School not taking coeliac disease seriously - I am so upset I am hyperventilating

[yellowhouse]

My DS1 was diagnosed recently with coeliac (and so was my other son but he's not at school yet). Unfortunately he is a very severe type of coeliac which means despite showing very few symptoms he was found with total villi atrophy and also his blood test showed he was in a very poor state of health.

I have discussed this with the head of KS1 and with my son's teacher, the kitchen staff etc. The kitchen staff have been great and so I was quite relaxed about everything. They have been doing food at school and cooking and I have sent in free from flour, etc...

My son looked very tired and extremely grumpy and I suspected he'd eaten wheat but we are very strict at home and hadn't been out but I put it down to paranoia. Today we were baking a cake and he told me this. "Mum, I am really scared when we cook at school, because the teacher always forget to label my special stuff and just makes me eat any of it. I tried to say no and she told me not to be silly and just eat it that I'll be fine".

Now I do believe it as he was really uspet and I put two and two together. I also haven't seen any photos of him anywhere, whilst they do have photos on walls of children who have allergies, I am getting the impression that the school are not taking this seriously. I am really upset but I can't go in now as it is half term, so I will just have to wait.

I am sure I will calm down but just wanted to know if anyone else has been in this ludicrous situation before???

Hi yellowhouse

we have been in this situation before with DD's nursery. I would take this up with the head and also involve you ds's consultant. I'm sure your son isn't lying and the teacher is an idiot for telling him not to be silly. Maybe you could go in and help when they do baking and explain how this should be handled.
If you get no joy with the head, take it up with the school governors and maybe contact the local authority and involve them.

I'm sure there will be a celiac helpline you could call for advice.

There's no excuse for their attitude and I would even be telling my DD not to eat anything afted a baking session until this is sorted.

Good luck and i hope they start taking this seriously.

Take care.

Sorry. I meant to say DD has multiple food allergies and isn't celiac, but we have experienced the same level of apathy and negligence.

"I tried to say no and she told me not to be silly and just eat it that I'll be fine".

I sincerely hope this is a misunderstanding on a young boy's behalf, because if true that is shockingly irresponsible.

There's nothing you can do for now, so just calm down and enjoy the break.

Then revisit your righteous anger when you go in to the school to talk about this.

My god, I would be furious in your place.

First of all, deep breath & calm down.......no point spoiling the half term for you all, you can't do anything this week.

Secondly- Print off some info about coeliacs, including how you DC is particularly affected. All the details about what happens if he eats gluten foods, and the impact on his health.

Third- ask the KS1 head for a meeting, ask her to ensure all Domestic Science staff are aware of the disease, that is is a medical condition not just a faddy diet you thought up. State calmely that if this is a problem for her staff then you will have to withdraw DS from classes.

Fourt- try & enjoy the break with your DS, no point upsetting him by letting him see you are (quite undersandably) cross.

This needs reporting as the teacher is clearly ignorant of the implications for your DS which begs the question would she be so blase about peanut allergies for example?

Good luck

You need to escalate this immediately. Coeliac disease is not some namby pamby food intolerance; gluten could seriously harm your son's health permanently. I reckon the problem is that in every school there will be loads of kids whose parents have written in about some "allergy" (using word loosely, and apologies to those with DC with real medical allergies that do result in anaphylactic shock) or other with little basis in reality and a lot in middle class hysteria so the staff take little notice of any of them. Your DS1's staff all need a proper training session to assure them that coeliac disease is a documented, medically universally accepted, evidence based condition that needs to be taken with all seriousness.

Can you give your DS1 food to take to school and simply not let him eat anything the teachers give him? I know packed lunches are tricky with no (edible) bread, but there are a few things that should be possible with care.

Re: "namby-pamby food intolerances" I think that sometimes there is a danger that serious cases such as your son's can be lost amongst all those who claim "allergies" at the slightest thing. If we ever do any sort of cooking/food-tasting/whatever at school, there is an inevitable chorus from a fair few of the children saying "I can't eat that, I'm allergic" when actually, what they mean is "I don't like that, I don't want it."

Doesn't excuse her down-playing your son's objections - if that's what happened. After half-term you need to arrange a meeting and insist that all the necessary protocols are set in place. Then ask for written confirmation that it's happened, and check up at regular intervals.

Hope your ds is OK.

Un bloody believable. How dare they make uneducated guesses and aaumptions about our children's health!

have a friedn in a similarish situation with her asthmatic children. They have had clear guidence from medical staff but refuse to give children their inhalers stating they may over dose (on 2 puffs....) They have openly said they would rath the kids had breathing problems and were take to A and E..... yet complain if they are off school...

