DD3 has just been diagnosed with severe celiacs. Other than going completely GF what else can I do?

[Pleasepleasehelpme123]

of course since the diagnosis we are now completely GF. Is there anything I can do to help speed up recover and help heal the damage that’s happened so far??

prebiotics? Probiotics??

thanks so much for help I’m advance

Hi OP. I remember the feeling when my DD was diagnosed. It felt like the end of the world but it really isn’t I promise. It’s a big readjustment but it will be okay.
Definitely start with joining CoeliacUK. They have dieticians you can ring and a food checking app which I found useful in the early days - now I am confident enough just to read the ingredients myself.
The previous post is correct - there is no such thing as severe Coeliacs - it’s a positive or negative situation. Perhaps you meant your DD levels were high at diagnosis - that’s not uncommon (my DD was 4000ish with a normal range in our local lab if <20). It took about 4 years for her levels to return to normal and her friend was very similar (results and timings).
The thing most people struggle to understand is the cross contamination risk - even a tiny breadcrumb can trigger a reaction. In my DD case her reaction is being ill for 7 days and incapacitated in bed for 4 of those, with pain so bad she can’t think of anything else. Others may have less severe symptoms but even if they get no symptoms at all, being glutened as a Coeliac has consequences to the body and long term can cause serious health issues.
Your daughter will need extra calcium regardless of whether she is lactose intolerant (as many Coeliacs are). A dietician should advise and NHS will prescribe if you are luckily.
She may well be suffering from anaemia (my daughter could only walk 100 years at her diagnosis as she was so breathless from anaemia). She also had hair loss and joint pain and pins and needles. She might need iron for a while.
It’s worth getting done good multi vitamins - she will have been malnourished for some time before diagnosis probably.
It’s expensive unfortunately- GF food costs 3-4 times muggle food equivalents; although Tesco and Sainsburys have recently price matched their GF pasta with muggle pasta.
Yoo need to avoid any tiny crumbs of gluten- we have a separate “dirty” section of our kitchen where gluten is allowed. You will need separate spreads (butter, jam etc) We out GF stickers in the GF spreads in the fridge.
You will need separate chopping boards and wooded spoons/spatulas. Separate toasters.
We found it much easier to make family meals gluten free - we all eat gluten free pasta etc. I struggled at the beginning with separate saucepans but it was too much.
Our DD can feel excluded with her friends when it comes to socialising so at home we always make sure any treats are GF and we all have them.
We thoroughly scrubbed our BBQ and now keep it GF only. You can manage by BBQing GF food in a foil tray and separate implements but it’s a faff.
I can’t think of anything else!
It’s difficult eating out or travelling but now in daily life at home it’s really very manageable and apart from being mega expensive (CoeliacUK have a current campaign on this) it’s just normal for us now.

Dining out is a lot easier nowadays too. A lot of places have allergens on the menu, and I’ve seen a few restaurants with a separate gluten free menu. I’ve even been to Italian restaurants that have gluten free pizzas and pastas. It’s taken very seriously now which is good. My mum and sister are Coeliac. The eat a lot of protein and veg, jacket potatoes. Supermarkets are also getting better with their free from ranges. It is. Life long condition but not always hereditary. I don’t have it but cater for them appropriately when they are at my house.

I agree with avoiding ‘May contains’ - they very often do contain and the consequences are not worth the risk.
Also have a look at Becky Excell cookbooks and she has a supportive community that n Facebook.
https://glutenfreecuppatea.co.uk/

Op if you are to be tested u you or can’t stop eating gluten or you’ll get a false negative result.
if you want to be eating the same meals as DD you could just make sure you have some bread or cereal or something x2 daily away from her till your blood test.

HDReady, I'm just trying to be realistic and get the OP to realise this is a lifelong condition and not something that can be improved immediately, without trial and error, which is why I suggested she seek specialist advice.

It's not very helpful of you to say I am an alarmist for that. It's not an easy road ahead, it involves lots of trial and error and it won't all be plain sailing.

Far better to speak the truth then tell her it will all be fine and the UK is great for gluten-free! Things have and continue to improve, but it doesn't mean it's ever going to be easy.

As a PP says, look out for lots of the Facebook groups who swap tips on 'safe'/recommended restaurants, gluten free offers in shops etc.

If you do a lot of cooking at home, look up Becky Excell who has loads of recipes for things you may miss - doughnuts, Yorkshire puds, pizzas, KFC etc.

Check the label on everything you buy - gluten can be in the most unsuspecting things (eg pre-grated cheese!)

