Hand-holding wanted please - feeling down about the move to gluten-free

[redridingwolf]

Would just like some nice, reassuring posts, please. Anyone feeling judgey can go and find another thread today (there's plenty).

DS1 (age 4) is newly diagnosed coeliac. So we've moved to gluten-free. Things have been complicated by he and DS2 getting a nasty tummy bug which they're only just recovering from now.

Things I am finding difficult:-

1. People who say 'Oh, gluten-free is easy', or 'We practically eat gluten-free anyway' (by which they mean they have potato or rice with their evening meal) or who make snide comments about food allergies.

1. Dealing with the constant wailing, shouting and moaning from DS1 and DS2 about food. I have instituted a new policy (which we had begun before the move to gluten-free) - of making just one meal at each meal-time. It is a balanced meal, with meat/fish, veg and carbs. Everyone has to try it, they don't have to eat it all, but there are no substitutions (unless someone's ill etc.) And there's a chocolate button after dinner for those who have made a good effort (not you, DH, sit down.)

1. My DM, who is being a huge support, but who keeps whipping up alternative meals and snacks for the boys when they don't like what's on offer, and I don't think that's helpful.

1. Not being able to take the pressure off by going out for a meal. We used to eat lunch out a lot at weekends. Just not feasible at the moment - the cross-questioning and checking about gf aside, it's likely that the only gf options will be things DS1 doesn't like anyway.

1. The constant pressure to keep coming up with more food - meals, snacks etc. I am constantly meal planning, meal preparing, meal clearing up, internet shopping (which takes ages because of having to research every item).

I know it's going to get better. I just feel very tired (I got the tummy bug too which didn't help) and I feel criticised by everyone who watches my DSs not eating a meal (apart from DH, who is totally on my side).

I have sympathy for you. My DN is coeliac and i have some knowledge of the subject. Take no notice of other peoples criticisms and just focus on your families health. Are you a member of Coeliac UK?? My SIL found them very helpful while she was getting used to the challenges they faced. Also are you getting help from your GP? My DN gets some food on prescription.

Thanks Vajazzler. Yes, I've joined Coeliac UK and find the directory very helpful when shopping. I need to follow up on the prescription, I think it should have been sent to the GP, so will check with them.

I think the first thing to realise is that when you take out a major food like gluten, you will all have withdrawal symptoms. Just as an addict does to something that is bad for them, food intolerance can be the same. Day 4 and 5 is the worst in our house, even when we have 'slipped' and just had a tiny bit.
It will definitely get better, but then you know that already! Your sons will have to get used to totally new tastes and textures that will be totally alien to them. Just as when they were weaning and had to learn to cope with all those things you knew were good for them, carrots, lumps anything else they refused first time.
They wont get used to them if they are not exposed to them and unfortunately there is no short cut.
Id recommend getting a good gluten free baking book (phil vickery is my favourite, but im sure others will have recommendations also) get them involved and show them that gluten free can be yummy and fun, and also a great treat after dinner (maybe something your dm could help with so she is still involved)

Chin up it is a major dietary unheaval, and all the people who think its easy but have the option to drop it whenever they like dont get what its like. However in a few months you will have it all worked out and will just be normal to you.
Good luck and hth

Oh redridingwolf I can soooooo sympathise. As much as DD has found going gluten free fairly straight forward I think this is mainly because we already had DS who has multiple food allergies so no gluten was just another thing to add to the list. Plus I'm lucky that my kids have never been picky eaters (thank god!). However, I remember how hard it was dealing with DS's allergies in the early days and even now I get very down sometimes about the whole thing and how unfair it all is. We too used to eat out a lot and that just isn't an easy option anymore. And trying to come up with things we can all eat is a daily struggle I could do without, especially as I'm definitely a 'can't cook won't cook' kind of person.

But, it IS possible to eat out with a bit of forward planning and more & more places are offering gluten free options. The new law that's just come into force should also help with this too. And, it DOES get easier I promise. After a while it just becomes second nature. This is certainly not the life any of us would've chosen but I guess we've just got to get on with the hand we've been dealt and make the best of it.

