New coeliac/ gluten intolerance support/ top tips swaps thread <insert funny title here>

[Pelvicflooragogo]

We're day 1 of GF life for my DD who was diagnosed yesterday aged 2 after a winter of constant colds and losing weight, grumpiness and loads of other hallmark features.

We're feeling mush more positive about it now we know roughly what we need to do but already wondering how to manage breakfast cereals and how to get her iron and zinc supplements into her as she won't accept anything that doesn't look like what she's used to. Have ordered a big online shop and joined Coeliac UK and quite excited about getting a hopefully happier little girl as she's been a littleshit tiny dictator since before christmas. Thought it was just terrible twos!

All welcome !

Hi Pelvic - glad you know what's going on with your dd - that's half the battle!

Where in the country are you? Only to say that if you're near or ever in Manchester, Dough Restaurant here is an absolute wonder - does the most amazing gluten-free pizzas, dough sticks, puds - as someone who was diagnosed as Coeliac 6 years ago this place has been a real find for me . I don't take my own pizza bases into Pizza Express as I don't trust that it's actually gluten-free - I can't see how it can be when you can see their cooking areas and there's flour everywhere, but Dough is great and I've never had a reaction there.

Another place near Manchester for fantastic fish and chips is Fosters - here. They used to have a gluten-free cooking day once a month but it's been so popular it's now every Sunday.

Wherever you are though you'll find places like this that do brilliant g-f food that's lovely for a treat .

I'm also on a coeliac chat-type website obviously not as good as Mumsnet but I can't find it on this computer - will have a look tonight and send you the link as it's really handy for picking up tips about local restaurants etc.

If you go abroad you can get an app which translates "I am coeliac and need gluten-free food" into lots of different languages - we went to Spain a few weeks ago and I was quite nervous but actually found them to be way more advanced than the UK in terms of labelling food and restaurants being clued up as to what Coeliac is.

Loads of expertise on MN about being Coeliac - I found the allergies section really helpful when I was first diagnosed.

Hope your DD feels much better soon!

ooh - pick and mix at the big cinemas is all labelled so not a problem - I tend to go for wine gums and midget gems!

Other than that, Haribo will become your best friend (I am a sugar/fruit sweet addict and pretty much inhale Haribo...)

You will get lots of help here if you have any queries: members2.boardhost.com/glutenfree/

The archive of all the useful information and recipes is here: coeliac.proboards.com/index.cgi

By the way someone mentioned giving your daughter gf oats - oats are not recommended for coeliac children.

My son is both coeliac and allergic to gluten and milk, and intolerant to egg - and I still bake cakes etc.! It's amazing what you can adapt when you try. You will soon do everything automatically.

One important thing is to avoid cross-contamination in the kitchen. As other posters have said we all eat glutenfree when possible - I've adapted all our favourite meals. It saves time, makes the coeliac feel normal, and avoids cross-contamination problems. I use Dove's Farm for all baking etc. - great results and avoids wheat flour floating about!

If your daughter likes toast then she must have her own toaster. Get everyone used to using only a knife or spoon which hasn't touched their bread for butter, spreads and jam (or have a separate, labelled, one for your daughter).

Parties are not a problem if you send your DD with highly desirable looking food - DS was often asked for some of his food!

It does seem daunting at first but soon it's just part of what you do!

Forgot to add - when your DD goes to playgroup you will have to make sure she has gf playdough.

I didn't find dietician especially helpful, OP, (though she was nice, and reassuring) as everything she told me I'd already picked up from Coeliac UK and here. Including no oats, even g-f ones for DS for the first year of g-f.

Xanthan gum - I bought mine from Amazon, though I think you can get it at Simply and other online free-from type shops.

Found out this morning that DS1 has put on 3lb! Fantastic since he has been the same weight for about 18 months prior to going g-f. He is very pleased with himself.

I made g-f scones with a Glebe Farm mix this weekend - they were really easy, yummy, and none of the adults thought they were g-f (and kept trying to stop DS1 having one!)

Btw, I have just rung the helpline on the Calpol website after reading elsewhere suggestions that Calpol has gluten in it. They said that it doesn't contain any gluten, but that they can't guarantee it couldn't have come into contact with any gluten at any point. Legal disclaimer, I suppose - they are soooo tiresome. Why can't companies just take responsibility for making sure their products don't have gluten in them.

Doves Farm is great for cooking with - cup cakes, lemon drizzle cake, biscuits (with rice flour which is also great) all tested in our house! We all tend to eat gluten free except for the odd night when ds's will have fishfingers/pizza and me and dp will have something else. I have separate g-f pasta though - too expensive for us all to have!

