DS - Coeliac disease lack of information Update page 3

[Princess Ariel]

As some of you may know DS (11) blood test results last week have tested positive for coeliac disease. I spoke to his GP last week and when I asked her what happens next she basically just said ‘I’ve referred him to the paediatric team’ that was all the information I was given.
Today I’ve received a very very basic letter asking me to book an outpatient appointment for DS at a paediatric clinic, absolutely no details of what the appointment will entail. I’ve booked him the earliest possible appointment I can (8/8) but I’ve also phoned the clinic and left a message asking for some more information about the appointment.
I’m a little disappointed I haven’t been given more advice and information to be honest, I haven’t even been advised to keep gluten in his diet... I learned that myself from the coeliac uk website!

[shona]

As an adult you are usually given a endoscopy to confirm, but I am not sure they do that for children. I would contact Coeliac UK and let them know what you have been given and they should be able to guide you. Very poor service from your GP

[Princess Ariel]

Thank you, a nurse from the children’s clinic has just phoned me back and said he will see a consultant at his outpatient appointment, he may have another blood test but probably won’t need an endoscopy because his original blood test was positive. She’s also advised me to cut out gluten straight away because if he does need an endoscopy they would schedule that a few weeks after his outpatient appointment and we could just re-introduce gluten prior to this. She also advised to start weighing him weekly too and keeping a food diary. At least I have a bit more information now

[claireyfairy8]

I don't have much advise, but when I was 14 or so, I had to go GF and it was a nightmare. (Intolerant not Coeliac)

I recently went GF again, and I must say, the quailty and variety of food now available is a huge improvement.

Good luck to you xx

[ely3857]

Hope the apt goes well.

It’s odd they’ve advised to remove gluten ASAP despite the lack of confirmation no further tests are necessary as introducing gluten again shortly before any further tests wouldn’t show up coeliac or an intolerance properly.

My own DD did have a biopsy as bloods test were inconclusive. She is asymptomatic and coeliac was only discovered through her annual blood tests at her diabetic clinic appointments.

After her biopsy we were told to carry on as normal (by the surgeon) as there was no damage to her tummy but she’d write once lab results were returned. As it happened she was coeliac but as it was caught so early there was no damage. The boy in the bed next to her was told by his surgeon to go GF immediately and never touch the stuff again!

These things do differ hugely from health authority to health authority and while you’re walking in fairly blind to this appointment it’s going to be one of those things where the internet is your friend and experience will come. Good luck. X

[Princess Ariel]

Right, after reading replies I’ve contacted children’s clinic again who have basically said they don’t know what will happen at the appointment, they didn’t even look at his blood results while I was on the phone 😬😳 I was told again to cut out gluten because I could reintroduce it if needed. This hasn’t sat right with me so I rang coeliac UK who have told me the complete opposite 😳 definately not to cut out gluten at this stage! She asked me what his blood result was, but the GP didn’t tell me, apparently anything over 200 indicates a strong possibility of coeliac. Following this conversation I contacted GP and asked for specific results... his coeliac test result was 364!
So it’s looking like his blood test results, family history and the fact he’s symptomatic all prove he definately has it, but I’m taking coeliac uk’s advice and just keeping everything as it is at the moment just in case he does need further tests. Thanks everyone

[Emmie2016]

I agree! Do not cut out gluten yet as its will affect future results, await the doctors instructions. Dont be alarmed about the lack of information for the appointment. Normally it's a clinic appointment for the consultant to gather all the information and review the tests already done, then decide what to do going forward.

He may have a camera, just to check how much damage has been done but they aren't too bad.

I have ulcerative colitis and it's all a bit vague until a consultant gets to see him in person. Then you should be given all the information.

Hope it all goes well!

[danisleigh]

My friends son is 21 and has other complex medical issues but was recently diagnosed as coeliac. I was surprised as they left him for ages having blood tests and stuff and still eating as normal before they cut out the gluten.

[klr15]

I was diagnosed 5 weeks ago at the age of 23. I had bloods first and then a biopsy to confirm, I was only told to stop eating it when a letter came through after my biopsy, only information I got was “you can now stop eating gluten”.

I have to stay it is a big lifestyle change, but better to be diagnosed early I feel, rather than go years with problems (I’ve probably had it 10 years+ based on my past problems).

You will get there, it just takes time. How has your son taken it?

[shona]

If he is diagnosed, it is worth joining Coeliac UK as they used to produce a food directory which told you what you could get in the various supermarkets and it was a godsend when I was first diagnosed,