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.

If she (you and family) are craving burgers when out, Can I recommend Hard Rock Cafes? As soon as I mentioned being coeliac I got my own waiter, who brought out a dedicated menu, thoroughly explained how everything was cooked and they have a separate area for prep. And I had a proper burger with a lovely bun for the first time in ages.

It’s great that she’s been diagnosed. You will get used to it, it’s just a shock at first. You’ll find plenty of food you can all eat and she will learn about wat she has to avoid. There’s an app available that allows you to check labels.

Op in the kindest way you need to pull yourself together. Look at what it’ll give her, a stomach that doesn’t hurt, no rashes etc. we are going through this too, son’s energy has jumped up, his stomach isn’t sore and his eczema has disappeared nearly! He had some pizza and he was back to pain and rashes. Gluten free cereals are comparable according to him (thank god!) as is pasta (he lives for both!). Pizza is something unfortunately we have to figure out and he has to forget garlic bread. We have to be careful with soups. He’s sad about crisps as he hates the alternatives but fruit, veg, jelly, there’s rice cakes and there’s popcorn, sweets and chocolate he can have easily (a lot of cadburys nestle and haribo) and fizzy drinks too for Christmas! Start seeing this as an amazing thing (sorry to be naggy!!)

Where possible make your own stuff, thar way u know what's going in it. It's probably best to.do gluten free for everyone without saying anything. Be careful with stock cubes etc, the little things that we forget about. Does she have meals at school? This might need looking at. I make soup and take in a flask.This probably sounds really daunting. There are lots of things that are gluten free, rice etc. If u buy gravy granules fet the supermarket own brand, a third of the price of Bisto. Crisps? Seabrooks are gluten free. The best bread I find is the marks and spencer brown bread, it is expensive but I ration it.
There are certain chocolate bars that are gluten free. I do this through choice to help with stomach issues but I understand it can be very daunting at first. Get daughter involved in baking and make it fun.

When I was diagnosed out of the blue (silent coeliac) I spent a few weeks gorging on the things I thought I'd never be able to have again - seaside fish and chips, macdonalds, donuts but over time I've found alternates / ways round (bunless big mac) for all except a double decker! I really miss double deckers.

DC was diagnosed 2 years ago - I was, and still am gutted for her. Yes there is plenty available and yes her health is the most important thing but it's so flipping annoying. We had a dietician that said may contains are okay - I know many disagree but we do eat them and her levels have still come right down. I also try to be quite relaxed about risks of cross contamination to her after she was getting stressed about a kid at school eating normal sandwiches near her - obviously I do take it very seriously where I can but trying to avoid her spiralling about things she can't control.

I find asda good for naturally gluten free food e.g. sausages and all have decent free from ranges but they are expensive and full of crap so I bake as much as I can and this is always gluten free. All our evening meals are gluten free but breakfast and lunches are not for others in the house due to expense / taste.

Also for McDs, I just go without the bun but my DC likes the Warburton (I think, maybe genius) Square rolls so takes herself one of those to put her bun in.

Pizza Hut has the best gf pizza in my opinion and lounge bars are amazing

Asda's own stock cubes are gf also (sound like a sales person for asda - am absolutely not, it's really going down hill but the gf availability outside of the free from range is keeping us shopping there)

If you also have diabetes in the family then monitor the coeliac closely for any signs of diabetes- autoimmune conditions love company and once you have one, there's a much greater risk of the other.

You’ve had some great advice. Just to say good luck! My DH is coeliac and our ds2 has t1 diabetes - wish I had known about the family link as I would have spotted the diabetes looming way sooner.

Now we are used to both, we just roll with it. Ds2 is a brilliant cook and makes loads of great gf food - lots of Japanese and Indian stuff which is naturally gf.

It is crap to be diagnosed but there are plenty of resources and freefrom items continue to be developed.

