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

I had a positive blood test for ttg and gliadin in gluten but the camera down the gullet (gastroscopy!) and biopsies showed some damage but not enough to meet the gold standard for coeliac. They dx gastritis. I don't eat gluten now & don't get the horrible symptoms after like you daughter. I opted for sedation which was a benzodiazepine of some kind. I have heard they can dx on blood test alone now but not sure.

Ps, it wasn't exactly pleasant but it was fine, the sedation really helps!

My kid had the endoscopy around that age, his main complaint was that it was boring for hours in hospital waiting around before and after. It's no fun, but not awful either.

Thank you @CherryRipe1 can you remember if your levels were high in the blood test? Thanks!

Current best practice guidelines are to follow up with an endoscopy to give a definite Coeliac diagnosis, but some NHS trusts don't for children.
A friend's DC had one recently, was done under general anaesthetic and was not too traumatic at all.

Ive just checked and they were 35 so not off the scale high but elevated enough for further tests along with nausea _ vomiting after eating bread.

Thanks everyone, it’s a bit of a minefield and we have no history of coeliac so it’s helpful getting other people’s experiences!

My daughter had positive blood test for CD when she was 10. We decided not to put her through the endoscope procedure. You can get false negatives on the blood tests but not false positives.

Our daughter’s gastroenterologist was happy to confirm diagnosis on her response to the change of diet alone but our daughter was incredibly ill at that point. She experienced massive weight loss and severe stomach pain so waiting for endoscopy would have been cruel.

We were offered a coeliac challenge when she was older. Eat gluten for 6 weeks and then go for endoscopy, we haven’t bothered. As a pp stated not all consultants insist on an endoscope for children.

DD was diagnosed when she was 8 and had to have an endoscopy. She was absolutely fine. A bit groggy when she woke up but no other side effects/pain etc.

Thanks @TheGirlattheBack the medical secretary said we might get away without the scope but with her levels 3 out of 4 consultants would most likely want to scope her. Seems strange it’s not uniform across trusts or even consultants!

My daughter's first blood test indicated coeliac but a subsequent one was lower. And the one after that was lower again. So she had the endoscopy and they found gastritis and duodenitis but no villous atrophy (I think it's called!), so not coeliac after all. She's strictly gluten free now anyway as it clearly causes problems, but I'm really glad they didn't diagnose coeliac after the first blood test as it didn't show the whole picture. So if offered an endoscopy I would say yes, as it was quick and caused her no problems other than being hungry! I am glad we were able to get as much information as possible. Children have a general anaesthetic and that makes it much much easier.

Thanks @OneSmallPieceOfCheese thats really helpful. Did her issues clear up after going gluten free? Do you remember what her levels were in the tests? X

First blood test showed TTG of 53, next was 38, then 32. While GF it was 10. She has improved since going strictly GF, but her chronic pain is still there. She's back at school at least.

Just realised both at 53 and similar age. Snap!

@CherryRipe1 what treatment did you get for the gastritis?

My 4 year old granddaughter has just been diagnosed with Coeliac. Her ttg-Iga was 128!! Endomysial antibodies positive. She is not being scoped because her blood results are definitive for coeliac . All very daunting TBH . She is also anaemic .

@OneSmallPieceOfCheese yes exactly the same, 53! I thought it was almost a definite that she had CD from the blood test so your story is really useful. Didn’t really help that the GP just emailed the result and the surgery won’t let us book a phone call to discuss as it’s been referred on, so we we’ve not been able to ask any questions.

@CannotbebotheredNC thanks, I hope your grand daughter feels better on the diet changes.

@Bow38 .Hopefully your daughter will not need endoscopy but if she does she will be sedated. My son had one for a different reason when he was a teenager and he was fine.
Never thought 2weeks ago that we would be learning so much about coeliac . We have been blindsided because coeliac not in the family that we are aware of and the Dr didn’t mention it when he ordered blood tests so it just wasn’t on our radar .
Now with benefit of hindsight we can now start to understand why granddaughter has been so lethargic,constipated,stressy tiny for her age . Onwards and upwards. Dietician has been really helpful.

Hi Op

I have coeliac and so does my 4 year old.

