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.

There are so many gluten free options now that it really shouldn’t be as bad as you are imagining.

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.

Oh that's crap.

It can take frustratingly ages to be diagnosed with CD.
And you will adapt in the kitchen etc. And having your DD feeling well will help.you all manage.

And search out good support groups it will be invaluable with tips/help/recommendations.

Hope your DD is coping mentally and physically with this.

It’s frustrating she had a long time of being unwell when actually the signs of coeliac disease were there, and if you have want to make complaints and kick up a fuss absolutely do. Women are not listened to enough about our own bodies!

Can you all be gluten free in the house? Might just be easier rather than worrying about which pan is the gluten free one and using the wrong pasta etc etc etc.

Can you follow some gluten free pages on Instagram/Tik Tok/Youtube? They might be able to help break down simple options for day to day meals, which might help the overwhelm.

Even if your daughter started following a few I’m sure there would be loads of snack and ‘alternative’ options mentioned that she could take note of.

It’s always hard to make changes like this, hopefully you all get in the swing of it soon xx

I've been eating gluten free lately - I am not coeliac but I have other digestive issues that are better without gluten.

My advice is to ditch all the "gluten free" alternatives of everything that is only good when it's gluteny. They are all vile. I get so disappointed.

There's loads of things that are at their best without gluten. Loads of rice based dishes, loads of things with potato, I love buckwheat which isn't a wheat it's a seed from a plant in the rhubarb family. Loads of pulses.

Eating gluten free but spending loads on gf breads, patries and pasta that costs twice as much while being half as nice is like going vegetarian and only eating fake-meat : a poor imitation of the real thing.

You'll find a new balance but stop trying to replicate your old eating patterns with gf versions.

The one exception is that gf battered things like scampi or fish fingers are often lovely as the gluten isn't necessary for a good batter.

You don't have to have gluten free substitutes that taste awful just go for food that doesn't contain gluten.
Rice/salad/meet/veg.
Also your negative attitude will be obvious to your DD. It's terrible that it's taken so long to diagnose but now you know it could have been worse. Many people are GF by b choice ie. Low or no carb.
Good luck to you and your family

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

DO I have a negative attitude? Hmm. I'm not sure I do tbh, but I certainly am not thrilled for her, or actually for me either? Is not being thrilled negative? Hmm. Maybe. I will think about that. Thanks for the little guilt trip there anyway and overall I appreciate the good luck message.
What is dawning on me, and the coeliacs and mums of coeliacs know this already, is that it's not in the slightest like being GF by choice. (Two weeks ago I did not know this either fwiw).
Say for example this Christmas, my lovely family has said they'll help with dinner etc but if they make it in their houses it's hard to trust that they won't contaminate with gluten. So it does go really far, tbh. And with a diabetic in the house and also someone with a corn allergy (not normally a problem really unless we go to America where it's in everything) we're finding a lot of maize in everything GF.
Not the fish fingers, though, right enough! So far they're the only thing that are BETTER by some margin, i agree @PokerFriedDips !
Then ofc i'm just a bit wtf at the things that DO contain gluten. Or may contain it. Like, red lentils... that was quite a frustration today let me say.
So yeah maybe i am being negative but surely that's okay on here? If not here, where?

i'd be really interested in how you eat the buckwheat, actually, cos my Polish pals have bought us some but they eat the toasted ones and certainly the pack i looked at today was 'may contain'. but i guess i could toast them myself?
We've bought a new airfryer and toaster etc and are trying to do it all together but it currently does feel really overwhelming (and expensive! normally i'm a really canny shopper, but that just feels like The Before Times).

Things like red lentils you just give them a good rinse in a sieve and you are good to go.

Some supermarkets (morrisons especially) chuck a may contain on everything but if its something you can wash like veg or lentils it's fine.

The corn thing is a shitter though.

Actually it was a vommer rather than a shitter, but yes it very much was! I do think that can be tuned out though, it was our fault for using the Freee cake mix.
I'm just still at the 'ffs this is A LOT' stage I think.
That's good re the lentils cos that tipped me over I must say, but at the same time I don't understand why eg CoeliacUK is saying we've to avoid 'may contain'.

A lot of my family are coeliac and eat very well in the home, lots of big salads, roasted root veg, salmon and chicken tray bakes etc. Eggs for breakfast. Basically just need to focus on whole foods, and cooking from scratch, once you have a few recipes you’ll get the hang of it and will probably find that you’re all a lot healthier without the empty calories that come from lots of foods with gluten in them, like biscuits and bread etc.

It’s a lot tricker outside of the home due to risk of contamination even when things are “GF” though, so I feel for you there.

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

My partner is also coeliac and it's generally fine OP - substitutes are actually a lot better than they used to be (eg pasta) and there are lots of non gluten things to eat. Bread is crap although oddly garlic bread is ok 🤷‍♀️ It's annoying that a lot of chips are coated in flour and therefore can't be eaten, but mccains do have some which aren't and are actually healthier anyway.

Also check the main version of gf items. For example pesto comes in a gf version which is loads more expensive but the usual brands are gf anyway so it isn't needed.

