19 replies to this topic

[Medusa]

My eldest has just been really sick with typical gluten exposure symptoms after a supposedly gluten free meal at her school. The kitchen staff have been really helpful in trying to track down the source of the problem, but we've drawn a blank. The meal consisted of gluten-free meatballs, boiled potatoes, grated raw carrot and lettuce (school meals haven't improved since I was at school!) The only thing we can think of is that they use the same pans, kitchen tools etc for all the food preparation, and that even if washed there could be a risk of cross contamination. I think everyone else had pancakes yesterday.

The other coeliac kids at school were all fine, we checked, but my daughter is extremely sensitive to gluten, even by coeliac standards. Yes, it could just have been a 24 hour stomach bug, but it started straight after the lunch and had typical gluten exposure symptoms for her. It made me think of the time we used our ordinary bread machine ( teflon lined pan and paddles washed thoroughly twice!) to make gluten-free bread and she got bad wind and a tummy ache.

Has anyone else advice or experience of using separate cooking utensils for gluten-free food preparation?

[GlutenFreeManna]

There's no way I would trust a school cafe to make safe stuff. It could be so many things--the meatballs, were they made there or a package of a gluten free brand? I'm sure gluten-free meatballs do exist somewhere but it seems unlikey the school would buy them unless they have a lot of gluten free students to serve. If they were made there (and didn;'t have bread crumbs in them) had the person that made them changed gloves prior to making them? Did they bake the meatballs on a cookie sheet used for everything else? Were they baked in the same oven at the same time as bread? The potatoes were they cooked in thesame pots used for pasta? Stainless steel can be scrubbed clean but I know from working in many kitchens if theres no obvious residue some cooks just rinse the pans and put away. Then when they drained the boiled potatoes were they drained ina colander used for pasta? All those little holes harber gluten that may not come out with quick wash. Then, were the veggies prepared on a cutting board used for bread in the past? Then theres the fact that meal of the day for the other students was pancakes--unless the pancakes came frozen then the flour dust from making them went up in the air and contaminated everything--all the gluten-free food being prepared for your child and all the surfaces used to prepare it could have a little flour dust in them. Even if the gluten-free food was made first and put in a safe place away from the dust while the pancakes were made--flour can stay in the air for up to four hours. It's even possible your child got sick from the flour dust in the air as she walked through the line. I cannot enter a regular bakery for this reason.

[weluvgators]

My kids cannot even eat their own food in the cafeteria without symptoms of gluten exposure. And there is no way that my kids would consider eating the food in a school cafeteria situation as you described. When we were hospitalized, the shared kitchen ensured that there was dedicated space and procedures used for our food preparation. They also implemented extensive washing procedures and food sourcing protocols to ensure our safety. I don't know what they did for the pans and utensils, but based on their food washing procedures, I would guess that our pots, pans and utensils were thoroughly cleaned. At school, we keep a dedicated gluten free cutting board and knife in our girls' boxes for use in very controlled settings for classroom food preparation. We send all of our kids' food to school for them - no way could our cafeteria feed our girls safely. And we are frequently told that we are more sensitive than "standard" celiacs, but sometimes I wonder if we are simply more aware.

A couple of ideas to help with shared cooking pans are aluminum foil and parchment paper. You may also want to consider having dedicated gluten free equipment - sounds like there are other celiacs in the school that would benefit, even if they do not get symptoms from their current gluten exposures.

Good luck figuring this out!

[L Ceezy]

I strongly agree that cross contamination is for sure at a school cafeteria. CC is very serious and invisible. I wouldn't have your daughter eat anything from school in the future.

[Mizzo]

We have had this exact experience. I also went over procedures with the lunch staff . There are only 2 gluten-free items offered in our school, Ians nuggets (BIG YUCK) and gluten-free pizza crust they add sauce and cheese to, then bake on a designated pan.

We tried the pizza 3 times, each time she had tummy ache and small bout of d. 1st we didn't know where it came from, 2nd time we still was not sure as there was a scout event afterschool and it could of been the hot chocolate.
3rd time was ding, ding, done!

The principal (very nice accomodating lady) allows my dd to go to the teachers lunch room and microwaves hot meals for her. The lid only gets loosened not removed and I make notes as to how many seconds.

We have not had an incident in school since.

We know she will never be able to have a cafeteria lunch and we deal with it.

There are 3 other kids with Celiac, 2 of them get the pizza and nuggets and to my knowledge they do not get sick. BUT, I do not know the parents very well either to ask about any recent events.

