coeliac for beginners

[ErnesttheBavarian]

Sorry I know there's loads, and I have read loads, but I have a few possibly stupid questions. I just had my dx this lunchtime, so this is v new for me.

OK, so I stopped by the shop on leaving the doctors to get lunch for ds's - I got a couple of bread rolls. So here are the possibly stupid questions - can I handle bread and wheat? Is it ok to have it in the house and the dc eat it ?(Our breakfast table is always covered in loads of crumbs) Is this stupid?

I know I need to get them tested too (I think - is that right?)

I'm not in UK, but know here s not so gf friendly as in UK. Is making homemade gf bread easy? Should I be rushing out to buy a bread maker? Or am I better off just switching to complete alternatives rather than imitations. WHat are the alternatives.

OMG, what to I eat now! I'm starving but can't face food. But felt v hard done by and suddenly craving croissants and Brezen in the shop.

Whoa! No bread and wheat, Sorry :( You need to avoid heaps of stuff, including the crumbs from others' bread (you need your own toaster I'm afraid, or toast pockets). The list of stuff with gluten in, is huge (even cornflakes due to the malt used to flavour them, apparently). Here's a starting point www.mayoclinic.com/health/gluten-free-diet/my01140 You could go to Coeliac UK website for more advice, they might provide you with links more specific to your location. But you have to join. However, there are lots of helpful gluten free blogs out there: www.glutenfreemrsd.com/link-love

Hope this helps!

Sorry I wasn't clear. I know pretty much what I can't eat . What I'm not clear about is picking up bread for my dc, them eating bread and pouring crumbs all over the table ( with me clearing it up) I know it sounds stupid but as well as not eating it, do u need to be careful being around it? Thanks

Hi there - I remember when I was first diagnosed feeling very panicky and quite depressed for a while, so take it easy and hope you're feeling OK.

You need to avoid all crumbs - I read something that said the most gluten we (Coeliacs) should ever have is the equivalent to a small crumb a day...

So... I have toast pockets for if I ever want to toast pitta bread. I also try to avoid all crumbs - ds's and dp have normal bread. If I'm making them lunch I try to do all their stuff first, then wipe round, wash my hands and make my own food. So yes, you can pick bread up and handle it - it's impossible not to I think, but be very careful and keep washing hands and wiping round.

Be careful with things like sausages - some have breadcrumbs in and things like soy sauce which you can't have - but Tamari sauce is just as good and gluten-free!

My mistake, maybe. Being gluten intolerant, rather than Coeliac, I'm not as careful as others perhaps. I think you should be OK handling bread but not sure that you should deal with flour (dust). Alternative bread can taste OK if you get the right brand - I used to like Genius over here, in the UK, until they changed the recipe. They also now make croissant and pain-au-chocolat (I can't have them, they have dairy). I now make my own bread, with a bread maker. Others are probably better than me, but my results have been varied, so I would prefer to buy gf bread, if I could find a manufactured loaf that agreed with my gut.

We have separate toasters for g-f and non g-f bread and a separate bread board for non g-f bread. I buy separate butter and other spreads for g-f and non g-f as crumbs get stuck in these and cause contamination. When we go on holiday I take toaster bags to use instead, but find them too much of a pain to use all the time.

When the DDs were young and at nursery, they used to make them g-f playdough - not because touching it would cause a reaction, but because they might put their hands in their mouths after touching it and ingest a crumb that way. So from your point of view, I should imagine you'd be ok to handle non g-f bread etc, but you'd need to be very careful to wash your hands afterwards and I think you'll need to clear away the crumbs more frequently to avoid contamination onto your own food.

I do things the other way round from DottyDot - I make my DDs' g-f food first and then make ours (if we're having something different that isn't g-f). That way I can be sure that nothing from our food comes into contact with theirs.

I'm assuming from your name that you're in Germany? You can get quite a lot of food online - this company for example does amazing bread...they say to contact them directly for delivery outside the UK.

I haven't tried baking g-f bread for years - we get most of ours on prescription, although the supermarkets over now do pretty good own brand stuff. Could you get a relative to do you a food parcel from the UK? Most of the bread can be frozen, so you could get a batch shipped every month or so (I know that would be pricey, but might be cheaper than doing it through an online shop).

this company is based in Italy - might be easier to get a shipment from another country on the European mainland... and there are some recipes and hints on there for baking bread and cakes etc.

