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 !

Just wondering if anyone has any recommendations of all inclusives abroad that cater for coeliacs, dd has been coeliac for last 3years, we also have ds 4 yars old (not coeliac) travel companies are rubbish when you ask for advice and just try to flog you a gluten free meal on the flight!! any experiences good or negative would be appreciated. xx

Hi - no personal experience of all inclusive holidays abroad but having just been to Spain, I was really impressed with how clearly everything was labelled and how clued up the restaurants and cafes were.

This message board is really helpful so you might get some good info from it here

We haven't tried staying in a hotel since the DDs were diagnosed. We always go self catering, which is obviously less of a holiday for me, but makes life less stressful. We try to eat out as much as we can - steak/chicken/ham and egg with chips .

Agree with DottyDot re Spain - we went to Majorca last year and everyone was very aware of coeliac/gluten free. Everything in the supermarkets was labelled, the restaurants were aware and happy to cater for the girls and even the laminated signs showing pictures of ice lollies and ice creams had 'sin gluten' marked on the ones they could have. We're going back this year .

We are risking AI this year, luckily my DS will eat salad and meat till it comes out of his ears so if all else fails thats what he will live on !

Out of interest notapizzaeater, what will your DS do for breakfast - will you take cereal with you for him?

Two of mine would be quite happy on meat and veg for the week, but one is verging on vegetarian, which makes life a little more difficult!

Hi - just to say I always take my own cereal with me - everywhere I go either staying away in the UK or abroad. Couldn't do without my Doves Farm g-f cereal in the morning so it's one of the first things that always gets packed!

tkband3 - he is really fussy with gf breakfast cereal and eats continental now - at home he normally has some cooked chicken breast/cheese/ham so I'm hoping it has that sort of stuff failing that he will have fruit .....

Great news regarding spain, we are now braving Menorca in the summer, going to take cereal and bread, hopfully we will be ok. We went self catering in portugal last year, and I really did'nt feel like I had much of a holiday but the stuff in the supemarket was really well labelled. Thank you everyone, do you think we can keep this going to swap info on holidays? It's the first place anyone has replied to anything? loving mn, xx

Hi sb coeliac disease is not strictly speaking an allergy but autimmune disease that affects the small bowel.

I'm travelling to Portugal this next month with my 4yr old ds - anyone know if its as good as spain? I'm also nervous as first trip abroad since diagnosis. I've heard Italy very good for coeliacs

ah daxy missed ur mention of Portugal - that's great!!!

hi missdeelite, we took one of those dietary alert cards, and were amazed how many places we could eat out at, the staff were brilliant and even the restauraunt guys thought they were a good idea so that nothing was "lost in translation" xx

We've just had a delivery from this website. We got the tiger bread, sesame seed bagels and multi-seed boule which are all excellent. We also got the soft white loaf, the poppy seed one, the sandwich rolls which are in the freezer awaiting their taste test! The jam iced fingers were loved by DD1 (who has a very sweet tooth) as was the victoria sponge, but they were ridiculously sweet and not worth the money - I can bake better!!

My DS will only eat the bread from here. The sandwich rolls are fab, and defrost fine.

few of us cobble an order together and share the postage.

They are soon going to be do sausage rolls, steak bakes, pizzas etc, DS cant wait !

The ready made pastry is good as well ....

I'm new to this thread and haven't read all the previous posts so I may be repeating but here is my story!

dd1 had positive blood test in feb after weight loss we were told by GP to start gf immediately and the blood test was diagnostic we were referred to consultant pead who basically said she's a healthy normal child with ceoliac and as long she follows gf diet she will be fine. He told us to google any questions

Oops posted too early there I'm new to mn and currently being jumped on by 2 year old and screamed at by 9 week old will have to finish later!

Hello Lawabidingmama and welcome! I'm quite surprised by your story as most doctors in the UK will not confirm a diagnosis of coeliac disease without a biopsy which can be problematic for those like my DD who's blood test was so high that consultant was 99% certain but we still had to make her suffer on gluten for another 6 weeks until the biopsy :( Sounds like your GP & consultant are a bit more flexible than most!

Have you had an appt with a dietician? If not, you should push for this as I think it's important to get advice on providing a balanced gf diet.

Arhhh just lost huge long post! At least I enjoyed the therepy of getting it off my chest!

Where was I ...so pead was most unhelpful and told us to google our long list of questions we were referred to a dietician but took 3 months to actually see her!

In the meantime we went strictly gf with dd and in fact are practically gf as a house. Dd1 at 2 is our eldest so no older dcs to complain about the change! We still have our cereal but other than that were gf! I feel this is important for dd due to risk of cross contamination and as she will spend her life checking what she eats I want home to be all safe and for her to be able to eat the same as the rest of family which I think is important for food relationships iyswim

so dietician confirmed that the diagnostic test is the biopsy and had referred us to gastroent after 3 months of gf and having seen such a dramatic change in her we are almost certain we won't be going down biopsy route, with positive blood test and greet response to the diet what else could it be? I will not be giving her gluten for 6 weeks or putting her through the procedure, otoh it's such a life changing condition we need a definitive diagnosis?! Our feeling is to carry on as we are at such an important developmental age and maybe revisit the biopsy option in the future.

