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.

I’d love to know where these GF takeaways and restaurants are OP! It’s quite hard to find any places that are 100% GF.
their stance on pots and pans is insane! Just make sure they’re washed thoroughly.
Toaster bags should be fine for your toaster. Don’t t buy a new one!
if they want new pots and pans what about plates/bowls/cutlery/tea towels/dishcloths. Honestly they are being ridiculous!

I am coeliac but I'd probably be a lot more controlling if it was my child. It is stressful when other people want to cook for me because they don't understand how to read ingredients lists or about cross contamination always.

If it was me coming to stay for a whole week though, I'd offer to do most of the cooking tbh. Bring toaster bags. Stainless steel pans are absolutely fine - my DH and son eat gluten and I feed it and cook it for them. But DH and I understand things like not using the same utensil in the gluten and non gluten food etc, all the things to check.

Fair enough to say you're struggling to afford the cost of takeaway every night but they're welcome to order for themselves if they feel safer that way.

I do think things like consuming drinks with gluten in, even food with gluten in - doesn't bother me personally esp if you reassure them you'll wash hands before touching common surfaces (doesn't bother me but just imagining if it was my toddler who gets into everything). Tbh I just probably wouldn't stay with you at all if it was this risky, doesn't really seem fair.

I think they should be bringing their own pans/utensils/cooking equipment if they want you to cook. The beer request is ridiculous. I know people with coeliac have to be extremely careful as even a tiny amount of cross contamination can make them very poorly so I understand the fear of that but many of their requests are beyond what’s reasonable. If they were to eat out in a restaurant they can’t insist everyone around them eats and drinks GF

Of course they’re not a contamination risk. Do you think that everybody diagnosed with coeliac replaced all their pans and dishes? Yes, scrubbing with fabric used to scrub gluten could contaminate them, so you replace all your scrubbing brushes, wiping up cloths and pan scrubs. You replace wooden tools because gluten can be stuck in the wood. You might replace some electrical equipment if you don’t feel you can adequately clean it, typically toasters or breadmakers.

I’d be cancelling the invitation. Expecting sensible precautions is fine but when they can’t even bring their own things because they don’t drive they are taking the piss with their list of demands. I’d have told them to fuck off at the demand I deep clean my house. If their son’s condition is this fragile, probably best they stay home.

Sure, you can think that they should be more flexible.

It'll cause their kid intense pain, vomiting, diarrhoea, intestinal blockage, skin and eye damage from blisters, joints pain, malnutrition and eventually death from stomach cancer, but it would be too inconvenient for you to adjust.

Drinking non gluten free beer will
cause that?

Eating gluten-free pasta from pans thoroughly scrubbed with clean cloths will cause that?

Not deep cleaning the house will cause that?

I didn’t realise that was the case.

This is really ignorant. Having a GF diet makes it MORE likely that he will react severely to gluten if he has an unexpected exposure to it.

A lot of coeliacs have no symptoms whatsoever before diagnosis (or none they're aware of, as they just generally get used to feeling shit) but have severe reactions to gluten after they've been GF for a while.

Is there any reason to insult me? You’re wrong but that doesn’t mean I’ll make a personal attack on you because of it.

I am coeliac. Pots and pans washed in hot soapy water will be fine. Ditto crockery and cutlery. Wooden spoons will be a risk as they can absorb eg pasta water when stirring. We use silicone implements for cooking and separate baking trays or silicone liners. Separate chopping boards but same knives washed properly. I have my own toaster.

You can make lots of meals GF very easily eg shepherds pie, curry with rice, baked potatoes and beans, you just have to check for allergens and “may contain” on any packaging.
Most supermarkets have extensive Gf ranges now.

I drink GF beer and DH drinks normal beer and I’ve never been glutened from a snog!!

I’m Coeliac and this is ridiculous, I always take my own food in situations like that.

You are so wrong, I can't even begin to convey how stupid the comment 'a little bit won't hurt' is.

My youngest has coeliac and is very sensitive but they are being a little ridiculous. Yes the kitchen will need to be crumb free and no using the toaster unless the bread is in a toaster bag. New pans is a little extreme but if he’s super sensitive could you buy a couple of cheap ones to keep for him when he visits?
I feel for everyone here. It’s a worry for the parents, a lot of work for you and a child feeling he’s singled out. I hope it’s not too much work for you. I remember when my DS was first diagnosed it was such a learning curve

What a ridiculous comment. Exposure to gluten in a coeliac can cause untold damage including cancer.