HTH - happy to answer any other questions . Best of luck - I know it's a minefield when you first start out.

Yes I think if it was a dc who was coeliac I'd make their food first, but as it's me I'd rather get the rest of the family fed and out of my hair first so I can then clean up and sort myself out!

As long as you're careful and get into a routine you'll be fine. I also have my own butter/marg, although have gallstones at the moment so am having to be fat free as well as gluten-free at the moment..!

Eating out especially at lunchtime can still be a pain - I try to have some nibbles in whatever bag I'm using and jacket potatoes end up being your best friend...

Here it's the DC who are coeliac - so we all eat gluten-free to minimise the fuss and effort. Slightly more expensive, but manageable.

I would do as much as possible gluten-free, and really minimise the contamination issues. Have a clear out of all your cupboards - go through things like condiments, stock cubes, seasonings, anything in a tin or a packet and either get them eaten up, or throw them away if they are doubtful. Then spring clean all the cupboards, and start again with a well-controlled kitchen environment.

I would use gluten-free flour rather than wheat flour (flour hangs in the air and contaminates everything). Dove's Farm is great, and your DC won't even notice the difference in sauces etc. I would also use it for baking - there are lots of good gf baking recipes.

Then, I would make a list of any gluten 'must haves' that your DCs (or DP) want. For example, breakfast cereal and bread. I would look at whether a gf alternative is do-able (in terms of taste and finance). Then, if it had to be gluten, I would set up a strict system of where (for example) bread is stored, where it can be handled, how it is done, etc. Things like separate toasters, breadboards and separate butter etc. I don't know how old your DC are, but they should be taught to handle it properly, so they contribute in keeping a safe environment.

It is free to join Coeliac UK for the first 6 months, so well worth it.

And YY to having your kids tested. All first-degree relatives should be tested. You just need to ask your GP for a referral, and I recommend doing it as soon as possible.

Lots of good advice here already. Just wanted to clarify that you CAN handle bread, flour, etc you just can't eat it, not even crumbs so as long as you wash your hands & surfaces well afterwards you should be fine. We use either toaster bags or a clean grill to toast gluten free bread and always use separate butter/margarine/jam etc as well as separate chopping boards/knives etc to avoid contamination from crumbs with gluten in. We don't have a gluten free household as I personally think this is a) too restrictive and b) unrealistic - my motto is life isn't 'freefrom' so it's best to learn how to manage the risks rather than trying to avoid them completely (this is just my opinion and not a criticism of anyone else's way of doing things).

Re: gf products, I know that Schar is the European name for Glutafin/Dietary Specials and offers many of the same products including ciabatta rolls (the brown/fibre/rustic ones are the nicest). Have a look at their website for products and stockists: www.schar.com. My DD (11) was diagnosed 18mths ago and initially it was hard but we soon found gf alternatives for all her favourite foods and she's now healthy and happy. It does get easier, I promise. Good luck.

Hi, sorry I didn't get back before now, I had a weird yes no yes maybe then finally def dx for coeliac, followed by being away and offline.

So, I am finally sure, and finally back home, so facing for the first time the reality of having coeliac disease, though still not quite at the coal face, as dh is off work still and doing all the cooking. The shit hits the fan on Monday

I have a few questions - for the 1st time I had to go into a restaurant and I found I didn't know what to say. I started saying I had coeliac and the replied oh, so you're allergic to wheat. I read from the coeliac UK saying to reassure the staff it isn't an allergy. So - what do you say?

I actually feel v. nervous of eating out and don't want to eat away from home where I haven't read and checked ingredients personally, I just don't trust others. Is this normal?

Finally, I go with the 4 dc to the doctors for blood test on Friday. I know it's a totally guess, but what are the chances of them all getting away with it, or is it likely at least 1 will be positive? I've read negative blood tests not unusual, so what if it is negative? I don't feel even then that I can relax? Is it normal to feel so overwhelmed by it all? Thanks.

