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Coeliac disease and lentils and Christmas

(36 Posts)
reddwarf Tue 13-Nov-12 13:11:54

I was diagnosed in the summer.

Feel pretty down about it at the moment. All the Christmas stuff out sad feels like i can't eat hardly anything ( I am not in UK, and here there is much less availability, and much poorer labelling) it is so much better in UK.

Just wondering if anyone has any tips for my first GF Christmas?

I think I am only notnstarting to feel sensitive to things. Eg, i have terrible cramping if i drink red wine or vodka, which I never used to. It happens preety consistenly, so i have had to give these up.

Now for the last couple of days I have had similar terrible craps in my uppergut, just under my ribs, really really painful. I ate lentils and rice, and also dh made honeycombe (golden syrup, water and bicarb, packet didn't mention gluten, so assume it's ok) i had some of both on Sunday and Monday, and since then have had really painful tummy. are either honeycomb or lentils likely to cause a reaction?

Shit, i feel down about eating or drinking, feels like everything fun and nice is off limits sad

No more meals out with Dh in restaurants, no more stays in hotels, not that I did either much, but now feels like I never can again sad

Am dreading all the Christmas treaty that I'll be offered or given and can't have . Boo hoo. Sorry feel really down about it today.

I am confused about chocolate - Cadbury's dairy bars seem not to be ok. Cadbury's buttons seem to be ok - is that right?

alison222 Wed 14-Nov-12 14:36:24

Lentils can just upset some people's digestion, and so can other pulses. It may be as simple as that.
They are definitely GF though as my Ddad eats them.
Ditto I can't imagine problems with the honeycomb. I know that some baking powder is NOT GF and you need to check labels but I have never heard about this with bicarb.
It is possible to get things like GF mince pies and x-mas pud etc if you want them. Most health food shops will do them as do the large supermarkets Waitrose is good IME.
I think that the thing with chocolate is that they make lines that have biscuits in the factory and so that they are warning you about this.
It all depends on how sensitive you are to gluten. I gather that this can vary quite a lot from person to person.
You can make stuffing easily yourself using GF sausages, sage and GF bread.
HTH.

alison222 Wed 14-Nov-12 14:39:25

Also you can eat out. You just need to get the confidence to ask repeatedly about the contents of food, so meat and veg is usually ok, but you need to find out what they have thickened any sauce with. Some chips have flour on them to make them crunchy,
Puddings can be more difficult. Staff are used to being asked - we have done this in various countries with DS(allergies) and Ddad (coeliac).

Seriouslysleepdeprived Wed 14-Nov-12 18:30:29

I feel for you. I was you last year & dreaded my first GF Xmas. In some ways it wasn't as bad, in others it was worse.

I would eat at home firstly, until you know what's what, just while you get the hang of things. I tried doing parents & in laws last year. i took mountains of food with me which stressed me out. I forgot half my Xmas lunch & got glutened anyway & spend most of lunch on the loo. Was miserable & I won't do it again.

Xmas goodie wise, M&S do a few good nibbles we can still have. Their labelling is pretty clear & I've not be glutened there yet. Bacon & cheese rolls, mini pork belly, a prawn thing were all winners. I love breaded stuff & really miss it but now do my own, using polenta. It's not bad.

Mrs Crimbles do nice stuffing & yorkie puds. There are loads of GF Xmas cakes, pies, biscuits etc. dried fruit & nuts become your friend.

I had problems with wine, lactose & soy in the beginning. I couldn't eat the GF substitute food initially but after being GF for a couple of months my guy healed. I can eat it all again & drink wind no problem now. It does get better.

I felt really down after diagnosis & loath being a coeliac. i still cry in restaurants, being excluded at every social occasion is shit. Anywhere with an allergy book is generally ok. I don't take the risk in many places as have been glutened too many times, despite reassurances I can be catered for.

The positive are you eat really healthily and learn to be creative. I entertain more at home now & have learnt to become a good host.

