My teenager has been diagnose with Coeliac Disease and I am really struggling to pull myself together

[AdverseClamber]

It's been a couple of weeks now and I'm honestly finding it overwhelming. I think she's maybe been sensitive since forever but maybe getting Covid or just puberty itself meant it got a lot worse. Doctors thought her painful stomach was down to periods (and tbf she did have terrible blood loss etc) but I now realise she was being treated for rashes, low iron, abdo pain that described as 'like knives' and that these are red flags for CD.
So I'm struggling because I do feel like this should have been diagnosed earlier, if i'm honest, and she's been suffering for 3 years when it should have been picked up prior to now. ('m not feeling guilty, fwiw. Or not massively at any rate. I was up and down to that doctors with her and made to feel like a tit for not just accepting that she was in pain so much (cos i think girls are just supposed to suffer, right?)
But also... fgs. It's so HUGE. and so shit. Our kitchen is teensy so we all have to do it and i'm sick of it already.
Bah. That's it really. Bah gluten-free humbug.

Yeah cheers I got her air fryer book and her (i think) easy one so I'm going to experiment with those over Christmas, thanks! It was actually her recipes that (while i'm sure are tasty) shocked me nutritionally.
For starters there's no nutritional info, which I thought was a bit sus in this day and age, and then i made cauliflower cheese using her cheese sauce recipe and it used two parts butter to one part flour where an ordinary bechamel sauce is one to one. The sauce was delicious, most definitely, but then it also had twice as much butter as i'd normally put in so that will have helped?
I don't want to be defensive and am highly grateful for the support i'm getting, but really, she's basically an adult, she can cook and she lives in a house where we do cook and eat well. Any conclusions that have been drawn as to the nice-ness or otherwise of the GF products have been drawn at dinnertime with all of us eating. (and also remember the diabetic should be on bulgur wheat, freekeh etc which are verboten if we're eating together and with the size of the kitchen we really should all go GF).
It was quite funny, though. We put all our dietary requirements/allergies (it's not just corn, would that it were) into ChatGPT and asked for a reasonable caloried healthy diet that would suit us all and the answer came back more or less 'chicken salad/salmon salad/eggs/brown rice/yogurt and berries'.

@AdverseClamber I was where you are last year. Please feel free to DM me for a chat. I tend to use naturally gluten free stuff and can advise the best alternatives if you'd like me to help

Thanks gang! DD has the scanner (actually that's something i didn't understand on the Coeliac UK site, what's the membership we need so we all get the scanner?)
I should really go to bed now but I have followed all the instagrammers you mention and will look for buckwheat. We already like quinoa thank heavens. I mourn the loss of bulgur and freekeh the most i think. And green Oxo cubes...
I will come back, thanks, if only to rant about how annoying it is that there isn't one single approach to labelling across the various producers and how This Must Be Fixed. All of your help is much appreciated, thanks!

If your teen is anything like mine when it comes to constant snacking , the lack of easily accessible GF snacks is probably where she will be suffering the most. And the GF aisle ones are £££.

This should help- do check as this hasn't been updated in a couple of years

www.theglutenfreeblogger.com/gluten-free-crisps/

When she finds a bread she likes, freeze it sliced, & toast from frozen. From memory the Warburtons or New York co bagels & the Warburtons GF tiger bloomer were the best of a fairly abysmal bunch. All the tortilla wraps were vile and crumbled, pitta breads much better.

It will get easier.

This book is ace OP. Lovely food, lots of tips to get you started.

Also, if you haven’t got a bread maker I’d think about one. I make great gluten free bread in mine, the best gf bread I’ve tasted is from my bread maker.

Recipes

My daughter has to be strictly gluten free because if she does accidentally ingest gluten she starts to vomit and have diarrhea and her blood sugar goes sky high and is very difficult to control because she is also a Type 1 diabetic.

So I've been where you are and yes, you do have a really negative attitude toward it. My daughter was diagnosed 11 years ago, before there were many good gluten free offerings. Now there are many delicious items, and if you take minimal precautions, even in a small kitchen you can eat the regular stuff while she eats her gf stuff. Just do a little research and take simple steps to avoid cross contamination. It's not that difficult.

