Coeliac Disease Support

[Redpostbox]

I wish CoeliacUK had a forum where we could all chat and swap tips but as they don't I thought we could start one here.
All welcome.

I have a DS age 11 with Coeliacs Disease. He was diagnosed 6 months ago on his blood test results (5400 normal range in our area

I feel for your DS. I would suggest, make the whole family GF whilst eating at home, even if it's only a temporary thing.

In that way you I'll be less likely to inadvertently gluten him.

He will hopefully feel less self-conscious and won't have to look at foods that are forbidden to him.

Also, I would forget buying most of the GF substitute foods which are mostly highly processed. Instead, build your meals around proper food that is naturally GF - neat, poultry, fish, dairy foods, vegetables, herbs, rice, fruit.

If you want to include bread, try lots of different brands to identify the best one for your family. They all taste better toasted (remember you need a separate GF toaster).

It's certainly something to come to terms with. I'm nearly 2 yrs diagnosed and I'm still learning to cope with it. I agree that it's helpful to try and do meals that are naturally GF for the whole family ie: meat, pots, veg in some shape or form. I personally prefer Sainsbury's (dried) pasta and I'd recommend trying M&S GF bread and rolls. Annoyingly I can't take them as some ingredient doesn't agree with me but it definately was the best tasting and they sometimes do 3for2 deals. Try it if you haven't already. And I've just discovered Tesco own Rice Krispies and Cornflakes are GF. Way cheaper than the brand I was buying!

They (CUK) do have a Facebook page but it can be a bit controversial at times.

Marks and Spencer's bread rolls are ok for sandwiches

Biscuits I get from Asda/ Sainsbury's

Other than that we all eat gluten free for meals by default, once you get in the swing of it it's easy enough. If you hang around the coeliac Facebook pages long enough you get a good idea of all the good subs.

Thanks. Yes I definitely should have more rice and potato meals. That's is going to be my way forward I think. I think the problem is we just used to have lots of pasta based meals before DS diagnosis, the kids love pasta! DS just hates being different now and gets upset even at home. So far I tend to cook his pasta separately then put it on other side of kitchen whilst I dish up the others in case of splashes causing cross contamination. A couple of tunes I have fished up his spaghetti, put his to the side, dishes up everyone else's spaghetti and the bolognaise sauce then realised I had forgotten DS's over the other side of the kitchen and there was no bolognaise sauce left . Spaghetti and cheese has been his meal on more than a few occasions!
I don't like the FB threads as it's not anonymous and DS still sensitive about it. Once I did post on there about him being glutened and a random friend replied saying she was sorry to hear that. I hadn't even told her about DS.

Any advice about going away on holiday? We are off to Cornwall over Easter bank holiday. Self catering. Will be our first holiday since diagnosis . We usually have fish and chips on the beach so whole family going to be disappointed we can't have that.

Ah well I just cook gluten free spaghetti for everyone, I can't tell the difference anymore.

Similarly gluten free lasagne sheets are indistinguishable from normal ones so everyone gets gluten free lasagne (I use the jarred dolmio cheese sauce to make it as its gluten free as standard)

Schar do good frozen margarita pizzas, they are currently on offer in Asda for 2 for £3.50 - we just add our own toppings.

I find eating out not too bad - trip advisor lets you search for 'gluten free' so you can find places in the area that other people have recommended for gluten free.

Lots of fish and chip shops do gluten free these days - it's worth having a google to see, and even the ones that don't tend to keep the chips separate so he might still be able to have chips.

McDonalds will do you a burger etc without the bun if he took his own bun.

Typical meals in our house are:

Spag Bol
Sausage and Mash (I use Asda own brand GF gravy)
Cottage Pie
Burger and Chips - the coeliacs have a M&S bun
Gammon and Chips
Home made potato wedges and chicken pieces (I get thighs and drumsticks and sprinkle with salt or sweet chilli sauce)
Stir fries with rice noodles or rice
Curries with rice
M&S gluten free chicken goujons (delicious!)
Pizza
Stuffed baked potatoes
Roasts - it's really easy to make GF Yorkshire puddings

Tescos finest stem ginger biscuits covered in dark chocolate and gluten free are absolutely delicious.