Get in touch with coeliac uk. They will send you the book of safe foods. Really useful smile

freefrommum Wed 14-Nov-12 18:34:32

You are right about Cadbury's products, some are OK, some aren't. It's all to do with which machine they are produced on so Dairy Milk is NOT ok but Buttons are. This is why you have to read the ingredients and allergy advice on everything as there's often no logic to it plus beware that the ingredients and warnings can change so even if you've bought something before, you still have to check.

Seriouslysleepdeprived Wed 14-Nov-12 18:39:18

Sorry for the typos, stupid phone...

reddwarf Wed 14-Nov-12 19:09:09

I shouldn't moan, but with Christmas coming it has made me feel really down. I don't live in UK, so I can't just go out and buy mince pies for example. I used to make loads every year, and give some to neighbours and teachers etc. Now I can't do that. I'm bored of having to read every label. And like I said, I also feel more grumpy about it, cos in UK the labelling is generally very very clear mostly. Here it isn't and I have to squint my way through loads of ingredients. I can't buy all the usual Christmas goodies, things I looked forward to every year, all gone.

I go to friend's houses and they lay out biscuits etc and I have to say no and feel like I'm being awkward to boot sad It's like people think I'm on a fad diet. I really hate it, and feel sorry it also affects my poor, brilliant dh.

I don't know if I'll ever feel I can eat out. I've been to a cafe or restaurant a few times and there's nothing on the menu I could eat. Unless people really know, they wouldn't know about the gluten iyswim. e.g. chips. Most people would just assume chips are potato, but they have often flour , or are cooked in oil with other stuff. They won't know or understand. We used to go out maybe once a week or fortnight. Now I don't feel like I can, except when I'm in UK, which isn't so often.

And yes, I am severely annoyed about the fact I have had to give up so so so much and haven't lost any weight. Life is so unfair sad

I really feel for you reddwarf, I was diagnosed three years ago and although I've more or less got to grips with what I can eat I still occasionally get down about it. I've been feeling down today actually because people are planning Christmas meals out and I can't eat anything on the menu (i'm veggie as well so it makes it more difficult).

Is there anything online you can order? Obviously it depends where you live. Do you know people in the UK who could post GF bread/pasta/etc occasionally? There are recipes online for GF mince pies and things I'd you can get hold of different flours.

It will get easier as you get used to what you can and cannot eat. Lots of support online too.

AnaphylaxisCampaign Thu 15-Nov-12 12:26:27

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

vvviola Thu 15-Nov-12 12:35:43

reddwarf do you/can you bake? I ask because there are thousands of recipes out there for GF food. I come across them a lot when I'm looking for egg/dairy free stuff.

I didn't bake a lot until DD was diagnosed with her allergies, now I bake all the time. I'll often bring a batch of biscuits when I visit friends, looks like a gift but means there's something I can eat too grin (I'm still bf, so have to exclude them too)

It takes a while to get used to different ingredients but it gives you a bit more choice (my job next week is to make a dairy/egg free Christmas cake!)

reddwarf Fri 16-Nov-12 08:43:03

I can bake, but none of the dc like the GF stuff, so there's no point. I have tried a few different breads and also baked a few different recipes for cakes. I quite like the weird GF mashed potato one, but the dc are either no bothered or actively dislike it. I can't be bothered to bake just for myself.

I am so fed up wit it. I've been watching master chef, and I think oh that looks nice, then out of the blue a little voice shouts at me, but you can't eat that any more and I feel all disappointed all over again, even when I hadn't been thinking about it iyswim.

We had a sort of street party recently, so we all organised and all had to bring a dish. The neighbours were all offering me food and drink and every time I had to just say no. Then I felt I looked unfriendly and not joining in, and I didn't know how to handle it. I don't want to look like a spoil sport, or like I'm fussy, but then the bloke up the road offering a beer doesn't want details of my medical history. I honestly don't know how to deal with this.

- Can I fetch you a beer?
. No thanks (party popper)
- No thanks, I have Coeliac disease and can't (alright alright, I don't want the gruesome details// wtf is Coeliac diasease, queue boring description of boring condition that makes everyone think I have constant Diarrhoea).

So not the host who is offering to cook dinner for you, but another random person at a party for example, what do you say, if anything? ANd to a host or a waiter for that matter?