And work on your attitude--your daughter has suffered a long time and finally you have a diagnosis and can help her feel better. How about some gratitude for that?

Lol, honestly. No. I'm not feeling it. I'm still pissed off that they treated her for rashes and mouth ulcers and low iron and terrible knife like gut ache without ever putting the picture together, that they more or less called her a liar and made her feel shit when all the time she was waving red flags for CD and you just can't scold me into feeling grateful. Someone else posted that she was at least diagnosed in half the usual time and that actually was quite comforting, in case you're not seeing how this works.
Anyway, good to know I have to be on my very best 'can do' behaviour to post on Mumsnet in the middle of the night. It goes without saying that I hope your daughter's health continues absolutely as well as possible.

For travelling or sleepovers, this has some good ideas.

thesightseeingcoeliac.blog/2020/01/21/gluten-free-travel-food-and-snack-guide-the-sightseeing-coeliac/

And always keep a stack of her preferred GF pizzas in the freezer to take with her for unscheduled sleepovers. 9/10 at someone else's house, with a fussy bunch of teens, pizza is for dinner. I know Dominos offer GF again after covid, but think it still isn't guaranteed free of cross contamination.

The Knorr stock cubes are mostly all gluten free as are their stock pots.

I've never used oxo anyway but the green knorr ones are I assume very similiar.

OP I completely feel you. My ds10 was diagnosed CD in sept after 8 months of suffering horrific symptoms. I ended up putting in a complaint to my trust because his original coeliac screening from the hospital came back positive and we were not informed for 6 months! He's been GF for 3 months now and I have gone threw a range of emotions from absolutely fucking livid to extremely sad. So you feel whatever fucking way you want/need to feel and let it out.

My DS also has autism so prior to diagnosis diet was already very restrictive, typical ASD beige diet and can't deal with the sensory textures of a lot food so swapping over to GF has been extremely difficult for him. The whole experience of hospital admission, copious medical tests and change of routine has also affected his mental health massively and his schooling. The whole situation is fucking shit and you're allowed to feel and say that.

Sympathy to your Dd and you. It is a minefield, but at least people are more informed than they were in the past. And have you looked at https://www.juvela.co.uk/starter-pack And www.schaer.com/en-int/faqs/faq-schaer-welcome-package She can be sent a box of gf stuff for free. Ok, some still tastes rubbish, but believe me, it’s better than the bread in a tin that was my only option. Some places you can still get bread prescribed. https://www.glutafin.co.uk/register/

Hey, I completely understand. Be angry. It's shit and it's not fair. It makes life harder and that's ok to be pissed off about. I'm sure you are very supportive to your DD and u need somewhere to vent.
I'm coeliac and have been for 20 years and coped. But now my 15 yr old son is diagnosed and I feel awful for him. He can't go to a lot of food places with friends when he's out, he has to always think about it. We do have to buy a lot of gf substitutes eg bagels as his school canteen is crap so he needs a packed lunch. We get thru 4 packs a week at £2.70 each - normal ones are £1. It's really unfair. I have two other teens who aren't coeliac and I can't possibly afford for them to eat gf for things like that. We now have our own toaster, bread bin and labelled butter but otherwise my kitchen is as normal. We do eat huge amounts of rice tho!

I’m gluten free and have ordered all the Christmas dinner from Cook to save hassle as we have a lot of visitors. Even the cauliflower cheese is gluten free! There are so many options now and it takes a bit of practice but I don’t feel like I’m missing out.

It’s worth considering getting the whole family tested for coeliac as it often runs in families although sometimes presents differently - or not many symptoms- (not even gastro issues). It would be good to know though as you could be doing damage by eating gluten. To be tested you do need to have been eating gluten in your diet so don’t give up gluten then expect to be able to get tested.

Firstly, can you cook/bake? This has been they key for us. As PP mentioned Becky Excel is your best pal. Her books are worth getting. And her blog glutenfreecuppatea
She has pastry and bread alternatives covered. Personally I just skip bread as much as poss. I can't get used to the different texture but Becky's crackers are good.
She has all cake alternatives covered and they are good. Taken them to work and people haven't known they are GF.
My DS is also GF and it has taken some adjustment but he has lots of options now. Usually freeze some cake so always have some available!

