Neighbour is feeding her coeliac child gluten

[getonthearkunicorn]

More of a, 'wwyd'?
My Neighbour, who I see a lot (children are the same age, I often watch her children not always willingly )
Her DS is nearly 5 and still not potty trained, I've drawn up charts for her and given her tips (she sometimes struggles with him as she is pregnant and has a 1 year old) but she didn't keep up with it. She'd get very upset when he'd have an accident and place him back in a nappy.
However, she has told me that she's told consultants that he cannot feel when he needs to poo, however I have seen him ask her or partner to use the toilet, and they've not reacted quick enough. In my care, he runs and hides whilst doing a poo - so he definitely knows it's coming.
My heart breaks for him as he is being called 'smelly' at school.
Newest worry is that the consultant has ruled out Crohn's disease in her DS (he is very under weight) and speculates it is coeliac. She has been given the advice to start the gluten free diet immediately until he has his appointment next month (this was over a week ago)
He has eaten pasta, McDonald's, cakes, etc. I had him one morning so she could attend a midwife appointment, and made sure we had gluten free pancakes for him. She said 'you shouldn't of bothered, I haven't'
I keep gently saying to her that it's really important she follows their advice. But I don't want to patronise her, I know she finds it tough.
He's had 9 days off school already :( (obviously it's half term now)
I'm planning to cut down the amount of time I see her, as I find it very frustrating that she doesn't take his issues seriously. There are other reasons too but unrelated. It's also made difficult by my DP being good friends with her DP.
So what would you do? Should I just be butting out? It makes me worry though!

Coeliac disease presents with different symptoms in different people - my DS does not have an immediate reaction when he eats gluten, although many others do.
However all coeliacs need to avoid food which has more than 20 parts per million gluten because of the long-term damage it does to the gut. You may be able to tolerate traces higher than that, but it is still very bad for you.
He manages to eat out because the awareness here in the UK is pretty good and many restaurants now are accredited by Coeliac UK and are safe to eat in. We had a great meal at Cote Brasserie the other day - totally GF separate menu, order taken by a manager, all food came out of the kitchen labelled. GF Dominos is also a godsend as DS has just started at Uni, as are most of the pizza chains (& others).
Lots of good Facebook groups provide advice on where is safe to eat out.

some children with additional needs are very slow to potty train.

some children with disabilities are slow to toilet train and even the so call specialists in one area have no idea of the connection to another. (child diagnoised with one condition that causes various probelems and othe r specialisms not knowing that these other isses are linked)

From the Domino's UK website:

We have been working on this product with Coeliac UK for a number of years. Our team members have been fully trained on the new product, to make sure that they understand the controls around handling gluten-free pizzas and ingredients.

We have a range of controls in place, which have been thoroughly tested to ensure our gluten-free product will be suitable for coeliacs. These include:

The gluten-free bases are made in dedicated central production facilities.
Every gluten-free base is stored in a sealed pouch before use. Before opening the base, the team member must wash their hands.
The gluten-free base is easy to differentiate from our classic crust as it is a slightly different size.
Different size screens are used to cook gluten-free pizzas.
All of our makeline teams have been trained on the correct handling of the product and which toppings contain gluten.
Toppings which contain gluten are clearly marked on our website and will be highlighted on our printed menus from January 2013.
One team member will take ownership of each gluten-free pizza from start to end of the makeline.
Fresh sauce and a clean spoodle will be used for all gluten-free pizzas.
Your gluten-free pizza will not be sliced.
We do not use separate toppings for gluten free pizzas. Only three of our toppings contain gluten and the risk of cross contamination from these toppings is eliminated by the controls in place. This has been validated by testing.
Within each store, a manager or appointed person will conduct a hot rack check to confirm pizza is on the correct base, correctly topped and boxed before it is sent for delivery.
Team members will place a sticker on the box indicating it is gluten-free.
The corn flour we use for stretching most of our pizzas is gluten-free. We do not handle wheat flour in any of our stores.
We will not be using separate ovens for our pizzas – thorough testing has concluded that it does not present a risk in our stores.

Just popping in to say the diagnosis process is different with children sometimes. When I've worked with children with suspected celiac, they're told to stop gluten before diagnosis. Then go onto a gluten diet for a set time and have the tests done. I think it's so they can see how going gluten free effects them before doing invasive tests.

I think your best bet is to talk to the school. They will surely already be on their radar. The problem is that the toilet training and attendance issues are being explained by the medical concerns. But if you talk to them especially about her telling you she isn't bothering with a gluten free diet. It should ring alarm bells. Stick to primary evidence, not "I think" but "I've seen" or "she told me".