Btw, yes, I am in Germany, and as far as I know, you can't get prescriptions here, and after a week in the UK I am v. , as here I can't get anything like the range of stuff you can there :(

Just spent a v. boring 5 hours yesterday cleaning out my kitchen. Not enjoying coeliac so far.

I really want to loose weight. I though it would drop off me now I can't enjoy my beer any more, and feel constantly starving as there is so much I can't eat. Yet I haven't hardly lost anything. How does that work??

One final thing, I thought it was funny/weird in the UK when I suddenly stopped being a person with coeliac disease, and became "a coeliac".

It is overwhelming to start with but it does get easier, I promise.

Yes, it's highly likely that at least 1 of your DC will also be coeliac but this also isn't the end of the world.

As for eating out, you need to say that you're coeliac and then explain that this means you can't have anything with gluten in, not just wheat but also barley, rye or oats. It is in fact an auto-immune disease, not an allergy or intolerance but I'm not sure it's worth trying to explain that in a restaurant! I'm pretty sure there are cards on the internet that you can print off listing the sort of ingredients you need to avoid. Not sure what it's like in Germany but awareness has definitely improved drastically over here in recent years with lots of the big chains now offering gluten free menu choices. You do need to be careful with things like chips or anything deep fried as you need to be sure that they haven't cooked anything else in the same fat. Lots of restaurants sadly use the same fat for frying food in breadcrumbs/batter as they do for their chips so it's not safe for coeliacs.

Have you checked out the Schar gluten free food range? They are basically the same company as Glutafin and Dietary Specials over here (I buy them when we go to Spain). The ciabatta rolls are really good, especially the brown or 'rustic' ones. Check out the website for more info.

As for losing weight, this can be issue for some coeliacs because lots of the gluten free alternatives contain lots of sugar and/or fat. The best thing is to try and eat fresh food as much as possible, eg lots of veg, meat, fish, rice & fruit. Easier said than done, I know! You also need to give your gut time to heal properly before you can realistically expect to start losing weight. This can take months, depending on the severity of the damage so don't give yourself a hard time about your weight just yet - you've got enough to deal with!

Thank you. Luckily I'm not too bothered about what I eat but feeding the dc worries me, a lot, esp starting next week when I am back on kitchen duty.

I guess I am being totally over sensitive about this, but I really get the feeling that people don't believe me or think I am making a fuss or over exaggerating and I'm not sure how to deal with it. e.g. last night I went to a friends house and they later provided a supper, just soup, bread, ham cheese and fruit. I said I wouldn't be able to eat the soup. They said it was only vegetables, I asked about the stock and they said yes - so I can't eat it, - "oh, it's only a tiny amount, do you really need to be so strict" (i.e. you are making a fuss about nothing. What are the symptoms/how long have you had it (i.e. there's nothing wrong with you) then went on to say about their friend who'd had it and she was ok now, and she could eat Dinkel and Spelt (so I again am making a fuss saying I can't eat xy and z cos their friend could and their friend is ok now so it's a minor thing that will pass)

I just felt like an idiot and a liar and that they didn't believe me or that I was exaggerating :( This isn't the 1st time, e.g. when cooking things in oil, people wouldn't believe me that I should avoid this.

I tried explaining it's not a wheat allergy but an auto immune disease but tbh I don't understand enough myself the difference ( all the books I have read state this fact but don't say what the difference is. No one believes me when I say a few crumbs here or there or a spoonful of stock is not ok, they think I am being a fussy attention seeker. I feel like I never want to tell anyone ever again :( Feel pretty down about this, as many circs when I have to tell people and they quiz me in a way that implies they just don't believe me, that I'm sure I wouldn't get if I said I were diabetic or had sever peanut allergy for example.

I also then didn't want to eat the fruit as it was all chopped up and the chopping boards and kitchen were covered in bread crumbs, which again I'm sure they noted it (I didn't say anything) would you have eaten it? I wasn't hungry anyway as I had already had a delicious GF dinner cooked by my lovely dh before I went out.

Anyway, any top tips for politely and briefly telling people and dealing with their total disbelief and scepticism appreciated.

