Any Celiacs?

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  • Any Celiacs?
  • Premier Icon Pik n Mix
    Subscriber

    I have recently round out that i suffer with this, It has ultimately ruined my world as I love cooking and food.

    I have desperately been trying to be gluten free for several months, however still getting caught out by the hidden ones!

    Anyway, any real world advice?

    sorry to be a bit dads.net

    edlong
    Member

    My sister-in-law is coeliac. About the only advice I can offer is on the spelling though.

    Oh, and prescriptions, believe it or not I think she gets loaves of bread on prescription, which given the extortionate cost of gluten-free in the shops, isn’t quite as daft as it sounds.

    Dove Farm gluten free flour is, I think, her preferred for baking, if that helps.

    Premier Icon euain
    Subscriber

    My missus is – discovered 3 or 4 years ago.

    Are you a member of Coeliac UK etc. – they have lists of safe foods etc. Sometimes one brand of something is OK, another not (brown sauce, corn flakes etc).

    We’ve found that cooking from home is not too much affected – you have to be careful but it’s not really that restrictive. Loads of cook books etc – and a lot of stuff can be altered to use equivalent GF ingredients. Unless it’s something that relies on gluten’s springyness (bread, for example), it’s often hard to tell the difference between GF and not. It can take a bit of experimenting to get things right – but it’s possible!

    Eating out is a pain though – but it’s getting a lot better. Some restaurants – and more and more chains – have GF menus.

    We’ve recently found out that a lot of M&S food is GF – sausages, burgers etc. which is very handy. 🙂

    flip
    Member

    My Mrs is too, have you been diagnosed by test? if so you can get prescriptions.

    To be honest it’s a nightmare, my wife usually carries her own food to parties etc. But it is getting better when eating out.

    Carluccios and Zizzi have gluten free menus.

    Home cooking is the way forward 😉

    atlaz
    Member

    Got a couple of friends the same way. In London they have no problem providing they check ahead but it certainly seems to be a case of managing it when they go out. At home, they seem to be totally fine with the replacements.

    believe it or not I think she gets loaves of bread on prescription, which given the extortionate cost of gluten-free in the shops, isn’t quite as daft as it sounds.

    Surely not? Is bread a requirement to avoid dying now given the fact there’s plenty of food in supermarkets etc that isn;t going to cause a problem

    missnotax
    Member

    An ex of mine was a coeliac – agree that home cooking is the way forward, and also being armed with the coeliac uk lists. On the cooking front gluten free flour doesn’t rise as well as normal stuff, but with a bit of trial and error everything is possible 🙂

    Premier Icon Pik n Mix
    Subscriber

    My bad for the spelling (if you knew he state of me right now you would be impressed I can even type let alone spell!)

    I am avoiding everything that’s pretending its a gluten product ie. bread, as its such an inferior product.
    I will experiment with home baking after I graduate and have more time.

    At the moment I have a rice cake and jam.. thats it. my energy’s gone my enjoyments gone every things gone:(

    Premier Icon Northwind
    Subscriber

    It’s a right pain in the bum. Good support helps… If you like cooking, that’s good though as it gives you the main tool you need to have an interesting and quality diet.

    See if you can find out where you stand on oats- traditionally coeliacs were told to remove them, but current opinion is that avenin-intolerance is commonly found in coeliacs but isn’t actually part of the condition (oh, and unfortunately also that oats are often crosscontaminated with wheat, but gluten-free oats are available).

    There are some very good “substitutes”- Yes You Can brown bread, and genius seeded loafs, are both good and available in Tesco. (all the Genius stuff is at least tolerable, all the Warburtons bread stuff is dismal) Dove Farm pasta is almost indistinguishable from the real thing when eaten hot.

    (I really mean it about the pasta- that makes a bif difference to me, it’s such a staple)

    I bake my own bread- using Gluafin’s Select multipurpose flour, which I get on prescription. It’s also easy to use in other recipes. It’s not strictly gluten-free but it’s coeliac-approved “Codex Alimentarius” (*).