I don't have my own toaster - our kitchen is teeny and even another toaster would take up too much worktop, so I use these which have been a lifesaver - I use them for bread, pitta bread and so far so good. Other than that I was generally not having toast or using the oven grill - I always put a bit of foil down for me - even if the grill's clean.

I have my own butter and jam and ds's have got used to not using my stuff.

If we have parties/get togethers, I have my own houmous and dips in little pots that no-one else dips their breadsticks in - you get used to thinking ahead and separating out stuff to keep the risk of cross-contamination to a minimum.

We are definitely oat free for at least a year and then may cautiously try to reintroduce depending on how things are going. Will definitely look at those boards - thank you flaming. The prof said we don't need to go for new toaster etc currently - depends on how DD does and how sensitive she is to gluten as there is a spectrum. Do we really need GF playdough? She doesn't eat it so not sure how it would be a risk? Am I being thick?!

wolves that's so exciting!! Well done you - I have just ordered scales for the first time in my adult life as I'm desperate to be able to see the difference week on week.

Dotty those restaurants sound amazing. I'm based near Warwick so might be a little far! The Big Wide World does seem a little intimidating at the moment in terms of eating out.

Yes the big wide world can definitely feel daunting - and although things are much improved, it's still a bit scary when you're out and about and nowhere seems to have anything much in the way of sustenance...

If your dd eventually gets diagnosed as coeliac (is she having a biopsy?) then there isn't a spectrum - it's totally gluten-free I'm afraid, so toaster bags are a good alternative to separate equipment. Not sure about gluten intolerance though (as opposed to being coeliac).

We've got friends in Birmingham - will ask if they know of anywhere that does g-f goodies. Mostly I tend to carry around g-f snacks in my many bags so if I'm really stuck I've got some g-f biscuits and Haribo of course to keep me going

ooh I've not been here but this looks like the kind of place I'd probably organise a day trip around! (it's possible I'm slightly obsessed about finding nice g-f places to go to...)

Pelvicflooragogo - I am concerned your Professor said your DD didn't need her own toaster. Yes there is a spectrum of how badly coeliacs react to contamination - i.e. degree of pain and severity of visits to the loo. However, all contamination should be avoided because any gluten at all can cause intestinal damage in a coeliac and over time this has long term health implications.

Yes I agree with Flaming who's put it much better than I did! For instance I have no physical reaction to having gluten (hence no diagnosis until I was 37...) but it's just as bad for me to have gluten as someone who has very bad reactions - it's the damage it's doing to your insides which will be the same. So I have osteoporosis and can't absorb iron but you don't 'see' this effect as my stomach's always been fine.

Anyway, best to be on the safe side anyway and try to avoid all cross-contamination. Deep joy...

We have a separate toaster for gluten free bread and I buy separate butter and all other spreads that go on bread. We share a squeezy marmite.

I also use separate baking trays, bread boards - wood holds onto crumbs more than metal, so I also use separate wooden spoons for cooking.

When we go on holiday, I take toaster bags so we can share a toaster, but I don't find them practical to use every day.

Oh and g-f playdough is a must for little ones - it's very easy to make. (I gave our nursery and school this recipe and they used to make it with the children as an activity.) As it says on the coeliac website, it's not just that they eat the dough itself, it's the licking of fingers after playing with it which can have an impact - you know how it gets stuck under your fingernails...

Blimey. Thought I/ DD might get away with all of that palaver. Each time I find out something else that's going to be different for her I mourn again. Just when I feel real positive. Finding the emotions of this really rollercoast-y. I don't want this for my daughter... I know there are loads of "yes but"s and positives etc but ultimately it's going to have a huge effect on her life and mark her out as different and I can't help but be sad about that.

Just spoke to dietician who confirmed what you all said. Bit annoyed the doc said differently - makes it quite confusing about whose opinion to trust. So yes I do see what you mean about GF playdough too. Deep breaths...

I think that what your professor said is not entirely untrue though.

I think the general rule for all coeliacs is to avoid all gluten and all contamination to be on the safe side. However I have also been told that each coeliac have different tolerances, for example codex is fine for most people but not others and so contamination can affect some but not others.

The problem is that you can't tell whether it is having an effect as you can't see your gut so you can't tell whether from your symptoms as some people don't have symptoms at all. Which is why is best to go completely gluten free.

deep breaths indeed... I know exactly what you mean about mourning re: the differences - and mine's for myself so self pity rules! Doesn't matter how many g-f things the shops bring out, it's always going to be an extra challenge, one more additional thought you and your dd have to have and that's a real pain and (I found) quite depressing when you're first diagnosed.

