experiences of false negative coeliac tests please

[medjool]

DD has been going to Great Ormond St Hospital for almost 2 years for a so far unexplained enlarged spleen. On the haematology team, they have come to a bit of a dead end. On the immunology team, they are still growing blood cultures for a rare condition which we may or may not get results for at her next appointment. Apparently it takes months to grow the cultures or whatever it is they do.

I am coeliac and as a result, DD hs had a blood text for this - twice so far but both negative. An enlarged spleen is a rare, but not impossible symptom. She can also be irritable, we know she has low iron levels based on the many blood tests she has had, she is pale with dark circles under her eyes, she does suffer from a gassy tummy and tummy aches which are unexplained, she gets mouth ulcers.

I have heard so many people on here mention false negative coeliac blood tests. Can anyone explain how you progressed beyond a negative blood test to a diagnosis?

can't type properly as feeding DD at moment.

how old is your DD?

DS2 is 2.9 and had a negative blood test for coeliac - but has many symptoms plus a coeliac brother.

He is going to have a biopsy next month as consultant agrees blood test may have been a false negative.

His symptoms are very similar to your DD's (apart from enlarged spleen). My older DS (4) had the same symptoms and tested positive for coeliac (blood test and biopsy) earlier this year.

She is 5

And thanks for the info!

still feeding!

ds2's neg blood test was ordered by the paed at our local hospital. when it came back negative, I asked the paed to refer us to the paed gastroenterologist (the one who diagnosed DS1). They did that, and the gastroent consultant agreed that a biopsy was a sensible next step.

So, I would suggest you ask for the referral to gastroent, and then discuss with the consultant there & see what they recommend.

good luck. I am really hoping that we find DS2 is coeliac, which seems odd, but I can just see how much benefit DS1 is getting from going gf and it would be great if DS2 also goes the same way.

If biopsy is negative, I am going to go gluten free with him anyway and see fi there is an improvement. I guess this would also be an option for your DD? (after biopsy of course, or if you decide not to go biopsy route)

I am contemplating trying the diet from half term ( just over a week to settle in before back to school and having to send gf snacks and packed lunch). Given we have everything gf except for bread, pasta, biscuits and crackers which I have gf versions of, it would be very easy for me/her. If the immunologist isn't convinced, this might be a better route as I don't want any more unnecessary procedures - she's had blood test after blood test and even a bone marrow biopsy for all the spleen investugations which is so unfair on her.

I would strongly recommend pushing for the biopsy before trying gluten free diet because if your DD improves dramatically with the gf diet it will be extremely difficult to have to reintroduce gluten in order to have the biopsy. I've heard so many heart-breaking stories from mums who have had to reintroduce gluten to their children in order to get the official coeliac diagnosis and how awful it was to deliberately make their child ill again. It's my understanding that false negatives are quite common with the blood test so it really is worth pushing for the biopsy. Have a look at the NICE guidelines: publications.nice.org.uk/coeliac-disease-cg86/guidance

It's a fair point freefrommum - which is why I am waiting till after her appointment on Wednesday to decide what to do. Given we're at GOSH and in the immunology team, if they don't think it's worth doing a biopsy then putting her on the diet is the only possible option.

My coeliac DS gets mouth ulcers - I'd be pushing for a biospy ....

Am going to do my best tomorrow- certainly not going to agree to a (high risk) spleen biopsy before they look at her intestines - which her other doctor wants to put on the table if immunology has nothing...

good luck medjool, let us know what happens.

Good luck. I really hope you get answers soon, it sounds as though you've all been through enough.

Thanks - have printed out NICE guidelines for the appointment. Thanks freefrommum

Easy peasy. Doctor seemed to think it was a logical step to take and he's going to sort out a gastro referral - hopefully to go straight to the biopsy without having to take more time with consultations. Hopefully it will be at our more local hospital too, which has a coeliac clinic.

Wonderful news, so glad it wasn't a battle!

good news - hope the referral doesn't take long!