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

127 replies

AdverseClamber · 20/12/2024 23:53

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.

OP posts:
Groovykindofglove · 21/12/2024 09:17

Oh and to answer your qu re the scanner - there's a family membership option. I think.thats what you need.

OperationalSupport · 21/12/2024 09:25

I’m not GF but I noticed your comment about green oxo cubes - I don’t know if it would work with the other allergies your family are dealing with, but I use the marigold bouillon stock powder, it’s vegan and GF and I think it’s nicer than oxo.

For what it’s worth I think you’re allowed to express upset/annoyance. You relied on medical professionals and they didn’t join the dots, so she suffered longer than needed. She’s now got a life changing diagnosis which impacts the whole household, and mistakes could affect her seriously. It is big, it is crappy, and you need to let that out.

fashionqueen0123 · 21/12/2024 09:26

One thing to check for is that if you do get a slice of gluten free cake in a cafe that they aren’t using the same serving knife as the other cakes! My friend who is coeliac had that happen and had to stop them. You need separate toaster and chopping boards. (Or be very careful washing the boards.)
Gluten free pasta is great! Bread not so much.
My friend also has to watch out of her husband has had certain beers and then goes to kiss her. It is a real pain. But the good thing she’s been diagnosed as a teen. I’ve had two friends been diagnosed early 30s after miscarriages and various other health problems and since being diagnosed those issues all gone away. The may contain thing is because of factory contamination.

Nc546888 · 21/12/2024 09:30

AdverseClamber · 21/12/2024 00:40

Appreciate it, Marmite, thanks. (thought ofc no actual Marmite as that has gluten, egad).

It’s okay. You are at the beginning of the journey, you will discover new things all the time!

marmite no… but Tesco own brand marmite is naturally gluten free. In the normal aisle. You will get there!!!

also if my mum had made my coeliac diagnosis all about how hard it was for her (and not me) id want to push her off a cliff. this is her coeliac for life. Her life

Feelsomuchbetter · 21/12/2024 09:32

AdverseClamber · 20/12/2024 23:57

Yeah, I know, but I've tasted them and they're not nice really and also they tend to cost four times as much as everyone else's food. nutritionally they're ghastly as well, esp as we have someone else in the family with diabetes.

Some are so good you can’t tell the difference. I was diagnosed with coeliac 5 years ago at 35. I was so upset and scared at first and thought I’d never get used to GF foods that they would be disgusting but some you really cannot tell the difference at all. m and s, Tesco finest free from and schar are particularly good

TeaAndStrumpets · 21/12/2024 09:40

I make batches of buckwheat pancakes and freeze them. Top tip- buy a few more small frying pans and cook them all at once rather than get bored standing over one pan. Freeze with a circle of baking paper between each one, then you transfer a pancake and its paper onto a baking tray and heat for about 7 minutes in a hot oven.

Agree Amazon has some good pastas. I used to buy Dove's Farm brown rice pasta from them 8 packs at a time, but recently discovered it is actually cheaper at Waitrose and Sainsburys. So it pays to shop around.

It is miserable. I have so many allergies (not CD) I have to take my own food absolutely everywhere, even weddings. You get used to it.

Whohasnickedthesellotape · 21/12/2024 10:00

DD was diagnosed when she was a teenager and we found it easier when we all decided to go gluten free in the household so not double buying GF/non GF. Luckily there are a lot more GF ingredients available in the 2 supermarkets in our town nowadays and I batch cook at the weekends so we make it work. We found GF wraps are better than GF bread for lunches. If the other DC fancy pizza when were out then they have it, but they don't crave it much any more and have a pretty good diet for teens.

DSis is also dairy free (lactose intolerance) and DB is a veggie and this will be the second dairy and GF christmas I'm catering for. I don't even mention it to any guests any more. I've even made a GF/dairy free veggie trifle which vanishes in a instant!

