How often do you or yr child have Coe... - Gluten Free Guerr...
Please select all that apply:
I don't get follow ups, but my son does at present but that's probably because his a child?
No Track all coeliacs should have follow-ups no matter if they're an adult or a child.
As BSJ guidelines in the UK state,
'In keeping with other guidelines we suggest that patients have a full blood count and check of calcium, ferritin, folate and B12 every year.'
and
'New or changed symptoms should be investigated accordingly and treated. It will usually be of value to repeat duodenal biopsy. It may be helpful to review dietary adherence. Small bowel bacterial overgrowth and microscopic colitis should be excluded.
If symptoms remain unexplained by conventional investigation, then specialist investigations should be undertaken to exclude secondary refractory coeliac disease and the possibility of enteropathy-associated T cell lymphoma.'
Full blood count 6 monthly and specialist visit 12 monthly. Colonoscopy every 2 years.
Wow Roscoe - where do you live?
Roscoe - you are lucky! I don't get full blood counts, check ups or anything.
No diagnosis so no check-ups! I wonder how many diagnosed people are in Cambridgeshire - especially if others get treated as I have been. They have certainly had trouble accepting that I am better on a GF diet - I had to fight to get it put on my records.
I'm frequently told that I'm not a coeliac because it doesn't show on the blood tests - then there is trouble commenting when I ask if it would show when I'm on a gluten free diet - because we both know the answer to that! It doesn't matter what consultant I see - now in desperation I believe to get rid of me they are referring me to a gastroenterologist - let's see what he has to say .... but I won't hold my breath!
I want to move to where Roscoe lives - please!
We have annual appointments for my 8 year old with the dietician and also the Paediatrician. I'm very pleased with that.
My daughter and I get check up's annually at the GP but they don't remind us - we have to remember. They advise to do it around your birthday to help you remember. We have to tell them what to check also.
I have been coeliac for 20 or so years, i was diagnosed given all relevant info then left to get on with it. Though I do have monthly bloods due to medication I take for PA, so im guessing if anything wrong it will show on those tests. I will check next time i go for bloods, if i remember!!
Hi I was diagnosed 6years ago and never had no follow up
6 monthly check up with Immunologist at the hospital incl, full bloods (Hull Royal), and 12 monthly check up with dietician (incl. full bloods). All in all pretty happy with my treatment 
Dietician, annually for a chat, and GP annually to renew the GF prescription.
Australia. But I do carry full medical insurance as I also are a post polio survivor and have associated problems as a result. A real double wammy.
Meant to add it costs me over $200 a month for family cover.
Me and my daughter see a Gastro specialist every 6 months and get bloods checked etc and see the dietician once a year.
I come under the 'other ' category.
Once saw a nutritionist. Have to see gastroenterologist every two years for other things. GP saw me once for repeat prescipt on Calcium tablets!! I'm sure if I asked for a check up at GP or nutritionist I'd be given one. ( I hope !)
No offer of follow up by GP. Had to cancel my dietician appointment as i was very unwell and couldn't leave the house. Got a letter from the local health board saying if I cancelled the next one I would be taken off the list and would not get another!!!!!! Might be cause I had to fight all the way to get them to take notice in the first place, then had to go private to get the diagnosis. Maybe they don't like to be proved wrong. They always tell you you know your own body and if you know somethings not right to go back and see them.... that a joke..........
Since diagnosis 17 years ago I have had an annual check up but have now been told that NICE or the PCT says that coeliac do not need them any more.
So I ticked other.
I was dignosed 4 years ago and had no follow ups.
Had yearly appointments for 3 years and as didn't need to see dietican no more yearly checkups and have had no contact since with consultants
I was diagnosed through a routine diabetic check up where they decided to randomly test everyone in the clinic that day! I had no symptoms so it was a bit of a shock for me! That was 5 years ago and have been on and off the gf diet but have been on it properly for 5 months and now have symptoms if glutened!
My check ups happen at the diabetic clinic where they do blood tests every couple of years then tell me to stop eating gluten and I see their dietician!
I am seen at the GI clinic yearly but know I can be seen sooner if I have concerns..
I was diagnosed in 2000, and have not had a check up since then I have Lactose intolorance and I try to be very careful what goes in the mouth, I think now have read this I will ask my Dr for a blood test.
i was diagnosed in 1981, i had 6 monthly biopsies and check ups until i was 13. they took me off my diet when i reached 13 and told me that i had grown out of being a coeliac.(the docs didnt have the same understanding of the disease back then) I was put back on diet when i was 17. again i had 6 monthly check ups and yearly endoscopies until i was 20 then i went onto a yearly check up. this is still the same now and im 33. if im feeling particularly tired etc i get my gp to do all my bloods again and ive had no hassles with them doing this. i did attend a dietician every year too up until recently but it was my choice to stop going.
I had one GP who was quite clued up about coeliac and he used to schedule all his coeliac patients for an annual visit, just to keep in touch with how they were getting on.
Current GP isn't at all interested, and doesn't really seem to know anything about coeliac, and the previous one was absolutely useless - when I had a repeat blood test ( to make sure I wasn't still getting gluten in my diet, because I was having some stomach problems) and it came back negative he tried to tell me I never had coeliac disease anyway! In spite of me having given him a letter from the gastroenterologist with the biopsy results on!
I haven't seen a dietician recently, but a few years back I asked to see one (when I first returned to the UK and needed to know more about prescription foods). I think if I ever needed it again, I'd get referred easily enough. Actually membership of the coeliac society has been far more use than dietician appointments.