Hi. My 18yo is coeliac, diagnosed last year. She's now suspected to have Crohn's disease as well and waiting for a further hospital appt.

I understand the reluctance about posting on the fb groups but are you a member of coeliacs In the U.K. fb group? They're good as people post pics of new gf food they find in the shops so get some new ideas.

And I've also posted when going to a new city for the day to ask for restaurant recommendations. You could ask for places to eat near the area of Cornwall you're going to. Some chippys are good at catering for gf.

The gf is awfully expensive and not very nice. And while yes there will always be some gf food you need to get I think trying to eat stuff which is naturally gf is the way to go, rice, potatoes, etc rather than pasta. Dd is vegetarian as well just to complicate matters!

Some stuff like Lidl's own brand Pringles are gluten free without being a specific gf product if you know what I mean. Aldi and Lidl are meant to be good for their gf stuff but must admit I don't shop there much.

He is really under par at the moment with his iron levels being low - I can relate because I'm in my 40s and have been a coeliac for 20 years. Over the years I have been anaemic and needing iron supplements (at the moment, for example!) so I know how he might be feeling. Really make raising his iron levels your top priority for him. He will feel better and will be more able to cope with everything (including his diagnosis) once he's in the normal range again. It makes you physically but also emotionally drained.

Iron tablets - make sure he's not drinking tea/coffee around the time of taking them. I realise he's 11 so I'm not sure if he has these drinks anyway, but this is the standard advice so passing on. Have some vitamin C at the same time as taking them - glass of orange juice for example.

Get his iron levels checked again a month after starting them to see if there's an improvement. Take-up of iron from supplements is possible but it can sometimes take time. Also the tablets can make your tummy hurt and/or cause nausea so that's another barrier to them working - it might put him off taking them.

Dish his food up first to avoid the problem of no sauce being left for him - the iron is in that sauce (I presume) so him getting a less nutritious meal is really not an option for him (of pasta and cheese) while he's trying to increase his iron levels.

Look at dietary sources of iron - green leafy vegetables etc.

I would definitely use gluten free pasta if you can for everyone. I would disagree with not buying lots of substitutes when he is trying to get used to eating gluten free. As an 11 year old it's incredibly tough to feel different and they do fab substitutions for lots of popular things (such as Oreos, cornetto ice creams, sausage rolls etc). You should be able to buy or make a substitute for almost anything so just ask. I think one of the only things I haven't managed since diagnosis is a doughnut!

Sheldon Asda and Tesco do gluten free ring donuts and the Wheat Free Bakery (on-line) do jam donuts.

Wow thanks for the info on doughnuts! It is easier to base your diet around rice/potatoes, meat, fruit/veg but sometimes you want to live like everyone else!

Good point Sheldon. Luckily dd loves curry and chilli so guess it was easy for us as she wasn't that bothered about pasta.

I'd also recommend a Pinterest board. Loads of gluten free recipes for ideas.

Your poor DS, he will get used to it but it takes time. I have CD (diagnosed at 21) and DD has it too (diagnosed at 4), she's 8 now and there's still times when she cries because she can't eat the same as everyone else but it's rarer and rarer and for the most part she has adjusted well. I cook family dinners GF for all of us (OH and DS aren't Coeliac but they can eat GF pasta, OH doesn't mind at all now and DS doesn't know any different as he's a baby but I make sure he eats normal bread of course)

From my visits to the UK, my favourite GF bread was DS ciabatta rolls. Otherwise the bread is always better toasted - store it in the freezer and toast as used. If he takes packed lunch for school forget about sandwiches, they will be too dry and nasty to eat. Eating out is much better these days, so many restaurants do GF and chip shops often have GF days. Tesco does delicious triple chocolate cookies (my local supermarket imports them and I adore them) and Belgian chocolate wafers (drooling just thinking of them!)

Hi Redpostbox - and everyone else! I'm just starting this journey with my 10 year old DD. We are currently waiting for her EMA blood test result to come back, for a final confirmation of coeliac diagnosis. She has had 2 high ttg-iGA results and positive gene test, so we're pretty certain.

We got the first positive test just before Christmas so we've been in a kind of limbo for over 3 weeks- pretty sure what's wrong, but having to keep feeding her gluten until the consultant gives the go-ahead.

