Anyone know a good paediatric gastroenterologist to diagnose a coeliac child?

[Fauve]

Does anyone know the best paediatric gastroenterology department for diagnosing coeliac children in London or the surrounding area? Or the name of a good paediatric gastroenterologist to do a biopsy to diagnose coeliac? We have private health care cover, and would travel to find the right person if necessary. We're just looking for the right person to be referred to.
It looks like ds may be a particularly difficult case to diagnose, which is why we think we may need to see a coeliac expert, rather than the local paediatric gastroenterologist. Apparently you need to be a coeliac specialist to read the lab results in cases which are less than straightforward.
Ds is nearly 13, and has had coeliac symptoms for over a year. His father and paternal uncle are coeliac. He had had two sets of blood tests, which were both negative, but another showed that he has the coeliac gene.
He is missing a lot of school, largely because we can't restrict his gluten intake too much when he is still due to have a biopsy or more tests.
I think we need to find a coeliac expert to do the biopsy and then interpret the results of all the tests so far. From what we've read, they also need to be based in a fully equipped gastroenterology dept which can cope with this kind of case.
Any other advice, insights, or opinions would also be welcome!

My good friend has just had her daughter diagnosed at Birmingham Childrens Hospital. Thats only about a 2 hour distance from London.

I'm sorry I can't tell you a name but could you make some enquiries with them?

Thanks, Emmatom. All and any leads are useful. I think ds is going to be a difficult nut for the medics to crack, having such mixed results.

Hi Fauve

My 3.5 y.o. DD was diagnosed at the Royal Free last may after a positive blood test done at Chase Farm. Her consultant was Rob Heuschkeul (sp?) at the Royal Free and Dr Austin Isaacs at Chase Farm (in Enfield). Dr Isaacs is just a consultant paediatrician, but Dr Heuschkeul is Consultant in Paediatric Gastronenterology.

Her biopsy was done as an out-patient procedure at the Royal Free and although she was a bit distressed when she came round, she was eating within an hour and actually had great fun! They gave us their preliminary diagnosis there and then and confirmed in a follow-up call two days later. They also checked her bloods for the possible associated problems, such as thyroid.

We did everything on the NHS but even so, were seen quite quickly (appt within 4 weeks of referral).

I do hope you get some success very soon. You must be very concerned about your son. I hope this is of some help, but if you need any more info, please let me know.

Fauve, one of my colleagues is a gastroenterologist who is an international expert on the genetics of coeliac disease. He treats adults but has colleagues who treat children, and they work together to a large extent. This is in Edinburgh, so not very handy. He came here from Oxford, and I believe there's a team there doing similar work. If you want to CAT me I could ask his advice, at least?

Thanks, tkband, I'd heard that the Royal Free was good on allergies, so it has been in the back of my mind. I'm not concerned about the pain etc of the biopsy so much as to see that they get an accurate result. Tamum, I would love you to ask your colleague, please. It does look like ds is an unusual case - in that his blood tests are negative, but he has strongly typical symptoms - and so I'd hope that he might be of interest to academics! I'll CAT you, thanks.

You could well be right Fauve, I should think he might be very interested. And teh big advantage of CAT is that I don't have to tell my colleague about my friend called Fauve

yup, herschal at royal free, nw3 was what i heard too...

I have CATed you now (is that the past tense of to CAT?) Coeliac disease does seem to be a bit of a mystery area. I'm having to get to grips with serology, histology, and all sorts of ologies which have never bothered me before. One thing we're coming up against, a bit, is the idea that ds' symptoms must be related to going to secondary school - but even the school (who rang up to ask why his attendance was poor) agree that he's a happy, confident kid with no reason to avoid school.

Shall we offer a prize for the best attempt at conjugating "to CAT"?

Fauve, I'm so sorry, I just realised I have got mixed up- my colleague works on the genetics of IBD, and that includes Crohn's but not coeliac. He undoubtedly deals with coeliac at a clinical level though, and is well-connected, so I am still hopeful.

sorry to hijack but you guys might be able to tell me... is it absolutely necessary to have a biopsy to diagnose coeliacs?

my dd is only 2 his week and is awaiting a paeds appointment to check for coeliacs and i'm really hoping they'll be able to tell without putting her through the trauma of a biopsy at her age

I just did a Pubmed search (to make amends ) and Paul Ciclitira has published lots on the genetics of coeliac. He has a website here and it says he sees patients at the Lister. Whether he treats children is not clear, but it might be worth a try?

dh is gastroenterologist - he's in work at the mo., but I'll ask him when he gets home if he knows anyone nationallya s he doesn't covre paeds really. There'a a paed Gastro at North Tees on Teesside not sure of his credentials and his name escapes me at the mo, sorry. Also, bit too far to travel I guess. I'll get back to you as soon as I can.

