Positive blood test for coeliac

[Bow38]

Hi, I’m hoping some people with experience of coeliac diagnosis might be able to offer some advice. My 9 year old daughter recently had a positive blood test for coeliac disease after unexplained vomiting episodes. Blood tests for everything else tested were all fine. We’re just waiting on a further appointment with gastroenterology now.

For those who have experienced this, did their child have to have an endoscopy? Any tips for this if so? Her level was 53 so I’m thinking it’s likely she’ll have to have one. Is it possible to have positive blood test and not have coeliacs? Please don’t share any horror stories at all as I’m really nervous about it all already. Thanks in advance x

Just to say... I think different areas of the country might have different levels of what is considered 'normal' or 'high' TTG but the principle still applies of 10x normal means diagnosis from blood test alone. A level of 10 was considered normal by the specialist in our part of the UK.

@GloriaBunniford thanks for your message, I’m sorry your son had to go through a lot before coeliac was diagnosed. Our daughter was under a dietician as a baby/toddler for daily vomiting and poor weight gain and she’s always been quite a sicky child so I’m wondering if it’s been a problem all along. We tried cutting out dairy but never gluten and I wish I’d known more about coeliac before.

@OneSmallPieceOfCheese thanks, yes you’re righty it does seem to vary a lot! X

@OneSmallPieceOfCheese how is your daughter getting on? Just thought I’d update that my daughter’s biopsy came back negative too so we’re also at a bit of a loss as to what’s going on. The consultant said maybe latent coeliac though it must be something else that’s causing the vomiting though as latent coeliac comes without symptoms. Did watch really interesting lecture on latent/potential coeliac though which was recommended by coeliac UK and possibly helped a bit https://www.coeliac.org.uk/research/our-approach/research-conference/2020/potential-coeliac-disease-doctor-have-i-got-it-or-not-dr-jeremy/

our consultant said that even with gluten sensitivity it can take 3 months for things to settle so we’re really crossing our fingers that a gf diet might help. Otherwise back to trying other things 🤷‍♀️

Hi @Bow38 sorry to hear that you haven't got answers yet. She is improving thanks to a very strict GF diet (no 'may contain', separate toaster, all utensils through the dishwasher etc) but it's taken quite a few months to see a noticable difference tbh. Even if it's 'just' NCGS, the symptoms can be pretty awful. It's clearly taken a long time for her system to clear itself.

Hi all. Just looking for some advice. My DD is 2.5 years old and after having gastrointestinal issues all of her life. Initially treated as reflux, then cmpa (still dairy free) GP is now considering coeliac. Due to continued diarrhoea, tummy pain, regular (most days) high temp (even when well) and occasional arm numbness. She had a stool sample and blood test which were abnormal but borderline (13 blood test, stool sample 213). I've been reading that blood tests are not that reliable in under 3's though.

She has been referred to paeds gastrointestinal.

Just wondering if any thoughts on these results as reading other figures on this thread they seem quite low. Although is that because of her only being 2 years old. Also what can I expect now?

I have also asked the GP for the same bloods/stools for her identical twin sister as she is having similar symptoms too. And think there is a genetic link with coeliac too?

My granddaughter coeliac blood test was over 300 so a clear diagnosis. She was 4 and had chronic constipation, anaemia, lethargy, clingy etc and a sore tummy. Has been GF now since May and she is a different child .

@Donimo I’m not sure how it works for under 3s but my daughter had an endoscopy with biopsy under general anaesthetic as her bloods weren’t high enough for a diagnosis. I was so nervous about it but it was really all ok and very quick!

definitely worth getting all of you checked - we all did in our family and my youngest came back with blood levels off the scale which was a bit of a surprise as she didn’t have any symptoms! This lead to the consultant saying that probably my eldest does have coeliac after all despite not finding anything on her biopsy. We’re still waiting on a formal diagnosis for her, though she’s strictly gluten free now.

there’s a really helpful fb group - children with coeliac disease. I’m certain someone would be able to offer info on diagnosis in under threes on there. Hope it all gets sorted for you soon xxx

Hi sorry I know this is an old post. My symptoms started 11 years ago when I was pregnant had a positive blood test, my biopsy come back negative so I continued to eat gluten, around 2 years ago I became really really poorly extremely thin so went back to the doctors, another positive blood test this time my biopsy came back positive with ALOT of intestinal damage. My doctor explained that if my coeliac disease had just kicked in all them years ago there wouldn't have been much damage internally which is why it was negative, I wish this was explained to me at the time and I'd have gone totally gluten free.

Wow that's quite concerning. I was regurgitating gluten products as my father used to, and blood tests showed I had elevated ttg/gliadin so had the endoscopy. I had damaged villi but not enough for coeliac dx. Gene testing showed coeliac predisposition so I avoid gluten and put the damage down to gluten sensitivity. The endoscopist said I could go on to develop coeliac so I proceeded as if I had it.

It's worrying isn't it because I just believed that I can't have coeliac if a biopsy was negative. I'm so much better now health wise I was using the toilet upto 12 times a day, bald patches in my hair, anemic. And it could've all been prevented too!

@Jane306 It is worrying & that sounds horrendous. I think if someone shows signs of gluten issues then the endoscopy/biopsies should be repeated periodically. Do you have to have separate cooking utensils etc?

Yes my own toaster, butter, have to be so careful with everything! There should be alot more testing after a negative biopsy!

@Jane306 that’s awful for you. I’ve heard of quite a few stories like this now. They have formally diagnosed my eldest with coeliac now based on her symptoms, ttg and EMA levels and her sister also now testing positive for coeliac. The consultant even said there’s metres of intestine and in the early stages damage can be patchy so it’s possible to miss it in a biopsy. He was previously happy for her to go back on gluten too based on the biopsy result. Rubbish for you that it was left to go on for so long, hope you’re recovered now x

It's quite a strict regime but better than the alternative I guess. Can you get gf products on the NHS? I saw crates of gf bread at my local pharmacy and they confirmed they were for coeliacs. I'd not heard of the EMA test until I saw the post by @Bow38 . Were you offered that as it seems to be a more definitive test for coeliac?

I really think there should be another biopsy after a period of time if you're still having symptoms and positive blood tests, no it's a postcode lottery unfortunately and I'm in Nottingham which doesn't offer prescription food products x