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!

I've been reading this thread with interest as I am taking ds2 to see his paed tomorrow and I was planning on asking for a coeliac blood screen to be done. The shorty story is the ds was diagnosed as having a very mild wheat allergy a year ago. We thought that this was causing his lack of weight gain and growth, not to mention the 6+ dirty nappies a day. We were told that as the allergy to wheat was barely positive that we didn't need to exclude it from ds's diet, but we could try for a few weeks. The difference was amazing, the horrid smelling, mucousy nappies were gone and ds seemed more comfortable. A year later, ds's weightgain is slower than expected and his stools still aren't formed (not toddler diarrhoea, older ds had that, I know what it looks like!). We have only cut wheat from ds's diet, but not gluten and he could stil be getting gluten, just not from wheat containing products.

pinktulips, I have also heard that a biopsy is the only "true" way of diagnosing coeliac, but that in young children, it is easy to get false negatives.

Excuse me jumping in but have been reading this thread with interest. Can't believe doctors are saying they won't test because the child 'seems the right size for his age'! Outrageous. Coeliac disease manifests itself in so many ways - sometimes with barely any symptoms and is notoriously difficult to diagnose.

I self-diagnosed myself five years ago after spending all my life being told I had IBS, chronic fatigue syndrome, unexplained hair loss etc etc. The difference in my life, health, energy levels etc has been astounding.

My DS is six months and I'm just starting to wean him and am obviously scrutinising his reactions to food. We live in Madrid, so it's going to be interesting seeing how the medical system handles it if we do have a problem....

I've got all my fingers crossed for you guys. I really believe that way more people have coeliac disease than is realised. Wheat/gluten has limited nutrional value anyway - I eat much healthier now, since cutting it out.

Hope your son's health improves soon.

Just wondering which blood test has come back negative?

Tissue transglutimase is the most recently developed and most sensitive and specific blood test. Has your ds had this one done?

I need to ask for the paperwork re the bloodtests, but I think he's had them all done, and they're all negative. From reading loads of stuff on the internet, it looks like he may be at such an early stage of coeliac that not enough damage has been caused to show up on blood tests - so lots of tissue samples will need to be taken from his intestine to try and catch any early inflammation there. Obviously it seems to me that it would be great to catch the disease before significant damage is done. We want to have a concrete diagnosis so that we feel justified in putting him on a really strict gf diet (necessary for coeliacs). We feel that without that, it will be harder to convince him that ingesting even a speck of gluten (from a contaminated toaster for example) will harm him.

ImpyChica, I agree with your post. Heartmum2Jamie, how did your appointment go? Good luck - it's a really hard slog, isn't it?

We're now seeing Dr Mike Thompson at the Portland in a couple of weeks.

Ds's appt was disappointing with regards to asking for testing. He refuses to test for coeliacs as ds is on a wheat free diet and he says that you can have a wheat allergy without being coeliac. When I asked how come his wheat RAST was barely positive at 0.5 (0.35 negative) but we have seen the biggest improvement by taking him off wheat, his answer was that the RAST is not 100% accurate and that ds could be more highly wheat allergic than we thought. I am not really happy with that answer, but it obvious I will get nowhere with the paed. I will try again when we go to see the allergist/gasto paed in March. I do not think that i would be willing to put ds back onto wheat and make him miserable just for the sake of a test, although may try his completely wheat & gluten free and see if there is an improvment.

Other than that, is there any other way to find out? I would prefer a blood test to check for the gene as opposed to a biopsy right now. I would go private, but the private paed consultant is the same allergist that we see on the NHS....hmmm, perhaps he would be more willing to do the test if I pay him, lol!

my dd2 has been through all this. The RAST tests came back negative on everything and the coeliac blood test came back negative, but when the consultant started exclusion diets, she started getting a bit better. She's now off dairy, soya, eggs, wheat and nuts. She also went through a gastroscopy at Great Ormond Street (it's an endoscopy and colonoscopy at the same time when they look with a camera and take biopsies). This showed lots of inflammation and flat villi, but that it wasn't coeliacs. The diagnosis is that she has multiple allergies (incl wheat) and a sort of IBS thing...even on this diet she still has lots of flare ups (terrible pains and several diarrohea nappies a day). THe thing with RASt is that they're reliable if positive, but not if negative....

this post is years old but I was looking on here regarding coeliac disease and just wondered what the outcome was, did your son end up having it?

this post is years old but I was looking on here regarding coeliac disease and just wondered what the outcome was, did your son end up having it?