I totally agree with your stance at meal times and think you need to have a quiet, calm chat with your mum about sticking to your rules, explaining how important this is to you and the effect it has on family life if she undermines you. For some reason when mums became grandmas they become totally unable to say 'no', even though they had no problem saying it to their own children!

You need to give yourself a break too. You're doing a fantastic job in a really difficult situation so don't worry about what other people may or may not be thinking. Give yourself a pat on the back instead then grit your teeth and tell yourself it WILL get better. Sending lots of positive thoughts

Thank you both!

Yes, snoz, I think withdrawal does have something to do with it, that's a good point.

Freefrom, I think I feel those positive vibes! and thank you for the flowers (first ones this year, virtual or in RL...) You are right about grandmas getting softer, I'm sure DM wasn't like that with me! I think it's partly because she's a much better cook than me, so she's probably looking at my offerings and thinking no wonder they don't want to eat it! I will have a quiet word before her next visit.

It does get easier. My dd (now 13), was 3 ½ when diagnosed coeliac. We did have a friend with a coeliac 5 year old and that definitely helped, but I remember feeling wondering how we would cope at the time. We went to stay with our friends for a few days as we were making the switch to gluten free and as my dd worshipped the older child she was happy to eat the same food. Ten years ago there was far less available and the bread was all horrible, and my dd simply refused to eat gluten free bread for a while. That changed though as she forgot how glutenous bread tastes, and also there are far more varied breads available now, many quite palatable. We did get a bread maker and make our own bread for a while. We eat more or less what we ate before, potato, rice or gluten-free pasta based meals. You soon learn which stockcubes are ok, where to get gluten free sausages etc. Our local indian take-away is gluten free (indian often is), though we can no longer do chinese. Chains such as Nandis and Tacos either label gluten free food or have a list of which dishes are ok behind the counter. Our local pizza van offers gluten free pizzas. More and more cafes offer gluten free alternatives.

When you have a coeliac child people are usually only too keen to help. Sometimes when we are travelling we have to try several different cafes but we nearly always find something and there are the wonderful moments when you are driving down a country road on holiday somewhere and you come across a coffee shop advertising delicious gluten free cakes. We travel quite a lot overseas, I always do some research before we go, getting cards explaining about the gluten free diet in the local language, and sometimes writing to the local equivalent of coeliac uk for advice. In more remote areas we take gluten free food with us, but people are always very helpful and will cook special meals if necessary, especially for a child.

Dd always took packed lunches to primary school, rice salads or slices of gluten free pizza, but at secondary school she has school dinners. They are able to cope with any diet although she usually doesn?t get much choice. However, she is used to that now. I used to give her cake and sandwiches to take to birthday parties but over time more and more of the parents organising the parties started going out of their way to find gluten free food for dd anyway.

It does take a while to get used to it, but eventually you just fall into the mindset. Also the availablility of gluten free food is improving all the time so it can only get better.

Good Luck!
ps I'm a hopeless cook, but dd is now keen on cooking and produces great gf meals!

Thanks choco I am hoping to get DS1 into cooking - he's quite interested in it. I think being coeliac is much easier if you are a good cook (and enjoy it) so am going to do my best to encourage him in that direction.

Hi RedRiding. welcome to the shiny world of GF (pain in the bum, isn't it?!?!!!)

