask to see a dietician. When I met her she didn't really tell me any more than I had found on the web. It seems that you have to take things into your own hands if you want to see anyone. The other thing I am still pondering over is whether to see my GP about a bone density test as Calcium deficiency can be a cause of bone loss - I suppose this depends on how long you have suffered for.
The problem with the diagnosis is that you don't really know how badly your gut is affected, hence how long it will take to heal and also how long you may have suffered for.
Anyway - I suggest if you want to see a dietician or GP then ask !