On the one hand, I just want to go GF and get her well again, but I also know that DD is going to really struggle with it. She is worrying about so many things that she won't be able to have any more.

Hi everyone, will keep an eye on this thread! Was diagnosed by biopsy just over 2 years ago after getting more and more unwell and the doctor fobbing me off. By the time I was diagnosed I was so ill I had 3 weeks in hospital. It took a long time to get my life back and I'm left with some ongoing problems, but am so much better than I was!

Because I was so ill we have a completely gluten free household. It's easier than worrying about cross contamination and having got used to swapping stuff for gf, we barely notice. DH and DD1 eat gluten out of th house but DD2 was diagnosed as gluten intolerant last summer. The blood tests didn't show up as coeliac but she was terribly ill in the 6 weeks she had to eat masses of it for the tests and gets terrible digestive issues if she has even the tiniest bit now.

I do worry that me cutting gluten out in the house for everyone kind of triggered it for her (though DH and DD1 remain fine to eat it when out and about). Don't know if anyone else has any knowledge!

Wow. Thanks so much for all the great advice I think following on from what everyone has said we will switch to GF pasta for everyone in the house. At the moment I buy giant bulk-buy bags of pasta so it's going to cost a fair bit more but it will be worth it to have I've less thing where DS feels different from everyone else in the family. It's bad enough feeling different from friends but to feel different in your own house is bad. Not sure what to do about the bread as I can't see anyone else in the house wanting GF bread in their packed lunches and I can't afford school dinners for everyone.

Music as far as I know people have the tendency for Coeliacs and then something triggers it possibly a virus. So someone can test negative but then be triggered at a later date and then become Coeliac.

Well we survived the holiday. It was good and bad but mostly good. Couldn't have the fish and chips which was upsetting. Also we struggled with ice cream. I suspect this was due to nervousness on mine and DH part not wanting him to get ill on holiday (he is ill for days). A lot of the ice cream places were just tourist shops selling postcards/rock etc and didn't have a clue if the ice cream had gluten in. Some flavours obviously did (eg cookies and cream)but I have no idea if regular ice cream has it in. Was also worried about cross contamination from the cones/scoops. We ended up traipsing round 4 different places with DS getting visibly more upset but trying to hold it together and one DD moaning and groaning about "just getting and ice cream". We did get some vanilla in a tub and he was thankfully fine.
I forgot the toaster bags too so no toast for breakfast and he has give off milk so it was fruit fit breakfast every day.
Great weather though so all in all a good holiday, I just felt very aware of how limiting Coeliac disease actually is and how everything is different now.

MrsCastle welcome to the thread. I hope your DD is doing ok. I am not sure what all your daughters blood tests are as DS was diagnosed on the basis of just one blood test. IgA I think.

Natsku thanks, will check out those recommendations!

101 thanks so much. He has had some tummy aches from the iron. It's a shame as we were having a lot of vegetarian meals (for health and environmental reasons) but I know you are right. We do need to get his iron levels up to help his tiredness, the dietician also stressed this and I think I need to have more red meat in our family meals. Dietician did stress that too.

Pasta thank you for all the advice. That's a great idea about Mc Donald's! Are the fries safe do you know?

Nico thank, I will look up that FB group. It sounds great.

Thanks so much everyone else.
Sorry if there are others I haven't mentioned - it's hard scrolling up and down in my phone!

So much fab advice though. Really helpful.

Redpostbox- I feel for you and your son. I was diagnosed at 23 so didn’t have to be different as a teenager. That must be so hard. However, you are in the very early stages at the moment. I promise it’ll become so much easier for you all. It’s second nature to me and I barely notice it nowadays. It’s a pretty good time to be diagnosed, really; there is a lot in the shops, and restaurants are very aware. When I went on holiday we did have gluten free fish and chips as there was a place that did it just after they’d changed their oil, and you just had to ring them in advance.

Good luck!

“The gluten free blogger” (I think?!) gives lots of recommendations, if you follow her on fb. I learnt about many a prepackaged sandwich from her page! They do them in Tesco, m&s, boots and Sainsbury’s as far as I know. I love the chicken and avocado one from M&S. Starbucks do a ham and cheese panini which I like, too. They toast it in its bag so as to avoid cross contamination .