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.

Saw this recipe on Facebook, I'm going to make it later

No white flour, only lentils. The best gluten-free cheese bread, no sugar, no yeast.
Ingredients
Lentils: 180 g (1 cup)
Eggs: 2 large
Yogurt: 100 g (1/2 cup)
Salt: 1/4 teaspoon (or to taste)
Dried garlic: 1/2 teaspoon
Parmesan cheese: 30 g (1/4 cup, grated)
Parsley: 1 tablespoon (finely chopped)
Baking powder: 10 g (2 teaspoons) ...

No instructions given so I'm going goin to precook the lentils until they start to break up, mix in the remaining ingredients then back at 180 degrees for 25 minutes in a loaf tin and see how it's cooked

Yes I saw this one too, god bless Stanley Tucci! I have high hopes it will taste like a cheese scone as the corn allergy is proving quite a tricky thing to navigate with this coeliac thing. Bought some fancy schmantzy bread 'for Christmas' from a local GF bakery and when they tasted it it was delicious then 'uh oh' and straight to the loo. So this recipe could be a godsend as it looks like maize flour is not great.
I know we're all very busy this time of year so I'm immensely grateful for you all taking time out to help. Our buckwheat from the Polish pals is deffo glutentastic so it's gone to the food bank already but I will completely look it out as it seems right up the tastebuds of our street and we are already getting a bit eye rolly about the amount of rice we're eating.
Fingers crossed, all of us, for a brilliant Christmas dinner, eh?

oh yeah and mitogoshigg, please please do report back re cooking of the bread.

@Unexpecteddrivinginstructor have you heard the news about the Angel? No longer fully GF from new year. Not good.

That’s a shame about the bread when it should have been gf, is the bakery purely totally gf. Just wondering about cross contamination? If it was definitely gluten free I wonder if it had gluten free oat in it? Some coeliacs can’t cope with gluten free oats either.

GF food is nice. I honestly don’t understand when people say it isn’t. I had someone say it’s disgusting to me once! It’s different, but it’s still nice. You soon forget how muggle food tasted anyway. DD always associated muggle food with pain so to her GF alternatives are mouth watering 😋
The cost is troublesome. It’s understandable due to lack of economy of scale and the cost of being certified GF, but lots of muggle food is accidentally GF. Tesco is especially good - it trends to use rice flour or potato starch on many of its main lines.
It takes time to adjust OP and it is hard when it comes to socialising. Even some of our relatives have been cruel when it comes to family gatherings but I see it as a way to filter out toxic relationships/people.
Join CoeliacUK (it funds research) and it gives you a supportive community.

GF food is nice. I honestly don’t understand when people say it isn’t. I had someone say it’s disgusting to me once! It’s different, but it’s still nice.

@FloralGums I think it just highlights how narrow/restricted some people's experiences and skills are when it comes to food. If you're a beige buffet sort of person then gluten-free can be quite a challenge.

I have never been officially diagnosed as celiac as by the time they tested i was already gluten free. But I had years of pain then progressed to being housebound and wearing tena in my 20s for months as I lost control of my bowels.

The doctors weren't helpful, they offered me antidepressants when i broke down in tears in their office. I read lots online, decided to do the fodmap diet and eventually realised gluten was my main trigger.

I've been gluten free for around 7 years now. I went out for a meal somewhere I've been before with no problems. The manager saw my GF label and directed the food to me, I didn't question it as I trusted them. Unfortunately that was an error, it wasn't GF and I have been unwell for 3 weeks not being able to eat more than a banana at a time. My stomach is still sore but I have only in the last day been able to eat a meal without pain. The moral here is you can no longer trust places even if you've eaten before with no issues, if it looks like everyone else's or looks too good question it. I wish I had.

As for alternatives you get used to them. Warburtons are my favourite for bread products especially their tiger bread and wraps! Sainsburys chocolate chip cookies are my favourite biscuits (even not gf dds will happily eat these!) Aldi do lovely tempura chicken which is nice in a wrap with sweet chilli sauce! The finest sausages are lovely and gf, I make cheaters sausage rolls using those and the jus rol puff pastry for lunches. The gf couscous is nice and good for quick lunches, i cant remember the brand but i buy in sainsburys. Asda are great for alternatives, I do a monthly order from them.