    There’s compromises you can usefully make… Shop-bought stuff tends to want to look, store and feel like real food, which means it doesn’t always taste like real food. With my bread, I tweaked the recipe so that it doesn’t store well and it feels more spongy than it might, but it tastes more or less like bread.

    (* Or, as I call it, Codex Glutanicus as it sounds like an old Games Workshop book with giant space-wheat-monsters)

    edlong
    Member

    At the moment I have a rice cake and jam.. thats it. my energy’s gone my enjoyments gone every things gone:(

    …including the apostrophe key it would appear. Sorry, couldn’t resist.

    It will get better. s-i-l went through similar but look at it as progress: something was wrong with you, you didn’t know what it was, now you do know and can do something about it. You’ll keep making adjustments, learning new recipes and what works and doesn’t work for you. If you’re currently on rice cakes and jam, then just think of the wonderful, enriching journey of culinary discovery you are about to embark on. Although the gluten free bread stuff is shit, I’ll grant you that.

    poly
    Member

    My bad for the spelling (if you knew he state of me right now you would be impressed I can even type let alone spell!)

    I am avoiding everything that’s pretending its a gluten product ie. bread, as its such an inferior product.
    I will experiment with home baking after I graduate and have more time.

    At the moment I have a rice cake and jam.. thats it. my energy’s gone my enjoyments gone every things gone:(
    Mrs Poly, and her dad are both Coeliac.
    You are right that most “GF” stuff is dreadful, but there are some things which are OK: (1) Most pasta; (2) Pizzahut just started doing GF pizza which is really not bad; Dominos now also do a GF pizza which is OK but not as good a Pizzahuts; (3) The Genius breads are better than most. I believe the warburtons stuff is OK too; (4) GF pitta is not that different from the real thing; Nan bread is not like the real stuff but not too bad. (5) Most indian food is fine; (6) a lot of chinese food is ok (even some battered stuff is OK as they use potato starch for some things rather than flour) – our local chinese will even do stuff specially in the “wrong” flour for the dish.

    some homemade stuff is OK but a lot takes trial and error. As far as cakes go look at the Juvella website for recipes – their Coffee & Walnut is indistinguishable from the real thing; there is a Sticky toffee pudding (I think Juvella too) which with the right flour is good too; and since its christmas have a look on the internet for a chocolate roulade which uses eggs and almost a meringue type approach.

    If beer (lager) is a desire then Brahma is palletable when cold, and is very low gluten level (Mrs P never tried more than 2 and her dad more than 4 in a night). Its not officially GF but if you will take a punt, its cheaper and nicer than the official gf stuff.

    Premier Icon monkeysfeet
    Subscriber

    Hi mate. A good friend of mine suffers from this. Loves his food and drink. He makes a lot of his own food ie. Sausages, black pudding. Drinks Cider instead of beer, but he finds the biggest issue is bread. The coeliac stuff is expensive and doesn’t toast well…so more home made and less processed crap.

    stevew
    Member

    Some great advice above, home cooking is key. If you eat out eat somewhere with a good reputation as any chef worth their weight shout take pride in cooking specifically for you. You may need to ring ahead though. Good chippy’s will also cook specifically in different oil or some do it once a month when they change the oil.

    Oh, what out for hidden things like sauces – soy sauce for eg – as it is often the hidden things.

    Premier Icon Northwind
    Subscriber

    Chinese is made awkward by soy sauce… Though, some people claim that soy sauce though it contains wheat is normally coeliac-safe as the fermentation process destroys the gluten. I have not tested this 😉 Also, it can be a little harder to get good allergy advice, I was told once that a meal definately contained no gluten, when it arrived it had prawn toast- so I asked again and they said “Yes, no MSG”- confused gluten with glutamite I guess, that’s the question they get asked the most!