Anyway the change in her is amazing she put five pounds on in the first six weeks is getting three teeth loads of hair has rosey cheeks and tonnes of energy! She now loves her food and eats all sorts, she was previously a nit of a nightmare at meal times which I now know was down to her sore tummy :( I feel sick to think of her suffering pre diagnosis

I found gf eating fine I love to cook have mastered cakes biscuits pizza etc the knorr stock pots make a lovely gravy so far I've adapted all our favourites :)

My aim is for her to enjoy food and feel as normal as possible we had a gf party for her 2 nd birthday with lovely cupcakes pizza pombears and a gf minnie cake!

Hello Lawabidingmama and welcome! I'm quite surprised by your story as most doctors in the UK will not confirm a diagnosis of coeliac disease without a biopsy which can be problematic for those like my DD who's blood test was so high that consultant was 99% certain but we still had to make her suffer on gluten for another 6 weeks until the biopsy :( Sounds like your GP & consultant are a bit more flexible than most!

Have you had an appt with a dietician? If not, you should push for this as I think it's important to get advice on providing a balanced gf diet.

Hello freefrom thanks for the welcome :) think we cross posted! It was the GP who diagnosed she's lovely and I'm pleased but also feel like we've been left to deal with this alone? Hopefully now we've seen the dietician we will get more help, she didn't really tell us anything we didn't know but is helping with sorting the prescription and has put us in touch with the local ceoliac group she was very apologetic about the peads response and the length of time it's taken to see her. Not acceptable for a 2 year old I think as it's vital we get her back on track it's a good job were conscientious parents and did our research straight away!

Didn't realise that my previous post somehow posted twice - oops! Glad to hear you've seen a dietician and that your DD is doing so well on the gf diet. Also good to hear that dietician is going to sort out prescription as most are told that without the biopsy they can't have a diagnosis of coeliac on their medical records and therefore can't have gf products on prescription . Sounds like you've got everything pretty much under control!

Welcome lawabiding - my DD was diagnosed this month just through bloods - the European guidelines now say that if the TTG is high enough and the genetic blood tests are positive you can diagnose without - it's mainly in adults where lots of other conditions can mimic the disease that they now need biopsies. The professor (who contributed to writing the guidelines!) told us to go GF before the second blood test as the results were so conclusive (although it's now come back very positive again). She was also low on iron, vit d and folate all of which fit with CD (does anyone call it that? just so dull constantly writing it longhand!).

My DD has put on nearly a kilo in less than a month ! I honestly can't believe how much she was being poisoned by gluten. We too are still waiting for the dietician's appointment but they rang me and sent me the stuff from coeliac uk (which I'd already found and joined). Not seeing paeds again for 3 months but I feel okay about that- nothing really to add i don't think.

Am mightily impressed you've mastered cakes etc -haven't attempted yet but is next on my list. I'm wondering if the speed-reading skills we develop for looking at labels will be of great benefit to our brains!

Yellowhouse any news yet? Great news about your DD's exam! Supermum you!

Hello pelvic so pleased to hear your dd is also thriving on the gf diet :) I like your abreviation I will be adopting cd as I always spell it wrong!

I walk down the bread ailse in tesco now and feel like I'm surrounded by poison!

The cakes were easy I just follow a usual cake recipe substitute the flour for doves farm self raising add a tsp of xantham gum and half cup of milk as the flour is more absorbant!

Does anyone else have dcs at pre weaning age? My dd2 is 10 week I intend to wean at 26 weeks as I did for dd1 I will keeping her gf as we eat gf now anyway but I figure she will need tested for cd so will need to be eating gluten for that?

The recommendation for babies is to introduce gluten as normal during weaning even if there is a strong family history of coeliac disease. If they start to show symptoms then you can get them tested but the advice is always not to exclude a major food group unless there is a clear clinical need to do so. I'm pretty sure there are guidelines on the Coeliac UK website.

Ernest and others who have had difficulty getting children diagnosed by sceptical doctors you are not alone. I had an allergy consultant last week refuse to test DSs for wheat/gluten sensitivity because 'they looked OK' despite a referal by my GP and correspondence form a coeliac/gluten sensitivity specialist.

Luckily my coeliac/gluten intolerance specialist is on my side and he went balistic when I told him what had happened. He got me another appointment. Keep pushing. I just don't get it - this condition makes people very very ill but too many octors just sort of shrug their shoulders and make stupid comments like 'you dont seem underweight'.