I am not coeliac (although the original GP did mess up the testing so we will probably never actually know) I do become quite ill very quickly if I eat anything with gluten (tingly mouth, D&V). I have a rule in the house that if it is cooked into something (e.g. a pizza) then it can come into the house (obviously I don't eat it) but we have no free ranging gluten so no bags of flour or cooking with flour because it can get everywhere. We then just have certain trays reserved for gluten stuff.

It does become easier because you know what you can get and where. As others have said Asda is really good for a broad range of ingredients (gluten free flour, oats, soy sauce etc.) at prices which are more reasonable than other supermarkets sometimes a pound less. Aldi has some cheap stuff but it is all mingled in with non gluten so you need to know what you are looking for. M&S do a nice seeded sourdough, I sometimes buy their spring rolls and their gluten free iced buns are quite nice for a treat. Fortunately the three shops are near to each other where we are so I just tour the three of them. Also the Asda ingredients are more long life staples so you can stock up and go less often. It will get easier for her too as she starts to forget what nice gluten stuff tastes like.

The absolute pain though is eating out. I generally feel quite confident in Nandos and some other chain restaurants. I have found some truly fabulous places which don't use any gluten (shout out to The Angel at Holmesfield near Sheffield). I generally though just put gluten free into a search in Google maps to find recommendations. Some places say gluten free on the menu but when you turn up they can just offer you a naked burger and salad. Whilst that might be what some people want I hate burgers and salad is not always what you want to eat. Food on the go is also problematic so meal deals have very few options. Usually with sushi though it is just that the soy sauce fish bottle has soy so I manage without soy.

The thing I hate the most is when some food developer has decided that their dish will only work if it has Barley as the 23rd ingredient on the list. Sainsbury's is I think the worst for that.

In six months time although it will still feel annoying it will dominate her life less and she will hopefully be feeling much better.

@stayathomer - not to derail the OP's thread, but I'm a coeliac and had a pizza this week (shop bought this time, but often takeaway), and regularly have garlic bread. Other than some types of pastry, most things have a GF equivalent. Garlic bread is easy. Other than Walkers crisps - which are all off the table - there are lots of others.

Shout out for Seabrooks crisps - whole range is gf.

A quick post to say, I’m sorry to hear about your daughter - hopefully, being glutenfree will make her feel better soon, but it is quite an adjustment and a tough time to make it. That said, it’s not easy, but you will get there. My youngest was diagnosed 8 years ago when she was 4 and now we have really decent substitute recipes for a lot of things - often people genuinely don’t realise it’s gluten free. If you want any recipes feel free to PM me.
I second the Loopy Whisk recommendation - she has a website and the first recipe book is great. There’s a super simple pasta recipe (online, I think), a really good pizza dough and a lot of bread recipes. For bread, psyllium husk is your friend and for cakes, xanthum gum.
If you want a super easy Christmassy recipe - here’s a v simple gingerbread dough, which you can make in the blender and is very easy to work with (unlike some gluten free doughs).
Also, second schar recommendation - they do decent frozen croissants and pain au chocolates amongst other things.
Good luck! You will get there. (Apologies for the long post - do PM if you want any recipes).

Ingredients
225g rice flour (plus extra for dusting the work top)

• 125g gram flour
• 1 tsp xanthan gum
• 4 tsp ground ginger
• 2 tsp ground cinnamon
• 1tsp bicarbonate of soda
• 100g butter
• 175g dark soft brown sugar
• 4 tbsp golden syrup
• 1 egg
• icing sugar, water and decorations

Method STEP 1 In a food processor combine the flours, xanthan gum, spices and bicarbonate of soda. Whizz the ingredients to mix them thoroughly. Add the butter and process again till the mixture resembles breadcrumbs. Add the sugar and process again. STEP 2 Add the golden syrup and egg and process until the mixture starts to come together. Tip out onto a (rice) floured surface and form the dough into a smooth ball. Wrap in cling film and chill in the fridge for 20 minutes. STEP 3 Take out the fridge and roll to the thickness of a £1 coin. Use a gingerbread man cutter (or any cutter you like) and cut out as many shapes as you can, re-rolling the left overs to use it all up. STEP 4 Heat the oven to 180C/160C fan. Line a baking sheet with non stick baking parchment (reusable is best) and bake the cookies for approx 12 minutes until nicely browned but not burnt. Leave to cool on the tray for 5 mins then transfer to a wire rack to cool completely.

