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 just never considered baking with real flour an issue. My children want to bake all the time so i do it with them and I can’t get on with GF flour (I don’t eat cakes anyway so it’s no loss to me).

I have a friend who is also coeliac who bakes (non GF) for a living - she’d be screwed if she didn’t want to be around wheat flour!

I cut on plates too, don't use the toaster etc but I am not always furiously cleaning down my kitchen - ill make gluten containing foods next to my gf foods, im just careful to keep them apart.

Must be doing something right as I’ve never been ill and my yearly bloods are always fine.

It’s so interesting to me the range of different approaches from coeliacs on this thread. I genuinely find it very interesting, because isn’t it the case that there isn’t a scale of severity? Just a range of severity in symptoms.

I can understand how if you are immediately violently sick after consuming a gain of gluten, that might make you more risk-adverse. But the same damage internally might be if happening if you don’t have any symptoms, is that right?

Is it just personality and attitude to risk that is the difference in approaches?

I won’t be giving a 12 year old a sip of beer, nor will I be kissing him on the lips. So the gluten free beer thing does seem completely daft.

Well there is a scale of severity. Some Coeliac may react to more or less cross contamination with gluten. Although it's the standard that none is acceptable.
There is also a diagnosis of "non responsive Coeliac Disease" and "refractory Coeliac" which are extremely serious and severe.
So it's not just as easy for every Coeliac to "just stop eating gluten and you'll be fine." It's a proper autoimmune disease.

And yes you can definitely be getting internal gut damage with no outward symptoms presenting.

Absolutely if the 12 year old won't be having any beer and you won't be kissing him on the mouth, it's pretty overkill to demand only GF beer.

YANBU.

it is what the person ingests. They are being very unreasonable
So the person will not be able share toaster , and the crumbs from the knife of cutting normal bread can cause the person damage but as a poster says above, you drinking a normal beer which doesn’t interfere with them is fine. They will not be drinking it.

I can’t believe the amount of YABU! On here to be honest

I’ve only been glutened twice since I was diagnosed 5 years ago (I had zero symptoms until then, one day, I suddenly started feeling like death and having awful gastric symptoms, luckily I have health insurance so straight to a consultant who had a hunch that I had developed it after a bout of pneumonia a couple of months prior and wanted to test for celiac he was correct! My blood levels were through the roof.

Since then, if I ingest gluten I feel like I am dying. It’s the brain fog and joint pain that knock me out most after the initial exorcist style vomiting.

First time was some biscuits that were in the GF section that weren’t actually gluten free and second time was my SIL who fed me pasta, telling me it was GF when it wasn’t as she didn’t believe me, as I’d been fine eating gluten my entire life. She thought I’d made up the diagnosis for attention.

I am not militant like some in my own home. I’m just careful with cross contamination. I’ve never been sick apart from those two times at the start.

I still eat “may contain” foods with no ill effects. I have my blood tested yearly for antigens and it’s always fine.

@Loisandpeter Your SIL is a nasty evil bitch for doing that. I hope you vomited on her carpet and all over her toilet and left the mess for her to clean up. Have you ever let her provide you with food again? How did the family react to her deliberately making you sick?

My DC have coeliac disease. We do have separate things for them such as toaster but most of the time just wash pots and pans before use and always cooked for them at other people's houses. I'm surprised that they trust restaurants more than you tbh. Some are good but it is very variable. Weird that your in laws expect you to deep clean the house.

Toaster bags for toaster.

As long as everything is washed well dont need seperate pans. Ideally run through dishwasher.

Slow cooker meals might be an idea as all contained in one pot that can be scrubbed.

I haven’t read the whole thread. I’ve dipped in and out. Can someone please explain how using the same but thoroughly cleaned pots and pans are an issue? If it was cast iron that can’t be properly washed with water and detergent I can understand that’s an issue but ordinary ones that get washed up or put through the dishwasher? What’s the problem? I ask this as a super sensitive coeliac who will react to the slightest trace of gluten with a rapid onset of diarrhoea.

I’ve never let anyone cook for me since, only my husband. It really upset me and gave me serious issues around other people and food.

Dh hasn’t spoken to her since and my PIL were livid. She just kept saying she didn’t understand how I’d eaten normal food for the 15 years she’d known me and then suddenly I couldn’t anymore and that I must be doing it for attention. She never said sorry.

My God children are coeliac. I used to have a sealed bag with a chopping board and a knife/spoon in that I bought myself so that I could prepare them food. If they cam to my children's parties the whole party would be gluten free.
Its pretty easy to be fair but I always ran everything by their Mum before serving it. It's easy to get some snacks in and put them in a tupperware box away from your normal stuff and a fruit bowl would be fine. I'm guessing their beer concern is if someone knocked it over and it was on furnishings or surfaces they touched?

