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.

They are being completely OTT. I have an adult son, a coeliac diagnosed as a toddler. Yes, you have to be careful - up to a point - but this is not akin to a peanut allergy or similar. There are no epi pens required for coeliac. You are able to carry on life as normal, drink beer, eat out in the presence of non coeliacs etc etc. Use of separate pans may be advisable in some instances. In my view they are damaging this child with this behaviour and need to be told so! Educate yourself on the subject and tackle it from there.

I think I would be engaging that famous Mumsnet saying - No is a complete sentence. If they push, "No, that doesn't work for us" . "No I will not be doing that. Perhaps you need to look at self catering options" etc.

I'm coeliac and super sensitive to gluten. M and S serve gf soup and sandwiches. Most restaurant chains have gf menus. 'Bills' in Reigate, and in the Westfield shopping complex are great at GF, too. I think Bella Italia serve gf food, but it's a while since I ate there. Anywhere with a gf menu is usually fine, but eating out is never going to be stress free!

Oh, and coeliacs need to check stock cube ingredients. Knorr is okay (but always check everything in case they change the ingredients).

Coeliac is not an allergy though. It’s an intolerance and there is no risk of anaphylaxis. Not trying to dismiss how serious it is but it’s totally different to the child you’re describing who had an allergy which could cause him anaphylaxis and then death

Perhaps suggest some possible work arounds (not compromises) that show you are taking cross-contamination seriously e.g. if they have camping kit that is easily portable on public transport they could bring one folding pan, a plastic chopping board & one set of cutlery & you could cook a couple of meals using these and disposable foil oven trays. Or ask if it would be ok to run a couple of your pans through the dishwasher twice, keep them separate then use them. If you discuss solutions they might relax and see you are not wanting to do anything risky.

Not rtwt sorry but as a coeliac I have picked up the following tips:
Wash pans throughly between use
Airfryers (blows stuff around) /toasters (crumbs) that are shared can cross contaminate and use metal not wooden spoons (they hold onto it-metal doesn't )
Don't bake bread /cakes with wheat flour whilst they are there as it can stay in the air...
Don't use the same cooking utensils for gf /non gf stuff or pots or use foil on a,separate cooking sheet.
Be careful of crumbs on the side etc .
Use toaster bags .
Don't kiss someone who has drunk beer as you get mouth ulcers (it was my husband...& I experienced it).
Barley malt is a wheat derivative.
Wheat is in everything from coke, to sauces, squash check labels.
Rice is safe mostly, most meat is safe and veg.
Er I have run out of suggestions. Good luck.

I'd be rethinking the whole visit to be honest, if I were in that situation it would be too much disruption for my own children especially my oldest who only really eats noodles and pasta and I couldn't change them for gluten free because she just wouldn't eat anything, it's also a lot of money having to buy a takeaway for what I'm assuming is going to be every meal time.

Clearly you aren't aware or you wouldn't be asking for more flexibility.

Can you buy a new roasting pan for them and if only gets used when they visit? You can buy gluten free fishcakes or fillets of fish and bake them, potatoes/chips & veg/beans is an easy gluten free meal we make for my mum who’s coeliac.

Likewise jacket potatoes.

Do they bring/buy food for this trip if the expectation is you all eat gluten free?

I mean, I won’t die if I get glutened. But I am bed bound for the next week with joint pain, fatigue and diarrhoea. So I really would prefer it if people took my preferences seriously…

Well judging from the vast number of posters on here (many of whom are coeliac or live with someone with coeliac) it seems completely reasonable to ask for some flexibility on this. Like cooking at home for example, or not having to deep clean our entire house.

What is interesting and evident from this thread, is how varied the attitudes to risks are.
I will continue to be incredibly cautious for their child’s sake and for the sake of not ramping up their anxiety which is already sky-high. We will buy in any GF food and keep it separately, as well as giving the kitchen a thorough clean. We’ve already bought a new toaster and chopping board as well as news cloths.

I will try and push back on the whole take-away thing though, and I might just not tell them we haven’t deep cleaned the house. Not sure how well it will go down, but we shall see.