[Medusa]

Many thanks for all your comments! It looks like I'm going to have to send my daughter with a lunchbox again. I finally got hold of the person actually responsible for preparing the special meals and she really hadn't got a clue. First she told me no meatballs ever have gluten in (but we know they do, don't we? Even if they've just rolled them in flour...) She claimed there was no possibility at all of having separate utensils for gluten free meal preparation. The pancakes and the meatballs would all have been cooked on the same hotplates. Then she told me that her own daughter had had awful stomach ache but tested negative for coeliac, so they were giving her Gaviscon for her "too strong stomach acid", why didn't I just try that?! I became concerned that her daughter may well have been misdiagnosed - we've all had negative test results on occasions. Then she got stroppy and said my daughter must have eaten too much of the carrot... At which point I felt she was either very stupid or making fun of me. It's frightening, isn't it? This is the head of the school kitchens and allergy expert we are talking about here! I'm going to phone her up again tomorrow and ask just exactly what went into that meal in terms of actual ingredients and cooking procedures, but I don't give much for my chances. I was frankly shocked that they make no real effort to keep the gluten free food separate at all, even though they themselves say that they have a large number of pupils requiring gluten free food. Such a contrast to the situation for people with nut allergies! Can you imagine anyone telling them to like it or lump it?

There are fairly major social hurdles to bringing your own lunch here in Sweden - everyone eats the school lunch. Not doing so leaves you open to being frozen out, almost on principle. I think we are still going to have to do it, as the consequences for my daughter of being glutened are so horrible.

Thanks again!

[shadowicewolf]

Many thanks for all your comments! It looks like I'm going to have to send my daughter with a lunchbox again. I finally got hold of the person actually responsible for preparing the special meals and she really hadn't got a clue. First she told me no meatballs ever have gluten in (but we know they do, don't we? Even if they've just rolled them in flour...) She claimed there was no possibility at all of having separate utensils for gluten free meal preparation. The pancakes and the meatballs would all have been cooked on the same hotplates. Then she told me that her own daughter had had awful stomach ache but tested negative for coeliac, so they were giving her Gaviscon for her "too strong stomach acid", why didn't I just try that?! I became concerned that her daughter may well have been misdiagnosed - we've all had negative test results on occasions. Then she got stroppy and said my daughter must have eaten too much of the carrot... At which point I felt she was either very stupid or making fun of me. It's frightening, isn't it? This is the head of the school kitchens and allergy expert we are talking about here! I'm going to phone her up again tomorrow and ask just exactly what went into that meal in terms of actual ingredients and cooking procedures, but I don't give much for my chances. I was frankly shocked that they make no real effort to keep the gluten free food separate at all, even though they themselves say that they have a large number of pupils requiring gluten free food. Such a contrast to the situation for people with nut allergies! Can you imagine anyone telling them to like it or lump it?

There are fairly major social hurdles to bringing your own lunch here in Sweden - everyone eats the school lunch. Not doing so leaves you open to being frozen out, almost on principle. I think we are still going to have to do it, as the consequences for my daughter of being glutened are so horrible.

Thanks again!

Ignorance is bliss when it comes to some people

Can you buy chance get a menu of what they are having for the week and pack a similar packed lunch for your daughter? That way she would be able to eat something similar and maybe not get picked on for doing so.

[Medusa]

Ignorance is bliss when it comes to some people

Can you buy chance get a menu of what they are having for the week and pack a similar packed lunch for your daughter? That way she would be able to eat something similar and maybe not get picked on for doing so.

That is a great idea! Yes I can.

Thanks so much!

[Medusa]

Oh, it gets worse! I got called in on Friday for the inevitable dressing down by the class teacher - it's not fair on the other kids that I send a lunchbox with my daughter, apparently. The teacher also took the opportunity to tick me and my daughter off about the fact she is getting so behind with her schoolwork. Apparently she just drifts off in the afternoons and can't get anything done... Are alarm bells ringing for anyone else? I asked the teacher how much work she personally gets done when she has a bad stomach ache. How stupid can they be?! They are also aware that my daughter passes out if she ingests enough gluten, so lack of concentration is likely to be a problem. But the school kitchens say their food is gluten free, so obviously my daughter is backwards or lazy... Poor kid. It makes me want to hit someone.

[kareng]

This article about the brain issues of gluten mentions some studies. Maybe you could find them & print them out fornthe school.
http://www.celiac.co...sease-empowher/

This is from a respected Celiac center & explains that even a tiny amount can hurt.

http://www.celiacdis...luten-free-diet

[Medusa]

Many thanks! Those are great links.

[gf_soph]

Their attitude makes me so mad for your daughter. There's a very high chance they are poisoning her, and when you try to provide her with safe nutrition they give you a dressing down? The head of the kitchen is willfully ignorant and unhelpful, and the teacher is surprised that your child isn't working at full capacity!