This needs to be taken up assertively, yet politely, with the highest power in that school. Agree with above to enjoy your holidays then get meeting with them as soon as possible. Is it possible you could have nurse/ GP backup?

it will get sorted out I am sure,but my God it makes me cross for you.

Oh dear yellow house - I'm sorry, that's terrible!

We've had a couple of incidents with DDs nursery (like when one of the numpties assumed coeliac and vegetarian were the same and gave her a quorn sausage!!!!!)... But it seems to be genuine ignorance (stupidity) rather than intentionally ignoring the situation, and they were all mortified afterwards (when poor DD was throwing up everywhere)
If I were u I would really read them the riot act, starting with the head teacher! Take in lots of info, not only about the affect gluten has on his intestines but also up the scaremongering about the knock on affects of continuing to eat gluten in his situation. Then I'd threaten to report them to the local authority if it happens again..!!
As I said (couple of times) to DDs nursery manager - if this was a nut allergy and they screwed up that badly, she would have died.

I agree with others, the word "allergy" is totally over-used when in fact people are " intolerant" or "sensitive to" things, drives me mad!

If anyone says "I'm allergic" I look all concerned & ask if they have an epi-pen?

Truly shocking yellowhouse. I would contact your child's dietician and the school nurse and get both of them involved. They need to educate the staff about how important this is. It may not be a life-threatening allergy but it is a serious life-long auto-immune disease that has very serious long term effects if not treated properly. The problem is, unlike serious allergies you can't see the effects so it's easy for people to think that it isn't serious. Shame they can't see the effect on your DS's intestines! Would the teacher tell a diabetic to just something and not be so silly?

re namby pamby food intolerance - my children are so severely intolerant to gluten (while not having coeliac) that they get gluten free food on prescription and special gluten free meals at school.

Yellowhouse - you need to go into school and play merry hell. Tell them exactly what can happen to someone with coeliac who is eating gluten. give them the information. Tell them that you will hold them legally responsible for their failure to manage his medical condition appropriately.

Basically, you need to put the fear of god into them.

Teacher is probably one of those who sees 'can't have gluten' as some faddy, not real thing. They need to be put right.

that is really bad and shows an incredible level of ignorance by said teacher, and also lack of appropriate care for your DS's health.

I suggest you print out some of the serious health effects that can occur as a result of coeliac disease (i.e. not some "namby pamby" intolerance, which in any case might be more serious than an ignoramus like her would understand) and staple them to her forehead take them in to the head teacher, with a special note that they should be given to this teacher.

Your poor DS. Life with coeliac disease isn't easy as it is, without this sort of idiocy from a supposed professional.

This is totally unacceptable. What happened to duty of care? I would be incensed. Poor DS. Hecate. I read the namby pamby comment as those who decide they must have an intolerance because they don't have a flat tummy after binging on white bread or like me who gets a touch of eczema if I stuff my face with chocolate! I am sure it was not aimed at cases like yours. Poor kids and how stressful for any parents who have to worry about this. As if being a parent/kid wasn't tough enough!?

I've usually had it to the other extreme where nursery refused to cook for ds2 because they were too scared of cross contamination ( I ended up providing them with frozen meals I'd cooked which they could heat up ) and primary school where they just said they couldnt cater for him so I give him pack lunches.
You definitely need to find out if it's true that they are blasé about ds1 requirements as 'accidental' gluten exposure is a serious business

Yellowhouse, so sorry you experienced this. Be glad at least it is half term and you can supervise what he's eating. Then, as others have said, you need to make an appointment I would suggest with the teacher responsible for the baking, as well as the head, armed with literature and explain very clearly the problem.

I would also make sure your son does not eat anything he's not 100% sure of. Note - I do not expect a young child to take responsibility as such, it's just in this case you say he thought he shouldn't eat it, tried to refuse then did anyway, due to teacher. SO I would reassure him it's ok for him to stick to his guns, though I know asking a child to 'defy authority' can be v. difficult.

You have my sympathies.

My dd is lactose intolerant, fructose intolerand and being tested for coeliac, so this is what I'm also dealing with.

TBH, a couple of posts on this thread have made me a bit angry. Dd's coeliac is not confirmed, but her lactose and fructose intolerance are. while they may not cause the lasting damage coeliac does, they are by no means "namby pamby" and she has suffered daily diahhraea, pain and cramps and lethargy and ill health for years (and she's only 3) because it was not known what was wrong. And while lots of food is clearly labelled gluten free, and lots of gluten free products are available, the same is not so for fructose, which also goes under many aliases, so currently shopping for her is a much more complicated headache, as it is also not obvious, in the way that a loaf of bread is to a coeliac.

