waiting for biopsy for my 3 year old re Coeliac Disease

[bethylou]

I've posted before about my DS1's dietary issues. The paediatrician convinced us to put him back on gluten (after several blissful months of good health which had taken a year to achieve. He is usually now gluten and dairy free and removing the dairy made the most difference) to redo the coeliac screen and then to perform a biopsy to confirm or refute the diagnosis once and for all. He has now had two coeliac screens that have come back negative (and less than 1). The local hospital does not perform endoscopies on children so we are referred to Birmingham Children's Hospital for it but there has been miscommunication between the two. Finally, we have a date for 29th December, but this will be 16 weeks after we put him back on gluten, rather than the 6 weeks he needed to do.
His symptoms are:
tummy ache
loose, mucousy, slimey stools
awful mouth ulcers
palour (although Hg is 12.4 with two daily doses of minadex)
lethargy
aching joints and bones
night waking
reflux (may not be related)

Last week we saw blood in his stool for the first time (hadn't been looking - he noticed and showed me) it was medium red and within the mucous that he passes. Only a small amount but really shook us up.

We spoke to a registrar from Birmingham on the phone who said they may now do a colonoscopy as well - he will speak to the consultant. If we see more blood we should ring and then take him in. If not, we are supposed to wait another 4 and a half weeks, despite doing everything possible to speed things up. Apparently it is not possible to go privately in this situation (?) PALS are now on the case. We are at the end of our tethers. Most of our friends have said to lie and just get him in, but DH and I are struggling with that as we are such honest folk, but our little boy is now crying everytime he has eaten his weetabix, which we have to keep feeding him until after the procedure/s. He doesn't know yet that there is a link between the pain/blood and gluten.

Any advice gratefully received by tired mummy and daddy.

Bumping, at a more sociable hour!

Aww poor love, no advoce really but am mummy to DS coeliac, he was skinny, had stopped growing in height, dark circles under eyes, tired

He never complained of tummy ache but a couple of months after diagnosis said it was good now his tummy didnt hurt so he must have always had tummy ache and just thought it was normal.

We tried to go private too and got told no as he was 6 ....

He had horrific colic as a baby (maybe related ???) and the first time he got "glutened" after being GF for 8 weeks he got 5 mouth ulcers

Bless him. Sounds very similar. DS1 has such black rings round his eyes that he looks like a panda or hasn't slept for 6 weeks.

I like your name - I had pizza for tea last night and the others weren't impressed. I don't do something like that very often, but had one in the freezer to eat up.

One more bump now the children are in bed...

Your poor DS.

I think you need to talk to his consultant again to see if they are planning a colonoscopy or not. Ds had one and had to be given industrial strength laxatives beforehand - so they need to prescribe these (ds's was at bch too, they sent us the prescription through the post).

Thanks Sarfishmummy. That's useful to know. I have to say that communication has not been great from our local hospital or BCH. I have spoken to PALS and the lady should get back to me tomorrow.

if more blood call and if needs be exagerate the amount of blood and try get him on next available bed for colonoscopy/endoscopy - once endoscopy done you can go back on GF diet - or if near hospital take to A&E in early morning and sit it out til they get him a bed and emergency endoscopy...

if bloods not showing gluten reax for coeliac then could be something else?

bloods are often negative in children, test isn't great for kids.

The registrar reckons that with a negative blood screen, DS1 has a 5% chance of still having coeliac disease. As DH's screen has been negative on two tests though, I still think it will be something else. Our local paediatrician has helpfully said that if it is not coeliac disease, then there is no medical reason for keeping him gluten free (and couldn't possibly be anything else medical!), despite the list of 9 symptoms that I'd just presented him with!

We are looking closely at DS1's stools which is rather foul, but clearly worth doing. Thanks both.

DD (4) has similar symptoms, haven't taken her off gluten yet. Back to paeds in Jan as sick of wait and see approach. She's negative on bloods but DP has coeliac, never tested positive on bloods had to have two biopsies before diagnosed. its not always clear cut

Forgot to say so sorry for your ds and I really hope he doesn't get worse before he gets seen!

My dds came up as strong positive on the bloods and I never bothered with the trauma of the biopsy - my older dd is diabetic and thus routinely tested and when she came up as positive her sister (who was actually a bit symptomatic when she was younger rather than the oldest who was not very obviously so) came up as strong positive too.

I would suggest if the bloods are consistently negative then it has to be something else. They offer this course of action because it is simplest. What happens if it is negative again, then what? It is perfectly possible to be intolerant to gluten and not have coeliacs disease - this is an auto immune disease caused by gluten intolerance. Lots of people have terrible problems with gluten (and consequently dairy) without having coeliacs.

I think if shes not coeliac we somehow need to involve her in the decision. How much is this bothering you? Is it as bad as it seems to us? Its hard to maintain gluten free without medical "back up". The school requires a doctors letter for school dinners etc. Plus as Dp is fully gluten free I know how restrictive it can be and I wouldn't put a child through that lightly. I will probably put her through a biopsy (if the medics think its required) for a definitive answer :(

I haven't tried explaining to DS1 yet about why he has been so poorly. We will take him off it again though as he really can't live like this. DH is gluten, dairy and soya free and it is a pain, but he feels is worth it because he feels so crap when he has some of any of them. I think because DS1 knows that Daddy can't have it either, it makes it easier for him. No doubt we will have some fights over the loss of weetabix and crusty bread which he has really enjoyed.

Pinky I don't thin I'd have gone for the biopsy either if the test had been a strong positive, but it's the uncertainty that made me agree to go ahead, along with wanting to know what damage there may be in there. I have always thought it may just be an intolerance with him, albeit a relatively bad one,and will keep trying bits as he gets older if the test is negative (when his body's had a break and a chance to recover - blood obviously means that something's wrong somewhere) to find his tolerance level and to see if he's outgrown it. The biopsy will help me to know whether to do so or whether we have a final answer. With ulcerative colitis in the family too, I think it's worth doing both investigations at once (although I have no idea whether it can run in the family). If the biopsy is negative, we won't put DS2, who is currently starting to show similar symptoms, through it. Luckily, DS1's nursery have been utterly fantastic in all of this, as the cook has a son who has similar problems. I definitely agree it's not something to do lightly though! Good luck MsPC.