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.

Can you ask them to bring their own pans?

YABU thinking they are just making life hard for themselves, can’t you see how ignorant that is? It’s one week, but your judgement to one side and get on with it.

Sorry but I just think controlling is a word that can’t be used here- we had a lad in our son’s class who had allergies and he had to stay home on bake sale days, special occasions where certain foods were being cooked. Unless they’re coming for a month you just suck it up and try your best (although technically they should stay in a hotel if they feel the deep clean is necessary to keep him safe)

Are they paying for these takeaways?

I’m coeliac, and they’re being ridiculous. A stainless steel pan is fine, assuming it’s washed properly (and Coeliac UK agrees). Or they could just bring their own.

Why so aggressive? I’m asking the question so as to educate myself. I’m sure you can tell from my post that I’m fully aware of how difficult it must be for them, I’m simply asking if their requests are too much. I know plenty of other caeliacs who don’t have the same rules, so I’m just trying to get some perspective.

I don't think they are being controlling as such but just setting out the reality of what is their day to day life. I'm not sure what you want them to be flexible with?

Getting take out actually sounds far easier than trying to cook at home and avoid cross contamination.

@Pappybear Sounds like the poor kid has it really bad- sometimes people with celiac can get contact dermatitis as well as digestion issues.
Could you ask about thing you could possibly do - like maybe buying foil trays and doing a roast chicken and roast veg, or ask them for recipes that you could cook in this way?
Maybe ask for brands they trust?

Tricky one. Husband has coeliac disease and it is very serious and the risk of cross-contamination is significant. We wouldn’t use other people’s pans etc and would be very very careful about restaurants as unless it is entirely gluten free there is a risk of cross contamination. We wouldn’t impose this on others though and would stay elsewhere. In terms of precautions for their child though they are following the correct safety protocols!

It's "coeliac". I don't think they're being controlling, just trying to keep their son as safe as he needs to be. However, maybe you could discuss a few possible compromises such as them bringing their own pans, cutlery, plates etc and some of their own food and drinks which they know are safe? Or would the risk of cross contamination in your kitchen still be too much? They could also do the work in researching restaurants and take aways in your area which they are happy are completely gluten free.

we need to get take outs every night that they are here, from entirely gluten-free restaurants

Where do you live that this is even possible?

Most of the rest is batshit too

This is helpful and why I posted. Thank you for sharing your experience.

We want to make them as comfortable as possible and I understand their requests are not just for fun!

DD has coeliac disease and we don't have a gluten free house. You need to be sensible about cleaning surfaces, washing hands, utensils, toasters etc, but you don't need to deep clean the entire house or ban everyone else from eating gluten.

I can understand them being cautious about restaurants and not wanting to risk cross contamination, but expecting you to get takeaways from entirely GF restaurants every night rather than finding a safe way to prepare food at home seems excessive to me.

Obviously it's their choice how they manage their child's condition, but I do think there's a difference between necessary precautions and expecting everyone else to follow exactly the same rules. It's possible to keep a child with coeliac safe without making life unnecessarily difficult for everyone.

DD has a blood test every now and then which checks for antibodies in the blood that can indicate whether someone with coeliac disease is still being exposed to gluten, and this is always fine.

That’s not aggressive, it’s a word you didn’t like, no aggression involved. Other people experience with this disease won’t tell you why your family are making the choices they are, and it’s just for one week. Saying they are making life hard for themselves by being inflexible is a fairly ignorant view in my opinion. They are keeping their child safe in the way they think is best. You asked if YABU for that view, I think yes 🤷‍♀️

I think this is the reality of their lives and how each day is for them. However, I wouldn’t then impose this on someone else. I would stay in a hotel or air bnb and cater for my own family. It’s hard for them but also unfair for you.

Does the lad go to school? Are the other children not allowed sandwiches etc when he attends?

I know cross contamination is a serious issue, but I do think they are taking it to extremes. I would rather trust the catering of a family which has been ultra careful than trying to survive on coeliac safe take aways - they are like gold dust!

It's tricky.... I'm coeliac and know all too well how poorly you get when you have been glutened - it's completely debilitating and can take months to recover from. But - I am very happy to stay at other people's houses and be cooked for from their pans. As long as everything is clean it's all good. I must admit, I am quite obsessed with wiping down surfaces - a Coeliac cannot tolerate any more than a small crumb of gluten a day, and it's so easy for contamination to take place, so I am definitely a lot more cautious than I was pre-diagnosis.