    What will possibly drive you mad, is the whole wheat-where-it-has-no-place-being thing. It’s a cheap emulsifier/bulker so it’s in sauces, sweets, allsorts. Also it’s vegetarian-safe so you find some previously gluten-free products that contained meat products have changed to contain wheat. Also, products sometimes vary over time, some of my preferred options switched recipe without warning. This stuff never gets old.

    missnotax
    Member

    I know this is a bit random but I did a big BBQ years and rather than doing GF stuff seperately I did it all GF and ordered all the meat stuff from here http://www.sallyssizzlers.com/ – they are fantastic, everyone loved the food 🙂

    Premier Icon tinman66
    Subscriber

    So what happens if a Coeliac eats / drinks something with gluten in it?

    Food allergies etc suck big time if you like to cook and are in to food. I have a nut and fruit allergy and you wouldn’t believe the number of top class restaurant meals that have been ruined because they forget that a dish has almonds or tomatoes in it.

    Home cooking is the way forward, although I’ve managed to try and kill myself with my own cooking before. 😀

    Premier Icon Northwind
    Subscriber

    tinman66 – Member

    So what happens if a Coeliac eats / drinks something with gluten in it?

    Short term- I get vomiting, maybe a bit out the other end if I’m lucky, total loss of energy. Headaches and such as well. Fun. (ironically, for a long time after my diagnosis I was on a standard diet, and no immediate symptoms. Treatment plan changed, went on diet, 3 months later tried some wheaty goodness and was horribly ill)

    Long term- ooh, allsorts are linked. Osteoperosis, anaemia, ulceration, skin disorders, general malnutrition in fact, infertility/pregnancy complications in women, and stomach cancer. it’s not an allergy, though it’s commonly referred to as such. It’s actually an autoimmune disorder so has more complex effects than allergies tend to.. (obviously AIDS ruined it for the other autoimmune disorders!)

    Premier Icon Pik n Mix
    Subscriber

    wow, thanks for the replies (even the grammar police ones) I have been up for 4 days straight getting my final mapping report in for uni (it was proof read and grammar corrected beforehand)

    I understand this is going to have to become normal in my life, I am still however at the freakout stage.

    Northwind, some good advice thank you.

    Is cross contamination really as big an issue as it seems? do I need 2 toasters? my head is blown by all of this!

    And Rusty that TRD Celica is beaut 😉

    eta

    this should probably be in the first world problems post but with Christmas coming im a freaking 🙁

    Premier Icon Haze
    Subscriber

    My Dad was diagnosed recently, bit of a pain for someone who has always been fussy about bread.

    They did stop the prescription bread a couple of months back, though apparently it’s back on after a campaign by Coeliacs UK to get it reinstated.

    I don’t think he struggles too much when out at restaurants, most chefs are more than happy to provide gluten free.

    Premier Icon Pik n Mix
    Subscriber

    oooo yeah, wine as well, my Mrs went very sheepish when she read the allergy advice on the last bottle, I haven’t been able to find it to check it out. Can I drink wine still? Cider please god tell me I can have cider.

    Premier Icon Haze
    Subscriber

    Whisky is still on the menu 🙂

    Premier Icon Northwind
    Subscriber

    Hah, I’ve never checked wine (always wondered why drinking bottles of wine makes me ill, it must be the glutens). Cider is ON. Though still tastes of wee. There is GF beer, and also some lagers are allegedly GF or near-GF (Budweiser frintance has been independantly tested and was coeliac-safe, but their QC isn’t good enough to ensure that all bottles are the same)

    Pik n Mix – Member

    Is cross contamination really as big an issue as it seems? do I need 2 toasters? my head is blown by all of this!

    I think honestly here it all gets a bit grey. Correct practice is total exclusion, ie different frying pans for breaded and unbreaded fish, 2 toasters as you say.

    It gets so complex because it’s possible to have a low level of tolerance where you won’t have immediately noticable symptoms- but that doesn’t mean it’s not still having an ill effect. So you can’t neccesarily assume “I didn’t throw up, therefore it’s fine”.

