survival tips allergies and siblings?, new dx am clueless and loosing sleep!

[ErnesttheBavarian]

Dd has been dx as lactose and fructose intolerant, suspected coeliac. This is all v. new and I haven't got a clue. (she had terrible poos t#other day, spoke to her doctor and mentioned this and said the kindergarten couldn't tell me anything other than she had hot dogs at the party, doctor explains hot dogs often high in lactose - I had no idea at all. Still waiting for appt with nutritionist. Honestly I haven't got a clue)

The list of what she can't eat is so big, it feels like I'm asking wtf can she eat.

Other day I was shopping. Kids all love strawberries. I ummed and ahhed a lot, and eventually bought them. Dh was incredulous, why did I buy them, dd loves them, can't eat them? We had them after she went to bed. Now I'm looking into it, breakfast cereal is out, everything!

How do you get the balance of coping with 1 child when you have others? If it were just 1 food type it would be easier, but it's everything. And she's only little (3) she takes it on the chin when I say she can't have apple juice any more, but then I've just not bought any more juice full stop, so no one has any juice.

Dunno how to cope with this. Honestly having nightmares last night (I hate cooking anyway, plus have one vegetarian ds, so this is making my horror of kitchens turn into a living nightmare! Any survival tips?

we live by reading labels. all the time for everything. if we dont know whats in the food, we dont eat it.

our families food problems are a right pain really, so understand what its like trying to sort out food for everybody.

I am currently on a low fat ibs diet, as my ibs is pretty severe, so can only 3 types of fruit and veg.
i seem to be living on rice cakes and banana at the moment.

one son is allergic to, peanut/beans/egg/kiwi fruit/ poss some other fruit/ possible some sort of seed/ yeast extract/ and all environmental allergies.

one daughter possible and avoiding until further testing , milk and has other enviro allergies.

take one day at a time , i know thats what we are doing at the moment.

thanks, this is all so new, and as yet still awaiting dx on a couple of things, but went shopping today and thought dd can't eat that, or that, or that... x 1000, ds can't eat that or that, I probably can't eat ... It was so overwhelming, it feels like food is an enemy. I wish I could buy a human equivalent of cat food, and just give everyone a bowl of that day in day out.

How do you deal with 1 can eat something but the other can't - do you just not get it at all, or what. Do not know how to deal with all this :(

Hiya! Sorry to hear you're struggling. Just thought I'd mention that there seems to be stuff on the internet about living without fructose, if you google it, stuff comes up. I found this article quite quickly and it seems to have useful links down the side. www.livestrong.com/article/88207-foods-fructose/ Hope it helps a little. Re. siblings that's very hard. Can they be trusted to have something she can't, out of sight, without them saying anything to her? Not ideal, but means they're not completely missing out. Sorry, I can't be more use to you.

Just found this list - pretty comprehensive!

john.toebes.com/diet.html

I have DS (10)with a milk allergy, cat allergy, hay fever etc. and DD (8) with no allergies at all.
I use different crockery and cutlery, and DS has the same place at the table every time. We only eat at the table, and make the most of times DS is at a friend's for tea so we can "cheese it up".
DD didn't have anything messy like yoghurt at home, and when she had e.g. birthday cake, we put an old shower curtain below her chair to catch the crumbs.
WRT treats, we did not specifically avoid all dairy treats for DD, we made sure DS always had a box of treats in the cupboard to make it fair, and often have to discreetly swap treats from well meaning people and eat them myself later
Make sure you get advice on replacing lost nutrients, rather than blanket removal of a major food group like fruit.
Lactose pops up everywhere, it's a cheap sugar. One that surprised me is piriton (and most other) tablets, DS still has the syrup as they use lactose to make them more palatable.

BTW lots of sausages are now wheat and dairy free. We use Debbie &Andrews, Rankins or the Black Farmer usually, however there are others too. Might be worth letting the Kindergarten know for future ref.

