Caeliac AIBU

[Pappybear]

We have family visiting next week. Their 12 year old son has caeliac disease. I am very aware how serious this can be for him, and how tough it is to make some people aware that this isn’t just an “intolerance”.

However, in-laws are incredibly controlling about it (which I understand might be a coping mechanism/ entirely necessary) and we have been given a long list of requirements for their visit. Which include deep cleaning the entire house, for our children to not consume any gluten around their child, and for us to not consume non-gluten free beer around them. So basically the entire house has to go completely gluten free whilst they are here. Fine, but they also won’t cook gluten free from out pans etc so we need to get take outs every night that they are here, from entirely gluten-free restaurants. Gluten free options are not acceptable, which I get becuase maybe they don’t know how safe those restaurants are with cross contamination.

It makes the whole visit so stressful every time they come. And my question is AIBU in thinking they could life much easier for themselves, us and their child if they were a bit more flexible in terms of their expectations?

Or is this unreasonable of me and a weeks inconvenience for us is nothing compared to the inconvenience they have to deal with everyday. Just after some perspective, because they’re so prescriptive that I don’t know if this is what everyone with caeliac has to deal with.

But your child has an allergy - and I bet you are great at policing it. Ceoliac is an intolerance, our bodies have had an autoimmune reaction and killed off the ability to digest gluten. And that can be managed too - I don't even know of a fully gluten-free restaurant near us.

I agree with this. My main symptom is Dermatitis Herpetiformis so I’m very sensitive to cross contamination but you cannot live life in a hermetically sealed environment; it’s just not possible if you actually wish to have a life and see your friends and loved ones.

I do my best and I wonder every time I eat something how long it’ll be before the insane infuriating itch starts but I keep those thoughts to myself or this is my condition to live with and I’m fortunate it’s not as serious or life changing as what some people live with. My condition and life have improved exponentially since I worked out what the trigger was and have adjusted my diet accordingly.

I do not make my condition other people’s problem. It’s mine to manage. I have worked in hospitality and am aware that mistakes can happen, that’s just being realistic, I’m grateful to any restaurant that can provide me with good gluten free food and understand but it’s really unrealistic to expect complete lack of cross contamination.

The result is the same. Eating gluten/daory/whatever results in them being sick in one way or another. And my point was that I found people to be very dismissive of the seriousness of it so you do get to a point where you become an anxious mess. My solution has been to just not let anyone give him food other than what I cooked myself which means we no longer visit relatives. The OP's relatives have gone another way, although I don't agree with it, I'm explaining where it comes from

I think you are being very considerate and thoughtful host.

And get a group of coeliacs together and discuss what they feel comfortable eating and you'll get a spectrum of answers. All considered safe for them personally.

Is your family member being unreasonable and extreme? Maybe but obviously this is what works for their family.

I recently read a study on the mental load of coeliac disease and they equalled it to the extreme stress of having cancer, insulin dependent diabetes, and kidney dialysis. (How they do studies like this comparing mental load I don't really understand) But I would agree that the stress of the constant vigilance is a lot.

I get sick from kisses from family after having a beer, gluten free products that aren't certified gluten free, communal food when others haven't just washed their hands from gluten on them, kitchen sponges, sugar being kept next to the flour, oven mits that touch just a bit of the gluten on the sheet pan never to be washed again, crumbs from the person next to me flying into my water glass.

I've gotten glutened so many times staying at family members (who are really doing their best to be considered) homes. I've ended up with extreme neurological symptoms when glutened and in hospital for weeks and months after an exposure.

I am the extreme coeliac sufferer who drives everyone crazy. I WISH I was like some others with this disease who "just" need to put toast in a bag and doesn't bother them to have gluten in their kitchen.

I have had to set some similar firm boundaries for my health in place.

I see how this disease divides families and isolates you socially. It must be harder with a child who don't want to be "othered." Especially a teenager.

So yes it's a lot for you and you empathise how it's a lot for them. But thank you for prioritizing your nephews safety and his parents mental well-being. I'm sure the fact that you are not arguing with them about these boundaries they put in place (even if they are extreme) for their son is very helpful. I hope they (and you) are able to relax a bit and you can all enjoy family time together.