We mostly eat natural gf so lots of rice or potato based meals. I don't really buy snacks except the gf cheese oatcakes, rice cakes, fruit and the occasional chocolate. Weirdly with chocolate I'm ok with cadburys but unwell with galaxy.

Another thing to be aware of is coffee shops as many use oat milk now which isn't always GF, so tell them so they can clean the spout between. Or go for things that don't use milk like the iced coolers or tea.

Beige is actually fairly well catered for. I'm more bothered that I'll never again be able to eat pane sciocco with oil and salt or lavash or roti or a warm baguette end straight from a French village bakery or udon or any of the literally millions of foods from around the world that either are wheat-based, contain wheat as an ingredient, or are made in an environment that can't be guaranteed wheat-free.

Don't be such a snob. You're not better than other people because you're happy being restricted to a tiny proportion of the world's incredible variety of foods.

Oh yes, there's things that are off my diet for ever that I'd love to be able to eat again.

But I'm not going to wave the hair shirt and complain that a gluten-free diet is miserable and disgusting as others on this thread are. I feel pity for a child whose parents are so negative about the diet that child is faced with for the rest of their lives. Some parents can set their kids up with such a heavy chip on their shoulder they're destined to forever walk in circles of misery.

People are allowed to be sad and say it's shit on an anonymous internet forum that their kids are never gonna see, right after they've been given the news. When I was newly diagnosed, the relentless forced positivity was irritating and obvious. I wanted someone to acknowledge that it was shit as well as making any helpful recommendations they might have. And implying that anyone who complains about the difficulty of putting together a tasty but doable GF diet must be a narrow-minded pleb who's dependent on sausage rolls is just arsehole behaviour. People can do without arsehole pity.

My present to myself this Christmas was an order from Manna Dew. Coffee and an almond croissant on Christmas morning was sublime.

But, as someone else said above, even after 15 years I still have the occasional pity party. Eating at home is not generally an issue, but out and about is a pain. Travelling is a pain. In some ways worse than it was 10 years ago, the chain coffee shops all used to do gluten free savoury options back then.

My hubby was diagnosed August this year.
It's not been too bad. Cook from scratch , swap things like Worcestershire sauce for Henderson relish. Google is great to find alternates for things what have wheat/barley etc.
he likes the promise bread. Gf pasta for him I cook it separately to ours.
If celiac you'll need a new toaster to keep separate.
Then just be careful of cross contamination. Eating out can be less spontaneous due to having to check menus beforehand. But a lot of places are more aware now.
He has a stash of free from frozen stuff for quick meals in the freezer. We've swapped our usual sausages for Tesco finest as these are gf. But so are other brands. Just a case of checking packaging

@DataPup my DH came back from London the week before christmas with a box of Borough 22 gf/df fried doughnuts for me that he had had delivered to the office. I cried into my jam doughnut, I haven't had one since 1997.
And @LockForMultiball I agree. It is shit having to be GF. On the occasion I go somewhere 100% GF like Little Nonnas or NoGlu in Paris I realise what it's like to just choose what you want somewhere without any thought and then just eating what turns up without having to scrutinise it for gluteny mistakes. But then still I've had to research where to eat, how to get there rather than just saying 'oh, that looks nice' and going in somewhere.
If ds had needed to be GF, of course I'd have been super positive for him, made sure he never missed out and so on. But that doesn't change that I know there are times you are sitting in your car at a wedding eating a cereal bar as there was nothing for you to eat in the evening, or prodding a green salad round your plate as everyone else wanted to go somewhere with no safe option, and that sucks big time in a way that someone who isn't GF themselves cannot understand.

Exactly @CMOTDibbler. And I got very little of that validation that yes, you're not imagining things, this really can be quite shit sometimes, from places like Coeliac UK, professionals, and certain online communities. There's certainly a place for positivity, sharing tips, and concentrating on what you can have rather than what you can't, but IMO the psychological/social/extra life admin aspects are by far the hardest parts of living with coeliac disease, and it doesn't do any good to try and pretend they can't be hard to manage sometimes. Especially at the beginning. I don't have kids myself, but I've met a few parents from time to time, and discovered that they are in fact human beings who can express negativity about things without expressing all of those things in exactly that way to their child

God almighty! Lol I thought I'd come back to say thanks again and that we'd had a good Christmas and this was the chat?! DogInATent, really... I feel sorry for <insert pitiless thing about your child too>...