(with apologies to the recipe creator for lack of acknowledgement - I can’t work out where I found it)

Your diabetic may, if Type 1, also be coeliac. It's an incredibly common autoimmune crossover.

As the grandma of a 4 year old recently diagnosed I can assure you it is pretty overwhelming and very restrictive!
Example even from yesterday..we went to panto ,I brought some pringles from Lidl that were GF a while ago now recipe changed and has wheat,she had already had a couple when my daughter told me!
We then went for food post pantomime and only GF offers were at Bills ,we ordered pancakes that looked absolutely tough and revolting.
Absolutely no Christmas treat type food in Supermarkets apart from mince pies and yet supermarket charge a fortune for GF food generally!
Consequences of 2 pringles yesterday is a child with diarrhea today,so yes it is a big deal.
Coeliac really does take away the joy of impromptu treats etc .Am sure it gets easier OP but I feel really sorry for your daughter!

‘gluten free’ and safe for coeliacs are very, very different things.

Coeliacs cannot eat food that has been stored, cooked or often, made in the same factory as gluten containing products. It takes a few months to get your kitchen set up/routines/shopping/recipe game up to date and after this Eating at home is usually not so stressful.

What is harder to deal with is having to constantly think and plan when you are on the go/invited out/travelling. This is where having coeliacs can be extremely limiting.

A lot of cafes and restaurants serve ‘gluten free’ food but fuck it up by, for instance, frying it in the same oil as non gluten free food. Or using the same equipment/gloves for non-gf food (looking at you Subway). Some places will just straight up refuse service to coeliacs. In practice this means that you may have to turn down birthday/Christmas invites, miss out on office meals/meals with clients and/or have to plan every social outing in minute detail and prepare for disappointment. It IS a big adjustment. My daughter was diagnosed two years ago and we still aren’t confident eating out. We haven’t been abroad on holiday yet so god knows how difficult that’s going to be 🙄

Agree.We literally have to quiz anywhere about their coeliac protocol...most places just don't understand it's a disease rather than intolerance and really don't understand cross contamination!

My DD was diagnosed last year at age 20 and then we were all tested and I was diagnosed too. I was fortunate, I think, in that my DDs was picked up by a thorough GP who didn't accept her sever anaemia without an explanation. It was a surprise to all of us to discover it was coeliac disease.

I'm sorry your DD was in pain for so long. I'm frequently at the GP with DD2 with period and cramp issues. She's not tested positive for coeliac disease but we will have her tested again if she has any signs.

We all went gluten free as it is easier but DH and DD2 sometimes buy regular bread that they can be trusted to keep out the way, don't use the (new) toaster and don't contaminate the butter. It does get easier but it's expensive and time consuming and at times isolating. So you have every right to be upset. No-one outside of the coeliac world understands it.

DD has good friends around her and most people she knows already know someone who has coeliac disease. It certainly seems to be on the rise. COVID is a likely reason as viruses can trigger autoimmune diseases if you have the genes and for coeliac disease, 40% carry the gene. In adulthood the symptoms are often not gastro symptoms. Mine were headaches and joint issues. I had no idea. These went when I went gluten free.

Be sure to join the Facebook groups. There's a lot of support and advice out there.

It's so much easier to buy dedicated gf but remember many carbs are gf naturally - potatoes, rice, rice noodles, chickpea flour (to make wraps). As for pasta I noticed Lidl has introduced gf pasta this week at our branch, it's a mid blue box in the main pasta section.

