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DH just been diagnosed coeliac - looking for helpful suggestions

(36 Posts)
MaryThorne Fri 29-Apr-16 19:26:48

DH has just today been diagnosed as having coeliac. I'm going through the cupboards looking for anything that has gluten in and plan to do some online research later.

Could you please share your experiences of how you went about adapting after the diagnosis of you or a family member? Any useful tips especially for eating out?
We're due to go to an outdoor event on Sunday and would have bought lunch from one of the food stalls there but that now feels a lot more complicated!

Abraid2 Fri 29-Apr-16 20:11:15

My son, 19, was unexpectedly diagnosed at Christmas and it was a shock!

When he's at home it's not a problem. We use rice, potatoes and GF bread and pasta.

He is a student, living away from home for most of the year, though. He has found that Indian restaurants are good sources of takeaways. Jacket potatoes are good,too, obviously.

The good news is that my son, who has been underweight and generally very emotionally reactive Since he was a toddler, is now getting back to full health and
putting on some muscle.

My son really likes the bread from here
wheat-freebakerydirect.co.uk

Otherwise Sainsbury and M&S are good. M&S do GF sausages which are useful.

MaryThorne Fri 29-Apr-16 21:12:17

Thanks, that's really helpful. We've got a 2 year old son so I think we'll probably need to speak to the GP about getting him tested as the NHS website recommends testing when a first degree relative has been diagnosed. I'm more nervous about the implications of managing it with a toddler!

iseenodust Fri 29-Apr-16 21:24:50

DM is coeliac but neither DB nor I are so fingers crossed for your 2 yr old. Agree M&S stuff good. DM says the GF ciabatta rolls are best bread option, but pricey.
Best tip for eating out is Toby carvery - all the meat & veg is fine & if you specify GF they'll do separate gravy.
Pizza express does a GF pizza but we're sceptical about cross contamination but maybe someone will come along who has tried.
Some chippies run a separate fryer.
Baxters tinned soup - there are a few that are GF.
DM 'risks' Bisto Best gravy which used to be labelled GF but isn't now although ingredients.

Kummerspeck Fri 29-Apr-16 21:37:28

My friend is coeliac and says her advice is not to try to replace gluten containing food like bread with processed GF alternatives but to try to make your diet around naturally GF foods (if that makes sense). So, for example, instead of replacing pasta with GF pasta she will have the sauce over shredded vegetables. She does use some GF products but thinks, for her, the key to health is not using too many and she finds lots of brilliant recipes and stuff from paleo diet sites online

Some areas prescribe a set number per month of basic GF products on the NHS (they do where my friend lives) but some areas, like where I am, do not prescribe any at all

Biggest piece of advice is to join the Coeliac Society, they are a mine of information

MaryThorne Fri 29-Apr-16 21:39:22

I'll have to have a look in our local M&S Food over the weekend and see how big a range they have there (not a huge one but hopefully big enough!).

Abraid2 Fri 29-Apr-16 21:40:26

Neither I nor my daughter are coeliac. my husband won't take the blood test but hasn't any reason to suspect he has CD. I think my son developed it following pneumonia and bronchiolitis as a toddler.

emummy Fri 29-Apr-16 21:44:05

Dd & me are coeliac, second joining coeliac uk, they are very helpful. Is your Dh seeing a dietician? Ours gave us info about the local coeliac group, which organises events and advises on restaurants. Coeliac uk has a good search facility for eating out. Indian is good as you can eat pretty much everything, Chinese is out! We cook our normal meals, just use gluten free flour, soy sauce etc and make separate pans of pasta. We find making our own bread best, and like the Glutafin bread mix in the bread maker best.
When shopping you need to look closely at ingredients, gluten is in the most surprising things! For instance, Lindt chocolate, sadly!
We find chain restaurants often best for gluten free menus, such as Ask Italian, Pizza Hut, and others.
Sainsbury's has a good gluten free range, Tesco is ok.
Good luck!

notapizzaeater Fri 29-Apr-16 21:48:18

M and s do lots if gf food.