ALso re allergies and the epi-pen comment - does the allergy really have to be seriously life-threatening to make people take it seriously? :(

ANyway, I now have to give her all her food as it's too difficult to rely on the kindergarten to get it right, the lactose and fructose are hidden in so many things.

Is this an option for you OP? Though I can see lessons involving cooking are much more difficult to manage.

Enjoy your half term.

This is outrageous - how DARE a teacher mistreat a child like that?! Nasty bully isn't fit to have charge of children if she's so careless about serious health problems. Coeliac isn't anything to do with being fussy or namby pamby and it is deeply insulting for people to suggest it is. They wouldn't smear someone with diabetes, would they? Astonishing. Poor ds.

Ernest, that must be really hard, having a DD who is fructose intolerant as well (presumably she reacts to sucrose as well then?)

I agree that people in general don't understand enough about allergies or intolerances (lactose is a fairly severe intolerance as well but certainly not an allergy) to think that you have to carry an epi-pen for it to qualify as "real" or "serious".

Thanks everyone,
I have calm down a lot today and put it at the back of my mind for when he starts school. Interestingly all his grumpiness is disappeared and has since told me that he has had problems at school as every time they have done baking he's had terrible stomach cramps all afternoon. I think a meeting with the head is more appropriate!!! Thanks also for making me feel that I am right to be soooo angry!!! I will let you know how my meetings go next week!!!

Ernest, that does sound tough. it's hard enough reading ingredients for the more obvious allergens but having to decipher code for the not so obvious ones must be maddening.

I also feel fed up and very angry with some of the comments on this thread. the epipen comment is worrying. to think that people with allergies but no epipen must be liars/fusspots etc. The people who think like that shouldn't really be in charge of children. To not believe anyone because someone once used a word inappropriately is wrong. Also intolerances can be awful. if a child who is dairy intolerant had some dairy, they would possibly either vomit it up or get the runs. the school would then expect them to stay at home for 48 hours after the last episode. It could take a while for the body to recover So it would probably more than 2 days of school. What a lot of stress for the child and parents all because some idiot decided to not believe the child or the parent because someone had once used the word 'allergy' or because they didn't have an allergy. Great!

That is terrible. I am coeliac, diagnosed as an adult, and have bone problems and other long term issues due to not being diagnosed early, I had the most severe type on biopsy. It is very serious to keep being exposed to gluten. I think alot of people don't take it seriously is that unlike peaunut or other allergy there is often no instant danger of anaphalaxis. But that doesn't make it non serious. Not sticking to the diet can cause very severe problems. I would ring Coeliac UK and the local health authority and get your paeditrician or gastro doctor to write to school. I would also go in and see headteacher. There is a boy with coeliac at my DC's school and my daughter was at a party once with him and the host mum gave the boy things with gluten in and say 'ah you will be ok, 'even though she knew what he wasn't allowed to eat! Hope you get it sorted.

I'm also frustrated by the epipen comment.

No I don't carry an epipen. It contains sulphites as the preservative. My worst allergen is sulphites I have to have pure adrenalin,vwhich doesnt keep and can only be administered in hospital.

Yellow house, my mum is coeliac and has found coeliac uk's leaflets and support very helpful. They will speak to the head for you.

I would take him out of baking classes entirely, the wheat flour dust in the room and the contamination levels are probably too high.

That's a great idea about getting Coeliacs UK to talk to the head. Yellow, I would also inform the governors. I'm a governor and would want to know if anyone was playing silly beggars in such a dangerous way.

Yes, the epipen comment is deeply ignorant. DS1 is allergic to (deep breath) peanut, egg, sesame, chick peas, lentils, cats and tree pollen, all confirmed by blood test at the paed allergy clinic at Addenbrooke's, one of the leading clinics in the country. He does not have an epipen because he has never had an anaphylactic reaction. If he accidentally consumes some of his allergens then he will come up in hives, have severe stomach ache and vomit everywhere, perhaps those who consider this a namby-pamby allergy would like to have him round for tea and clear the sick off their own carpet?

To the OP: we have a letter from DS1's paed stating clearly what his allergies are and that he must avoid all food containing them, and what to do (according to severity of reaction) if he accidentally ate some, we gave a copy to school when DS1 started, to make sure they take it seriously. They have been very good about it so far. How old is your DS, I think until you're confident they're taking it seriously you'll have to insist he doesn't have anything cooked at school unless you've checked the ingredients.

Who has stated that this is a "namby-pamby allergy?" The point that several have made that there are some who are muddying the waters at schools by saying their child has an allergy when in fact they might not have. This might have led to the (unacceptable) attitude with this teacher, whereby she thought "oh no, not another one."

No-one has suggested for a moment that these serious examples on here are "namby-pamby."