Just for the record, though, we eat well here (thought I'm not averse to a bit of brown and have as someone said been delighted with the fish fingers). We're all good cooks in the house and looking through our parade of recipe hits they're surprisingly gluten free (we prefer Hendersons to Worcestershire for example, tamari to soy sauce) so I'm wondering if we've tuned a lot of gluteny stuff out by accident anyway. I mourn the loss of couscous and freekeh and bulgur and I am missing proper pasta as I worked a lot in Italy and am finding the substitute pasta so different as to be unwanted. I think maybe it might work better in bakes than just straight pasta, as al dente tastes quite raw, so perhaps blowing it out in a bake might be preferable? Thoughts gratefully appreciated.

I have no doubt we'll boss whatever we need to boss tbh but I'm still not really bounced back from the whole diagnosis as my poor wee teen is finding it massively isolating and her stomach pain seems not much improved, considering... (yes new toaster, implements, boards, airfryer). Still haven't had the meeting with the dietitian yet so we feel a bit up in the air still.

I did buy the Pippa Kendrick book someone mentioned and it's absolutely LOVELY. She subs out eggs though, does anyone know how to sub them back in as eggs are the one thing no one's allergic to?

I may be missing the point, OP but thanks so much for the Pippa Kendrick recc. Dh is gluten free and developed an egg allergy 6 months after he was diagnosed. We think he is now intolerant to dairy. I’ll take a look at Pippa’s book, thankyou.

Sounds like you guys are bossing it.

I just use eggs in Pippa Kendrick cooking OP as we don’t need to avoid either, is there anything in particular you mean recipe wise?

The Bakewell tart is absolutely divine and I cook that one whether I need to cater for allergies or not. Honestly, it was such a relief when it was published, it felt like the first grown up allergy cookbook I had found, gave me hope.

Cheers, yes, i just mean where she uses two tsp of the substitute she recommends do i use 2 eggs? (i'm sorry i don't have the book on me so it may be another measurement but hopefully you know what i mean).

The Intolerant Gourmet: Delicious Allergy-friendly Home Cooking for Everyone: Amazon.co.uk: Pippa Kendrick: 8601300031224: Books here it is Bimbles, i paid about the same price as this one and the copy they sent looks pretty much brand new.
Of course i'd be lying if i said i'd made anything from it yet, but i'll get there. Quinoa bread looks interesting and i'm anyone's for a blueberry shortcake.

ah sorry, to be clear it was DH who was having a reaction to the maize flour cos he's allergic to corn (as well as some other mad stuff). it's something to navigate for us as a family because so many GF flours feature maize.

Yes, just two eggs instead. Egg replacer is usually 1tsp and 2tbsp water to make the same sort of volume up so anywhere where it says 1tsp egg replacer is just the same as an egg.

Op my DD 15 was diagnosed coeliac at 12 years old after years at the GP being fobbed off (who knew anxiety could cause anaemia?FFS)
It's really hard at first but it does just become a way of life.As she gets so Ill if contaminated she is really careful which helps.
Beck Excel books are your friend.Her stuff all works and tastes good.The only bread DD will eat is Schar vitality loaf , the M&S bloomer and Shar flatbreads as the rest is nasty.Nair crackers are in her vicinity at all times.Most pre made stuff is awful but if you have a Cook nearby stock up on their £5 meals for one in the freezer for emergencies-loads of GF options.M&S has some accidental GF roulade in the freezer section for special occasions.
Seperate toaster and buy toaster bags for when you go away.We have a strictly GF airfryer -thinking of buying a small seperate one for non coeliac DD 17.
Going away, print off the gluten-free spiel to give to the restaurant if it's a foreign country.
Get the Coeliac uk app and use their scanner.
DD rarely gets glutened now, but she did in the 1st 2 years (thanks centre parcs Holland ).It's going to happen, so don't beat yourself up.
And be aware it's really common to be lactose intolerant whilst her gut heals so she might still gave symptoms if having 'wet' dairy.Lactose is low in hard dairy ,such as cheddar so thats fine.My DD had to switch to soya milk and preferred it so doesn't have milk at all but the lactose free stuff is readily available.

Just realised you posted in Dec...I've probably already replied!Hope things are going better Op.Ignore anyone who is a dick enough to make a negative comment to a parent whose child has been diagnosed with CD .

Pasta- we like Barillia.The nearest to the real thing.Although she was swapped to brown rice pasta to be healthier recently.