It would never have occurred to me to use separate cutlery and crockery (though thinking about it, she tends to anyway cos she's 3 - bob the builder plates and Mr happy spoon act) but is this something I need to do?

I even had such vivid dreams that something going wrong with her birth caused it, which is bonkers I know but it was very realistic and I feel totally knocked again from swinging between almost nightmare and lying awake stressing about it. I guess in a couple of week when we hopeful finally have the definitive dx and I know when I'm up against and can actually start living it, it will feel better. Have ordered a couple of books. Didn't buy any more breakfast cereal which led to the 3 boys being surprised I'd say but not too grumbly. I've explained they can eat what the want during the day while she's at Kindergarten (they come home for lunch) but for family meals where we're all together they might have to put up with changes (for a while at least).

thanks for the list dairy free, problem with that is it's for fructose, so a lot of it she can't eat cos she's also lactose intolerant, and likely also coeliac. omg my head's exploding!!!

Think she's going to have to just take packed lunch in to kindergarten. Lunch today was a potato and wiener sausage casserole followed by cream pudding. I can't see how they can accommodate her.

First of all, you will get lots of sympathy on these boards because we all know what it's like when your child first gets diagnosed and how difficult it is. My DS (4) is allergic to milk, wheat, eggs and nuts and my DD (10) was diagnosed with coeliac disease just over a year ago. Personally, I don't stop any of us eating things we can eat because a) my kids' diets are pretty limited already, I don't want to limit them any further and b) life isn't 'freefrom' and they have to learn to accept the fact that people can and will eat things that they can't. Yes, you will need to become an expert in reading ingredients lists and yes it is a total pain in the backside and yes life is pretty bloody unfair sometimes but you will all get used to this new way of life and it will simply become the 'norm'. Just to add that if your DD is diagnosed with coeliac disease, you might well find that once she's gone gluten free for a while and her gut has had time to heal, she will be able to tolerate lactose and fructose again. Lactose and fructose intolerance in coeliacs are usually only temporary conditions caused by the damage to the gut from gluten. It is very unlikely that she will continue to be intolerant once she's been fully gluten free for a while so hopefully there is some light at the end of the tunnel.

I too hate cooking and am totally rubbish at it, which is a bit of problem when you kids with allergies/intolerances but I manage to get around it most of the time! One thing you will need to be aware of if your DD is coeliac is that you will either need to buy a separate toaster just for her gluten free bread or always use toaster bags or a clean grill. She will also need her own tub of spread/jar of jam etc to avoid contamination (a lot of crumbs end up in these!).

It is difficult sometimes eating things that one of my kids can't eat in front of them but I always offer a suitable alternative. DS doesn't really care because he's never known any different but it's harder for DD because until last year she could eat whatever she wanted and her favourite foods were bread and cake! However, we've found lots of gluten free substitutes that she enjoys including chocolate brownies and birthday cakes (all from supermarket freefrom sections) so she doesn't miss out. Birthday parties and play dates are difficult and I find it simpler to take our own food rather than running the risk of mistakes. Eating out is also extremely difficult, especially for DS as his allergies are life-threatening, but it's definitely getting better for coeliacs with more and more restaurants offering gf alternatives (we went to Ask Italian last night because they do gf pasta).

Lots of sympathy from me too, you must feel like your world's been turned upside down. My DS1 (8) has a dairy allergy, DS2 (4) is fine.

Our general approach is that the rest of us do eat things DS1 can't eat, but we do avoid eating things he would regard as a treat in front of him unless there is an extremely good substitute he would be happy with. So we would never have ice cream unless there is sorbet available for him, or unless we're out and about and he's agreed he'd be happy with a coke instead.

In your DD's case I think definitely at the beginning I'd tread very gently with her (and telling the older children they can have what they like when she's out but not when she's there sounds good) and avoid any treats she can't have. But I wouldn't worry so much about more basic foods like cereal etc, and just try to find an alternative she'll enjoy.

DS1 has always taken his own lunch to school (you can buy a special food thermos if you want her to take a hot meal) and always takes his own food to parties and playdates.

