AIBU to expect to be told if you’re giving my gluten intolerant child gluten?

[AlohaMolly]

DS is 3 and in nursery school. I wrote gluten intolerant on the medical form and spoke to the teacher about it before he started. There are 40 children in his class, so I understand that it’s a big class, my child isn’t special etc. I was a primary teacher before I had DS so I really do get it!

MIL picks DS up on Fridays and last week she said all the children came out covered in flour and clutching a biscuit each, which she let DS eat. That evening, and Saturday, he complained of a stomach ache and was pretty miserable - which is generally how he presents when he’s had something containing gluten.

Today, when I picked him up, I asked his teacher if the biscuits they’d had were gluten free and she said no, they were normal flour, but it’s ok because they weren’t allowed to eat them in school. I said... but DS is gluten intolerant, he shouldn’t be eating normal flour and she just repeated that they didn’t eat them in school.

I’ve offered before to bring a supply of GF cakes/biscuits/bread for her to keep in class, as they have toast for snack on Fridays and I don’t want DS to miss out if treats are given out etc. She’s always said it wasn’t necessary.

If I thought about it, when things like baking cake up I assumed that one of the following would happen -

1. GF flour would be provided.
2. I would be asked to provide GF flour.
3. Whoever picked DS up would be told that he had something containing gluten.

When I taught, if I had a pupil that had food intolerances I would provide alternatives. I would never have given a child something that could make them ill and not told someone.

AIBU to be annoyed? DS has often complained about having a poorly tummy since he started, so I’m now assuming that they just give him the same bread as everyone else for toast. He’s also told me today that he had cornflakes and milk for snack and I just don’t believe they’re gluten free cornflakes now.

DSis is coeliac without a diagnosis too. The tests come back negative and the endoscope showed very little deformation of the scilla.

But the specialist put her on his list as her symptoms were so strong. He said that the diagnosis is really not reliant on test results alone and that the food diary should be given equal weighting.

whynosnowyet I know, and she feels terrible. But she assumed because it came from school, who know about his intolerance, it was safe.

meglet it’s hard isn’t it? He once had a mega mega reaction to branston pickle - I’d put a tiny bit on a (GF) sandwich for him and didn’t realise it had barley in

My dc are vegi. I always double check. Dd made something with lard once despite me speaking to the cookery teacher the day before...
Buck stopped at mil imo.

A few of you are making me think I should take him back to the doctors to investigate further? I read that you have to have gluten in your system, though, for an intolerance/coeliac to show and I don’t think I can put him through two weeks of gluten. Or myself to be fair, the sleepless nights were horrific!

I think you need to use the word allergy not Intolerance.

If you have anything from the paediatrician or gp that backs you up take it in and kick up about it. Intentionally feeding a child something you’ve been told not to is ridiculous, in fact it doesn’t have to be medical... there’s plenty of religions that don’t allow various things and should be respected.

If they ask why you’ve not brought it up before you already know the reason, like you said above too many sweets/faking it for whatever he doesn’t want to do as you assumed they’d take an intolerance seriously.

I’m assuming you were meant to use your psychic gluten spotting ability to remove the biscuit from him?

My son is the same clear coeliac blood test age 4 but exceedingly sensitive to gluten. His allergy specialist said often the blood test won't show coeliac until they are older. Also often a biopsy is needed to give diagnosis. My MIL was clear for her blood tests but positive with the biopsy. His nursery are amazing and would not have done this. They have a duty of care and this is negligent you could report to Ofsted as a safeguarding issue if you are unhappy with the managers response. They should also provide the gf food and cooking ingredients but I did often supply them for ease. They gave me a list each half term and we organised it together this is the same with his primary school. It is just not acceptable.

It is 6 weeks of gluten exposure needed for the lood test. I have declined a re test as I feel he is too young at 5 and the results are often not strong in young children. We will re test when he is 10 as advised by the hospital specialist.

I would be fuming. If he turns out to be Coeliac it is a serious autoimmune condition (coeliacs are entitled to free flu jabs etc. As illnesses can affect them more severely). Several of my relatives are coeliac and couldn't be in the room with toddlers flapping flour around as they would cross contaminate the whole room!

As the nursery were aware they shouldn't have let him take it, I don't think it was unreasonable for MIL to assume it wouldn't have gluten in given that she probably knows they have been told. You sound reasonable in even offering to bring the ingredients in, so there was absolutely no reason for them not to let you know.

Aside from the nursery teachers clearly being dangerously uneducated about allergies, the use of the word 'intolerance' is the problem here.

