Anyone know a good children's dietician? For coeliac child.

[megandraper]

We are gluten free and have seen the NHS dietician.

But I feel there's still more that could be done and could do with a bit of help - more than the NHS can provide.

Nearly a year g-f now, and DS1 (5) still gets stomach cramps every so often, and sometimes in circumstances where it seems absolutely impossible that he could have had any gluten.

Last time was this weekend - all he had eaten was a g-f breakfast cereal, some rice cakes (both of which he eats almost daily) and some honey on the rice cakes (which he doesn't have often). The honey was a new bottle. Other people have suggested that the honey could be feeding 'bad' bacteria and giving him a stomach ache that's unrelated to the coeliac.

I think I'd like to have a few months with close dietician support and see if we can work out if there are dietary issues that could be solved.

We are in Yorkshire, but would travel / try telephone consultations to get a good dietician who knows their stuff.

Sorry dont know a dietician but wanted to suggest coeliac.org.uk as a good source of information - someone there may know a dietician and they also have local groups which can be a good source of information. Also I do know that dairy products can sometimes cause stomach upsets for coeliacs particularly the first year of recovery.

my dd still had positive coeliac screen a year after diagnosis - it can take time. it became negative after about 18 months. we were sure she wasnt getting gluten.

check things like contamination scrupulously in your home and outside.

he might be picking up specks.
is your home entirely gluten free now?

if not, then how do you separate gluten and non gluten? that is maybe something to look at. also at school - school may be getting it wrong. it may be gluten play dough he is eating etcetc .

i am not sure you would be told anythign differnt by a dietician tbh - try local coeliac org group ?

keep a careful food diary.
impress on school about it and things like washing hands after play dough etc.

I stopped going to our dietician she was useless.

My coeliac ds reacts to maltrodextrin, dextrose and some fructose (these afaik can all come from wheat and "normal" coeliacs CAn cope with them) but we are super sensitive

Thanks all. Yes, haven't found dietician very useful. I feel we're on top of the gf diet, and I am pretty confident that no gluten creeps in at home.

I feel there might be something else going on to cause the stomach aches, and was looking for some help in identifying what that might be. I thought a private dietician might be able to help.

Did you cut out dairy to start with as well?

Undiagnosed coeliacs struggle to digest lactose, so ds went dairy free for six months when he first started the gf diet. Once his gut had time to repair itself we reintroduced milk etc.

Our consultant told us not to cut out dairy. I haven't seen a link with dairy, but then he does have a lot of it (milk with most meals and cheese frequently too).

Would his gut repair itself (because of being gf) even despite eating the dairy?

I'm loathe to cut it out unnecessarily since the calcium is so important, but wondering how I would know if there is a problem there.

I would recommend Justine Evans in Hampton. She has looked after our family for a few years now. I did see a nutritionist in Yorkshire, one in Manchester and have spoken to the company who do the York test but only Justine seemed to have the most complete set of answers for us which were tailored rather than seeming to be following some sort of generic advice which provided part but not all of the solution.

Justine can arrange for private tests to be done, DS2 had gut bacteria imbalance with high levels of citrobacta and something I don't remember which were treated with specific antibiotics. She also does intolerance testing, vitamin and mineral levels among other things. In our experience, it was necessary to exclude all foods causing intolerance and support the gut / immune system with specific probiotics, long chain fatty acids and high doses of vitamin C as well as plant based enzymes. With time, intolerance to most foods has reduced significantly and we have been able to reintroduce a lot. I was convinced that the intolerances were stopping the body absorbing nutrients and that continuing to eat them was counter productive. She will also advise on alternative sources of calcium.

It is a long way to go for a consultation but you may be able do some later ones by Skype and if it works for you I can also share how we check tolerances in between consultations if we suspect things have changed but don't want to risk reintroducing if you are wrong.

We noticed a definite link with dairy. That was what we originally thought the problem was, not gluten at all!

I was confident getting enough calcium since had had a child who was dairy free due to allergy before.

If the gut has healed due to no gluten, then dairy should be fine, but if you are getting some gluten traces, then there may still be problems occasionally.

Thanks Misty - I will look into Justine Evans. Much appreciated.

Silas - DS had some blood tests recently and I asked them to check his coeliac antibodies, must follow up result and find out.

Does your DS have 'gluten free' products that contain codex wheat. Some people can react to the tiny amounts of gluten that is allowed in food labelled 'gluten free'.

That is a good point Charming. I think I need to look more closely at that.

Would it always be described as 'Codex wheat' on the label, or might it appear under other names as well?

Thank you.

Hi,
I would definitely not cut out dairy unless she has been shown to have a dairy allergy. Some children with coeliac disease can also have intolerance to other foods. It may be worth asking your dietitian/consultant about allergy tests to other allergens or ask your dietitian about excluding other things such as wheat etc in a controlled way to see if symptoms improve without compromising nutritional intake. Has she had her coeliac blood test repeated? This would tell you if she is still reacting to gluten and rule this out as a cause of her symptoms.

I would be careful about people offering allergy test etc that are not the NHS as many have no evidence they work and will tell you to exclude lots of foods necessarily. Also be careful about who you pay for advice may sure they are a dietitian registered with the HPC as anyone without any training whatsoever can call themselves a nutritionist whereas a dietitian has to have completed an accredited degree.

Hope she feels better soon.