GP rang earlier to say daughter has Coeliacs. Tell me it's not the end of the world.

[WorriedMumUpset]

GP rang tonight 11 year old daughter blood test came back strongly strongly positive (normal level less than 19, hers over 10 thousand) for Coeliacs. She is being referred to consultant. I am feeling shocked and worried for her.
Please tell me it's ok (no negative stories PLEASE)
My immediate worries are some serious some that might seem trivial like how serious is it? Can she still bake cakes - something she really loves? Is the food horrible? Will she like the food? Can she have pizza like her friends (silly I know but means a lot to her for various reasons) Is it expensive? What are the consequences?
I haven't dared to brave the internet yet for fear of seeing negativity. Thought I would ask for some support here. I guess we will have to wait a while to see the consultant so I didn't feel like looking on official sites. GP said we must carry on with normal diet until we see consultant and I understand it's essential to confirm diagnosis whilst she is still on normal diet but otherwise I don't know much.
I am feeling really upset so please nothing negative.

Well I didn't get much sleep but thank you so much everyone as you all took away the panic I was feeling last night! Feeling much more positive today after all your kind advice - thanks so much.
I have braved the wider internet which was actually not too scary and also quite positive. I looked at a few websites of restaurants and Tesco's and saw all the stuff you can get gluten free so I will show DD today (not going to get any until seen by consultant).

I have a few more questions if anyone is able to help.
Any idea how long the wait is until she might see paediatrician?
After you see paediatrician do you go gluten free straight away? Do they give you info at that appointment?
Did anyone's child need a biopsy or is it always blood tests nowadays?
Thanks fir the very helpful advice they will need separate things like separate toaster, butter etc because of risk of cross contamination. Do you need things like separate plates/cutlery?

I am also thinking that the irritable bowel I have had since the age of 14 is maybe coeliacs. I have had terrible mouth ulcers since a child, I have such bowel problems I have sometimes had incontinence if I can't get to a loo straight away and my stomach is always gurgling. I have been tested for coeliacs but all it showed was iron deficiency. Since doing some research last night when I couldn't sleep I saw you can be coeliac without testing positive for the antibodies.
It may turn out to just be irritable bowel after all but I would quite like it if I was coeliac so I could help DD by going gluten free with her

Also another question sorry! With rubbish timing she starts secondary in just over a week. Should I tell the school? Or wait until she has seen consultant? GP said her diagnosis was definite with such high levels on blood test.

Thanks so much to everyone who has taken the time to read this and answer.

My son, 9, was diagnosed with coeliac last week. His test results came back at, less than 500, I don't remember the exact figure.
The pediatrician said that they didn't need to do a biopsy at that level.

It only took a few weeks from the blood test to see the peadiatrician and then we saw the dietician immediately afterwards. In about four months time he'll have another blood test done to see if that figure has reduced.

If all that sounds a bit wooly, it's because the diagnosis came as a bit of a shock and it was hard to absorb all the information at the time.

Checking for coeliac was supposed to be just a way to discount it and find out why he had an iron deficiency, he didn't have many symptoms at all. It's a steep learning curve but I can recommend the Warburton's bread.

How about a list if things we like and don't like? It will help op when she starts shopping and maybe some of us?
I like -old El Paso white corn tortillas from sainsburys, scharr (I think) waffles. Don't bother with the specifically gf f tomato sauces-Heinz has the gf logo. Real Yorkshire puddings from morrisons. Identical to non gf (with the sausages and other fresh yorkshires) All morrisons sausages are gf. The own brand posh biscuits.
Don't like-warburtons crumpets, genius bread.

I don’t have separate butter or jam etc. It would cost a fortune. Everyone in my house just has common sense and doesn’t double dip - they use a clean spoon to get some out of the jar and don’t put a dirty knife back in to contaminate it.

Separate plates and cutlery aren’t usually required. If that was the case you wouldn’t be able to eat in a restaurant!

