not yet diagnosed but all the symtoms

hi not yet got the title of of being diagnosed with coeliac but tomorrow with my consultant I think this will happen,, been doing ok with the gluten free except for my iron bloods and b12,, b12s injection for the rest of my life, folic acid tablets im on again for the 2nd time and now ferrous sulphate another words being totally battered. I have tho found a nice bread, Tesco free from baguettes,, slightly toasted and buttered are really nice, I take them round to the butty shop for my dinners and they do this for me but with added bacon and poached egg, still struggling with what to eat for a quick dinner and if im not prepared then I end up having nothing. have lost over a stone in weight and getting stick off work colleagues and family so much help needed in that department please

16 Replies

  • Hi tetloww

    It sounds like you've got a big day tomorrow! What happens with the consultant will depend on how your gluten challenge went. I am presuming that you have tested positive for coeliac disease via a blood test and have now probably already undergone the endoscopy before you gave up eating gluten? So I really hope you get the answers you are looking for tomorrow.

    One thing to bear in mind is that you can have a sensitivity to eating gluten without being a coeliac. I mention it because the medical community can be a bit hazy about this fact at times and I think it's caused confusion in the past about whether gluten should be included in ones diet. It's a condition currently known as non-coeliac gluten sensitivity (or NCGS for short).

    However to get back onto the questions you are asking; firstly you must remember that going gluten-free is a major lifestyle change - which needless to say you are now discovering! It isn't just about the food, it affects your relationships as well, especially in the beginning. It can be quite worrying and isolating to start with. The good news is though (and I speak from personal experience here), is that it gets easier as time goes by. You learn new coping strategies - and friends + family do adapt to your new lifestyle; especially if you remain consistent and patient with them. I would suggest ridding yourself of the ones that don't respect your needs, because if they don't care enough about you to make changes, then they probably weren't your friends in the first place. Alternatively these are the kind that you arrange to go to the pub with rather than out for a meal. Remember to order the GF beers if you do!

    Btw, please only give your gluten-free bread to a butty shop that can guarantee no cross contamination issues with gluten breads: ie the use of a separate toaster or the use of a fresh toaster bag every time. If they are super careful then you may be able to get away with placing your food on a large piece of foil under the grill. Does your existing place have this knowledge? If they don't, then it might be time for you to have a rethink - sorry!

    I got around the lunch at the desk issue by eating gluten-free crackers most lunchtimes. I was lucky and had access to a fridge, which enabled me to keep a pot of my own (highly guarded!) butter on standby so that I could make them up fresh as the need (and hunger) took me. Soggy crackers = not nice IMO. What went with them depended on my mood - cheese, vege pâté, tomato etc, followed by a yoghurt. Unfortunately I have since discovered I am also dairy intolerant, so have had to quit eating the cheese and yoghurts

  • Hi there, what is a toaster bag & where could I get them? They sound great.

  • It's a pouch you put your bread inside and then slide into the toaster as normal. My toaster at home is 100% GF so I only use them occasionally, like when on holidays etc. The last ones I purchased came from Aldi. That was last year - so you'd have to check if they still stocked them.

  • Thank you. I will look out for them. X

  • Tesco sell free from baguettes they are only small. But the are the nicest iv found so far. I find gluten free bread very dry to eat. But if u toast them first and butter them they are really nice. Iv I'm having a cold sandwich I let them cool after toasting. The butty shop has been great and give me feedback when the are making up my sandwich haha and they say this is the best one yet

  • Hi

    Sorry the first message got a bit too long so here's part two...

    If you can handle dairy okay, I think that Waitrose do a range of cuppa soups that are gluten free in their normal soups. You would have to check the ingredients out for yourself because it's been awhile since I've had any (they all contain milk!). Nowadays if I want a cuppa soup as a change then Orgran tomato soup is my 'go to' brand (But they're rather expensive tho!).

    About a year ago we had a thread running on the forum that said: you know you're a coeliac/NCGS when... And my favourite answer was: when you're the only one eating out of your handbag at a party. I've found it's pretty much the same in most work situations. If you're really struggling for food during the day then the easiest fallback option is any kind of fruit - sometimes even cornershops will sell a banana or two. However better than that is to get into the habit of having a supply of bits in the handbag/man bag. One of my favourites is 9bars. They're very portable and can stand a lot of squishing! Bags of nuts and dried fruit are also very durable!

