Trying to get Coeliac diagnosis

[TodaysFishIsTroutALaCreme]

Hi all. I am going round in circles and am losing my mind...buckle up, its a long one!

My daughter had a positive blood test for coeliac and was referred to gastro urgently. They attempted the endoscopy under sedation but they were unable to get the camera in. They said she needed it under general anaesthetic instead and would sort the referral. And this is where it starts to go wonky.

Got a letter from the gastro surgery team saying as GA carries risk, they are reluctant to do it but they would if we insisted. We insisted and got on the list. Gastro surgery team also sorted a referral to dietician in order to put my daughter on a GF diet.

We received an appointment for the dietician so I decided to call the surgery secretary to see how long the wait was and I was told that my daughter was being treated as a routine case and the waiting list was 18 to 24 months.

Knowing that my daughter had been referred urgently and knowing the NICE guidelines say that the endoscopy should be within 6 weeks of referral, I asked her GP if she could expedite it. GP said no, there was nothing they could do and the best bet would be to contact PALS.

Before contacting PALS, we had her dietician appointment. The dietician said there was nothing they could do for her until she had a diagnosis and there was no way she should be going GF until she has had the endoscopy. I explained about the 2 year wait and she said it was unacceptable and I needed to push for it it to be sooner.

So I then spoke to PALS and they said they would look into it for me. Well, they called back today and said they had spoken to the surgical team and they said that my daughter was going to be staying on the routine list and they would not put her back on the urgent list. I reiterated the NICE guidelines and they said there was nothing they could do and the best bet would be to contact the GP and get them to expedite it.

But the GP said they can't expedite it.

So stuck in this weird circle of red tape and have no idea how to go further.

I've even spoken to the local private hospitals but as she is only 17 they won't do it and she needs a paediatric hospital. (She was 16 when she was referred)

I just stuck and my daughter is just permanently poorly bless her.

I would assume she's coeliac while you're waiting and change her diet accordingly.

The problem with doing that is that any subsequent celiac test would come up negative because there's no reaction in her body (because she isn't consuming gluten). That's the frustrating thing about getting a celiac diagnosis is you have to carry on consuming the thing you are 99% sure is damaging you. Having said that, it's normally only for a few weeks. 2 years is ridiculous. Not sure what the next step would be though if even the private hospital won't test her.

Im so sorry this sounds stressful. You could write to your MP and ask them to raise it with the ICB on your behalf, that might get things moving

a positive blood test & symptoms mean that it's near 100% that your dd has coeliacs.
drop gluten straight away to avoid further damage to her gut.

Nuns You have to have gluten in every meal for 6 weeks leading up to the endoscopy. The dietician said that they do not recommend cutting out gluten and reintroducing it at a later date becuase it makes you very poorly once your body has got used to not having it.

greenacrylic without a diagnosis, she will not get the aftercare that is needed. Sadly, it's not quite that simple as much as I wish it was

Do you know what her ttg results were and has she had an EMA test and genetic marker (HLA)? If the TTG is sufficiently high they can make a diagnosis without an endoscopy, especially if combined with the EMA test result and the genetic marker.

The other option would be to start her on a gluten free diet now and then when you get the appointment through introduce gluten again as need to eat gluten for several weeks for the biopsy to be able to show up coeliac disease - that might not be very nice for her though, but better than being ill for another 2 years when you know there's a treatment. I know the dietician said not to do this but that's what I would do (and did for my son when his blood test results came back positive).

You could also get in contact with Coeliac UK for advice - they might be able to help

Sunnyfields my mp is shite but it's worth a try. Thank you

My DD has Crohn's. We were all hoping it might be coeliac. We were told by GP and gastroenterologist that in pediatric patients symptoms plus positive test is often enough and they don't always do scopes as well unless they suspect IBD as well as coeliac, which they can tell from bloods I believe.

So I wouldn't bother with the scopes, just start coeliac protocol.

pingster tTg was 8 and EMA was equivocal. If she was 70 for her tTg they would have gone straight to dx

Yes that's fairly low and not enough for a diagnosis. Have they tested her HLA status (genetic test)? if she doesn't have the coeliac mutation then you could almost certainly rule out coeliac so that might be worth doing if you haven't? You can pay for the HLA test privately if you haven't and want to speed things up

Usually they diagnose children on bloods alone, the endorsed doesn't always show anything. I'd get bloods again if ttg high enough push for diagnosis get gene test too in bloods, I wouldn't do endo.
If you have to go gf now and in 2 years re evaluate.

pingster the lovely dietician we saw said she was going to ask her boss to about the genetic test for DD. She said if it was negative then she absolutely did not have coeliac but if it was positive it may or may not mean she she has coeliac so she said it would still leave us in limbo until the endo

I had a positive blood test and symptoms but negative endoscopy. It was IBS triggered by stress. I was quite poorly with it from late teens to early twenties but am fine now. So I would say she definitely does need the endoscopy to confirm.

Oh wow never heard of that. OP ask coeliacs UK for advice - they have a helpline