Do you others just go into any old restaurant and expect them, to be able to cope when there isn't anything on the menu already? Up till now I've only goine into places that say they do GF food, and in the UK. No one seems to have heard of it here, I can't even see a dietician.

Sorry, there is no answer other than get over it, is there? sad

vvviola Fri 16-Nov-12 09:33:10

Obviously I'm coming from a different perspective, with the dairy/egg allergies, but:
- would it help to phrase it as an allergy? I had a friend who travelled a lot and learnt "I have an allergy to wheat" in lots of languages (I know coeliac disease is a lot more complex than that, but it's maybe easier for some people to understand?)
- I never feel the need to go into detail with anyone. I go as far as "I/we can't eat dairy", they don't need to know medical details or that I'm only off it while I'm bf DD
- for me, I do expect cafes to be able to come up with something at meal times (snacks & cakes are trickier), and most places are really accommodating.
- I don't know where you are but here (NZ) there are loads of cafes starting to offer gluten free options, it's just a matter of searching them out (dairy & egg free is trickier!). Perhaps there might be one or two places near you that have some options - gives you a few places to start - and also some ideas for your own cooking?

shriekingnora Fri 16-Nov-12 09:56:01

Chestnut stuffing is delicious and Christmassy and GF. Could even wrap bacon round it (am getting hungry now!).

In terms of how you deal with dietary restrictions and people offering food and drink you need to say what you feel comfortable with. So an offer of a beer might be met with 'No thanks, I'm sticking to [whatever you are drinking]' and a smile. Foodwise, you can say 'I'm GF' or you can say 'I'm full' or you can say 'I'll grab something later'. Gradually the people you mix with on a regular basis are bound to get to know so it should get easier all the time.

I haven't been able to drink for medical reasons for the last six months and to start with I felt the need to explain all the time. I then realised that the easiest, quickest thing was just to say 'No thank you'. The vast majority of people won't question it beyond that. Entertain lots at home so you can be in control. Good luck, I hope things get better for you.

Screaminabdabs Fri 16-Nov-12 10:04:23

I don't know whether it might cheer you up a little bit to know that gluten is considered not ever so good for the majority of people - so we could all benefit (probably/possibly) from eating less of it. If that way of thinking becomes more widespread, then it will be easier for you to avoid gluten, in the long term.

In the meantime, thanks to others for the recommendations. smile Hope we get some more on this thread.

shriekingnora Fri 16-Nov-12 10:12:10

Also, have your own cupboard at home that is stocked up with nice things for you that none of the rest of the family are allowed to touch. As much prewrapped stuff as possible, so there's always stuff available to chuck in your bag when you're going out.

reddwarf Fri 16-Nov-12 10:17:27

I've just said no thanks so far, but I think it makes me look rude and weird. At that party with the neighbours the same person kept offering me (during the course of the evening, not just throwing a huge list of alternatives, determined to get me to take something) but I just had to keep saying no thank you over and over and I could tell he was getting curious and a bit fed up, so the last offer I said I can't and he started asking why not, then stopped himself and said nop, don't bother, I don't want to know. I felt like an idiot .

I'll look out for chestnut stuffing - never had it.

I am lucky in that my dh is very supportive and very careful.

Ds is a vegetarian, and that complicates some things, in that eg I have found GF gravy, and vege gravy, but not vege GF gravy, though I'm sure it must exist. Can anyone recommend a brand?

Like I said, it is so much easier in the UK, it makes me want to move back. I just don't think it's heard of here hardly at all, and I only know 1 restaurant (pizzeria) I can eat in.

thanks for tips and condolencessmile

Weirdly, I never had any obvious symptoms before dx, but now in the last week I have had 2 bouts of v painful tummy ache, the first after the lentils, (lasting 3 days) and then yesterday after chocolate (which I thought was ok) God I hope I don't have to avaoid chocolate too. feels like I was being punished for having a treat (a bar of white chocolate for my tea, as I couldn't be bothered to cook after getting in from an evening course at 8.30). Guess I need to look after myself better. Would rather not have to eat at all tbh.

Bisto roast onion gravy granules are veggie and GF, that's what I use. After I was diagnosed my stomach seemed more sensitive to some foods but since being GF for three years it's been much better, maybe your intestines are more sensitive while they're repairing themselves and hopefully it'll settle down.