We have "normal" hime cooked food, I cook from scratch most nights. Chilli, curries, stir fries, shepherds pie etc. DS and I like the past - DH doesn't - though he likes brown rice pasta (doves)

If yiu bake (sponge cakes are nice) then I've found the best results from Asda flour.

We get bread from wheat free bakery (link in one if the replies above)

ScouseQueen Fri 29-Apr-16 21:48:38

iseenodust I've been told that Pizza Express use GF flour as their dusting flour for everything now so that helps avoid cross contamination.

iseenodust Fri 29-Apr-16 21:51:50

Thanks Scouse that's helpful to know.

MooningIntoTheAbyss Fri 29-Apr-16 22:03:39

My mum is coeliac. I'm one of 4 kids and none of us are. However, we are in the process of diagnosing 4 yr old Dd. It's a possibility at present!

Anyway, mum gets bread/rolls/pizza bases and flour on prescription from GP.
Otherwise we buy GF pasta and (whenever I cook for her) I don't bother with packets/sachets etc, do it from scratch.

As unthread mentioned Pizza Express do GF and you will find a great many places are starting this up. My mum has no issue with any possible cross contamination here. So it will depend on your DH's sensitivity.

Oats - don't be fooled with the 'naturally gluten free' idea. The cheaper ones generally aren't. I can't recall what mum was saying entirely about this but she now buys the expensive gf ones as she was feeling ill and eats porridge every day and since changing this she is fine again.

It's hard at first but eventually it just becomes second nature.

Eating out doesn't have to be complicated, ask the waiter/waitress to ask the chef about any sauces etc as these are often thickened with flour instead of cornflour.

Most supermarkets have a 'free from' section and I know for sure Tesco has a decent range and does GF sausages.
Mum says sainsburys cakes are the nicest ones ;)

MaryThorne Fri 29-Apr-16 22:04:24

emummy DH has been referred to a dietitian but awaiting appointment. He's joined Coeliac UK so hopefully we should be able to get some useful information from them.
Is it just more straightforward if the whole household eats gluten free? The thought of having to have two toasters to avoid cross contamination seems a bind - do we need to replace the existing one?!

MooningIntoTheAbyss Fri 29-Apr-16 22:07:37

You need to assess his sensitivity before you start separating up things like toasters!

Whenever mum comes here she uses my toaster. The odd crumb isn't going to kill him!

We do simple things like
-use a spoon to get jam out of the jar instead of spreading with a knife and transferring crumbs into the jar.
- shake out the toaster every couple of days

But honestly if his sensitivity is severe then yeah, maybe switch the whole family over but it would be unlikely he is that sensitive given he's just been diagnosed later in life

MaryThorne Fri 29-Apr-16 22:11:32

It's great all the helpful advice I'm getting and much appreciated! In part I'm posting on here as DH is absorbing things in his own time and so I'm trying to avoid adding to the stress by talking about it too much. He seems to be taking it sort of in his stride but it's a lot to take in.

MaryThorne Fri 29-Apr-16 22:13:31

mooning I don't think he's that sensitive - the symptoms which led to him being diagnosed aren't that severe.

AvocadosAtLaw Fri 29-Apr-16 22:17:05

DH was diagnosed with coeliacs about a year ago; after his father was diagnosed we thought that a lot of the symptoms fitted.

I'm not going to lie - it's been hard! There have been days where OH has gone 'sod it' and eaten something containing gluten and been glued to the loo for hours. Or he'd eat something that should've been OK but it's made him ill sad.

I'd agree to be very careful with oats as we couldn't figure out why H's problems weren't improving until we twigged that the Tesco Everyday Value oats were the cause. We don't get GF food on prescription as we can afford the supermarket stuff and don't want to take unnecessarily from the NHS.

Stock cubes/pots/powder - don't be fooled into buying the specially labelled GF ones that are way more expensive. The Tesco stock pots are GF, as are Knorr.

DH hates the GF pasta so if I'm doing spag bol he'll have it over brown rice. Couscous is also not GF and the maize alternative isn't great. Most ready meals aren't GF and it's an absolute nightmare to find something to eat at smaller m'way service stations. I do lot more home cooking now than before he was diagnosed!