My son had to have a biopsy. We went private because he was home for the Christmas holidays and were worried about time running out before he went to university. He didn’t seem bothered by it. He insisted on going GF as soon as he was home from the appointment.

I advise having separate butter or spread even if you just cut it in half and put one bit in a separate container. Visitors don’t understand sometimes.

Frankly the actual food is not the problem. It is the cross-contamination from gluten, I find. Someone puts normal bread on a plate and takes it off. Perhaps there are no obvious crumbs so the coeliac person doesn’t realise and uses the plate.

Hello, my DS aged 9 was diagnosed in March this year.

Big shock but he and we as a family have adapted so well.

Firstly my son did not have a biopsy he had a DNA blood test, much kinder on younger ones, so ask about this rather than the biopsy.

Secondly each direct member of your family should have the normal blood test too. So you, his dad and any brothers or sisters. From this we discovered my DH is coeliac too! A life time of blaming IBS so since he had this confirmed via biopsy in May he is also gluten free now.

Important do not go gluten free until your daughter has seen the consultant, this killed me as I could see I was giving him food that was hurting him but they need gluten to be present in case they do the biopsy.

So the food range is amazing so much better than it used to be! All supermarkets have a basic range we prefer Asda and we like the Warburtons bread. So many foods are gluten free anyway and you just don't have noticed before!

Brands/ items we like are

Seabrooks
Pom bears
Metcalfs popcorn
Kettle crisps
Wispas
Twirls
Rice cakes
Heck sausages
Goodfellas gluten free pizza

Meals out, restaurants we love..

Prezzo
Pizza express
Toby carvery
Harvester
Brewers fare
Ia tasca
Giraffe
Frankie and Benny's

Remember your DD under the new prescription guidelines is entitled to gluten free bread or flour on prescription I believe 15 units (it changes with age) this could be 15 loads a month or 7 boxes of flour mix

Glutafin
Juvela
Warburtons
Genius

All provide bread and/or flour on prescription the top 2 provide a gluten free sample box for free if you register.

Search google maps for gluten free in your area I found a lovely bakery which just makes gluten free food! Great for a treat!

Last and most important join coeliac UK it's amazing and it costs us £1 a month and the app is fantastic it has a scan function where you can scan any barcode and it will tell you if it's safe or not!

We bought a bread maker with a gluten free setting, my son loves making his own bread! And we also bought a new toaster just for him to use to prevent cross contamination

My DS and DH have a whole separate cupboard with all there gluten free bits in

Any questions feel free to PM

My friend was diagnosed in her late 20s after years and years of feeling unwell. If it doesn't sound too flippant the good thing about being diagnosed younger is that she has time for it to become her new normal?

My friend really rates a gf pizza mix by Isabel's. I've used it myself and it does make a lovely base. Easily available on amazon etc.

Wow I am so sorry my paragraphs have vanished!!

Also yes do tell school, my DS had to go on packed lunch as the school options were poor jacket potato everyday or I could send food in for them to heat up! He wanted packed lunch anyway

We have had one instance of another pupil touching his food with there own bread and finding it funny, this was very seriously handled my the head teacher and a lovely talk was given to all pupils about allergies and coealics

I would recommend sending some gluten free treats in to the teacher just 2 or 3 although my son is still at primary we sent in a few packs of skittles just in case there were any treats given out in class, so he could still be involved

Great leaflets for school from the coeliac UK website

Sorry back again!

Search free from show or gluten free shows

The free from team do massive dedicated shows each year

The next is in Liverpool in November but they host in London and Scotland too

Lots of local shows as well

several members of my wider family are Coeliac. It wouldnt surprise me at all if you were Coeliac with the symptoms you describe, only two out of my 5 family members with CD were diagnosed because of blood markers.

We have gluten free as our 'default setting' so the small special cupboard is for 'normal' biscuits/ bread when we have them in.

We have rules about double dipping in butter etc and one particularly sensitive family member has toaster bags to use in the toaster.