AgnesX · 21/12/2024 10:04

AdverseClamber · 20/12/2024 23:57

Yeah, I know, but I've tasted them and they're not nice really and also they tend to cost four times as much as everyone else's food. nutritionally they're ghastly as well, esp as we have someone else in the family with diabetes.

There are loads of g/f cookbooks. Try Becky Excel for some good ideas which don't mean slaving over a hot stove.

Consider yourself lucky in that you can stuff yourself when out of the house if you really need to.

AdverseClamber · 21/12/2024 21:35

Thanks to everyone who has been supportive, I really am taking notes, but I must say I'm quite dazzled tbh that the response on a site for mothers is so often that I should think myself lucky/feel gratitude for the small mercy that she was diagnosed after years of misery and loss of opportunities that she worked hard for.
And of course if i am the person posting it will by my story ('my story' added repetitiously for extra drama) you're hearing.
She's away speaking to her pals and trying to be as normal as poss (in fact acc to latest WA message she's trying to make happy face when they all go to McDonalds for burgers and fries and she is nursing a McFlurry).
I do consider myself lucky though that i can still eat pasta out of the house tbf although good point that if the doc wants us all checked then the fact we've all gone GF in solidarity isn't that good. We can cross that bridge when we come to it.
Anyway, a serious heartfelt thanks to those who have been understanding and no anger certainly but kind of a wtf face to those of you who are having a pop. Been here for years and I'll never understand this place, lol.
I'm in it for the long haul obvs (OBVS, guys). I've followed the insta accs and bought the books mentioned, thanks, and also just for anyone else who's GF an insta called dishingouthealth that seems to have loads of GF type recipes, 21 pages, 20 a page (and old-timer Cod from here assures me she's tried a lot of them and they're tasty). They look like the kind of food we like, so that's promising. (Although let me mourn the potsticker dumplings from the takeaway round the corner both for taste and convenience).

Did I see a chat thread for Coeliacs btw? Is it used? Might join if okay with everyone?

OP posts:
Hopethisendswell · 21/12/2024 21:58

Also try "the loopy whisk" really good ways to substitute out gluten in any recipe

Edited for spelling

PermanentlyTired03 · 21/12/2024 22:35

I was diagnosed aged 33. It was shit and really difficult. Spending loads on alternatives that were bloody horrible. I got a breadmaker and now buy doves freee bread mix online to make my own bread. Works out cheaper and it’s much more filling than the sorry excuse for most gf bread.
Tesco and Asda have the best gf ranges I’d say. And for a treat M&S do nice gf croissants.
youll get used to it eventually, my husband and daughter both eat normal bread, cereals etc. decent gf food is often smaller in size and 50% extra in price.
Laura strange has a website, cookbook and insta account that’s fabulous. Full of food you want to actually want to eat. I rate her higher than Becky excell. Both have good advice on their sites about travelling abroad.- doubt that’s on your mind at the moment though https://www.mygfguide.com

Home

Welcome to My Gluten Free Guide! Your home for all things gluten free - come in and discover delicious recipes, handy tips and tempting travel guides. Hi! I'm Laura LATEST RECIPES RECIPES RECIPE CATEGORIES Breakfast & Brunch...

https://www.mygfguide.com

FeegleFrenzy · 21/12/2024 22:56

Bless you. Dd was 16yo when diagnosed. I promise it gets easier, it becomes the new normal. I think on average they reckon it takes something like 8years from start of symptoms to diagnosis which was probably right for Dd.

you don’t all have to go gf, you just need to be careful and she needs separate butter, jam, etc and ideally a toaster or at least toaster bags.

dd avoids all the may contains such as dairy milk and walkers crisps and will be poorly if she doesn’t. However I agree red lentils seem ok. Coeliac U.K. only recently advised against rinsing them….a couple of years ago they said it was fine. So we already knew Dd was fine with them if rinsed. Obviously you can’t rinse walkers crisps, etc.

join all the facebook groups for information and new food ideas.

be aware she could get a temporary dairy intolerance, it’s quite common as the gut heals.

read labels, don’t use the app.

try and eat as much naturally gf stuff as possible. The main special stuff Dd eats is Promise bread, Promise bagels, gluten free Quaker porridge and gf twix biscuits and hobnobs. She also makes her own pizza bases using Caputo gf pizza flour. They honestly taste amazing.

theres plenty of “accidentally “ gluten free stuff like Tesco own brand marmite. Aldi chicken nuggets.