When people offer me things I can't eat I either just say no thanks or occasionally say i'm allergic to them which people seem to accept. If it's people I know then I just explain what coeliac disease is and they get used to not offering me things, or for example offering me wine instead of beer, etc. I know how hard it is but it will get easier.

Where do you live? You may still be able to sign up to coeliac society even if not in the UK. They have a database of all foods/brands you can or can't eat and also have lists of GF friendly restaurants.

shriekingnora Fri 16-Nov-12 10:51:28

Freezing stuff in portion sizes may help too. When you get in tired and hungry you will have a selection of safe 'ready meals'. It might make you feel better to talk to you neighbour and say 'I've recently been diagnosed with a severe allergy and I didn't know how to tell you,. Sorry if I seemed rude!'

Dolallytats Fri 16-Nov-12 11:22:49

There are loads of gluten free cookbooks available (Phil Vickery does a lot) and I also found a website called bakedtotaste.co.uk that sells gluten free Christmas goodies.

alison222 Fri 16-Nov-12 14:16:51

I made Veggie GF gravy using a vegetable stock cube, onion, Cross and Blackwell gravy browning and thickening with cornflour.

You haven't said where in the world you are so we can gauge the sort of foodstuff available to make alternative suggestions.

Depending on what you want to make use GF flour, or use maize flour (coarser than cornflour), potato flour rice flour and combinations. Gram flour ( ground chickpeas) can also be useful.

To make pastry we use GF bread flour ( if fact we use this most of the time for everything), xanthum gum and an egg to help bind it. It is VERY crumbly but can be pieced together with patience and care.

You can make Yorkshire puddings using the bread flour. Make the mix very thin and leave to stand for at least an hour. It will thicken up - then give it a quick beat before cooking.

CouthyMowEatingBraiiiiinz Mon 19-Nov-12 20:00:09

Some bicarb DOES have gluten in. I don't know what to suggest if you are not UK based, if you were I would suggest Dove's farm bicarb.

Some people react to traces that are smaller than the minimum amount for EU labelling when it comes to gluten.

BarbarianMum Thu 22-Nov-12 12:42:19

Can I fetch you a beer?
No thanks - do you have any wine/gin/vodka/whisky etc etc??

^^That. No need to be more miserable than you need to be smile

becstargazeypie Thu 22-Nov-12 12:58:00

I'm coeliac. For Christmas lunch we're having turkey, homemade GF stuffing (lots of GF sausagemeat, crushed mixed nuts smashed with a rolling pin, finely chopped apricots, fresh thyme leaves - mix it up and bake in oven), gf sausages wrapped in streaky bacon, sprouts, carrots, roast and mashed potatoes, homemade gravy (that's the best way of ensuring gravy is GF - I don't buy granules any more, more trouble than they're worth if I get glutened!). My Christmassy snacks are mixed nuts and dried fruit, satsumas, and home-made Christmas cake. I was diagnosed about 10 years ago and don't miss it at all now or feel jealous of people who can eat it - everyone has something to cope with in life, and in the scheme of things coeliac isn't so bad.

But the stomach upsets you've got don't sound right - none of those things contain gluten. Are you 100% sure of your diagnosis? How were you tested?

reddwarf Thu 22-Nov-12 12:58:42

Can't drink wine, or any of the things you mentioned but thanks for the constructive suggestion.

Christ, plenty of people on here are so effing mardy about having to go on a diet for a couple of weeks, and invariably give in or "cheat" I'm having to give up pretty much everything that I like, for the rest of my life, so I do feel pretty miserable about it.

Still, the one thing that really makes it easier is how understanding everyone is.

shriekingnora Thu 22-Nov-12 13:33:48

reddwarf - since I last posted I have been told that I would 'probably be better off never drinking again' (some people with my condition can tolerate a little alcohol, some none and some a bit, but it can change on each occasion). Nowhere near as bad as your restrictions but I do feel a little of your pain. Currently all I can see is a lifetime of trying to avoid having to explain why. And DH is a big drinker and we own a brewery. So much of our work involves socialising around alcohol (not necessarily to excess but tastings and beer festivals etc).