Once you get your head around it, you'll be fine.

There's no trial and error involved. You can't 'try' to avoid gluten if you're coeliac- it's a must.

Scrutinise everything to avoid accidental gluten and remove opportunity for contamination. That's it. No, it's not easy, but it's doable.

Don’t think you’re stuck to the “free from” aisle either. Loads of stuff which is gluten free but not actively marketed as such. Aldi tempura chicken nuggets for example

I avoided even may contain foods but mainly cooked from whole ingredients a lot so no chance. You need to get rid of wooden utensils as they can keep gluten from previous cooking in them. Eating out make sure you ask a lot of questions, separate fryer for GF items, are vegetables cooked in the same water as pasta (which is common). I’d recommend the whole household going GF as it’s just so easy for toaster crumbs to get on things etc. If you can’t manage that, then treat it as if gluten is only allowed in specific places to minimize cross contamination.

I think a big thing on healing is making sure she has completely GF diet to allow gut to heal, so avoid any possible cross contamination. Malt extract has gluten and will be in bold on ingredient labels but it won’t say “gluten”.

Yes avoid anything with a may contain label like walkers.

My DS was diagnosed in May so DM me if you like but I have found the Coeliac for beginners group on Facebook great and so friendly. Plus Becky Excell group
I have just tried to get DS eating as healthily as possible and he started to feel better pretty quickly tbh.
I'm
Never sure about probiotics but they can't harm I guess. The dietician appointment we had was useless and she didn't tell me anything I hadn't already learned. In fact gave me contradicting advice to the pamphlet she gave me. We also joined Coeliac Uk paid membership which gives access to their resources and nurse advice and they sent a really good info pack through almost immediately

Watch out for mixed messages, too, OP. For example, Coeliac UK states that malt vinegar is ok for coeliacs - but our DS reacts. Meanwhile, we have no issue at all with wooden chopping boards or stirring spoons. He also doesn't avoid 'May contain' necessarily - as for many products, the risk of cross contamination is so minuscule as to be negligible. Companies do a lot of arse covering. And on the other hand, we always check restaurant/fast food claims - too often, 'gf' food is cooked in the same oil as wheat batter, for example.

'Is he coeliac, or intolerant?' is one of the most reassuring phrases from waiting staff!

I would also prepare for misunderstandings in cafes and restaurants - some assume it is just a wheat intolerance or fad diet and might offer something wheat free which is not = gluten free. Things are certainly a lot better and clearer on menus than they were a few years ago but there is still a way to go in terms of understanding and also choices.

@234vhh the paediatrician said that she should be much taller given that her father is 6’4 and that this is most likely connected to celiac. She’s now on 50th centile but up until 6 months ago she was 85 plus. He said that she will reach her original height potential but it will take a few time for her bod to thrive again. Any thoughts or comments you can provide on this?

@SpongeBobSquarePantaloons Yes, which happens when the person eats gluten.

I think that PP did mean Chron's from what she claimed.

But anyway, there's plenty of hope @Pleasepleasehelpme123 and you can be confident that your DD can get a lot better and I'dve thought recover from the symptoms she's experienced if she just sticks to the diet. x

Yeah so what’s going on here is that when your DD’s body enacted the coeliac disease that it was genetically predisposed to, her immune system (specially the antibody called gliadin) started to attack gluten whenever it was present in the gut. Because gluten sticks to the villi, whenever gliadin attacked the gluten, it also damaged the villi. On each occasion, this damage would’ve been really minimal, but over time, more and more damage was done to the villi as this kept being repeated.

The villi is the way the body draws nutrients out of the gut and into the bloodstream to be taken to where it’s needed, so over time this was happening less and less. This will have affected every cell of her body including having an effect on her growth. However, as others have said, with a strict gluten free diet the villi will regrow and therefore their ability to absorb nutrients will return. Her growth will follow suit.

*specifically not specially

As PPs have said, she is likely to need to watch her iron levels as she goes through her life because iron is something that is hard to absorb (or coeliacs find hard to absorb, not sure which). Periods don’t help the iron levels of female coeliacs, I’m sure.

Dd was diagnosing at 16yo, she hadn’t grown at all for a least two years prior to diagnosis and then shot up 2” in a few months, maybe six months.

You will have to read every single label, not only the ones of products you assume may contain gluten.
Hams have often gluten added. And salamis. Soy sauce . Many brand of French fries. Or peanut butter (unless the 100% one) . Even some ricotta cheese.... and the list goes on and on.
Agree with PP. It is easier to have a gluten free home.