FeegleFrenzy · 21/12/2024 22:58

She can have the fries in McDonald’s btw. She can also order a burger without the bun and take her own gf bun or just have it “naked”. The hash browns are also fine. Be careful with the McFlurry, they’re not all ok, depends on the flavour.

FeegleFrenzy · 21/12/2024 23:02

AdverseClamber · 21/12/2024 02:17

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.

Totally get this. Dd went back and forth to the gp with vomiting, she was literally a bit sick 2 or 3 times a week for years. Gp just shrugged and said she was a bit sicky. She was anemic, low vit d, small for her age, skinny, black circles under her eyes. Stomach pains. It was me who eventually asked for a coeliac test after people on MN suggested it. Otherwise I reckon she’d still be undiagnosed.

Wibblywobblybobbly · 21/12/2024 23:11

pastabest · 21/12/2024 00:15

You do get used to it very quickly. Half my family are coeliac and it's second nature to us now.

We eat lots of meat and two veg type meals, rice and rice noodle based stir fries.

We eat lots of pasta too, there is a knack to cooking the cheaper stuff but the proper Italian brands (barilla etc) are basically just like using normal pasta.

We do have to shop around a bit but other than keeping one side of the airfryer and the top shelf of the oven strictly gluten free We pretty much eat the same as anyone else give or take a few things

Thinks to make it nicer:

  • if you live in an area covered by Ocado they have an amazing gluten free range.
-;Freee (used to be called Dove Farm) do really nice brown rice pasta. My whole family eats it by choice as they prefer it to normal pasta.
  • Freee also do really good plain and self raising flours which you can just use like normal in baking, Yorkshire Puds etc
  • see if there is a gluten free bakery near you. Often they are homebased.
  • Morriston do delicious triple chocolate gluten free cookies
  • rice and quinoa are your friends
  • if you need a break all Mindful Chef recipes are gluten free
  • most restaurant chains have a gluten free menu on request
  • once its under control you might find she's okay with gluten containing food being prepared in the same kitchen and it doesn't cause a reaction. That's certainly the case for a friend of mine. She's even okay with stuff done in the same toaster. But obviously you'd want to start out cautious!

Good luck, you'll get there. It's a big shock but once you find new favourites it's really no big deal. She's lucky to have you.

Iamnotavicar · 21/12/2024 23:37

I too am coeliac though I didn't officially get diagnosed until a decade ago (I'm 57). I had years (decades) of tests before getting a diagnosis and was even offered counseling for health anxiety before diagnosis.

Even now every now and then I get completely overwhelmed when I'm in a supermarket, a kind of mourning for all the things that I can't have, sometimes by the aisle full.

But what your daughter has in you is a mum who is keen to learn and support, and that's worth its weight in gold to her as you all adjust in these early days. Be aware though of how easily dismissed being a coeliac can be by people who are too ignorant or unkind to try and understand. I include family members and some medics in that, many of mine regarding it as a fad or attention seeking.

I'd echo Asda as a good place for staples (especially flour and pasta), and M&S for occasional though pricey treats. Becky Excel's books are good, as are her lists of things accidentally gluten free in supermarkets eg, many sausages in supermarkets (Asda, Lidl, Aldi) are made gf. Hannah Miles also has a good baking book.

You can do this! The early days are hard, but you now know what you are dealing with. A wobble every now and then is acceptable and normal because it's such a fundamental change for your household.