i can't offer tips to stop the complaining i'm afraid, DD has been amazing on that front - she clearly remembers feeling shit all the time, so all i have to say is you can't have it because it's not gluten-free, and she accepts it (we've progressed from "bad for my tummy" to "gooten-feee")

we eat out a lot too, and i work in the restaurant business, so that has been a big pain. i'm never 100% sure i believe them when the waiter vaguely replies "um yeah, it's gluten free", and i've marched into the kitchen on a couple of occasions to speak to the chef! Carluccio's are very good, they whip out a whole secret GF menu if you ask which has dozens of dishes on, including pastas and ice cream! I generally have a range of GF products in the nappy bag just in case, although we got caught out on holiday the other week when i didn't have any GF bread/crackers and all i could give DD for lunch was a piece of cheese and slice of ham and a yoghurt :(

at home we rely quite heavily on GF replacement products (she is getting better, but is still picky and most of her diet is based on pasta/rice/chips/toasties etc). i have about 5 local shops that i go to for the variety. the only thing i have yet to track down is croissants :(

DD has ended up eating more chocolate and sweet things in the last 3 months than the rest of her life, because of me over-compensating every time we are somewhere that she can't have what's on offer! We've got our first post-diagnosis kids party to go to tomorrow (which i'm dreading a bit), so i'll be armed with a variety of cakes/biscuits/snacks/GF squash and hot chocolate!!!

it's very irritating how much stuff has gluten in it, quite uneccessarily IMO (hot chocolate! stock cubes! cornflakes!!!). we've tripped up a few times, but i think that's inevitable.

and re point 1 - tell them all to F OFF!!!!! i can't stand that look that says "oh, your one of those neurotic mothers", as if gluten-free was some kind of fad diet!!!!!

don't worry, it'll become routine soon :)

Hi FSB, yes, I know, I am rather super-sensitive I think to people thinking it's a fad, or that I am being over-careful about it. I would like not to be careful, frankly, but it's not an option! I will just have to toughen up and not care what people think.

Yes, the only cafe we've been to, I have also marched to the kitchen door (with the outraged waitress hot on my heels, saying 'Noooo!') and spoken to the restaurant manager (who was charming and helpful) because I didn't feel that the waitress really appreciated what I was saying.

The complaining isn't specifically about gluten, really. DS1 is just a massively fussy eater (I am hoping this will change once his guts heal). Now that I know he is malnourished due to the coeliac, I am being extra-tough about eating healthy food. But it is a slow process.

I know what you mean about over-compensating. I have far more biscuits/cakes in my cupboards than normal, because of the fear of not having a GF version when required - problem is that when they're in the cupboard they get eaten!

I've been gf for 15 years now, and it is a pita at first, but it gets a lot easier.

Chains that have gf menus are Wetherspoons (even do a gf crumble), Harvester, Beefeater, Nandos, and Wagamama amongst others.

You will find more places to eat out - we frequent a cafe where they do loads of gf stuff for all ages, and a pizza place that does lush gf pizza and pasta. Perhaps if you start a thread on places to eat gf in your area, people will be able to tell you the hidden secrets !

... also, if you make friends with the people who run your local independent cafe/deli, they will probably order stuff in for you. we've been going to our local at least 3 times a week for years (almost every day when i was on maternity leave!!), and they have been brilliant at adapting for DD. they now stock all sorts of GF snacks and cake, and have changed their brand of chocolate powder to a DF one :)

CMOT - where's your local GF pizza place? i haven't found one of those yet...

good idea, FSB, I am off to be ingratiating with the local health food cafe (they may think I am mad, I am out of practice at talking to adults)

CMOT good idea re: thread.

Our pizza place in in Worcester - Puccinis, and the fabulous allergy friendly cafe is also in Worcester and called Charlies.

I've been to a gf pizza serving place in Edinburgh too.

Lots of places will stock things if you show that it is worth their while - our farm shop will get gf scotch eggs in for me, and the icecream place has gf cones after some badgering

bugger - i was hoping you were going to say "North London"!!

i've tried to make GF pasta 4 or 5 times from a variety of recipes/ kits and then are all horrible! one was so hard and brittle it hurt the roof of DD's mouth

oh well... i'll keep searching

My best gf pizza recipe uses Brazilian cheese bread (chebe) as the base, cooked on a pizza stone. It is soft and chewy and tasty. You can get the mix in Waitrose - I prefer the Paos de Quejo one to the other labelled as pizza base. Tis this though no good if you need df

Brazilian cheese bread?! I've never heard of it!!!