I’m parent to a coeliac. I’d not use your toaster or a wooden chopping board. But properly cleaned pans etc are fine.
I’d call their bluff.
buy tinfoil trays, ready meals (lots of curry’s are GF) as is rice and poppadoms.

how long are they there? They sound like dicks tbh.

They are being ridiculous. There is no need for most of what they are saying.

as an aside, I’m amazed there’s a selection of 100% Gluten free coeliac safe eateries near you. They are like gold dust .

I have NCGS and I wouldn’t eat food cooked at other people’s houses because you can’t control cross contamination in someone else’s kitchen like you can in your own. I can’t have any gluten at all.
Everyone else in my house eats gluten but we have 2 toasters, 2 butter, 2 jams etc. everything is labelled with gluten free stickers and marked if it has been contaminated. Gluten is kept to one counter. But it’s mostly because everyone has been trained not to poison me to the point where it’s auto pilot.
It’s so easy to contaminate food - and I have done all these things to myself - eg. accidentally stirring pasta sauce with the gluten pasta spoon, contaminating a block of cheese by touching bread not washing hands then touching the cheese and putting it back in the fridge. Was the sugar out on the counter when you were baking with flour? Are there crumbs on the tea towel? etc. You need OCD levels of food hygiene in a mixed kitchen. Eating shared food at a table with people eating gluten is stressful if they aren’t totally familiar with what to do eg. don’t touch the serving spoons if you’re eating bread with your hands, you need to wash them. When this is your normal it’s very jarring to eat in an environment where there are no precautions or procedures and people just don’t realise how easy it is to poison us even if they are being careful.
So I understand why they are so stressed, it’s not just the food itself it’s not being able to control the environment and behaviour and you can’t do this in other peoples houses.
The takeaway is ridiculous though. To reassure them I would offer to get some ready meals that come sealed and get a new tray to cook them on, cover with foil. Look for local GF bakers and bakeries to get snacks and keep them bagged. If you can still get away with a bbq, get a separate disposable one for him.
Or just get them to get a delivery of what they need and let them cook it themselves so they can control it. I would also take you out to the GF restaurant and pay to say thank you. Wouldn’t expect anyone else to stop eating gluten though.
I really hate having to live like this.

The issues are things like…

• if other children have snacks with gluten and they put the snack (or crumbs) next to gf food it’s then not safe
• people using a knife to butter bread/toast and to dip into jam etc and so it’s all cross contaminated with crumbs (only needs one crumb)
• using a chopping board and knife to cut something naturally gf (fruit/salad) when they have been used to cut something with gluten or something with gluten has been put on it (even briefly)
•cooking something gf on the same baking tray as gluten food (even if not touching).

I have coeliac. We do not have a gluten free house but preventing cross contamination is ingrained and it’s a TOTAL NIGHTMARE at other people’s houses when they are trying their best but it’s not second nature. I feel so embarrassed and apologetic but I’m just trying not to get sick and to avoid the long term harm gluten causes.

This is totally ridiculous. I have a child with coeliac. They have a separate toaster , I use corn flour for any sauces/gravy and just cook separate gf pasta. Anyone else can eat and drink what they like. They have to eat it to get sick and whilst even a crumb can make them very ill, there’s no need to clean the whole house , just make sure any food preparation areas are clean and maybe cook something with rice like a curry or something with potatoes and use corn flour for any gravy… it really is not a big deal.

My daughter is celiac and we don't have a gluten free house. A deep clean of the kitchen/dining room makes sense (unless the kid is super young?) and if it's for a week it makes sense to have a dedicated space for their food, but the rest is nonsense. You can't use wood, but everything else should be fine.

Just do what you feel inclined to do with respect to cleaning and accommodating their son, and tell them what that has been. If it's not up to scratch they need to clean more themselves. It's not for you to do that. This might well mean that they don't come back to stay with you, in which case maybe you meet in a hotel.

For reference a close family member (an adult) has coeliac but he is extremely relaxed about gluten in our kitchen, because he has learned how to thoroughly clean surfaces, utensils and so on himself. He doesn't make that our job. He has never suffered cross contamination in our home and stays here regularly.

You put up with this crap TWICE a YEAR? Good lord.

This. It's their issue, not OPs and so long as she is not cooking for them, they can just sanitise what's needed or bring their own. There's nothing else that actually needs to be done beyond hygiene on cooking utensils, pans and surfaces.