    For my main meal I often like to have GF pasta. If I'm feeling lazy then a microwaved jacket potato with Heinz beans is quite satisfying. I also love to do myself an omelette - they are so quick to make. Lately I've been enjoying GF cheese on toast ( with vegan cheese). There are loads of food options, it's just about working out which ones suit you.

    Best of luck.

  • Sainsburys do a dairy free tomato cup a soup :)

  • That's very interesting - thanks!

  • If you do get a positive result and you are a coeliac, it's not the end of the world. My advice is to join coeliac society,they give great advice and support and then ask for gf prescription from your Dr. Great bread and flour from Juvela .

    All the best

  • Hi tetloww, some very good advice here from Regalbirdy and I think she should call herself Wisebirdy!

    Now what you have to do is focus on what you can eat and from where.

    I would do is a web search for gluten free in your area and I think you'll be pleasantly surprised.

    I would also contact the customer service dept of your local and favourite supermarkets as they have a list of their gf foods.

    If you want a soup for lunch the Heinz squeeze and serve tomato soup is gf these are just a condensed soup so you just add boiling water.

    One of my friends bought me a pack of Tesco's gf hot cross buns and I enjoyed them.

    I like to cycle to keep fit and for fresh air and I often go on a 35 mile round trip and stop at a cafe that has many visitors and caters for coeliac as they have a gf menu they serve gf bread rolls so you can have a gf bacon roll they also sell a range of gf cakes including some that are bought in that are made by a speciality gf cake co. And these cakes are amazing and I've tried the apple pie cake, carrot cake, chocolate cake and lemon cake all are delicious, the slices of lemon cake are huge and the lady who serves there said to me that there's more fat on a butchers pencil so I obviously burn off the calories!

    So if I can find a cafe like this then hopefully others can too so it is in your best interests to check out what's out there in your area as well as the supermarkets.

    Thats my 2p's worth and good luck,


  • Hi; Just wondering if you would be interested in ready meals by 'Ilumi' they have lots of offers on most of the time. They are a god send and G/F, nut free, wheat free, dairy free, they do a wide range of cuisines and are affordable as well, you just microwave for a few minutes and hey presto!!. Heinz tomato soup is GF and cheap too! I use Genius brown seeded rolls and Tesco free from white rolls plus lacto free products which don't cause me any problems at all. I eat fresh produce for my main meals most of the time, lots of fruit and veg too! I don't buy frozen ready meals as they don't appeal to me at all. I take calcium & vitamin d soluble tablets x2 daily. So far so good x My main issue is eating out which I avoid like the plague, to many bad experiences for me!! I haven't lost weight or been ill since. Good luck!!! with your results. x

  • I buy in bulk from Ilumi too, they have lots of good offers once you become a customer. Genius bread is great too, especially for sandwiches, but unfortunately they sometimes have issues with air bubbles in the large brown loaf and £3 is a lot to pay for something that is hollow and pretty useless :-(

  • Ps Poundland usually have toaster bags :-)

  • Such great advice and really positive attitudes - thank you - as when we all think we are struggling (and aching) alone -- even after 6 years of trying to eat GF - I've learnt a lot myself just reading today (and every time) - good luck to all the newcomers and don't stop posting info please to you wise owls - love this site - it changed my life!!

  • Well. Seen consultant. And have 2 choice with regards to coeliac 1 only presume that it is coeliac and continue what I'm doing or 2 start eating wheat and gluten for 1/2 months to see if we get a diagnosis ( my choice) the other problem with my bloods is that he now need to rule out inflammatory bowel disease so another colonoscopy for my with biopsy as they didn't take them before and he is going into my small bowel for the biopsy GREAT!!!! NOT!!! Also booked for a ct scan too. Crones disease runs in our family too. Not a happy bunny. 2 n half years in and still no proper answer

  • I struggle with anaemia so regularly start my regime of Chicken livers in salad, slop in some chickpeas and watercress, nuts, olives. Get Juvela cereal flakes (not fibre) - it has 50% of daily iron. Bung in some dried fruit (extra iron) and it's edible!

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