Am an allergy parent so not quite the same but I’m wondering for them to ask for this level of precaution if something has happened on a previous visit (and you not have been made aware) that has prompted this list of demands…
honestly it’s a nightmare to deal with and with the best will in the world sometimes people think they have been so considerate (& we appreciate the effort!) to the point of insistence but actually what they have gone and specially got isn’t actually suitable for child (eg, vegan but not allergy safe)… it can be extremely awkward. If you aren’t used to dealing with it day in day out it can be so easy to miss stuff, even close family slip up. It’s a very anxiety inducing situation to live with, because you have to cultivate vigilence - and in itself that causes anxiety. I tend to be able to tell straight away if someone gets it or not - be it a friends parent or a waiter etc.
in this situation we just wouldn’t stay at someone else’s house. I wouldn’t compare to other ceoliacs you know - as with all health conditions - we are all different, and we all also take different steps.
re the deep clean - sounds annoying but if you really want to go ahead with visit could also be a good opportunity for a deep clean
!
good luck

It’s possible of course. But I really don’t think so. We do this regime every time they come, which Tbf isn’t that often (probably twice a year).

For those asking, we live in a major city and there are two entirely gluten-free restaurants that we can get delivery from.

Previously they’ve stayed for less time so the delivery thing didn’t seem like such a big deal.

Yes but Coeliac is not the same as an allergy.

These requests would be appropriate for an allergy where the sufferer can suffer anyphalaxis and death from even very limited exposure. One of my son's friends has a nut allergy and we absolutely deep clean the house, his mum packs him separate food etc.

For coeliac sufferers they will have an autoimmune response, but this would not result in death (although definitely not pleasant for them) and would need to take in gluten themselves.

So things like not chopping gluten free bread on the same breadboard with regular bread crumbs - reasonable. Not having any regular bread in the house at the same time - bonkers.

Is there an option for them to stay elsewhere?

I think I’d maybe just be honest and say that you’re quite anxious about fulfilling all the criteria on the list and you can’t guarantee that you will be able to perform a deep clean to the standards required or be 100% safe with food prep and with that in mind they might prefer to stay elsewhere where they can control the environment more. I think there are reasonable accommodations to ask people and then unreasonable ones (deep-cleaning their home for example is an unreasonable request IMO. If cleanliness to that level is required then I would stay in a hotel or somewhere that is cleaned properly between visits and doesn’t have food routinely consumed in rooms etc. The takeaway thing is reasonable enough so long as they don’t expect the hosts to be out of pocket for it.)

To cause real damage like you describe with coeliac it would need to be repeated, sustained exposure. Not tiny levels from cross contamination, though of course cross contamination should definitely be avoided as it will make the person sick.

I didn’t say a little bit can’t hurt. I know the localised autoimmune response is real, but it is minimal and the villi recover as long as the diet is consistently gluten free. I won’t allow my young child to become anxious or afraid around food, especially when I can’t always control the environment (like at school or a friends house). I fully understand the medical implications of cross contamination and exposure, which is why I agree that a consistent gluten free diet is the only way to ensure he is healthy. But I think that being extreme about it is also damaging - particularly for a child who needs to learn how to navigate the disease throughout his life.

Their requests seem quite extreme but as a parent of a child with allergies, please understand it's extremely stresful and it really does drive you bonkers.

My son has a soy and dairy allergy, and every time we have visited family someone puts dairy in the food. The individuals: 1) didn't understand the meaning of dairy, 2) thought lactose intolerance is the same as dairy allergy so put lactose free dairy products in the food, 3) thought cooked dairy is ok (???) and 4) just didn't take us seriously.

So we don't visit anyone anymore. Ever. I don't want to argue and be accused of being anxious while dealing with a sick small child (and using annual leave for the privilege).

We stay in an Air BnB for a couple of days max for special occasions and my son only eats what I cook. People are free to visit us. So that's the alternative.

I understand your concern and responses because you’re obviously someone who is concerned about this, and I get it. But once coeliac is diagnosed and you are gluten free, your risks are much lower and even if you are exposed very occasionally, it’s unlikely that it will lead to cancer. All the best.

They can be flexible about cooking from home. As long as the pans are washed properly they will be fine . Or if they are worried they might not be washed properly they could bring their own cooking utensils. Also I don't think it's necessary for gluten to be banned from the rest of the family , as long as it is kept separate from the visitors.
I understand why the in laws are worried and careful but I think the expectation and expense for OP is too much and it would be better for the visitors to stay in a hotel or AirbnB during the visit .

I get it, I can only imagine the stress on a day to day basis. And I hope it’s clear that I’m not suggesting they “lighten up” or “relax a little”.

But I also think that their requests are a lot!

I am a ceoliac and I think you are being wholly ridiculous - ceoliac disease is an intolerance not an allergy. I touch and cook gluten for my family. Her inlaws can just bring their own pans.