I think it is totally understandable to be pissed off - your whole life has changed. I am sure that with time you will adjust and find ways of dealing with it. But for now, rant away!

Hi,
I feel for you and understand as was diagnosed coeliac myself just last week and the gluten free diet has yet to take effect (won't share details!). I am fortunate as in UK and have the full range of supermarkets near by offering GF alternatives to pretty much everything and am currently feeling fairly positive. Sorry...that is not much help to you, I realise!

What I was wondering is if you had any family/friends in the UK who could get a Christmas food parcel to you? Ocado do GF mince pies, M&S do Christmas cake, etc. Obviously depending on where in the world you are, could any of these companies deliver to you even? Company called Amy's kitchen look good too and as a smallish company (I think) maybe they would consider worldwide shipping?

Sorry for rambling on...sure I have not suggested anything you have not thought of yourself after all!

It sounds to me like you aren't feeling better for going gluten free, which must make it em really hard- most of us might feel frustrated, but at least we aren't having cramps/ wind/ diarrhoea any more. I agree with becs though that you shouldn't be reacting to white choc. Can you give us any more info about your symptoms/ diagnoses?

DottyDot Thu 22-Nov-12 17:58:46

Hi there

I was diagnosed 6 years ago and can well remember feeling very down about it for a long time - it's not easy having to accept that you just can't have certain foods. I remember walking down the cereals aisle at Tesco crying... blush

however, Christmas is hopefully fairly straightforward. Roast whatever with lots of roast veggies - all gluten-free! Yes to Bisto veggie gravy and/or Kallo stock cubes if you want to make your own. Don't forget you can use cornflour to thicken.

Wine and vodka should be absolutely fine - maybe you just need to practice..?!

If you've had pain just under your ribs, you might want to check you haven't got gallstones? I've just had my gallbladder out and the pain from gallstones is terrible.

christmas afters is a bit more tricky - I always have a gluten-free trifle - so make some gluten-free sponge (using Doves Farm g-f flour), then everything else in the trifle is fine. I never liked Christmas pud or mince pies anyway, but dp makes lovely gluten-free mince pies so I know that's possible!

nibbles can be tricky but nuts are fine and you can usually find tortilla crisps that are g-f, as well as chocolate - but yes you have to be careful on that one.

It's a pain having to double check everything but try not to let it impede going on nights out or round to people for a meal - your friends will do their best to accommodate you I'm sure, as long as you explain what you can/can't have.

good luck and keep posting - it really is such a shock at first so I feel for you.

reddwarf Thu 22-Nov-12 19:01:03

Thanks all of you. I don't feel so down about it today, and am flying to u k next week so will try to stock up. There are some shops here that sell gf, but none of my usual Christmas stuff like christas pix, but it not in the supermarkets and not nearly as much in uk, I have to really hung it out. The vegetarian stuff here is also crap so will stock up ondomething nice for ds for Christmas dinner.

I had 2 very high blood tests followed by biopsy, results abdolutely no doubt. The pain I haven't had since I posted as I have been careful. But any alcohol leaves me with churning gurgling angry uncomfortable keeping me awake tummy all night, so it is just it worth it.

I feel worse ( pissed off wise) now than when I was dx. When my dh (who has been AMAZING) or dc offer me something I can't eat I can't explain the sense of loss , it's weird, like I am no longer me.

And the worst thing is, how come, after giving up every bloody food and drink pleasure known to man (so it feels) I have not lost any weight. It defies logic and doesn't help me feel oh wl, there's at least a positive side to this shit. But no. There is none.

And yes, I was symptom free before dx, so don't physically feel any benefit, though I'm sure my innards are thanking me..

Anyway, I am cheering up. Thanks guys.

Question re holidays. Am i doomed to a life of sf catering, or is hotel stay possible, realistic and safe? )I don't trust eating out except in restaurants that specify gf?)