If they continue with that attitude I would pose a question to them. Is the head of the school willing to make a legally binding oath that everything they feed to your child is gluten free? Knowing that if they are exposing her to gluten, they could be charged with assault? Knowing that you are going to buy a gluten test kit and actually test samples of the food they feed her?

My guess is that they would run a mile from making a promise of that nature. Until they can guarantee her safety, they can shut up about it not being fair that your child gets her own lunchbox. Especially when I'm sure she'd rather have the flexibility to eat what everyone else does without getting sick.

Rant over! Sorry about the attitude, I know you have to go about things the right way, but it's hard enough to deal with this sometimes without ignorant authority figures making it worse! Good on you for sticking up for her and trying to get a workable solution

[Juliebove]

Sorry to hear that! My daughter has food allergies and not celiac. However I never pushed the issue to provide food for her except for when they went away to camp in the 5th grade. I was told they could provide her with food. Alas it was mainly apples and she came home with a sick tummy. There was gluten-free pasta one night, chicken another. And a choice of tuna or sunseed butter on Ener-G bread for lunch. The other kids got snacks but there was nothing for her. The only reason I allowed them to cook for her was because they didn't allow any outside food.

At school she brings her lunch. I just do not trust them to have something safe for her to eat. She is in Jr. High now. She can buy some single items like fruit or chips. And on Fridays there is popcorn. They have Jamba Juice on Tues. but we don't know the particulars of those so don't know if they are safe.

Here it is very common for the kids to bring their lunches. Some can't really afford to buy the lunch but are not quite poor enough to qualify for free ones. And some want more control over what the kids are eating. Apparently French fries are served daily at my daughter's school. This is how it was when I was in Jr. High as well. There was the standard meal that the elementary school kids got but if we didn't want that we could get the sack lunch which was a burger and fries.

At the school she went to in NY, we didn't know about the food allergies yet. But they had a separate room for all of the kids with food allergies to eat in. At the time I thought that seemed kind of cruel. But she always told me she wished she could eat in there. It was a small room with windows all around so people could see inside. But it was quiet! The cafeteria where she had to eat was horridly noisy. Kids would scream and bang on tables, run around and throw things and there seemed to be no one in control.

I don't know if isolating those kids is the way to go whether it be in another room or at another table (assuming there is a cafeteria). On the surface it would seem to make things safer, but... Those kids all have different food issues. So putting a kid with gluten issues in there isn't going to do them much good because the kid with the peanut allergy is likely to bring in a cheese sandwich on wheat bread.

I am always glad when summer comes because we don't have to worry about the food. She can just eat at home.

[shadowicewolf]

Oh, it gets worse! I got called in on Friday for the inevitable dressing down by the class teacher - it's not fair on the other kids that I send a lunchbox with my daughter, apparently. The teacher also took the opportunity to tick me and my daughter off about the fact she is getting so behind with her schoolwork. Apparently she just drifts off in the afternoons and can't get anything done... Are alarm bells ringing for anyone else? I asked the teacher how much work she personally gets done when she has a bad stomach ache. How stupid can they be?! They are also aware that my daughter passes out if she ingests enough gluten, so lack of concentration is likely to be a problem. But the school kitchens say their food is gluten free, so obviously my daughter is backwards or lazy... Poor kid. It makes me want to hit someone.

Hearing that just ticks me off.

Yeah, sounds like she has brain fog. It sucks badly, makes ya feel like your in a daze, alas it is caused by gluten.

At this point in time, i'd consider homeschooling her, that is if that school keeps it up.

[Medusa]

I would love to homeschool for a number of reasons besides the food issues, but unfortunately the authorities in Sweden have made it virtually illegal. (One kid ended up in care because his folks insisted on homeschooling him!) The good news is that we are moving to New Zealand soon where they have a much more humane attitude, everyone takes lunchboxes and homeschooling is accepted.

Unfortunately the Swedish notion of fairness expresses itself in a belief that everyone ought to be exactly the same - the infamous "Jante law", which doesn't leave much room for diverging from the norm, even if you aren't doing it on purpose! We have just over 4 weeks left at this school, so I'm trying to make the best of a bad situation - and help the other kids who think they are getting gluten free food!

I think I am almost most disappointed in the class teacher who has been nagging my daughter about her poor performance, but hasn't said a word to me. It seems she put it down to my daughter being bilingual! I think the head of the kitchens is in a personal state of denial about her own family's gluten problems, plus she regards herself as an "expert", and those people are often the hardest to deal with. The younger kitchen staff have been much more helpful and have even spoken out on the need for separate cooking facilities.

Thankyou all so much for your support! I can't tell you how much it means to me.