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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?

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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