If not coeliac what could it be?

[wangle99]

DS has hospital appt tomorrow with Dietician and new Paediatrician.

He's tested negative to coeliac disease twice now (both times had been on gluten fully for weeks and weeks before).

If he eats gluten or wheat he gets stomach cramps that literally double him over, he has diarrhoea like water that floats and is foamy (sorry tmi!) and smells worse than the dog.

I'm worried if not coeliac disease something really serious that they are missing. He has been poorly really since birth as didn't gain weight properly and had awful green foamy poo - I breastfed him if that is relevant. (I think this is one of the reasons why perhaps can't be coeliac disease).

Sorry this is long but I am getting a bit scared now of what DS has got

Has he just had blood tests for coeliac or a full biopsy ? The blood tests are notorious for false negatives, and I know people who had normal bloods and very severe bowel damage on endoscopy

Sounds like my daughters symptoms for coeliac. Can you push for a endoscopy anyway to rule it out.
I tested negative in blood tests twice before finally getting a positive result then an endoscopy which confirmed it. Good luck, try not to worry too much.

He has had just bloods for coeliac, paed said they weren't even close to being positive however when we first saw paed he took one look at DS listened to my description of symptoms and said 'oh that's definately coeliac disease'. He was really surprised that it was negative.

Roll forward to now, that paed has retired and we are seeing someone else tomorrow.

You think I should suggest a biopsy then if not recommended?

I had heard that blood tests can be not great but not actually come across anyone it had happened to (thanks mrsdisorganised).

Trying not to worry but its so hard.

Yes, I'd def push for a biopsy

Do you know what tests were done - if you look here

coeliac.info/suppboard/viewtopic.php?t=796&highlight=iga

you will see in the third post an explanation of how if a patient is IgA deficient there will be a false negative.

I would certainly ask for a biopsy given the severity of his symptoms. Hope the new paed is helpful tomorrow.

I've heard that blood tests for coeliac can often show false positives in children. The only certain way to diagnose is by biopsy and given your son's symptoms, I'm surprised it hasn't already been suggested.

Of course the only problem is, you'll have to put him back on gluten until the biopsy, which is obviously difficult for him and you.

DD1 was diagnosed by endoscopy after testing positive 3 years ago and my DTs were diagnosed earlier this year, just after positive blood tests as with our family history the consultant agreed it wasn't necessary to put them through the general anaesthetic. If you would like any info/advice on the endoscopy don't hesitate to ask. Whereabouts in the country are you? There's a fantastic paed gastro at the Royal Free if you're anywhere near London.

Sorry, meant to say hope the paed is helpful tomorrow.

Sadly nowhere near London, am in Cornwall whether the hospital services aren't the greatest, this appointment has been posted twice (possibly three times can't remember) this year already.

I wondered perhaps if DS hadn't been on gluten long enough before - we'd done 6 weeks but I heard that perhaps needs to be 3 months?

I think I'm worried that he'll go back on gluten, have however long of symptoms, have a biopsy and it be negative lol

Think I need to be a bit more optimistic! The dietician is coming in with me tomorrow to back me up on how the gluten free diet has changed DS. When first on it he grew so quickly the dietician was gobsmacked!

Thank you.

Given his symptoms when he eats gluten and the change when he's gluten-free, I'm amazed they've not diagnosed coeliac already!

I think Coeliac UK now recommend 3 months on gluten prior to testing - I know they're a bit funny about speaking to non-members, but if you can't get any info from them, I'd be happy to call them for you. Just let me know what questions you'd like me to ask.

Best of luck tomorrow.

Thanks tkband3 - the thing is we are members of coeliacUK - paediatrician was so sure it was going to be positive he recommended we join and authorised it or whatever he does to get undiagnosed to join.

Goodness 3 months a long time, at least that would cover the summer when not at school.

Thank you everyone.

Good luck

The recommendation used to be six weeks on gluten before the biopsy but it has been increased to three months. At the moment the CUK website says "a minimum of six weeks". Here:

coeliac.info/suppboard/viewtopic.php?t=504&highlight=three+months

it states that the NHS guideline is three months on the gluten containing diet but the link is broken.

On symptoms and improving on the gf diet the paed may be willing to "treat as coeliac" - i.e. prescriptions, etc. but without having to have the biopsy.

You can be gluten sensitive rather than celiac and then the tests won't pick it up.
However, if you keep on eating gluten for years if need nbe, you will eventaully get enough damage to register in terms of NHS standards.

If you want to prevent illness, push for treat-as, but if you want to acquire it, keep on eating gluten...

Well.. we saw a new paed this morning and he was lurvely actually treated DS like a child instead of throwing adult comments at him!

He said he is going to diagnose DS as having wheat intolerance, this paed has an interest in allergies and intolerances and he said he knows loads of doctors don't like the word 'intolerance' he does. He also said he's going to speak to a gastroenterologist colleague about whether DS should have a biopsy and also going to read a new study out on coeliac disease with reference to biopsies also.

He was happy DS has enough fat on him and is growing normally now (which is why he wants to investigate whether biopsy be useful at this stage as doesn't want DS to stop growing).

This will make sense to all you in the know, he said the protein that can be deficient in people that causes negative coeliac tests isn't deficient in DS. Hopefully that makes sense!

I'm feeling happier as this Paed was fab and the dietician was great too. Feeling alot happier. Oh and he examined DS as well and said tummy feels all normal too.

good news and your dr sounds very enlightened, hang on to him!

Great news - glad the reason for false negatives had been ruled out. Also glad he's said he doesn't want your DS to stop growing so hopefully he won't go for the biopsy which would be nicer for your DS. What a great paed - your DS should flourish under his care.