I do advise learning to bake gf bread but your dc can also do this herself, perhaps a bread maker for Christmas that stays gf.

Dd travels the world and has (touch wood) always been fine. She’s certainly not afraid to interrogate staff about their risks of cross contamination.

in the last year she’s been to Italy, France, Belgium, Austria, Poland, Hungary, Canada, Slovakia and Slovenia and has managed even though she’s also vegetarian which limits her further.

shes off to Sri Lanka next month and then in the summer going to Thailand, Laos and Cambodia.

shes also been to Mexico and China no problem.

she has an app on her phone which uses her location and tells her where her nearest gluten free eating option is. She researches a list of possibilities before going to places.

Being able to travel was one of the things which worried me when she was first diagnosed so I’m pleased she’s managing it. Must admit when she goes away on her own I worry……if she eats gluten it’s like she’s drunk…..she staggers about, falls over, slurs her words, makes no sense and then vomits non stop for 24 hours. I dread her having a reaction like that and nobody been there to look after her.

If you're on Facebook, I can recommend the pages "Coeliacs eat out too" (UK based) and "Coeliacs eat abroad". Eating out is one of the hardest things to conquer and the pages are really good at recommending restaurants all over the country / world.

Please don't listen to anyone telling you that she'll be fine with gluten after a break. Or "just shake the toaster out". Or "a little bit won't hurt". Or "I know a coeliac and they're fine eating it occasionally."

You (and she) will also need to get comfortable questioning people and places. Often people say something is GF, but it's been cooked in a shared toaster / shared oil / in their wheaty home kitchen and actually isn't. It may feel rude at first, but clarity is important.

You're allowed to feel shitty about it. I was diagnosed as an adult 10 years ago and it still pisses me off some times!

God yeah, it's a tail spin, isn't it. I walked into the pediatricians office with my ds not knowing what to expect after a raft of bloody tests - terrified about all the symptoms leading to a dreadful diagnosis, and left both relieved and with absolutely no idea what the hell I was going to give him for lunch.

I'm really thankful we found out when he was younger, at 9, because he's adapted really well. We haven't needed for our whole family to go gluten free and have successfully avoided cross contamination - all of his ttg tests have been negative since - six years later. But we did give him his own pantry sized cupboard that fits his own toaster when we extended the kitchen, and that really helped.

It is much harder to figure out the logistics of eating out and about but you'll get there. On the upside, I can't tell you how improved my forever poorly, falling off the weight and height graphs, cold and tired ds is now as a robust, strapping 80th centile 15 yo. And thankfully at a time when more coeliacs is better understood in restaurants and easily available in food shops.

Coeliac here I just avoid all processed food in desperate times use gluten-free pasta nothing else fresh fudge loads of fruit go to the carbs are sweet potatoes, brown rice, normal potatoes keep it simple and keep away from UP foods

That 'just' is doing a lot of heavy lifting there MrsGreen100. This is a mum who is having to totally re-adjust what the entire family eats and also how the entire family cooks, alongside all the other demands in life, right at Christmas time and 'just' adopting a no processed food strategy seems like throwing an additional ball into this juggling feat.

Check out Becky Excell everything gluten free - FB group & cook books. Excellent resource. I've has IBS issues for 15+ years & only now shown up coeliac. I'm greatful because I can do something about it (compared to the disabilities I've been diagnosed with). In general/for most people it's a crap situation to be in. It is alot of effort but it does get easier! May contain/cross contamination takes some getting used to but the long term effects of gluten for coeliac isn't worth the risk. I've been left with ME/CFS & other disabilities which might be permanent & I'll only know after 2+ years of being gluten free. It's great your daughter got the diagnosis but I also completely understand your frustrations! It's draining at times!

Buckwheat - u cook it just like rice. In fact I usually use half-half rice and buckwheat as buckwheat has more roughage than rice.