I've got a few gf cookbooks - feel free to PM me and I can send you a longer list of recommendations if that would help.

motherofonegirl · 22/12/2024 00:12

I know it is a massive headache and costly too, but it could be so much worse. This won't affect lifespan or ability to walk, drive, have children, pass exams etc. despite the difficulties it will bring. Try to put it in perspective. My daughter was diagnosed with IIH 3 years ago which causes daily incapacitating headaches, impaired cognitive function and potentially complete vision loss. I consider her lucky through as it doesn't shorten lifespan and despite the constant pain she is still living her life much as she was before. Whatever life throws at you having a positive mental attitude makes such a difference.

Fraaances · 22/12/2024 00:39

Firstly, her coeliac disease isn’t about you. It’s really easily controlled and she will get better really quickly. I was diagnosed at 30. The difference is night and day.
Secondly, you can live an entire lifetime without GF “alternative” foods like biscuits, cakes, pastas, flours, etc… I can’t stand them either. I just don’t eat them. The only GF things in my pantry are stock powder (Massel Brand - I’m in Australia not sure if that’s internationally available, but it’s great.), rice flour and tapioca flour for the very rare times I want to make fried chicken or fish - it’s crunchy and delicious. Potato flour is also fabulous but hard to find here. Everything else I just make fresh. I don’t like the flavour and texture of things cooked with corn flour, so I don’t buy the pastas. I make risotto instead. I have a healthy, interesting diet with lots of fruit and veggies and am able to eat out whenever I want. It’s just a matter of adjusting your mindset.

DrCoconut · 22/12/2024 01:05

McDonald's loaded fries. Order large fries and a bun less burger. Cut up the patty and use it and the cheese and salad to top the fries. Add sauce of choice (check for GF status though) and you have a decent snack. McFlurry can be iffy due to the toppings.

LockForMultiball · 22/12/2024 01:37

I was diagnosed five years ago or so, and about once a year I have a mini mental breakdown about how shit it all is. And I know it's less shit than other diseases I could have, but there's a more-shit trump card for almost any disease you could have.

Something that's almost guaranteed to send me off on one is the forced positivity that gets chucked at you around the time of diagnosis.

"There are so many lovely things like lentils and buckwheat you can have, you might find yourself eating even better and more healthily than before" — if I wanted to eat those, I'd have been eating them already (actually, I did, and when not forced, they can be quite enjoyable; doesn't mean I appreciate being talked to like this is a golden "opportunity" to completely change my diet).

"It's an opportunity to learn to cook lovely homemade meals!" — ditto.

"It can feel difficult at first, but when you start feeling better you'll know it's worth it/aren't you grateful you've got something that's so easy to fix, all you've got to do is some lifestyle changes" — I don't feel any better (though apparently my bone scans and gut biopsies have returned to normal), the dietary restrictions mean I can't do a lot of the things I want to do in the way I want to do them, and I still have to eat a fistful of tablets every day to manage vitamin/mineral deficiencies.

"Lots of restaurants now have GF options and some cuisines are great for wheat-free options" — I've still got to check ahead, scrutinise information and practically interrogate the poor staff, because I'm not going to bet my health on marketing-speak on the menu aimed at faddists, corporate guff on websites written by someone a hundred miles from the kitchen making the food, or an assumption that some random pakora happen to have been made to a traditional recipe using entirely contamination-free surfaces, utensils and ingredients, and fried in oil reserved only for gluten-free foods, when there's people dealing with naan and roti three steps away. And I still feel awkward and apprehensive about eating out, partly because I don't do it often because of the faff and apprehension.

"There are so many more options these days" — yes, I'm glad things are better than they were in the past, and that I have options beyond long-life rice bread that looks like tinned psoriasis. That was shit compared to this. This is still shit compared to my life before CD.