The biggest pain is eating out as there are still not many options in a lot of places, so you need to pick restaurants more carefully. Pizza express is great if she likes pizzas. Obviously some cuisines are better for gf anyway, Indian for example (onion bharjees are often gf as a side too). Also there are usually good options in a Mexican if she likes Nachos/corn chips.

I wouldn't blame yourself for the delay in her being diagnosed. It's not an easy one to diagnose and is often missed. The most important thing is that you now know. 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) and she is fine like this.

I don't toast it. I boil it in vegetable stock (1 cup buckwheat to 3 cups water and a stockpot) - boil until the water is nearly all absorbed and then turn off the heat and leave a lid on to let the remaining water steam through.

I use it in big salads (mix with lentils and chopped Mediterranean Veg antipasti) or my favourite buckwheat bake recipe here from hellofresh or any dish that might normally use rice when rice feels boring.

Buckwheat flour (I don't grind it myself though!) makes great pancakes - traditional Breton galette crepes are made with it.

Another favourite I didn't mention is gnocchi - all my fave pasta sauces are just as yummy on gnocchi rather than pasta though cheap supermarket gnocchi isn't gluten free the proper Italian stuff is.

I can only imagine how stressful it is. We eat gf as my dd gets pains and nausea when she eats it (and a few other things,) starting a few months back. Awaiting diagnosis, but hopefully it's a temporary thing still.
We are enjoying Becky Excells recipes. Just got her air fryer book a few days ago and there's instructions on freezing and reheating in the air fryer which might be handy if you have the freezer space. Plus loads of great air fryer advice if it's new to you. She has a website too.

Well that's really interesting re the super super strictness as i have been reading that the response is worse the less you eat of it. (DD said 'so like Amy Winehouse dying after just a few drinks after boozing it up for years?' when we were chatting about it, RIP Amy).
I'm really interested to speak to the coeliac dietitian about it all because latest allergy thinking certainly re my allergicky person seems to be that the strength of the response is quite dependent on how stressed he is, whether he's had a mouthful of diesel pollution/perfume on his walk to the station etc.
BUT this does not seem to be the advice re coeliac because it's an auto-immune disease? But at the same time there clearly is some sort of dose response going on? BUT also she will need to heal so does that take place best on a zero tolerance approach. It's all so much to take in. I just want her poor wee intestines to be all pink and wiggly asap.

We’re family of 4 out of five gluten free people. Your feelings are totally normal, it IS a lot to get on board with. I would second the “avoid specifically gluten free stuff” where possible. Gluten free pasta can be good, gluten free spaghetti (for whatever reason!) seems to turn into cement when I cook it but maybe that’s just me!

One of the things I struggle with is trusting other people - “we made you a gluten free cake!” when you can see unidentified crumbs on a kitchen surface…

My kids had a massive turn around in symptoms a while after going gluten free. Your DD is still early days (the gut can take a few months to fully heal) but hopefully when she starts to feel so much better there gluten free hassle will feel a lot more worthwhile. Good luck OP

The average time to diagnosis for coeliac disease was about twice that you've described last time I checked. You did fine.

Check the "urgh, gluten-free is all expensive and minging" attitude. Your daughter will be coping with this for the rest of her life. Your attitude to this will shape her early years coping and likely your future relationship with her. She can eat a very healthy and nutritious diet with just a few changes and by being careful. Yes, GF bread and cake and biscuits and pasta are more expensive, but they're generally not any more unhealthy than the muggle version. Meat, fish, rice, potatoes, veg, fruit, etc. are all gluten-free. Most everyday meals are easy to convert to gluten-free. Eating out is more awkward, but thousands of coeliacs cope every day.

Check if Coeliac UK are still running the young persons/youth programme. At one time there was a mentor/buddy system for young coeliacs to access peer support. Avoid the CUK app, better still avoid all GF scanner type apps - they're very little value, not suitable for beginners, and not needed once you've got beyond the beginner stage.

You can do this.

"Gluten-free" doesn't have to mean frankenfoods. It can just mean pulses, rice or potatoes instead of just pasta, bread and pizza. You will all be a lot healthier as a result!

There is a lady on Instagram becky excell who is coeliac, she has cook book and shares recipes plus some great gluten free finds and finds that are accidentally gluten free at the supermarket. My sister can’t eat gluten and her favourite treat is the gluten free millionaire short bread from m&s
good luck

GF page here and she has a cookbook

www.instagram.com/meganmckenna?igsh=YmJnNDZwajNnM3Z1

Also GF

www.instagram.com/annabellevictoriax?igsh=bHlheGxkdml3NDE4

Another great one

www.instagram.com/jessicaskitchen_gf?igsh=MTA4dnRueXh3MzA5aQ==

Join and get the app

www.coeliac.org.uk/about-us/media-centre/news/new-app-launch/?&&type=r&set=true#cookie-widget

Several family members are GF and this made life so much easier.

Don't restrict yourself to the GF aisles, ther are so many things, including treat/junk that are gluten free anyway. And the app scanner makes shopping so much easier, particularly if you need to out reading glasses on to read the ingredients lists.

It is so much better than it used to be, we were always concerned when travelling and family would pack ridiculous amounts of schar bread/crackers, pastas etc to go on holiday. Now they usually go self catering and know most shops no matter how far flung will have atleast a small GF section.