The whole thing is so overwhelming at the beginning but you'll gradually work out what foods are ok, and it does feel easier once you are well stocked with those.

Porridge often fits the bill ( most coeliacs can eat oats- if not can get a special kind)

Look on ocado, you can mark of that you want it to be xyz free which may help a little

Find say 2 breakfast, 2 lunh, 2 dinner, 2 snack staples first. It will allow you to be confident that you have something for every occasion. You can then try to research and add one meal a day until you have a huge list.

Easiest way is to eat a lot of natural unprocessed ingredients as less in hem for you to have to read. Roasted root veg is a big hit and good way to get lots of vitamins in they may be missing elsewhere ( parsnip, beer root, potato, sweet pot, butternut squash, carrot etc)

In our house most foods that can't be eaten just aren't brought into the house. So if for example one Hume has no allergies they will be given same food as one who does, but if out without allergic child can have whatever, same as if visiting or if at a restaurant. I just think its mean to forever saying ' no you can't have that chocolate/ yogurt/ bread', when they can happily have homemade muffins that are suitable for both and a smoothie

Also... Batch cook and freeze. Ie make a gluten/ dairy free banana bread. Let cool and slice individually, wrap and freeze the. You can just add one in the morning to lunchbox and will be thawed by lunchtime. Or jut cut loaf in half and freeze half, eat half over the next few days, the. You can take other half out later in week and will be fresh

Saves baking every day

Thanks. Germany seems to be v. far being UK in terms of coping with allergies, but I our local supermarket does have a few lactose free products. Interesting to hear about the lactose/fructose intolerance improving if the coeliac is brought under control.

Will feel calmer once I have a def. dx for me and for her and I can actually get started. In limbo really and facing a scary situation without actually being able to start tackling it. That's part of the problem iyswim.

Anyway, thanks for info, v. useful.

ps I guess I'll just have to make each decision based on merits. So I decided not to buy any more breakfast cereals, because dd would be gutted to not be able to have say cini minis while db tucking in, and I thought drama at breakfast I could do without, plus these breakfast cereals are crap anyway so I'm happy for the boys to do without too. They were fine with it and everyone had porridge. I know she has to get used to it, and I think she'll miss out enough, so I got the boys pizza and stuff for lunch so they can have what they like, just while she's not here. It won't work every time, but I guess I'll have to learn to walk the tightrope sooner or later.

Just wanted to check that your DD is still eating gluten until she has had all the tests because this is very important - the test results will not be accurate if she's not eating gluten regularly. Has she had blood tests yet? Is she going to have a biopsy?

Thanks so much freeform and all of you. It's such a big help. She and I have both had the blood test, hers was negative mine was positive. I am due to have the biopsy next Thursday. Her specialist has ruled coeliac out based on her - result, until I told her my blood results, and in view of those is considering the possibility she has a false negative.

I have posted her my results and hopefully speak to her tomorrow. Thanks to wonderful mnetters I have learnt not to alter our diets until the biopsy (I'll ask tomorrow if they will do one on dd.

It will be a relief to have them done so I can finally get started instead of facing the daunting challenge but just looking at the mountain and worrying instead of being able to take a few baby steps and feeling better as no more gluten, and feeling more confident.

Thanks for the other tips. I'll have to try and get hold of a fridge freezer so I can freeze stuff. Unfortunately, as she stands at the moment, she couldn't have things like those roast veg as most of them are high in fructose (and sweet veggies like carrot, parsnip, onion, peppers, beetroot).

I used to cook them all the time :(

Soemone did tell me that last/fruc int. often a sign of coeliac(which is what specialist is thinking) and if we get her on the coeliac diet, her lac/fruc symptoms might ease. God I can only hope

Does sound like your DD's result could be a false negative. Good luck for your biopsy and I hope you both get a definitive diagnosis asap. And yes, lact/fruc intolerance can be a secondary symptom of coeliac disease which normally goes away once the gut has healed on a strict gf diet so I really hope that's the case for your DD.