I remember going to Tesco with dp a few days after I was diagnosed and I walked up and down the cereal aisle sobbing . It's Not Fair to know you (your dd) can't eat the vast majority of a lot of stuff in major supermarkets so take some time to wallow and be cross! Then I discovered Doves Farm gluten-free corn flakes and life was good again . But it's OK to feel pissed off/sad about it - I still do from time to time when my work colleagues decide to go for afternoon tea (as happened recently) and I went and had a cup of coffee while everyone else had marvellous cakes....

I've found my consultant quite uninformed re dietry issues, and tbh the dietician is nice but didn't give me anymore info than I had found for myself. Seemed more like she was just checking on how we are minimising gluten contamination, and said it sounded fine. Knowledge is power - the more you know the more relaxed you can be and the more you can enjoy day-to-day.

Yes OP there are moments I get emotional on ds behalf, but he has adjusted remarkably well and I think if I stay upbeat it helps. It takes organisation and extra work, but you can eat very nice food! Also helps that he has a friend with several allergies. He really looks up to this boy, and it helps him to hear 'yes its a shame you can't eat that. Lots of people are 'allergic' to different things, poor Ben can't have chocolate'. To my son, nothing could be more distressing than that, and he counts himself lucky!!!

Also quick big up to Leon chain for those in London - great gluten free, child friendly FAST FOOD that is also healthy!!!! Wish there were more branches. Was in there today and have won a recent battle about labelling so you can now clearly see what is gluten free/dairy free etc!

pelvicfloor you can get Doves Farm xanthan gum in Tesco or Waitrose in the free from aisle. Glad the biscuits worked out!

I made pizza dough for the first time today - very long list of ingredients as requires lots of separate flours rather than using a blend, but it was AMAAAZING - I say that as someone who hasn't had pizza since I was diagnosed!

Hi Everyone,

I have just posted this thread under Children's Health but I guess I might get more advice here.

Basically my 3.5 year old daughter has a grandmother with coelaics and also has a lot of symptoms: recurrent stomach pain, soft pale stools, poor immune system, recurrent mouth ulcers etc. These symptoms have been around since babyhood. When she was 2.5 she had a blood test for coealiacs but it was negative. The symptoms persist. I wonder how fool proof the blood test is. Should we push for another referral or assume its just coincidence that she has a family history and many symptoms?

I also wonder whether any of your children with coeliacs have had slow or poor hair growth. DD is 3.5 with the hair of a 6 month old. My MiL had alopecia before her coeliacs diagnosis and her hair growth got much better on a gluten free diet. She therefore thinks that DD's poor hair growth is another sign that she has coeliacs. Has anyone ever heard of this as a symptom?

Many thanks

You can always get a false negative test, certainly worth repeating blood tests first of all. Or could it be something related like lactose intolerance?

Good luck!

Nice to know other people react the same way Dottydot - am feeling better about it now. As my very pragmatic DH says it's just another very minimal adjustment in the grand scheme of things.

ps Aubergine my DD has fluffy hair and I'm wondering if it'll change but I think alopecia is another autoimmune condition which is related to having coeliac disease anyway.

Yes it's worth asking for a repeat blood test but be prepared for a possible battle! The doctors were very reluctant to test ds, even though I had been diagnosed and we thought it possible he was also coeliac - he had had a degree of lactose intolerance as a baby and was constantly tired, dark circles under eyes. Was a real fight to get him tested and the doctor put something fairly scathing in the letter about me being an anxious mum... It came back negative - that was 6 years ago and so far, fingers crossed, he's not showing any signs - in the meantime he's had his tonsils out which worked wonders for his sleeping and energy levels so we won't ask for another test until either he's a lot older or we think he's developing symptoms.

Good luck - hope you get another test sorted out soon.

Hii aubergine, poor hair growth is a known symptom of coeliac. I'd be very suspicious I'd push for further tests. Quite a few people I've heard of have false neg blood tests and the biopsy of small intestine is only conclusive proof of coeliac. Good luck.

aubergine - sounds like your DD is in a similar situation to my DS2. His older brother has coeliac, and DS2 is showing a lot of symptoms (bloating, iron-deficiency anaemia, lethargy, irritability etc.) But his blood test came back negative. He's not quite three, and I have read that in young children, false negative blood tests are more common, because their immune systems aren't fully developed and they don't make enough of the antibodies to show up in the test.

The paediatrician agreed to refer him to a paediatric gastroenterologist to discuss a possible biopsy despite the negative blood test. We're waiting for the referral at the moment.

If they refuse to do a biopsy, then I will put DS2 gluten-free like his brother, and then do a gluten challenge when he's about six or so, and a new blood test then.