Finally, apart from GF diet, do I also need to do anything else (have read in some books about seeing a dietician/ getting blood tests to see how deficient I am nutritionally ( already know iron & B vitamins) or bone tests re osteoporosis, but dunno if in RL people actually do this stuff?)

Oh dear sounds like you have some pretty strange friends! I'm quite shocked that people can show so little knowledge and understanding of such a common disease. The problem is, there are so many people these days claiming to be allergic or intolerant to various foods without any medical diagnosis that it leaves the 'real' sufferers feeling silly and not taken seriously. You are totally right about both the stock in the soup and the contamination from crumbs. Sounds like you need to start educating your friends. Basically, coeliac disease is an auto-immune disease which means that it is life-long and causes the body to 'attack' itself. Any gluten in your diet, even the smallest crumb, could cause your gut to attack itself thus causing damage, with or without symptoms. The damage can take a while to heal and if you don't follow a strict gf diet it can lead to serious long-term problems such as osteoporosis, infertility and even bowel cancer. I know you know all this but maybe you need to really spell it out to your so-called friends so that they understand how important it is. You will not 'grow out' of it, it will not 'get better', you will never be able to have 'just a little bit', no matter what other people may think or claim. Maybe you could print some info off the Coeliac UK website for them to read?

I don't know how the health system works in Germany but over here you would definitely be seen by a dietician to give you advice on eating a healthy gf diet. Not sure about the bone tests as it's my 11 yr old DD that's coeliac, not me so they didn't need to do any of that due to her age.

My dp has coeliac disease and my dd. Basically we don't eat at other peoples houses and we don't eat out. You get used to it. Generally I find people can get their head around the basics but not the cross contamination issues. With close friends after many years of education (and most of them having witnessed the effects of a "poisoning" dp reacts quickly and violently), we can go for dinner and bring Dp and dds food. We even bring our own disposable bbq to bbqs :)

Luckily dp loves cooking and experimenting and bakes pizza, dim sum etc all from scratch so people are happy to come here for a gluten free meal. we are quite strict though everything that comes through the door for bbqs is checked etc and I'm not happy with glutened bread in the house.

Yes you can pick up and handle all bread/flour products. You do have to eat it to make yourself ill.

I use a breadmaker for GF bread and make loads of GF cakes and other deserts. It is depressing at first but I learned to bake and cook really well and now I eat far better than before. My family now eat mostly GF but they still eat normal bread.

Sorry your friends are doing the 'oh can't you eat a little bit' thing. You really can't though. What I do is just try and make it as simple as possible for friends and tell them I can eat meat and veg and to get some Kallo stock cubes. I also often take GF cake/pudding that we can all enjoy eating.

I don't feel up to eating outside of my safe house! I went to a group and i usually leave early, but i had given someone a lift who wanted to stay for the supper, so i inadvertantly ended up in the situation. I had laready eaten and wouldn,t have wanted anything anyway, but i ended up having to explain and, not for the first time, just got disbelief and scepticism. It's hard enough anyway.

I keep seeing adverts for food or programmes about cooking and thinking it looks good, then rmembering disappointed that i cant have it anymore :(

Saying that, i am visiting friends this weekend, and wish i wasnt from the food pov. Any tips for reducing the stress for my wonderful host and for me?

For those who have dc with coeliac, how do they cope with giving up food and having to eat stuff they didn't used to? Do you all have to send them with packed lunch every day?

Ernest - poor you. It does get better honest. I remember feeling this way to begin with. I started enjoying things when I went on a chefs course and started cooking very well for myself from scratch. Today I made cassoulet for main course and a gluten free chocolate tart for desert and a big glass of wine.

Best thing to do with hosts is not to say 'I am coeliac' but instead just say. 'I can eat fish, meat, vegetables, eggs, fruit. Please dont put any wheat flour or ready made sauces in anything and no sausages please as they usually contain wheat. Otherwise I can eat everything you do.

That instruction usually covers all starter and mains.

For pudding (if you can tolerate lactose) ice cream or something like creme caramel are OK. The old standby of course is meringue (which is just sugar and egg) and fruit.

Unfortunately some coeliacs cannot tolerate lactose because of gut damage which means excluding dairy as well (but usually a bit of hard cheese is OK).

