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Original poster

Does having coeliac disease put you into group 6?

137 replies

MyBossIsATwat · 03/02/2021 14:22

About 1/3 of people who have coeliac disease have reduced spleen function but most coeliacs don’t know if they do or don’t as it’s not routinely tested.

On the gov website it says ‘a problem with your spleen, example sickle cell disease, or you have had your spleen removed’ would put you into group 6, but does anyone have access to more information to know if they’re including coeliacs in this or not?

Thanks.

OP posts:
loopeydoopey · 05/03/2021 19:38

Sorry I just want to triple -check. Feeling very emotional and I will check it.

A thousand thank yous WombatChocolate

loopeydoopey · 05/03/2021 19:38

I could always bring some past hospital letters along to the appointment if I was queries - sorry for the thread take over. I will calm down now!

WombatChocolate · 05/03/2021 19:49

Yes loopy. Enter your details on the site. It won't allow you to book if you're not flagged or eligible.

LLama, are you a member of Coeliac UK? Regardless, You can look on their website or google coeliac official diagnosis in UK. You'll see that children have been off I ally diagnosed without endoscopy for a while and only know during could when endoscopy is there a move to do it for adults. The lack of this could well mean you aren't officially diagnosed and not flagged on the system.

Others have had this too, but most were offered the endoscopy, told they didn't need to choose to have it (it's not very nice) and continued their gluten free life. Not so many have regular contact with GPs or get food on prescription now.

You would have to take it up with GP but the lack of endoscopy is a likes cause if you can't book on the national system now as you're not flagged. You won't be getting an endoscopy at the moment, so I. That case it will probably reach you faster by age. Annoying, but that is how they decide who is offcilally diagnosed.

WombatChocolate · 05/03/2021 19:50

Loopy, if you manage to book, you dont need letters of any type or medical letters. The system only let's you book if eligible and then that's accepted.

Lalallama · 05/03/2021 19:55

Thanks @WombatChocolate that's really helpful. I was diagnosed 11 years ago and wasn't offered the endoscopy. DD was diagnosed 2 years ago and not offered it either (probably because she's a child) but my mum had one when she was diagnosed about 20 years ago.

I would have assumed that as I get offered the flu jab I'd be on the list, and on my patient records online it says I am highlighted as 'moderate risk' with covid. But if I try to book online I can't.

Really interesting to know I might not be 'officially' diagnosed. I'll wait for my age group then.

WombatChocolate · 05/03/2021 20:10

It's unusual at this stage not to be able to book in national system as Group 6. You might find your GP calls you as part of that cohort, but especially if you've spoken to them already, then it's unlikely...and it's most likely to be about that diagnosis.

Who knows if we will all be vaccinated in future or how they will be rolled out, but it might be worth asking if there would be a benefit of having endoscopy whenever hospitals feel safer to go to for non routine stuff and you can actually get one.

Things are moving towards non-endoscopy diagnosis and as you say, in more recent years lots of people haven't had it.l.but I think with the need to keep group 6 quite tightly controlled for numbers, that might be proving an issue for lots now as actually until now an endoscopy WA needed. Have you looked on Coeliac website? Have you golfed it to see? Did you ever get referred to dietician etc?

These days with gluten free foods being widely available and also cheaper than they were, I think lots don't go to full diagnosis as managing it is fine for most, and it looks like this is being allowed currently for those currently being diagnosed as that was the direction of travel anyway and Covid has made getting those tests pretty impossible.

loopeydoopey · 05/03/2021 20:22

Oh Wombat Chocolate I have an appointment.

I have told for coelic friends too who are booking now.

What a relief just got a few more days to get through.

BrutusMcDogface · 05/03/2021 20:24

Loopey, I wonder why your cd is ‘playing up’? Are you unwittingly consuming gluten? Being cross contaminated? Sensitive to oats? I mean I’m sure you’ve ruled all this out but I didn’t realise people on strict gf diets could still suffer. Feel better soon 💐

BlueSoop · 05/03/2021 20:43

DH age 35 got jabbed a fortnight ago because of coeliac. Everyone who gets a free flu jab is group 6 basically.