I hear you about all the deaf ears, believe me, I've been there. All you can do is raise your concerns with the right people, what they ultimately do with your information is not your call. It's also fine to distance yourself if you need to...they aren't your responsibility really. After all you can't give him a gluten free diet or toilet train him in the limixed contact you have. I know that's hard though, seeing this stuff can be tough but you can't singlehandedly change it.

OP, who is calling him “smelly” at school and how do you know?

It sounds like he's had an endoscopy where the appearance was suspicious for coeliac disease, so they've been advised to start gluten free diet straight away without waiting for confirmation with the results of biopsy and blood tests.

Understanding a gluten-free diet takes time and experience. At this early stage I'd suggest being supportive where you can, and not worrying too much. It sounds like this is a family where it is not likely to work much until they have had dietician input. Ideally this could be the extra step that leads to them getting more hands on support which is sounds like this mum could do with. Perhaps you could express your concern to their GP and/or the local HV if you are able (just don't expect them to tell you anything if you do so).

suburban he has told me he is being called smelly by the other children.

Apparently only his class teacher is allowed to change his nappy - not the TA - so if he has soiled his nappy and not notified her, it can go a little while before it's changed.
He has come home in dirty nappies before (I know because one of the times I collected him, whilst neighbour was in hospital)
So I imagine he's being called smelly, once he has soiled his nappy. I don't think he'd lie, he's at the stage where he is still brutally honest!

Thank you , lakes , but I'm a qualified nurse ( retired) and my dd is 18 and in control of her own disease and doesn't need your concern , she has a life that she enjoys slightly risking cross contamination and has no desire to live in a plastic bubble environment only self catering and going camping . Each to their own , she is fine and from a coeliac POV very healthy as is shown up in all of her blood tests .

My husband has recently been diagnosed as a coeliac after he bled badly going to the toilet and passed out on the loo! It was a very sudden intolerance. Despite how sensitive he is we do still eat out. He can eat at the burger co and a variety of other eateries with no ill effects. His is quite serious as he ended up in hospital BUT it presents itself differently than with some other coeliacs. He's had Ask pizza and had no issues from their GF menu.

As for this little boy, it sounds like a bit of neglect if you ask me. I have a friend (I'm saddened to call her a friend really) but she will present herself as not very bright when it's far from the truth. She's quite manipulating and it took about 12 years for me to see it. Her kids have had SS intervention but again it took 9 years of a lot of reporting before anything was done. Her children are finally having help (I can't divulge more as it would be outing)

We have a specialist centre at our school and a high number of children with toileting issues.

I honestly can’t imagine a scenario in which any of our class teachers would abandon the other 30 children to go and change a child’s soiled nappy. Especially as, unless they were in view of another adult, there would have to be another adult with them.

Are you quite sure you’ve got that right, OP?

Oh my. My daughter too have Coeliac Disease. We eat out regularly and she has not been glutened. She does not have silent coeliac disease either. I feel you most not be in the UK Lakes as there is an increasing awareness and availability. Controlled coeliac disease does not mean stomach cancer.

Suburban this is why I wrote 'apparently' and this is what I keep saying, I honestly don't know if what she is saying is true or if she is making it up as she goes long.

Shadow that is so sad. 9 years? That's disgraceful. I've submitted yet another report to NSPCC. If they just get the Health visitor to call/visit I'll have to think of another plan, because she is so blatently turning a blind eye.

I have coeliac disease. It was diagnosed a long time ago the old fashioned way with a series of three endoscopies i.e. I ate gluten and test showed my stomach lining was destroyed; stopped eating gluten for six months and test showed my stomach lining had healed; ate gluten again for six months and test showed my lining had been destroyed again. Interestling, I have accidentally been served food with gluten several times before and not experienced any sickness and I also do not get sick on the odd occasion where I eat take-out chinese with regular soysauce. But I still avoid gluten because it's the long-term damage which is concerning. I think it is very kind of you to be concerned about this child - and I also agree with others that you should talk to the school or even your doctor (as I'm guessing being neighbours you would go to the same doctors surgery). Signicantly, some coealics are atypical and experience constipation rather than loose bowels. This child may be avoiding the toilet because of pain and sometimes when a child is very constipated, liquid stool can seep around the stuck stool and they soil themselves.

Whether the child has been diagnosed as coeliac or not, it sounds like his DM is not coping for what ever reason. I hope the little lad gets the help he needs.

Gluten isn't like nuts. A trace amount is not going to cause problems.

myDCareMarvel ha ha! If only it were true!
Please educate yourself before posting about diseases you obviously have no knowledge of.

Concrete I will let my doctor know .