Maybe have a chat with them about bringing a box of their own pots and pans and cutlery (which stresses me out far more than pots/pans!) if they can? Then a bit of cooking would be fine and some takeaways?

My sister is Coeliac and has been since weaning 51yrs ago - so I have extensive experience of living alongside this. She is of the .5 or 1% that can't tolerate things like gluten free oats etc in the highest level category.

We use the same saucepans - she does in her home too.
She keeps a separate bread board and bread knife, or if staying at mine uses it first, or washes well before using herself.

She has no issue with other people eating or handling foods she isn't able to eat. She is careful with crumbs and so on. We may cook the odd dish separately for her and prepare that first. Food is stored in the fridge on the same shelf, but obviously wrapped and not something that could leak/spill.

I would be more concerned about takeaways every evening - that's far more of an unknown that cooking at home.

Yes - take it seriously, think slightly differently but even if he is the most extreme case being around gluten containing food will not trigger a potentially fatal issue like a severe nut allergy.
He should not be eating or consuming it, and even a tiny tiny amount could cause him a short term tummy issue, but thats up to him to be able to 'risk assess' too and say no if necessary.

I get thats difficult age 12 and he doesn't want to feel he is missing out, I think thats more the challenge than anything for you.

I am coeliac.

I think eating gluten free whilst they're with you is sensible just because it makes life simpler.

The child is not drinking gluten free beer so no need for anyone else to.

There's no issue with using clean pans and cutlery. Wooden spoons and chopping boards might be best avoided.

Takeaways are far higher risk than sensible precautions in your own kitchen.

Thank you for the correction. We’re asking them for a shopping list of food that we can buy in for us. We will get a separate toaster and chopping board and will thoroughly clean everything. Gluten free food will be kept separately from other food.

He doesn’t have contact dermatitis from it. I think they just want to avoid any potential exposure.

I don’t think it will be possible to find a gluten free restaurant for every night. Suspect it will be the same one or two each evening.

Could they bring their own toaster and chopping board, and maybe contribute to the cost of, or bring some of the food themselves? Otherwise I do feel like they're putting you out a bit more than they need to, financially and in terms of effort.

DD is coeliac and we aren’t GF. I am very careful, I clean the kitchen a lot and we have separate areas to store some of her food, prepare it. I also make her food first to reduce risk.
i have separate wooden spoons but not pans. Sometimes I have a few things cooking so having different spoons means I don’t mix them up.

The takeaway thing is ridiculous and far more risky than cooking a whole GF meal yourself.

Can't blame them for being super cautious but struggling to understand why your pans are bad but takeaways businneses pans are okay?

Personally, I couldn't be arsed with it and wouldn't have them staying.

When you say "he must have it really bad", do you mean really bad symptoms? Because that's not necessarily an indication of how much damage is being done to his small intestine. Some people have no symptoms at all but still have intestinal damage. Symptoms aren't a reliable indicator.

You can't tell how much damage is being done without medical assessment. Someone might feel absolutely fine but still have damage, while someone else might feel horrendous.
It's different to an intolerance, where people can have wildly different symptoms. With coeliac, it's an autoimmune disease, and gluten can damage the small intestine whether you have symptoms or not. That's why everyone with coeliac needs to avoid gluten, regardless of how ill it makes them feel.

Again, thank you for your experience.

I suppose ultimately we just need to accept that this is how they want to manage their situation. I don’t think they’d be open to suggestions about compromises, they are understandably sensitive about it and really don’t like any sort of conversations on the subject.

Unfortunately they can’t bring their own pans and toaster etc because they don’t drive and I think it would be too hard to transport everything for them.

I must admit, when I moved into my own flat, living on my own, a few years ago, I decided the flat would be completely gf and it has been such a relief after years of living with and bringing up a family where I was the only Coeliac. The stress of cross contamination was explicitly there all the time, but the joy of knowing my flat is completely gf is lovely! When people/my children visit, they just have to put up with gf bread/pasta etc..!

Don't forget you won't be able to use your air fryer, if you have and use one. Ovens and microwaves are all good though! I didn't have my own toaster in the family house as there wasn't room for 2, so I would use the grill - even if it was clean I put foil down to make anything gf on it and it was fine.

I think if your family member knows you've thought about all this and have prepared, they will hopefully feel reassured - it's great you're preparing so well!