I'll take this thread with me to waitrose to make sure I get the name right

Thankfully we're not dairy free anymore :)

Thanks...

Its in the FreeFrom section. The cheese balls are terribly addictive tbh - I make mine up with emmenthal, and they don't last long at all as the non gf people snaffle them. You can freeze them, so great for having with soup or any other tiome people are having bread with a meal. If you look on the chebe website (you can't get all the chebe mixes here alas) theres loads of recipes too.

changing your diet to GF is difficult and hard work. I'm not coeliac, but had to eat GF for about 5 years for various medical reasons. My brother is coeliac though and allergic to dairy for good measure!

It's the change that is difficult, having to stop having favourite things is a pain, comments from other parents like you list in your first point must make you want to scream.

I recall that shopping took an age while I had to stop and look at every blooming packet and learn which ones were and were not GF, some GF pasta is absolutely vile. I lived on home made soup and jacket potatoes and curry. I live in NZ now, but if I recall correctly a lot of Sainsbury curry ready meals were GF. I am sure it will get easier, once you learn which local cafe's and shops will do GF. National Trust places were always very good, but tend to be a bit meat & veg.

You will end up cooking a lot more from scratch - get a good GF cook book - but your family's diet can be really healthy with the dreaded McDonalds automatically weeded out. My brother is useless though and lives on chips and chocolate ....

You have my sympathies, I found it hard as an adult, 2 little boys into the mix must be very difficult

It does get considerably easier. You will be amazed how quickly you get used to it and then it's just "what you do".

First you will find a lot of help here:
members2.boardhost.com/glutenfree/ You can post asking for safe gf places to eat in your area if none is listed on the attached supplementary board.

On the attached supplementary board you will find a huge archive of helpful tips and recipes and information about eating out/holidays etc.: coeliac.proboards.com/index.cgi

My son is both coeliac and allergic to gluten and milk and completely intolerant to egg but I still bake him birthday cakes, buns etc. You really do get used to substitutions etc. I've managed to make gf/milkfree/eggfree versions of all the things he liked pre allergies - apart from croissants - there's no way croissants work despite my best efforts! When he is here (he's at university) every meal is glutenfree because it's simpler (and because of is allergies safer) that way so over time you need to channel your DM's enthusiasm into helping move towards that.

What sort of thing are your DSs missing? If you can put up a list maybe we can tell you about close gf substitutes.

DH was diagnosed with coeliac disease about six years ago. He does find it hard and really misses bread, pizza and beer! There are GF alternatives of course but generally not as good and of course more expensive.
We've had some good experiences eating out. As mentioned above many chain restaurants offer GF food. Bella italia do GF pasta and pizza. Zizzi GF pasta. Someone said Macdonalds is out, but they do an allergen list and DH likes a big mac, no bun, and fries. You can always take your own GF roll and rebuild the big mac!
The GF pizza restaurant in Edinburgh is probably Mammas in Grassmarket - very yummy
Most Indian restaurants are a good bet. Be careful of things like onion bhajis etc which although GF may be cross contaminated.
We do go to a Chinese restaurant too. I've taken non GF friends there and they've gone back on their own because it's such a fab restaurant.
We have a localish chippie which does GF fish and chips. They do them every day but there are lots of others although some only do GF once a month or once a week.
We have a few pubs in the area with seperate GF menus. When we are going on holiday or for a day out we tend to research in advance and usually find somewhere.
This website is very helpful. Some of the restaurants I've mentioned are listed on their supplementary board. Sorry just tried to link but struggling as on phone. Google gluten free message board!

Cross post with flaming toaster re the gluten free message board. It really is very helpful. I have an occasional look at it these days - I do all the cooking at home - but as flaming toaster says you do get very used to what is OK.

brilliant, thank you for brazilian cheese bread and gluten free board links. DD is crying so can't stay online now but will be back