@Pappybear what is going on here that you are tolerating this massive imposition on your own family twice a year? Everyone is stressed and hassled for no reason, I don't understand why you're putting up with this.

They shouldn't visit people's homes with the expectation that people will prepare their home like they're preparing for surgery. So they never go anywhere to anyone's house except yours? Or they made these unreasonable demands of everyone all the time?

Their behaviour towards their son is just as damaging as the gluten, in the long run. His anxiety must be off the bloody charts.

Do you have kids who also have to dance around this nonsense?

Your own family comes first. Stop putting them through this.

Here's what should be happening - you do NOT deep clean, obviously. Just maintain a normal, clean home, maybe give the sofa and chairs a wipe down and vacuum although he can't get sick from contact anyway, so it's not really necessary unless he rubs surfaces and puts his hands in his mouth all the time.

So, no deep cleaning. They bring their own pots, pans and utensils, and use them. Kitchen gets a good wipe down and the surfaces are regularly wiped down.

That's it. That's the entire schedule that needs to be followed

Oh, and forgot to add, put any foods he might try to eat away in containers clearly marked coeliac, as he won't be used to normal foods being around.

Hopefully you have two fridges.

And again - who's paying for their unreasonable demands? Didn't see you saying they pay their own way?

Could you share which city you live in with at least two wholly gluten free restaurants please? Genuine question from wife of a coeliac looking for somewhere for a city break!

I think you are being really kind accommodating them so well. They trust you a lot clearly. I hope it’s a happy visit all round x

My kid is coeliac. It’s hellishly difficult - with no days off, ever.
Please bend over backwards and accommodate their wishes. It’s only for a short period of time and it won’t kill you. Be grateful that none of yours have this.

Well, it won't be, obviously, since "It makes the whole visit so stressful every time they come."

I think they’ve tried to put the fear of god into you to, so that you don’t underestimate how serious an issue it is for him. I’m sure it is serious - but it’s ridiculous that they’re patronising you in this way. GF beer indeed 🙄.

And what about breakfasts and lunches? Is he not GF for those too?

I have a DS with many allergies, some of which would result in anaphylaxis + EpiPen + hospital. It’s my job to teach him how to cope in the world as it is, not build a world that rearranges itself around him. I’d be very 😒 re your ILs - but I’d do it. Except cleaning the house top to bottom. We only allow food in the kitchen/diner anyway and I’d do that thoroughly. The rest they could take as they find it.

I wouldnt do this Im afraid and would ask them to stay in a hotel / airbnb

Hosting is hard enough, you take me as you find me

Food I will do easily things like vegan, veggie, whatever but anything that has a serious allergy that I cant control in my kitchen Im not going to do because Im not a comercial kitchen with space and different utensils etc.

I think some of this is a bit OTT.
Fair enough deep clean of kitchen including pans and all GF food for the week.

Take aways every night seems excessive, are they paying? How about using disposable containers eg roast chicken in a tin foil dish?

Beer is ridic as no crumbs and he won’t be drinking beer at all. Whah do his parents say.

Just thought I would mention that my friend was glutened by her mil cooking other food at the same time in a fan oven.

The only thing that is unreasonable about their requirements is not accepting use of your existing kitchen equipment, which should be fine so long as you aren't using pans and baking trays with old baked-on food encrusted on them. If a deep clean of the kitchen is good enough then the same level of cleaning for your kitchen equipment should be just as acceptable - rejecting and replacing any item that can't be cleaned to perfection if you have anything with permanently burned-on residues.

Doing a deep clean, and everyone eating gluten free for the duration of the visit, is a sensible level of precaution to assure no cross-contamination. Without this, it's very easy for toast crumbs to get in the butter which is then used to cook, and that's all it takes for a coeliac person to get very very ill.

Honestly I would go bust them at theirs and go halves on the cost of food for the week. Less risk and less stress.

It’s the anxiety. One of my children is coeliac and it can be really stressful eating away from home. I would feel on edge eating anywhere other than my parents /in laws because I know I can trust them. When we go on holiday I always take foil to line baking trays and have taken a pan/utensils before now in case when I get there I’m not happy with the cooking equipment.

You sound like you’re trying your best to accommodate but I also sympathise with them because the anxiety can be horrendous. I do agree that they probably need to try and relax a little for their 12 year olds sake though. Has he had bad experiences being glutened at other peoples houses before?