    Now, this bit is not advice, this is personal opinion. For me it reaches a point where quality of life now is just as important. So, I’ll eat chips from a chippie, and gf toast from a mate’s or a guesthouse’s toaster, because I know it’ll not cause me immediate bother and even if there’s a long term impact I’d rather live a bit more normal now than later. But, I do not advocate this.

    Medical professionals hate this sort of question because it’s basically unquantifiable, and so the only advice they can ever give is exclusion. And quite right, it’s the correct answer.

    But hey, I have osteoperosis and a downhill bike so it’s probably the least of my worries 🙂

    Premier Icon tinman66
    Subscriber

    Thanks Northwind, sounds delightful 😉

    Got one of my best mates coming back from Oz at xmas for my wedding and he’s just been diagnosed so this threads been really useful to know what I can and can’t feed him.

    Pik n Mix – can’t give any advice on GF / Coeliacs etc but one of the things I found with my allergy was I went to the specialist hoping they’d give me a magical cure and they basically told me not to touch any fruit or nuts (including the Cadbury’s ones 🙂 )I was genuinely gutted and I was terrified to eat anything in case it killed me.

    However, trust me, you will get your head round it and you’ll find out what you can and can’t eat and how you can avoid certain foods. Just take it easy, find a couple of foods that you really like and are safe to eat and eat variations on them for a couple of days then slowly start adding to the list. It will feel like there’s nothing you can eat at the moment but just take it steady and you’ll be fine.

    smartmonkey
    Member

    Genius Bread, now available from some of the supermarkets (big Tescos and Sainsburys).
    IMHO all other gluten free breads I have tried taste like cardboard.
    It’s good enough that when my Gluten free mate comes round, everyone gets there bacon butties made with it to avoid “contamination”/mistakes.
    HTH
    SM

    Premier Icon Northwind
    Subscriber

    I do recommend the Yes You Can brown bread… Mentioned that up the page but it was in a mega-post. Better than Genius brown IMO.

    hmanchester
    Member

    My advice is to embrace it rather than replace it.

    Gluten isn’t good for people and you’re going to feel a lot healthier without it, coeliac or not. See it as fortunate limitation and start hammering the sweet potato! Replacing it with imitation grains means you lose the silver lining to your cloud.

    Premier Icon jerseychaz
    Subscriber

    Mrs Jerseychaz is Gluten, Lactose and Egg intolerant but still manages to eat pretty well – I spent half my life reading the ingredients lists in supermarkets in the early days of our relationship. Sainsbury’s have quite a good range but put egg in almost all the bakery products to get the rise. Morrissons do a bread with Quinoa and Millet which is pretty good though. There are loads of good cookery books available now, try the Phil Vickery one. We’ve found that pubs and restaurants that cook from fresh can usually offer two or three dishes without any of the dreaded ingredients, those that haul Brake Bros products out of the freezer can’t. Mrs doesn’t drink so I can’t offer any help there. We don’t bother with seperate toasters, pans etc but do take care to seperate utensils when we are actually cooking. BTW, japanese Soy Sauce is gluten free 😀

    Premier Icon white101
    Subscriber

    Good news!! if you love cooking and food then things are going to be fine, cos after 3 years of being a coeliac if there is one thing I do know its cooking fresh happens a lot more often now than ever before.
    But the really good thing means no more crappy processed food and dodgy ingredients

    Eating in is the easy bit, and shopping just means a bit more time spent looking at labels down the supermarket. Eating out can be a challenge, but a lot of places on the high street are getting much better.

    Beer was my toughest challenge, I’m not a cider fan and some of it doesnt like me much. if your a beer fan try hambletonales.co.uk for a decent beer and a strong lager, and 15% off online sales right now.
    Otherwise its wine and I have been fine with Bud as its a rice based beer and doesnt seem to bother me.

