Does anyone have regular hospital appointments for Coeliac Disease - Posted by shelly13

[Irene]

Hi everyone do you have regular hospital appointments with the consultant & the Dietian? cause i haven't seen anyone for 2years also has anyone had a Dexta scan

[Hidden]

I used to have an annual check up and have had 2 dexa scans but this year was told that the local PCT no longer deemed it necessary for coeliac to have an annual check up. But my specialist who I had seen for the last 17 years reassured me that if I had any issues all I had to do was ask by Dr to refer me to the hospital. I was also told to go to my Dr's for an annual blood test from now on.

As for dieticians I saw one when first diagnosed and that it was it.

[jennyann]

Hi Irene

NO....6 years and have never seen anyone since initial diagnosis..Consultant gave me my diagnosis and wished me well. Four weeks later i had a one off appointment with a dietitian and that was that.

I had an invitation to a bread sponsored evening last week in the hospital and there was a consutant there. The consultant who was unknown to me was along with the dietitians greeting guests like long lost friends, they were obviously well known to them.. During the course of the evening i asked the consutant if people with coeliac disease should have annual review appointments with a Consultant Gastroenterologist he told me yes they should and to ask my gp for a referral back to them....i also had a dexa scan on diagnosis 6 years ago...

Good luck and hope this helps Jenny

[glitzygem]

no scan and no dietician, and I was diagnosed 8 years ago.

[Maryelle]

not a thing, diagnosed while having routine blood test and that was it !

[allouette]

I was diagnosed with coeliac disease 2 years ago and had a dextra test which showed I had really strong bones etc. Just have an annual check up with the doctor, with blood tests.

[superkeith]

Used to see the dietician yearly for about 10 years after diagnosis but then decided that it was getting to be a waste of time as all I was told was to keep an eye on my diet and keep on the way I was.

[mediachap]

I am a 50 year old male. I was diagnosed with long term undiagnosed Coeliacs nearly 4 years ago after a serious leg break. I had a Dexascan that revealed Osteopinea... A second Dexascan 2 years later revealed progress in the right direction. The PCT does not do a third one as a matter of course but I have broken ribs three times in the last 2 years so my GP is referring me for a third in December. The Gastroenterologist consultant was persistent but I was discharged 18 months ago with the statement "Any issues, get your Doctor to refer you again." ...as for Dietician I have seen her about once a year. I am compliant with diet but have had a number of accidental 'poisonings' that have caused problems so she generally just says "Och your fine...I'll see you in 12 months"... Yes, she is a Scot! So repeat visits? Not really, make sure you get a good GP who understands all the issues associated with Coeliacs and you will be fine!

[asborne in reply to mediachap]

Wow you have had it tough. Had to laugh about see you in 12 months etc. What sort of issues do you think you would require help with.....more broken bones perhaps. Think antidepressants are pushed if still get dietary troubles via gasteroenterologists, then you are exspected to deal with effects of them also from what I gather.. Lets hope you make progress via gp. Take care. Feel for you.

[thestickybloodedcoeliac]

i was diagnosed this year feb, i have seen my consultant 3times since, and i'm on yearly check-ups now, i have also had a dexa scan

[asborne]

Lack of communication all round. I struggled at first, apparently gp was sent information but somehow it wasnt passed on to me by dietition or gp. Anyway it was a real mixup. Visits to dietition was no help as I was aware about gluten foods. Blood tests were done but I wasnt given info (because we dont do that) same applied to Dexa results. When I had eventually abdominal pain....not interested, when seemed to be having lactose problem, said over phone see gp then it will maybe sorted when I see you March for yearly check. (coeliac dietition) gp didnt agree to lactose intolerance, so contacted Coeliac uk who gave advice which was helpful. Now trying to introduce milk. Lack of communication wih gatroenterology dept (rectal bleed, abd pain) Waited 8 mths for so called emergency colostomy which failed, then another 8 mths no info.. A large amount of lactulose was prescribed next without querying possible lactose trouble. One is soon thought to be over anxious, neurotic etc when communication would be more helpful . Perhaps I was unlucky re communication...but lucky to have had dietary problems as an elderly person and not earlier in life like some. Suppose all medical persons think they are doing ok, but to wait months or a year between care takes some doing.

[ianwoowoo]

When diagnosed I saw a Gastro consultant and separately a dietician. After 6 months I had a follow up appt with same consultant and another biopsy. Just had another consultant appt after 12 months and he said every 12 months from now.

[DeliDivine]

I personally have only had bloods taken on an annual basis and I've had an endoscopy every 5 years, but I only ever saw a dietician once when I was diagnosed 20 years ago and I had to tell them about the condition!

Up in Rotherham though, the prescribing budget is held by the dieticians and every patient must see their dietician at least once a year. They hold an open afternoon once a year with suppliers to show their patients what else was available. It was eye opening - dieticians have changed a lot.