Thank you again for all the varied thoughts and advice. It has been very much appreciated!

Apologies, that was in response to your post @Nottodaybob

Absolutely, I don’t disagree that it’s serious but it’s a completely different thing to be allergic to something in which case death is a very real possibility

I’m coeliac, our house isn’t GF but we have 2 separate ovens (one GF), our air fryer is GF and half of our toaster is GF with a cover over the 2 slice GF area. We use the same microwave.
We don’t have separate pans.

Completely GF restaurants are extremely rare.

Coeliac isn’t an intolerance. It’s an autoimmune condition where gluten destroys the lining of your small intestine. It causes gastro symptoms, malabsorption of viral vitamins and minerals leading to things like anaemia, osteoporosis etc. It can also cause brain fog, fatigue and skin issues.
So no, it’s not an anaphylactic allergy that could kill you there and then, but implying it’s an intolerance is really disingenuous.

OP, I think this family have high anxiety levels because their child will have really suffered from after being glutened previously. They are not being reasonable in all their requests but I can understand where it’s coming from. What you’ve suggested sounds completely reasonable. They may decide that they don’t want to risk eating at your house which is ok, it’s their choice.

As a coeliac myself I would say go with it.
Yes they are extreme, I allow the rest of my family to eat gluten and im just careful with my food.
BUT - im an adult in my 40s.
If it were my kids, id be much more cautious.
For one - kids don't always take things as seriously as they should so treating it this way helps the child understand better amd ks better protected.
And secondly, even a crumb of gluten can trigger the immune response in a coeliac. That response causes internal damage increasing the risk of certain cancers!
At 12 he has a LOT of years ahead of him so his cancer risk is higher than it is for me when you condsidler hes likely to have double the number if accidental exposures between now and and age 80 than I am..
Every bit of exposure increases that risk.
I do wonder how they cope when hws at school with all his peers eating bread and pizza at lunch... Maybe thats a risk they cant avoid so they are extreme everywhere else as a.kind of balance?

So overall I would say you are not BU to find it a little excessive- but they also are not BU to take every possible precaution they can.

Implying it’s the same as an allergy is also incredible disingenuous. Deep cleaning a house is quite frankly ludicrous for a coeliac coming to stay. That would be a reasonable measure for someone with a severe allergy. You openly admit a coeliac won’t die from eating gluten. The destruction of the lining of the intestine does not happen over the course of 1 week when the person has not consumed any gluten but has stayed in a house where gluten was once consumed and its ridiculous to suggest that is a possibility 🙄🙄🙄🙄

There request is totally over the top, its not an allergy its an autoimmune condition caused by ingesting gluten, so u less the kids are going to be licking beer glasses etc then basic care is needed to avoid cross contamination whilst orepping food, differenr chopping board, knives etc, checking packets for labels I cooked for a coeliac for 20 years and managed this with very few incidents or misakes.

I’m not coeliac but I am gluten free and have bad reactions. I would not invite these people to stay at my house. Way too much palaver

I would suggest that they stay in a hotel.
Or an apartment for a week where they can control everything and organise their own food.

I think they be happier there.

Why do your kids have to eat GF while they are there? I have coeliac disease also and have never restricted my family’s food. I am super careful about cross contamination, but it doesn’t come out other people’s skin, ffs.

Mine vomits to the extent of dehydration from the tiniest crumb and so we have a gf house. She eats at other people’s fine but I do have to patrol the kitchen a bit sometimes. My MIL is the queen of thinking she knows that something doesn’t contain gluten without checking the label…..

My mum is coeliac and shes been told to get seperate everything. (From dietitian) Pans, toasters baking sheets ect....

I’m a coeliac and I would never ever ask anyone to cater for me in this way. I always either offer to take my own stuff or just take it regardless. I’m also dairy intolerant and I completely understand how stressful it is for people who eat normally to attempt to feed me. A sensible conversation is all that’s required - they could easily bring some pre prepared meals and you could cook one or two and get a couple of take sways to spread the load.