    Good luck, after a few weeks you’ll be fine with things

    freeagent
    Member

    Pik n Mix – Member
    I have recently round out that i suffer with this, It has ultimately ruined my world as I love cooking and food.

    I have desperately been trying to be gluten free for several months, however still getting caught out by the hidden ones!

    Anyway, any real world advice?

    sorry to be a bit dads.net

    It hasn’t ruined your world. Cancer ruins your world. Being a coeliac is a pain in the arse, but not a life-ruiner.

    (my 35 year old brother has Cancer – which is ruining him)

    My 5 year old duaghter has been a Coeliac from birth, however we didn’t get a definative diagnosis until this summer. As a baby she was also lactose intollerant, which was hard work. However since her diagnosis we’ve been advised to introduce dairy to her diet, and it has gone pretty well.
    One issue she has is if she has gluten it brings on a temporary lactose intollerence for a couple of weeks while her body deals with the shock of the gluten. We discussed this with the consultant, who said it was a known problem some coeliacs have.

    As for food – it is difficult, but you can make it easier with a bit on planning. some of the bread isn’t too sad – warburtons + Genius are both edible.
    Pasta is pretty good, but watch it when cooking – it can turn to mush pretty quickly.
    Sausages – Waitrose do their own, which are OK, otherwise try these –
    http://www.theblackfarmer.com/gluten_free_products/the_black_farmers_daughter
    they are very nice!

    Heinz food is normally pretty good – however always read the label!
    You should be able to get food on prescription (we do for Millie) try some different stuff and see what you like – she loves the garlic bread at the moment.

    Eating out can be tough – some places are a complete no-no but others (as mentioned by others) are pretty accomodating.
    We have to concerntrate to avoid cross-contamination – separate bread board, keeping crumbs out of the marg, etc…

    one other tip is get around to all the different supermarkets – they all do different stuff (for example we can only get the chicken nuggets she likes in Sainsburys) and you’ll soon get your head around what comes from where.

    Good luck with it – to be honest, my wife is a vegetarian and I find that more agrovation sometimes!

    poly
    Member

    Cross contamination seems to become more of an issue the longer you are GF – your tolerance will fall. We used to share a toaster etc. Now we have a 4 slice toaster and Mrs P is the only person to use the right hand side. She also goes mental about crumbs in the butter etc – and will often buy “her own butter” to make a point, but the kids never remember which is which! Cooking in separate pans – or Mrs P’s stuff gets done first.

    One thing to watch for, pre grated cheese – you know the sort you get in crap cafe’s etc. It usually has something mixed in to stop it sticking / clumping. Some places use cornflour (OK) but some use wheat flour (bad).

    I would say 80% of places are reasonably helpful (and some of them are really good). 80% of the rest are OK about it but not too bothered and the last handful are truely crap.

    Most restaurants and even classier cafe’s seem to be pretty educated on avoiding cross contamination. The bigger issue is actually when you go to a friends house and they use the same bread board, or the stick your special bread on top of the standard stuff. One friend was quite unsympathetic until she had the misfortune to witness first hand the consequences of some minor contamination (probably chips with a coating?), she now goes out her way to support / accommodate Mrs P, demands to see packets of things in cafe’s etc.

    Premier Icon Northwind
    Subscriber

    Quite a lot of the stuff you do to avoid crosscontamination is just good manners/good food practice anyway- cleaning up messes, not filling the butter with toast, etc.

    BurnBob
    Member

    My wife is wheat-free and has been for years. Doctor has not diagnosed her with celiac so no food on prescription here. Cooking at home is fine, just buy wheat free bread, pasta etc, if cooking pasta I just eat the stuff too. Lunches out or travelling is difficult as its normally, sandwich or pasta. There’s been massive improvements in availability of things now. Wife now finds fish fingers, frozen pizzas at supermarket. Our local takeaway is great, we take a gluten free base in and they make her a pizza, another chippy does gluten free batter on a Friday. Dominoes now apparently do gluten free pizzas. What was the question again?

    rob jackson
    Member

    Have a look here:
    http://littonlarder.com/
    all home cooked and LOVELY

    Premier Icon Pik n Mix
    Subscriber

    Thank you so much all 🙂

    It hasn’t ruined your world. Cancer ruins your world. Being a coeliac is a pain in the arse, but not a life-ruiner.