I'm very touched by the number of responses here! PinkTulips, I think biopsy is the only definitive test for coeliac, but blood tests are supposed to be very reliable, which is why my ds' case seems so unusual. If your dd has a blood test which is positive for coeliac, then that may be enough at her age (although I'm no expert on what they do for younger children).

I do know that ds has got to have a paediatric gastroenterologist do his biopsy because he's under 16; we were aiming to have it done by the consultant who did dh's biopsy, on the grounds that he'd be familiar with the family pattern, but he's not allowed to.

Thanks to everyone for their suggestions - keep 'em coming! - we're about to go out to see Daniel Craig in Casino Royale, but after that I'll get onto those websites. Any London hospital would be fine, and we would certainly travel further if necessary.

Ds says thank you...

Fauve - just seen this and so sorry I can't help with any expert advice - just hope one of the connections below works out! You've probably seen my thread about our local paediatrician almost refusing to do the blood test on ds2 because he's a good weight and height . She also refused to do a thyroid function test on him - even though i've got thyroid disease as well as coeliac and the two can be related...

so there's no way I'll be recommending our lot! If you do get your hands on a good doctor I might be asking to borrow them..!

thanks fauve.... thats given me a bit of hope at least.

sorry again for hijacking

My DS sees a wonderful consultant paediatric gastroenterologist called Dr Muftah Eltumi for his reflux problems.

Dr Eltumi works out of The Portland in London and the Bupa Hospital in Bushey (nr Watford). His website address is: www.paedgastro.com. His website details all his specialisms and his contact details.

Elibumbum, thanks so much for that - we have Muftah Eltumi's name as chair of the Coeliac Working Group of the Brit Soc of Paed Gastroenterology Hepatology and Nutrition. Didn't know he worked in London. Will check his website - but personal recommendation is vital for me, so thanks!

Hi Dottydot - bit of panic here in the Fauve household - the dr who was meant to be doing the biopsy just seemed a bit hopeless on the phone - suggesting (to dh) that it could be IBS and that neg blood tests mean no coeliac and no further investigation down that road - hence mad dash to change to someone better informed. Also slight worry about MRSA and other risks in a crap hospital (I know, I know, not v likely, but I need to have confidence in the medical surroundings as well.)

Thank you so much to everyone for all this info, which I promise to sift through and report back, hopefully to the benefit of others as well, since this is clearly an area of muddle, myth and misinformation. I shall naturally be on a mission to establish The Truth

Pinktulips - as far as I'm aware I think a biopsy is necessary to absolutely confirm coeliac disease. Although the blood tests give an almost certain indication, they need to check to be 100% sure and also to check the severity.

I posted about my experience with my (then) 2.8 y.o. further down this thread - if I can be of any help to you, please CAT me. If it's of any reassurance, my little girl is now 3.5 and since diagnosis last May she has gained over 3kg (more than 30% of her then body weight) and grown 7cm. She has adapted to her gluten-free diet really well and if she is unsure will ask us (or her teachers if at pre-school) if something unfamiliar has gluten in it.

Sorry for hijack Fauve - hope you get somewhere soon.

tkband3.... could you email me? dee_pinktulips @ hotmail . com (without the spaces)

i don't have a credit card to pay for CAT but would love to talk to you about what you had to go through with your dd

Pinktulips - have emailed you

PinkTulips and others, I'm finding this forum useful - it seems a very active coeliac discussion board. Nothing's as good as Mumsnet of course

Dottydot, I hadn't read your thread re ds2, sorry to hear you've had problems . One of the problems with my ds is that he too is a big strapping lad, so he doesn't look like a classic coeliac child. However, it may well be that he would be bigger if not eating gluten - kids grow enormously tall on my side of the family

Fauve - I'm on that forum - it's quite handy - people tend to respond quickly to queries, which is nice (of course though not a patch on MN!).

Yes, the doctor almost refused to do ds2's blood test because he was "the right height and weight"... Even with very limited knowledge on the subject I know that lots of coeliacs (like me!!) are big and tall. Anyway, she did it in the end but still refused to do a thyroid function test on him.

Just reading your later post - a negative test DOES NOT necessarily mean he's not Coeliac - it's a bit like a pregnancy test in that you can get false negatives but not false positives.

It's sooooo frustrating for you - and your poor ds.

Well, happily I'm making v good progress this AM thanks to everyone's suggestions - at the moment it looks like the best bet would be to go to the Portland Hospital (which even has a reassuring box on its website about combating MRSA), to see either Muftah Eltumi or Mike Thomson, both of whom come highly recommended here or on the coeliac discussion board. I showed ds Dr Eltumi's website and he was duly impressed But Dr Thomson's is almost as impressive...

Sounds good Fauve - fingers crossed you can get an appointment soon - keep us posted!

Thanks Fauve have had a look at that site