Dd is lactose intolerant, so I'm already used to working round that. Dh has just got into watching the great British bake off . I used to like baking.

I was invited out for a 'pot luck' dinner and turned it down. On prompting I discreetly told 1 of the people about the CD. She was sympathetic and all, but I got the 'if I cut back and am strict for a while then I'll be able to eat it all again' as if i've been over indulging in cakes and if I control myself everything will be back to normal.

Is this a common misconception? Do you correct people and tell the it's a life long condition to just smile sweetly and ignore/ feel annoyed. Will I ever stop feeling annoyed? I guess I am a big wuss who wants sympathy not someone judging me and playing it all down. boo hoo.

People do often misunderstand it. They think it is like one of those diet fads like a 'Low GI diet'. It is a disease - not a diet preference.

I try to be bright and breezy when telling people and reassure them that I eat 'normal' foood just not certain types of food. Still, I can't just go to an impromptu party and eat stuff. I usually don't say anything and just eat nothing.

That said, it does get me down. Yesterday I was told I have early stage osteoperosis because of years of severe undiagnosed gluten intolerance. I am a 48 yr old man FGS - it is treatable but who would even guess I had osteoperosis?

I would definitely correct anyone who said something like that, while smiling sweetly and gritting my teeth of course! I think people do need to be educated about these things and there's nothing wrong with just politely saying 'well actually it's a lifelong condition so I'll never be able to eat gluten but that's fine because following a gluten free diet isn't as bad as it sounds'.

Sorry to hear that Morebeta - how was it found? Did they look ESP or was it by chance? How long do you thing you had the wheat intolerance before discovered? Not CD?

I went to hospital for another reason a month ago and they weighed and measured me as usual. I was shocked to find my height had decreased by 4 cm in 3 years.

I immediately contacted my GP and consultant and they recommended a DEXA bone scan given my history of severe long term non coeliac gluten intolerance. Osteoperosis is common in long term undiagnosed coeliacs.

I just found out that I have osteopenia which is early stage bone density loss not a severe as full osteoperosis but a significant concern given my age and sex and of course totally unexpected and abnormal.

Hopefully I can take bisphosphates to reverse or slow it and now I am not eating gluten I should be absorbing nutrients better anyway.

Curious really - how did they conclude it was not coeliac but wheat intolerance? And can they tell how long you had it? So much height loss is

I don't have wheat intolerance. I have been tested for that. I have non coeliac gluten intolerance. That means I dont have classic villial gut damage but I do have all the other symptoms and have many autoimmune problems. I was finally diagnosed by first excluding and then reintroducing gluten to my diet. I won't give the full gory details but eating even a tiny bit of gluten has a very dramatic impact on my body.

I have seen videos of people with non coeliac gluten intolerance who look like stroke victims. It affects all parts of teh body. My consultant is a specialist in non coelaic gluten intolerance and he is fighting hard to have it more properly recognised by doctors. The impact of this non classic form of gluten intolerance is very profound and some people suffer undiagnosed for years (as I did) bcause doctors only look for the classic gut villi destruction and of course it isnt there so it remains undiagnosed.

Just to add a positive note, we're currently on holiday in Mallorca and have found that people are really clued up about coeliac disease. There isn't the range of products over here that there is in the UK - I sent a box of pasta and biscuits ahead of us and we brought a suitcase full of bread and cereal so I could be sure the DDs would have enough for the fortnight! But the labelling in the supermarkets is fantastic - even the price tags on the shelves are marked 'sin gluten' where appropriate and I even found some frozen g-f baguettes. In the restaurants, everyone understands 'celiacos' and 'sin gluten' and we have eaten out lots.

I'm sorry your friends are not being very sensitive to your new diagnosis. I think sometimes the problem is that it has become almost 'fashionable' to have a wheat intolerance and lots of people don't get the difference between that and coeliac disease. You can get information sheets in all languages from coeliac uk - I got one in Japanese when my DTs were going to tea at a friend's whose mother is Japanese, just to be on the safe side. Not sure if you'd be able to access this from Germany, but I'd be happy to get the PDF for you and send it to you if you'd like me to... It might help when explaining things to your friends - something official!!

Hope things improve for you soon and that your DCs blood tests went ok.