WombatChocolate · 05/03/2021 20:51

Blue scoop it’s not quite true about all flu jab being in group 6. Asthmatics have been split into 2 groups and others too. Coeliacs haven’t though, unless they haven’t had the full diagnosis by endoscopy which seems the barrier.

loopeydoopey · 05/03/2021 23:54

BrutusMcDogface unfortunately not everyone recovers properly and it is possible that I am one of those.

But within the week I let my children have a gluten sandwich and I never ever do that, and I did make sure they sat well away from me but that or some residue may have triggered it.

Obviously one benefit of lockdown has been zero glutening but I don't really trust restaurants anyhow ever when they were open so the only thing would be gluten sandwich in the house recently.

Doireallyneedaname · 06/03/2021 10:46

@Lalallama Some surgeries are behind in their knowledge and some are power tripping. Sounds like you’re eligible to me.

Lalallama · 06/03/2021 12:40

I've actually just tried again to book online and it let me! Then I got worried that it just lets anyone book and I was jumping the queue, so I got DH to try and it won't let him book, so I must be eligible. Quite annoyed with my surgery though, I don't feel especially at risk as I'm working at home (although the kids will be mixing at school from next week) but if there are people going out to work and they're being given incorrect information it's not great.

Lalallama · 06/03/2021 12:43

@loopeydoopey sorry you're still suffering, my SIL has ongoing symptoms too and it can be debilitating.

WombatChocolate · 06/03/2021 12:44

Well that’s great that you’re booked.

Tomnooktoldmeto · 06/03/2021 13:13

Just checked DS 17 on the system today, it recognises him as eligible but has to be booked via the GP as he can only have one of the vaccines due to age, he is coeliac

Bizarrely the system doesn’t recognise DD 18 also coeliac, asthmatic and autistic so that’s going to need a gp chat

Fortunately DD never leaves the house but DS is back to school on Tuesday and really could do with vaccinating as we’re are immunodeficient coeliacs (subclass deficiency)

Doireallyneedaname · 06/03/2021 13:40

@Lalallama I would complain.

CrayonInThreeBits · 06/03/2021 13:45

I wonder why it is that some areas are doing endoscopy and others not… I maxed out the TTG test (twice, because they thought the first one might be an error) and had a positive EMA, and still got sent for an endoscopy. And I was only given a blood test for coeliac disease on a whim, because my thyroid was a little shonky… 😂

CrayonInThreeBits · 06/03/2021 13:58

And my thyroid was only shonky as a side effect of a medication I take anyway…

CrayonInThreeBits · 06/03/2021 14:02

I meant I wonder why the difference prior to lockdown — obviously diagnostic endoscopies aren't really going on anywhere at the moment.

Lalallama · 11/03/2021 10:46

Just had my vaccine. They did say I should have waited for a letter from the GP as they need proof, so that not just anyone can book. I didn't have one as I booked directly on the NHS site, but I showed my GP records where it showed moderate risk, and my coeliac diagnosis, and they were ok with that.

Lalallama · 11/03/2021 10:47

@loopeydoopey have you had yours?

NuclearDH · 11/03/2021 10:52

@Lalallama

Just had my vaccine. They did say I should have waited for a letter from the GP as they need proof, so that not just anyone can book. I didn't have one as I booked directly on the NHS site, but I showed my GP records where it showed moderate risk, and my coeliac diagnosis, and they were ok with that.
I’m not sure they’re right as you wouldn’t be able to book via the nhs site unless eligible?

I could book 19yo coeliac Dd a vaccine before 58yo non coeliac dh could book one.

Lalallama · 11/03/2021 10:55

They said they had to put something on a form to show proof of being eligible as there are people sharing booking links or faking ID to jump the queue - she went to check with her supervisor who said the same.

I was surprised though, as you say, it won't let you book on the NHS site if you're not eligible - we tried with DH (non coeliac) and he couldn't book.

NuclearDH · 11/03/2021 11:20

Will see what happens at DD’s appt tomorrow then. The only thing the website says she needs to take is her booking reference. Didn’t even say she needs ID never mind proof of illness.....she doesn’t have a letter or a certificate for the latter. 🤷‍♀️