DottyDot Thu 22-Nov-12 19:49:41

Glad you're feeling a bit better today! I have to stay in hotels for work from time to time and I always take my doves farm g-f cornflakes with me - I have no shame in taking the box down in the morning! With posh hotels you can then have yoghurt, cheeses, fruit and even some of the cooked - bacon, egg, mushrooms. (Yum!). Some hotels stock gluten-free bread and if you ring them in advance they will get some in for you.

Preparation is the key! If we're going away anywhere i(self catering) I take my own cornflakes, a bag of pasta and a packet of biscuits - so wherever I am I know I won't starve..! grin

DottyDot Thu 22-Nov-12 19:51:46

And yes, gluten-free doesn't = fat free - in fact a lot of the g-f food is higher in fat so where you can eat something different it's probably better to. I didn't lose any weight at all when I was diagnosed, but have worked fairly hard over the past year to lose weight by eating a low fat diet.

It's never easy is it..?!

reddwarf Fri 23-Nov-12 07:42:52

Due to the (almost total) lack of GF food here, I very rarely have GF replacement food. I am still half way through the only loaf of GF bread I have bought since dx in the summer, and have only had 1 packet of GF pasta, so I'm not eating that much processed stuff at all. In fact eating less overall than i used to (becaue i can't) yet still no weight loss. It must be the sugar. I don't even like chocolate that much but have definitely eaten more of that, but tbh the thought of giving something else up on top of everything else is too much for me.

becstargazeypie Fri 23-Nov-12 11:06:26

I lose weight very quickly if I eat gluten due to malabsorption, and regain it when I'm gluten free. I get a bit snippy when people assume I'm 'really' avoiding wheat so that I'll lose weight and just making up an allergy... It's amazing how judgemental and 'self appointed expert' people can be about food allergies. And actually if I had a biscuit I'd lose a couple of stone very quickly (I'm not overweight, so losing a couple of stone quickly is NOT a good thing! In fact last time it happened I ended up with viral meningitis because my immune system just wasn't working properly...).

Anyway, that might be why you're not losing weight ie you're starting to absorb the food you eat. Which is a good thing for your health, if not your waistline. Are you keeping a food diary? Since you're still getting reactions it might be worthwhile. Incidentally I used to be dairy intolerant but now as long as I haven't had gluten I can tolerate it fine - so it might be that once you've been gluten free for a while you find you don't react as much to other foods. Hope so for your sake.

For keeping my weight steady I stick to a paleo diet because that's naturally gluten free anyway, and there are lots of nice recipes on the web for paleo meals.

reddwarf Tue 27-Nov-12 11:41:36

Thanks. he gall bladder suggestion makes sence, but anyway, you made me think and realise I should get it checked, so I went to the doctor this morning. He did and ultrasound of my abdomen and said he couldn't see any sign of gall stones and everything seems to be in order, but he also took blood. To be honest, it's now worried me that soemthing more serious might be wrong (my mil had her gall bladder out, and went on to develop cancer of her abdomen lining (peritoneum). Not a blood relative, but it's really made me worry.

I was the only member of my family who never got ill, I was always looking after them. Now since my dx in the summer I have felt like crap and feel like I'm never out of the doctors sad I'm going tomorrow to try and sort out my allergies that I've out of the blue developed, and go back on Thursday for blood test results. At least I am coming to UK on Thursday, so that will distract me hopefully.

mrsmellow Mon 03-Dec-12 13:30:43

Hey, my mum and best friend are coeliac and you have my absolute sympathy. Works well for best friend because my Mum was an amazing cook and I've learnt to cook everything without flour and am hyper about checking ingredients! You're probably not losing weight because you're no longer burning energy through being over-inflammatory - your immune system would have been working overtime trying to rid your body of what it saw as an enemy - which increases your metabolism -and if you're gut is healing, your absorption of food may have improved. Weight loss can be a presenting complaint of coeliac disease too. Don't lose heart - as you come to terms with it and everything settles down your weight will too. I think the pain you had before sounds like irritable bowel syndrome (IBS) - which it wouldn't be unreasonable for your gut to have weird reactions to things since its been under such pressure for a while - that should settle down too. It might be worth eating some natural yoghurt with live culture in it to try and balance your intestines, that really helps some people. Good luck getting some delicious GF food on your UK trip to have over Christmas and for your blood test results.

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