Google the NICE guidelines for coeliac testing. Essentially the level of ttg that indicates possible coeliac disease is 5.
For blood tests where the level exceeds 50 I think they can diagnose solely from that. For 5-50 they do a second blood test and if still not conclusive they do the endoscopy.

My daughter was 32 and 37 and ended up having endoscopy aged 3.

It's daunting to see your child in hospital and under sedation but I promise she will be fine. She might have a bit of a sore throat if she needs the endoscopy but we found that was soon fixed with a big milkshake!!

Don't worry too much about beyond the testing either - it's really overwhelming at first but I was diagnosed 25 years ago when the only gf food was on prescription. It's much easier and tastier now.

Just be careful to NOT eliminate gluten from her diet until you have had the scope! There needs to be something for the gut to react to in order to get an accurate diagnosis!

I was given reflux medication, think it was lansoprazole or Omeprazole but I didn't take it as I hate medication & am a stubborn old bat. I got rid of it with bland diet mashed potatoes, gf oats, avocado and cutting out gluten, alcohol, fatty & spicy food as per the gastrologist. Stress can cause it too. I had villous atrophy but not enough for coeliac dx. I can't remember the gold standard, something like more than 1 out of 3 or 3 out of 10 biopsies.

Thanks for your kind message @WingingIt101 thats really all really helpful to know. @CannotbebotheredNC we are the same, no experience/history of coeliac either. Do you all have to get tested for it too now?

Thanks @CherryRipe1 that's useful to know that diet fixed it. I'm amazed that you can have villous atrophy but not coeliac, I thought it would be a definite diagnosis!

Btw @Bow38 there's a useful coeliac chat thread on here, mainly GF food ideas for if your daughter needs to start a GF diet. But as a pp says, she needs to keep eating gluten until all the testing is complete.

Has anyone else found that dairy causes them similar problems to gluten?

Hello OP,
My 12 year old DS had a blood test and the level was greater than 128. The upper range limit for normal levels is 7.
Based on the result of 128, my GP did an urgent referral to paediatric gastroenterology who we saw 3 weeks ago.
The Consultant stated that a diagnosis would never be made on 1 blood test result alone, and sent DS for a repeat blood test.
The repeat blood test came back to match the first one - it's greater than 128 again.
The Consultant said if the 2nd blood test is 10 times greater than the upper limit of normal or more, which would be 70 or higher, then that confirms diagnosis and DS won't be sent for endoscopy. But he said that if the 2nd blood test came back above 7 but below 70, then endoscopy under general anaesthetic would be arranged.
So to summarise:
1 blood test above 7 requires a repeat blood test.
If both blood tests are above 7 but below 10 times greater than the upper limit, i.e. above 7 but below 70, then they do endoscopy under GA.
If the first blood test is above 70 but the second blood test is below 70 then they do endoscopy under GA.
If both blood tests are greater than 10 times the upper limit, so both are above 70, then that confirms diagnosis and endoscopy is not performed.
I hope that makes sense, I don't know if I've explained it succinctly enough!!
I share your feelings - I feel overwhelmed by the diagnosis and I'm feeling really sad that DS has an autoimmune condition.
He's anaemic and he has been since he was 3. He's been on prescription strength iron for 9 years due to low iron levels with frequent blood tests throughout that time. During those 9 years I've pushed and pushed the GPs to find out why he has low iron but they just kept telling me he'll grow out of it when his diet evolves more as he gets older. Well he's never grown out of being anaemic despite a brilliant diet. I pushed and pushed for a paediatric referral to investigate his anaemia when he was 6 and she simply said stop letting him drink milk because milk blocks the absorption of iron from food, and referred us to a Dietician. I had to do a 2 week food diary for the Dietician and she said DS had an exemplary diet, full of all the nutrients he needed including iron. Then we were discharged back to GP again. And it's taken until now for him to be diagnosed.
He did have 2 coeliac blood tests in the past when he was younger, at my request to GP, but both came back negative. I had to battle GP this time around to test again, because GP kept saying it's been negative before. I quoted about false negative results and on my insistence he agreed to test once more and here we are, above 128 twice running and diagnosed with Coeliac.
I wish DS had been diagnosed years ago. I'm sad that he's got to 12 after living with the exhaustion of anaemia since age 3 and years of blood tests and prescription iron twice daily every day, when all along he had Coeliac.