"People understand so much more these days" — yes, and sometimes feel obliged to cater for me when I'd almost rather they didn't. Going to visit family? No matter how lovely or matter-of-fact they are, I feel like a burden and a nuisance whether we're eating out or they're hosting me. Staying at home? DP is restricted to what I can eat, because it's such a faff trying to keep things separate and safe, and he'd feel so bad if I was glutened at home, that it's easier to just have a GF household. And people think they know what GF means and how to make a GF meal, even when they don't.

Travel is a pain in the arse. Eating out is a pain in the arse. Meeting friends is a pain in the arse. Cooking is a pain in the arse. Shopping — SHOPPING — is a massive pain in the arse. [Edit: oh, and you've just become that little bit more annoying to buy presents for, too.]

It's shit, and you're allowed to feel it's shit for your DD. (BTW she should be able to have McDonald's fries; they're usually cooked in a fryer that isn't used for anything gluten-containing.) You're also allowed to feel it's shit for you and the rest of the family. That doesn't mean you're blaming her, and I'm absolutely sure you're not going to be lumping her with all your feelings about it to deal with on top of her own. That's partly what MN is for, isn't it, to have a place where you can get all that anger and annoyance at the shitness of the whole thing out, and go back to being positive, capable Mum with DD?

Hotpinkangel19 · 22/12/2024 02:07

AdverseClamber · 21/12/2024 02:17

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.

My daughter was 17 by the time she was diagnosed this time last year. I'm just grateful it's been diagnosed and not too much damage has been done. We're still learning a year on - avoid the scanning apps as they aren't always reliable. Try to stay positive, that definitely helps

Hotpinkangel19 · 22/12/2024 02:13

motherofonegirl · 22/12/2024 00:12

I know it is a massive headache and costly too, but it could be so much worse. This won't affect lifespan or ability to walk, drive, have children, pass exams etc. despite the difficulties it will bring. Try to put it in perspective. My daughter was diagnosed with IIH 3 years ago which causes daily incapacitating headaches, impaired cognitive function and potentially complete vision loss. I consider her lucky through as it doesn't shorten lifespan and despite the constant pain she is still living her life much as she was before. Whatever life throws at you having a positive mental attitude makes such a difference.

This isn't always true. It can depend on the damage caused by eating gluten. My daughter was warned about possible pregnancy issues and bone health/ certain cancers on diagnosis.

LockForMultiball · 22/12/2024 02:25

Hotpinkangel19 · 22/12/2024 02:13

This isn't always true. It can depend on the damage caused by eating gluten. My daughter was warned about possible pregnancy issues and bone health/ certain cancers on diagnosis.

Yep — I had the first stages of bone thinning when tested, which might come back to bite me when older, and was warned about risk of specific cancers. Then there's the not always reversible neurological effects you can get. https://www.coeliac.org.uk/information-and-support/coeliac-disease/conditions-linked-to-coeliac-disease/neurological-conditions/

LockForMultiball · 22/12/2024 02:26

But sure, people, go on shaking the visible crumbs out of shared toasters, it'll be fiiiiine 🙄

Tittat50 · 22/12/2024 02:27

AdverseClamber · 20/12/2024 23:57

Yeah, I know, but I've tasted them and they're not nice really and also they tend to cost four times as much as everyone else's food. nutritionally they're ghastly as well, esp as we have someone else in the family with diabetes.

I know this is a shock but you will adjust /she will. I've lived on an almost liquid diet for years because I have no choice. I never thought I'd survive this way of life but you adjust and find a way. It's so hard but it could be worse.

You'll become creative, so will she. You can get gluten free cook books and you'll learn what tastes good. I had to be gluten free for years before liquid diet ( and now it's just liquid primarily!).

The gluten free ready made snacks are the worst, rammed with sugar and crap. You can get a really tasty gluten free pasta and loads of gluten free foods. You can use gluten free flour for own recipes. You've got to find the brands you like. Some are disgusting then you find one that's really nice.

Free from brands such as mayo and cheese and pasta are really nice when you get the right brand. It will just take time to adjust.