I’ve never heard anything about pots and pans being an issue. My consultant and dietician are excellent, both said as long as everything is cooked in hot, soapy water or a dishwasher then it’s no issue.

I mean, where would it end? Your own plates and cutlery?

Why would it be an issue if they touched it? I prepare non gluten free food all the time for my family, I bake with normal flour for them. Touching it isn’t an issue.

My husband drinks normal beer next to me all the time - these people are just nuts.

Washed in hot soapy water, not cooked 😳🤣

Well, your'e an adult I'm guessing? So you'd be highly aware that you are handling gluten and clean up afterwards. If liquid was to spill on a child and they had some on their fingers, maybe they would put their fingers in their mouth. Kids are always touching their faces. I am just hypothesising as to why they are worried about their child, I don't actually know!

I think it definitely comes down to personality and tolerance of risk.

Also different countries/coeliac societies provide different info and some are stricter than others.

One thing I’ve also noticed recently is the increase in social media posts from people who have coeliacs who state their personal opinions or beliefs as though they’re medical facts. There’s a lot of misinformation or half truths floating about.

Even within my extended family there’s a range from those that take reasonable precautions to those that would actively choose to eat gluten in certain situations because it makes life easier.

The important thing is you can absolutely safely cater to a coeliac in your home even if it’s full of gluten. I’ve just been on a school
camp where the meals for those with coeliacs were all prepared from scratch in a kitchen where everyone else's meals were also being prepared
without any issues.

So she’s DH’s sister? I’m glad the family has shamed her. I only really trust my DH and my mum to cook for me. I used to be able to eat anything and everything but then in my early teens I became lactose intolerant. I absolutely couldn’t eat or drink it anymore. At 20yo I was diagnosed with coeliac disease after a blood test to check on fatigue and low iron. Any reactions I’d had I’d attributed to lactose. Hadn’t suspected gluten at all. It’s definitely possible to eat something fine for your whole life and then not be able to.

I'm not diagnosed but I ended up cutting out gluten on the basis of it hurts when I do that so I should probably stop doing that, with an attempt to reintroduce it to get tested, well, hurting. I had carried on using wheat flour to bake for DS2 and realised after a while that I always ended up with the shits, afterwards, presumably because of the amount of it floating in the air. I know I could often feel it on my lips or I'd have to dust down my glasses, so it stands to reason I had swallowed some.

So I don't keep a gluten free house but I don't have gluten flour in it.

Yes, dh sister. She was absolutely rotten about it. Made a huge deal out of cooking me a “gluten-free” pasta dish and then when I’d eaten it, announced that it wasn’t gluten free and see, I was lying because I was totally fine.

I’ve learned that it takes 2 hours for my body to react to gluten and all hell breaking loose. She thought it would be instant. Because I didn’t immediately start vomiting, it was proof to her that I was lying.

I made it home and then had a horrendous night being sick and woolly headed/confused and then joint pain so bad for a few days after that I could hardly walk.

I agree. Same pans are fine if washed.

Your SIL is an absolute bitch.

I am coeliac and we have gluten in the kitchen for my husband. I’m really careful about cross contamination and wash pans carefully and it’s been fine. No one double dips into butter for example. I think sensible precautions are fine. Don’t know what drinking beer has to do with their child, frankly half their demands are ridiculous.
what do they do when their child is at school? Do they make these demands there? I have had another endoscopy earlier this year to check progress and my gut has finally healed and I have healthy tissue ( we looked at the camera and I had a biopsy).

I'm a silent coeliac, so you could feed me gluten and I wouldn't know. It's hard to explain to people that I have to be just as diligent avoiding it because it is doing damage, even if it's not obvious. Sweeteners on the other hand, have a much more instant drastic affect on me!

They are though. I'm coeliac and they are being totally over the top.

I hope you did a video call to her while you were vomiting. Give her the proof she was after.

If she pulled that stunt on me I’d be in the toilet within 10 minutes with all hell breaking loose from my bum. I’d stink the house out and leave her almost vomiting from the smell. It’s awful. She’d better have nice toilet paper and plenty of it, wet wipes for my traumatised bum, air freshener, an exhaust fan or desk/pedestal fan in the toilet to blow the smell away and cool me down from my cold sweats, and decent toilet bowl cleaner plus a toilet brush. I’d also need a plain moisturiser or barrier cream to soothe my bum because that stuff is like acid on the way out and then the wiping leaves it hurting even more. Once that horror was over after about an hour I’d then go sit on her lounge/sofa and do horrendous toxic farts into it. They linger. They’ll stay there for days or until she cleans the covers on it or uses an upholstery cleaner. I’d probably find an excuse to go fart on her side of her bed as an extra bit of proof that I get sick from gluten. Let her discover that delight at bedtime when she wonders why her bed stinks.

I think she’d work out that it’s far easier and nicer to buy a packet of gluten free pasta instead of being a malicious twat.