Newly diagnosed coeliac - what do I need to know?

[PoorlyDS]

Google is a minefield. DS was on hospital (earlier thread ) with suspected appendicitis and bowel infection but got better and came home. Then bloods follow up showed coeliac. It was positive on a retest and although we are waiting on a genetic test to confirm , we are 99% sure it'll be the same diagnosis.
Aside from my feelings of guilt and upset for him and plundering the GF aisle , I'm feeling overwhelmed and so so sorry for him.
I need practical tips - I cook so meals will be fine I think but what have I not thought about? Sauces like mayonnaise? Ketchup? I use marigold bouillon which I think is ok and aim to perfect my GF cakes as I am a decent baker but practical stuff? New toaster? His own fridge shelf ? Maybe we all go GF?
My poor boy. I know it could be far worse but it is life changing so be kind please. Give me your tips/ resources/ Facebook groups ? Thank you 🙏

Tbf, for 'bacon bits', read, 'season, slow cook and finely chop cheap bacon offcuts'. This would apply whether I was catering gf or not. Likewise dried and/or caramelized onions.

Coeliacs in the family.
Drink cider instead of beer.
Quality street boxes of sweets are GF
Watch out for shop bought gravy
Take stuff with him if staying over at a friend's house/ going camping etc
In lreland you can claim a certain amount per month against tax to cover some of the extra expense..not sure about UK. Do it once a year..
Here also we have Mc Cambridge brown bread GF and its very popular in family ..May be available there.
Watch out for stuffing in chicken.
He will get used to it and the fact that he will have more energy and feel better will encourage him to keep going.

I was diagnosed with coeliac disease about 4 years ago in my early 40s.
I don’t find it too bad?
yes I miss French bread and croissants (substitutes aren’t quite the same!) but I’m not defined my coeliac disease or anything, I still eat out loads, buy my lunches most days in pret/ Boots/ M&S etc,. Four others in my house, none of them are GF. I have a separate toaster for me, and mostly cook stuff that we can all eat (loads of food is naturally GF anyway), but if I’m cooking pasta/ pizza whatever I just do mine separately. I am used to reading labels now, lots of stuff doesn’t have gluten in- just need to check the label.
It was a bit of a pain at first but I quickly got used to it. As lots of others have said, Becky Excell books and Facebook pages are good plus various other Facebook groups like Coeliacs in the UK, coeliacs eat out Too, Coeliacs eat out abroad etc. good luck OP!

Ah I was thinking of these sort of 'bacon' sprinkles https://www.tesco.com/groceries/en-GB/products/280448261?preservedReferrer=www.google.com/

Ah I was thinking of these sort of 'bacon' sprinkles www.tesco.com/groceries/en-GB/products/280448261?preservedReferrer=www.google.com/

Got it; yeah, all those super processed products are high risk!

I think I have actually eaten better if I'm honest since I had to go gluten free- I don't think I'm coeliac as I never had stomach issues but post covid I noticed my nasty neuro long covid stuff calmed down somewhat if I avoided gluten . I was also diagnosed pre diabetic so that changed things too.

It's made me up my fruit and veg intake, only eat whole grain rice and GF wholegrain pasta , cut down on bread a lot as most GF bread isn't great, not been eating cakes and a very very occasional GF biscuit (these are very good) and I've cooked more. M&S range is good - the GF fish fingers are better than the non GF ones!! I've eaten a lot more tinned fish too as it's an easy one to stick on salad and more omelettes.

I ate far too many toasted sandwiches and pies and quiches anyway!

Sorry I’ve been away. Yes plastic. Nothing that can harbour contamination. I scrub anything I will use to cook for them directly before I use it, but you’ll need more of a system in your own house, I guess.

Just a little update to say we are nearly a week into our GF eating and last night he hugged me (rare for this particular teen) and said "do you know ? I think I'm feeling better. I've got way more energy and don't have stomach ache every day any more"
He was pretty symptom free until he ended up in hospital with fever/ stomach ache but I just wonder if he's been feeling poorly for ages.
I'm gutted he's got his GCSEs now as I think he could've done way better if he'd been well

My dh was diagnosed following our dd's diagnosis. He was quite shocked as 'he didn't feel unwell' and said he was fine. But 3 months later he acknowledged that he did in fact feel much better - had much more energy, had few colds etc and didn't feel so run down. He just hadn't realised he felt unwell until he felt better! It is worth getting the rest of the family checked 🙂

I thought iron was the huge issue, too. I once sat next to 2 coeliacs at a public event, most of their convo was about their iron deficiency.