OP you're getting a slightly hard time, not sure why. It's not nice news. That said I have a coeliac teen and it's OK. She didn't like the bread much to begin with but tbh I think over time she has forgotten what nice bread tastes like. Pasta- we all eat GF, it's the same price (Sainsbury's own, I guess it is the same elsewhere). Sweet stuff - cakes etc - these are easy to buy and find in shops.

Thanks to the PP who mentioned that you can just rinse lentils that say may contain- I had no idea about this!

The challenge is eating out / quick snack in town/ other people's houses.

With respect to the poster who said the following:

For what it's worth, my wife was told by her endo to not go super super strict as that actually makes it worse over time, so she will still use the same toaster as me for example (just shake it out between uses)

⬆️ This is dangerous BS for a person with coeliac. It is not an intolerance/ allergy but an auto immune condition. Speak to a dietitian asap - they are v knowledgeable.

Good luck. It's a pain but it's doable.

Been there, got the t-shirt. My DS was diagnosed just before Christmas, 12 years ago. He had been suffering for 8 years! We had been to the doctors so many times over the years. My heart could have broken when after several months of gf, he said “ so this is what feeling good feels like”. Poor kid.
Hes in his twenties now. He’s adjusted, so have we. He recently went travelling around Asia and survived 😀. Mediterranean countries are really geared up for gf. Italy was brilliant.

He can deal with a bit of cross contamination now. He does tolerate some food with barely malt extract, but he doesn’t push it.

Where do you shop op? Asda has some very reasonably priced free from food. We don’t normally shop there, but I do put a gf order in once a month.

Mostly he eats the same food as us, as if we’re doing a roast, we make gf gravy and yorkshires. Lasagne and Mac cheese with gf pasta. We always have a couple of emergency gf pizzas in the freezer. Goodfellas are his favourite as they have proper cheese and not dairy free. Baked potatoes are another decent after school/work snack. Supermarket own brand cereals ( cornflakes, coco pops, etc) tend to be gluten free. Kelloggs aren’t. Only their special gf range are ok.
According to ds, only Warburton tiger bread is worth eating. It’s v.expensive, so we buy, slice and freeze it and he takes it out as and when.

It may feel overwhelming at first, but it does get better and you all adapt.

Gluten free on Facebook
It can take years for a diagnosis, don't beat yourself up.
I eat normal food unless there's breadcrumbs or sauce. I but Asda gf gravy mix or Bisto best glass jars of gravy mix.
Aldi sausages and Tempura battered Chicken is a hit here too.
I have the app from Coeliac UK I know lots of people don't like it but I do.

Lazy Day do a Chocolate Tiffin and Rocky Road that are delicious. Great to have in for treats if you don't want to cook. Also, the M&S Made Without range tastes great (to me)!

It's horrid when things take ages to be diagnosed. You can't help but think 'what if' and feel let down.

You will have a bit of adjusting but, you will get used to it and your daughter will feel better.

You will get the hang of tge range of foods to eat at home really soon.

You might find eating out more challenging. There is a coeliac society award I think for restaurants

I am intolerant so I appreciate I can eat some but I avoid bread and pasta.

Sainsburys do brown rice pasta which is in the normal aisle and way nicer than gf pasta.

The schlar frozen rolls are nice - they taste pretty much the same as normal part baked ones.

The rest of bread I avoid and mainly just have crackers.

I've been diagnosed for 27 years now (was ill for 3 years before that), and it is a fucker. Don't get me wrong, I've not let it restrict my life in any way, I've travelled a huge amount etc etc - but especially at this time of year where there are so many food things it is pita as you can never just put something into your mouth unthinkingly.
Mourn it, like a loss for your dd. Then move on and find the things she can eat and that she likes. I love pasta, and finding a great italian GF pasta (weirdly cheapest on Amazon) made me very happy. And I spent a few weeks in Paris over the summer, where there are a number of entirely GF bakeries and believe me I ate ALL the gf croissants and patisserie.

M&S do very good Cumberland and other sausages which are GF but in the ordinary aisles.
I do feel for you.

What brand is the Amazon pasta?