Lovepancakes Fri 29-Apr-16 22:17:47

Some M&s GF food is easy to miss I found at first but we now regularly look for the gf crumbed chicken as it's yummy- you can also get fish cakes , sausages etc as they often have chickpea or rice flour in.

Dd loves the Schar bread too ( we find it in Tesco & Waitrose) and it's expensive at £2.50 a small loaf but Lovely as are their sweet rolls.

This is the hard bit as you will both yet so used to it and we now don't mind remotely but that took time- and it's wonderful feeling so much better.

We also make our best pancakes by whizzing GF oats into a flour and adding eggs and milk- the whole family love them and v healthy!

MaryThorne Fri 29-Apr-16 22:36:29

Ooh, pancakes idea sounds good!

curlywurly4 Fri 29-Apr-16 23:37:11

I'm a coeliac, it came completely out of the blue as I didn't get the typical bowel symptoms. This is probably the most useful but of info you'll need.

From coeliac UK website:

‘A breadcrumb won’t hurt someone with coeliac disease’...myth
Even very small amounts of gluten can be damaging to people with coeliac disease. Therefore, taking sensible steps to avoid cross contamination with gluten is important.

Top tips include:
•keep cooking utensils separate during food preparation and cooking
•avoid frying food in the same oil that has previously been used to cook foods which contain gluten
•use a clean grill, separate toaster or toaster bags to make gluten-free toast
•use separate breadboards and wash surfaces thoroughly
•use separate condiments like jam, butter, mustard and mayonnaise.

Lots of foods are naturally GF and the range is improving all the time so it's not too bad but it's the cross contamination that makes it hard.

Gluten still damages the gut even if you don't get symptoms, so he 'lol need to be really careful.

In the early days I got glutened all the time by silly things you never think of. I shared a bowl of chips with a friend that was eating a sandwich and got ill from a tiny bits of gluten on her fingers touching the chips. Same happened with packets of crisps. DH and I now don't share drinks if he's been eating gluten.

Buffets are out unless you get first dibs, its a cross contamination nightmare.

Eating out is much easier these days and I rarely ill. You learn quite quickly who does & doesnt understand the contamination risk by asking a few questions.

I've found some friends really get it and I'll happily let them cater for me, others I know don't understand it, which is fine and I take my own food along. It's really easy to slip up in ten early days so we when totally GF for a bit but manage it no problem these days.

AcrossthePond55 Fri 29-Apr-16 23:44:50

I'm in the US so any brand-specific tips may not apply.

A good thing to remember, though, is that GF 'substitute' items generally are much higher in calories, fats, sugar and carbs than the 'regular' stuff. This is especially true for baked goods.

So just read labels carefully, not just ingredients, but calories and serving size.

curlywurly4 Fri 29-Apr-16 23:48:56

Ah yes that's very true. Much more carbs and calories. GF pasta is almost double that of wheat pasta!

ExasperatedAlmostAlways Fri 29-Apr-16 23:50:33

I was literally just coming on to post if anyone else has it as I'm getting suspicious the ibs iv been diagnosed with years ago is actually celiac so will read this with interest.

MaryThorne Sat 30-Apr-16 08:37:33

Felt a bit guilty this morning as DS and I had porridge for breakfast and DH ate fruit and yogurt (he would typically have a big bowl of cereal). I had offered to go to the supermarket last night to get GF cereal but DH didn't want a fuss which I can understand.

I'm inclined to go back to using much more rice in cooking rather than pasta which is what I was inclined to do before I met DH anyway!

Abraid2 Sat 30-Apr-16 08:44:16

We just use rice now in lots of meals. But some of the GF pasta these days is now very good and I can't tell the difference.

I also make cornbread, with maize flours, and blinis, which are, or can easily be, Gf.

The real problem for my student son tends to be lunches on the hop. He is away from university at a sports match this weekend and I have nagged him to bring a small cold box of supplies. In an unknown town, hunting down a GF sandwich in a hurry can be hard work. Worth bringing a sandwich with you just in case.

And, re the crumbs... He was really ill at university when someone in the student bar made a mistake and cross contaminated something he had ordered. There were no obvious signs of gluten on the dish, so it must have been a tiny crumb.

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