Primary school refusing to provide gluten free meals without formal diagnosis. Help!

[Artichook]

DD2 starts reception in Sept. her school has a no packed lunch policy but won't do a gluten free hot meal without a doctors letter.

We believe DD2 is probably coeliac. Her grandmother, uncle and cousin all have formal diagnosis but we only got her the blood test (aged 2) and it was negative. Even her pead was surprised as her symptoms are so classic but he said the next step was a general anaesthetic and endoscopy after 10 weeks on a gluten diet. We refused this option as we had already moved her to gluten free and it had made huge improvements so we weren't willing to expose her to 10 weeks of misery.

What should I do about the school? Is this a common policy?

[megandraper]

Can your DD have an HLA typing blood test? They can be done on the NHS. I have two DSs - DS1 (5) is formally diagnosed coeliac (positive antibody blood test and biopsy) and DS2 (3), though showing symptoms was negative at antibody blood test and biopsy.

We had an HLA-typing blood test which showed that they both carry the same coeliac gene. Though that doesn't mean DS2 is definitely coeliac, it is another supporting factor. He has 1) coeliac blood-relatives, 2) coeliac symptoms that went away on going gluten-free and 3) the coeliac gene. That is enough for our paediatrician to support DS2's need for a gf diet.

[MummaBubba123]

The staff answering that number are excellent. I've used it and got results before over a different matter. The school were quite cross that I'd called it but I'd friend to speak to them first and got nowhere. I'd def. speak to the Head first and then call the number without forewarning the school.

[greenbananas]

Is this a private school?

The school do need a doctor's letter, because otherwise they would find themselves catering for all sorts of faddy (and possibly imaginary) dietary 'requirements'. However, all you need is an official doctor's letter saying that your DD is on a gluten-free diet for medical reasons. This letter does not have to include any particular diagnosis (it is not the school's job to make medical decisions about which pupils are 'deserving' of a gluten-free diet).

Good advice from Blu about writing a draft of this letter yourself

Once the school have an official letter, they ought to move heaven and earth to cater for your DD, and to make sure she feels included. Either they should provide hot meals which are suitable for her, or they should allow other children to bring packed lunches so that she is not the only one eating food from home.

If you don't get a good response from the school once they have a doctor's letter, I think you should contact Ofsted (the official body for inspecting schools) because they would certainly be interested... Ofsted's telephone number is 0300 123 1231. All schools, whether state-run or private, have a duty to make sure they don't discriminate against any child, and that all pupils are included in the daily life of the school.

[schobe]

GP doesn't have to say coeliac or even suspected coeliac. He/she could just say that they advise gluten free because of severe gluten intolerance. You have plenty of evidence for that I would think. Perhaps the paed would do that if GP reluctant.

[trixymalixy]

I can understand why you wouldn't want your DD to be the only one eating packed lunches, but needing a doctor's note to be allowed to take one?!?! What if you can't afford school lunches? That's bonkers.

I would speak to your GP, hopefully they'll be sympathetic enough to write you a letter.

[SwishSwoshSwoosh]

I would be complaining to the governors and local media if me, is it a school or a dictatorship? She is your child FFS.

That has given me the rage.

[MummaBubba123]

Ridiculous, isn't it! I'm sure that they wouldn't want to be held responsible for your daughter's reaction while waiting for the procedure. I agree that you ought to be able to get a GP letter from a lovely doctor who listens to the difference that your change of diet has made.

[Artichook]

I wish sticking to packed lunches was an option. They aren't allowed without a sodding doctor's note and DD would be only one which worries me a little as kids like to fit in.

[trixymalixy]

I had to supply school with a letter from the GP before Multiple allergic DS could have the Christmas lunch. It cost me £20 plus the cost of his lunch and I supplied pudding for him. Blooming expensive lunch and then he wouldn't eat it!! We just stick to packed lunches.

[Blu]

I needed a GP letter re DS's condition for school's admission - in order to make sure they said the right thing, and to speed things up, and as I said to them, to cut down on thier worklload IF it was helpful, I supplied a draft as an e mail attachment - interestingly when it came back, printed on headed and signed, the post-it left on by the GP said 'charge waived as draft supplied'.

Worth a try!

[Bumply]

Ds2 is diagnosed by biopsy, but primary school sounded so clueless about whether they could provide gf meals that he's just had packed lunches.

[Maz007]

Might be worth trying consultant too if needed - as a HCP even if I'd discharged someone I'd write a quick letter to help out in a situation like this...

[mintyneb]

Seeker, in My case I didn't want to have to get a doctors letter as it would have cost me 15 pound. All I wanted was the menu to see if there was anything on offer that DD would actually want to eat.

Fortunately (?!) she has another health condition for which she has hospital treatment so I was able to get a letter from them for free

[Artichook]

You are al giving me hope that when they said "diagnosis" they meant medical advice. I will make an appointment with the GP and see what they would be prepared to write.

[Maz007]

Artichook would your consultant be able to write a letter to explain the situation and clearly recommend a gluten free diet on it? It seems unhelpful to make their policy hinge on a 'diagnosis' as these things can be blurry. I do understand them having to ask for medical confirmation of an alternative diet to make sure they get it right, especially as the stakes can be so high, but the diagnosis is neither here nor there IMHO. People with the same diagnosis can have very different needs and that's what they need to be aware of, not a 'label'.

[Charmingbaker]

Have you spoken to your GP, they should be able to provide a letter explaining that you exclude gluten from your child's diet on medical grounds (

[notapizzaeater]

Could he not just write she needs a gf diet (ie not actually stating coeliac ??)

[Artichook]

Sorry, I cross posted with lots of people there.

Given DD's very strong family history, together with severe anaemia and classic coeliac symptoms, it seems highly unlikely that she isn't coeliac but the GP isn't the expert so may feel uncomfortable asserting this. We were discharged from the gastro pead when we decided not to have the operation.

[notapizzaeater]

Cross posts - we'd had a verbal diagnosis from the paed but our p wrote the letter. Luckily our gp did it in a few days but I had to send pack up in the meantime. They won't cater in case of accidents. Our head teacher couldn't let them cater. The LA told her they couldn't and she couldn't overrule it. As the others have said no one willing chooses to eat like this !

[seeker]

I would try the GP first.

[notapizzaeater]

Our gp wrote the letter - it took the paediatrician 3 months to get round to writing to us !!

[Artichook]

Pizza - had you had a formal diagnosis before the GP wrote the letter? We are no longer under a pead (because we declined the endoscopy) and I'm worried the GP won't write as we don't have a positive test.

I will try and speak to the Head, that's a good idea.

[Blu]

On the basis of the classic symptoms and the clear improvement on a gluten-free diet, will your paediatrician write a letter saying that she must have a gluten-free diet, without actually saying that she is diagnosed as coeliac?

[seeker]

Why can't you just get a doctor's letter?

[looseleaf]

We did have a letter for ours. But only because DD saw a private doctor for something else (Lyme disease) and they were the first to immediately diagnose her wheat intolerance. You might find somewhere that will test for it without the endescopy etc and write a letter- in DD's case they gave her droplets of various potential allergens then measured her pulse for a while after each one . This showed she reacted strongly to wheat and moderately to dairy.