Since I went gluten free I've never had any issues with my iron levels. I spent my teens with low level anaemia, on iron tablets that seemed to do nothing, investigations for heavy periods, dizziness etc. Within 6 months of going gluten free all my anaemia issues disappeared.

We got a dietitian an appointment through but it's same day as a GCSE! Guess we'll have to wait and see what they say eventually

How are you getting on OP? My 14 year old DD was diagnosed a few months ago, she’d been unwell for about a year til we worked out what it was (extreme exhaustion, vomiting, lots of loo trips, weird rashes etc) She's loads better now in terms of her health and energy but still struggles with all the stuff she cant have and her friends can (especially in places like costa etc) She also won't eat fish or meat so it's quite limiting.
I feel so sorry for her. i also hate the fact our shopping bill has gone up so much 😭

In Spain, the Canary Isles etc you can use the self service screens to specify a gf burger in the customise section. When it comes it will have a gf label on it.

Also the Mercadona supermarket has many own brand products clearly marked gluten free, ( sin gluten), CEO has a coeliac daughter. The rosemary crackers are particularly good with Philadelphia cream cheese. They are in and amongst the other products rather than in a free from ghetto.

Someone I know wrote a book called Coeliac Disease in plain English, it's available on Amazon, might be helpful for you!

You soon get a feeling for whether a place knows what they are talking about. Eg if you ask if their chips are GF and they check the bag vs they tell you that they have a separate fryer etc. I spotted an incorrectly labelled pizza recently because it looked too 'rustic' and was proved right. It will become second nature before too long - be bold when you speak to staff etc and teach your son how to advocate for himself.

Just had a lightbulb moment reading this @Unexpecteddrivinginstructor .

I was diagnosed just before Christmas. I’ve always eaten well (lots!) but never really been overweight.

in the last couple of months I’ve suddenly started putting on weight and couldn’t understand why - especially as I no longer eat bread/cakes/biscuits. I don’t like the GF breads, not fussed about cake anyway and have discovered I can’t really tolerate GF oats - so that’s biscuits out.

But reading your post made me think that going GF since Christmas has allowed my gut to recover enough to absorb the food I am eating more efficiently.

Smaller portions from now on…

And all those years I was eating lots but clearly not absorbing properly. Who knew.

Following this as my daughter has also just been diagnosed. Some great helpful tips on here. Thank you,

Puzzled mother here, DD has been diagnosed with Coeliac just yesterday. She is 37, has Down Syndrome cardiac pacemaker and bronchiectasis and is on permanent antibiotics. She has no abdominal problems except constipation ?probably due to hypothyroidism which she needs laxatives daily.
It was discovered by routine blood test her vitamin B12 was very low and has had a course of injections and is now taking it orally.
How can she have CD with no gut problems!! Hope I haven’t bored you to death but could do with some advice.

Some people are what's called 'silent coeliac' and have no obvious symptoms, but will still sustain internal damage, malabsorption etc.

Coeliac UK is a great resource.

We are doing ok thanks. He's been got by gluten a few times - for example he got subway GF bread but didn't check the filling (chicken tikka). He had roast potatoes at school that were next to gravy and gravy had it in
Overall he said he's more energy. I've been more affected by it than I realised as I dreamed he'd started throwing up again (how this all started ) and I spring awake and was so so upset and then realised I was dreaming.
We have dietician appointment soon so im keen to get their take on it and if he needs supplements etc

@PoorlyDS Gravy is an easy one to get caught out on- when we've been out for the odd Sunday lunch I take my tub of Marigold granules and get them to make me some!!

He's very tired this week but this could be due to exams. I can't stop worrying though
Currently making more cakes as I simply can't afford to buy the ready made and he's starving all the tier