What your son has is an intolerance, but as someone who has both an intolerance (soya) and a serious allergy (shellfish), and a DD with both an intolerance (dairy) and a serious allergy (egg), the word 'intolerance' is almost always scoffed at.

Like you're making it up. Like just because the symptoms are 'just' stomach cramping and awful, painful trips to the toilet, they're somehow exaggerated/not serious.

Call it an allergy.

You are right to be annoyed.
Gluten intolerance is a medical condition. Just a small grain of gluten can cause inflammation in the gut. This in turn prevents the body absorbing nutrients.
A definite diagnosis is not established just by a blood test. There is so much ignorance around this subject unfortunately.
I have cared for a child in similar situation.and the nursery play dough was made with GF flour.
Your child could easy have consumed a grain by playing with the flour and having it in his hands.
Ask for a copy of their health policy and complain to head teacher/nursery manager. Ask them.how they will prevent this happening again. If not satisfied report to Ofsted and move child.

It seems very irresponsible but you really do need the medical diagnosis rather than just telling the school, lots of parents list a variety of unproved intolerances so schools tend to only make adjustments with a drs letter

I have a GI child in my class so I use GF flour for him.
She should have been better prepared and she probably wanted him to still be included, but your MIL shoulders some blame because she let him eat it.

Seems to me that the school did ok. It was your MIL that allowed him to eat the biscuit

Yeah I'm kind of on the schools side. It was your MIL who saw them covered in flour and let him eat the biscuit.

You don't know about the bread and cornflakes for definite do you need to follow that up separately.

I have a ds with coeliac when he was diagnosed it wasn't as well publisised as it is now. I made a pack up for school that got passed from teacher to teacher as he moved through the school. Get in touch with the coeliac society see if they can give you some information.
I'd want a meeting with the teacher and also put in writing your expectations. I've always had an agreement that I would send alternative in for ds when baking also he had a packet of chocolate bars which the staff could give him if the children were getting a treat.
Re diagnosis I would go back my ds has refractory coeliac kept getting negative blood tests it took years to be listened too and get a diagnosis - he's now partially tube fed and is so much healthier and happy.

Butterfly I offered again today to bring gluten free biscuits/cakes in and she asked why. I said so he can have a treat at the same time as everyone else and her response was that it wasn’t necessary

I do get that it’s hard work and I know some people don’t ‘believe’ in intolerances. I also get that MIL should have asked - we don’t accept food from birthday parties/at friends houses etc without checking or when we are out, I think we all just assumed that school was a ‘safe’ place IYSWIM? Lesson learned!

her response was that it wasn’t necessary

You need to tell her that it absolutely is necessary as they are letting him have things with gluten in. I think you might be being too polite!

You need to ask for a meeting to discuss how to manage his diet at school.

Messages at the door and in passing is not enough.

Don't dwell on previous mistakes, ask 'how can we make sure DS gets to join in with baking and snacks etc, without being exposed to Gluten?' Offer to check packets, to send in substitute flour or alternatives. Offer to brains storm gluten free snacks and baking activities so that everyone can do the same (rice crispy marshmallow treats, for example).

If he reacts to Branson pickle, intolerance isn't a strong enough word, as far as the nursery is concerned.

Gluten allergy to that extent really requires you to provide his foot to the nursery. No school is going to be able to check obey it's he comes into contact with, to that extent.

I had a child with that level of allergy in my class (special school - we had breakfast in class every day). Every Monday his mum provided a gluten free loaf and a packet of biscuits, so he could have toast with his classmates, and a biscuit at snack time. (Obviously he also had a packed lunch from home)

Foot? Food!

Oh for goodness' sake.
How did 'everything' turn into "obey it's"?

saraclara I think I will be taking bread, cereal and back up treats in tomorrow. He doesn’t seem to suffer with cross contamination etc, just if he eats it. He loves his food and if he had eaten a biscuit because he’d swiped someone else’s or something, then that’s different (and his own fault!!) but I do think they should be taking it more seriously than ‘don’t eat that until you’re out of the door!’

DP wants to write a letter with our expectations, and that’s been recommended a few times on the thread, so we’ll do that. I’ll also send in bread, cereal and treats as mentioned. Someoneupthread said I was being too polite and I’m definitely guilty of that - I don’t want to be ‘that’ parent and I know what it’s like from the other side of the classroom door to be hassled by parents, so I’ve been very quick to try and justify other niggles in the past. Plus DS is no angel, he’s a headstrong (but nice!) little boy with a small speech delay and we don’t speak Welsh and it’s a first languGe welsh school, so I’ve been very keen not to rock the boat... but it looks like ‘just’ filling in the forms wasn’t enough.