    You do not know my circumstances matey, but the cut and dry of it is food is the only thing that has been the stable reason as to why I haven’t killed myself in my darkest days, this has now been taken away so yeah its ruined me to lose my only coping mechanism, excuse me for seeing it as a game ender!
    I am nowhere near saying this is as bad as cancer but for me is world ending.
    I hope you brother can beat his illness.

    I think I need to read as much as I can about this, I haven’t even cooked a single meal since I found out my interest in food has vanished overnight.

    I know its not a massive problem in the grand scheme of things so apologies if I offended anyone.

    gusamc
    Member

    gf is a coeliac, it can be pita when out, however
    – chicken or vegetable kebab
    – thai or indian – much is ok
    – I’d say increasing ranges of stuff for sale/menu marking being found
    – 3 types (sorry can’t remember which) of Sainsbury std sausages are GF
    – get the gf free bread (getting better Genius, Warburtons) and those little black toster bags (ebay etc) and beware they stay king hot for ages – toasting seems to make the bread more bread like
    I’ve just learned to read labels carefully and ask questions
    meal with one of her mates last night who is a cook
    – garlic mushrooms with toast (*ricecakes for gf)
    – baked chicken thighs, creamed cabbage with sesame seeds and light mustard, baked courgettes, potato/onion rosti type thing, djionne mustard sauce gravy
    – premade merangues, add fruit and cream
    then old skool brandy coffees
    and gf is a good cook and just works round it
    fine by me

    I **think** if you resister with coeliac society (do for tips etc anyway) you might get sent some free stuff (pretty surge gf occasionally gets a new range sent to her)

    DenDennis
    Member

    just out of interest, for those who have the coeliac, how bad were / are the symptoms and what is the worst thing?
    could you have it without really noticing it or is the gut always obviously in turmoil??

    thanks

    Premier Icon Northwind
    Subscriber

    With me, I had no external symptoms at all- it was picked up from a blood screening at a diabetic outpatients’ clinic. Initially I was in a study group that didn’t go on the diet (this all went tits up unfortunately but that’s another story)

    But, the external symptoms aren’t all there is, and though I never had a stomach upset I did end up with osteoperosis!

    So, once that was discovered, I went onto the diet- and then shortly afterwards, lost the tolerance I had, and now if I eat more than a tiny amount of gluten it’s gastric vesuvius time.

    Premier Icon FieldMarshall
    Subscriber

    Pick n Mix, sorry to hear about your diagnosis.

    I was diagnosed 2 1/2 years ago and at the time was devastated. Yes its a pain, but on the plus side my quality of life is massively improved and my lactose intolerance has gone.

    I just wish i’d been diagnosed sooner.

    As others have said, no real impact in terms if eating at home once you get used to what you can and cant eat and get familiar with what products/ingredients/brands to buy. Although i still get caught out from time to time. And as others gave said, you become less tolerant the less you have.

    The range of products and choice in restaurants has improved massively in the last few years.

    In some ways i’m fortunate to get overt symptoms so i know when ive had gluten inadvertently. But also believe that you need to balance exclusion with quality of life.

    Premier Icon FieldMarshall
    Subscriber

    Almost forgot. If anyone is missing beer, then Hopback Crop Circle has recently been certified as GF.

    http://www.hopback.co.uk/gluten-free.html

    And the brewery is only just down the road from my house. 🙂

    Premier Icon FieldMarshall
    Subscriber

    Also i don’t mean to pry/jump to conclusions but gluten intolerance/coeliac disease has been linked to depression, so you may find those darker days will become a thing of the past, once you exclude the gluten.

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