Its very easy to adapt most things. Most of the supermarket own brand GF pastas are virtually indistinguishable from the proper stuff.

Things like jars of lasagne white sauces etc are usually gluten free so I use them for making things like cauliflower cheese, potato gratin and lasagne rather than making a flour based white sauce.

Most sausages are gluten free.

We really like the new 'Promise' range of bread that we can get in Sainsburys. The white bread rolls aren't too far off proper bread and are perfectly edible for pack lunches etc.

We also like the BFree pizza bases that you can get in Asda and Sainsburys.

Asda's gluten free onion rings are AMAZING and their own brand gluten free flour is in my opinion superior to Doves (the main GF flour brand)

You can buy gluten free JusRol puff pastry for things like sausage rolls/ cheese twists etc.

Close family member has been coeliac since childhood, it's just part of her life now, she says she enjoys the food and can't remember what normal foods taste like. It's like second nature to her that she'll check the labels before eating something but it gets easier to know what to eat without checking. Back when she was first diagnosed there wasn't much choice of alternatives for things, but there is so much out there now. She says she honestly doesn't miss what she can no longer have.

Also not sure if this has been mentioned but Dominos does gluten free pizza.

Remember your DD under the new prescription guidelines is entitled to gluten free bread or flour on prescription
Not necessarily. It depends where you live. About a quarter of the country offers no gluten free food on prescription. And some other areas offer prescriptions but restrict it to 6-8 items per month. There are very few areas that still offer 14 items per month! Plus don’t forget it’s at the GP’s discretion - any individual GP is within their rights to refuse to prescribe any gf food at all. (Of course you’re within your rights to switch to a different GP who will prescribe it)

OP I’d suggest finding out how many gf items per month are permitted in your local area, find a GP who will prescribe the maximum and don’t be fobbed off with accepting less (some GPs do that to keep their budgets down).

Thanks bigbluebubble, yes I should have said only in certain areas, and now following the new guidelines if you are entitled you can only order bread and flour mixes

I am very lucky that my area and GP support gluten free prescribing, the cost of gluten free bread I consider to be very high.

We use own brand products so a normal loaf is around 55p to us verses a gluten free loaf (and they are small sizes) even the cheapest is around £1.89 a loaf (Asda free from range) Warburtons and genius are around £2.50.

So I am very thankful i can get a gluten free prescription for my DS and DH

Join Coeliac UK they have masses of information and also an app that allows you to scan barcodes when shopping to check if they are gluten free. See: www.coeliac.org.uk/join-us/

Re your queries on next steps re diagnosis I would call their helpline (office hours) and they can discuss things with you. They have a section about coeliac disease and children on the website: www.coeliac.org.uk/coeliac-disease/coeliac-disease-in-children/

Key to make sure you dont change her diet and go gluten free until all the tests have been done... otherwise will have to go back on to gluten. Also worth you being tested too.

Jane Devonshire the winner of MasterChef a couple of years ago has her first cook book out next month pre order on Amazon which is all gluten free! her son has coeliac disease. It's called hassle free gluten free so loads of ideas for cooking.

Good luck, it may feel like a huge change but amazing how you will pick things up and any questions do ask!

It’s most definitely not the end of the world and it’s just shock your feeling.

On the plus side you’ve got a diagnosis which is good, and once she follows a gluten free diet she will start to feel so much better.

My Dd was diagnosed at 13, she now 15 and like your dd her results were so high for coeliac they were in fact shocked at how high they were and put her immediately on a gluten free diet before seeing her.

The main thing to remember read every ingredients on packaging and in particular cross contamination with non gluten free foods.
It will take you a while to get use to it, but as time goes by it becomes easier.

I’m lucky as my Dd is a very good eater and a lot of the meals I cook for the whole family are gluten free and to be honest you can’t taste the difference.

My Dd also loves to bake cakes, some are trial and error, you can get some gluten free cake mixes which are good, and we also buy gluten free pizza bases (Schar) and construct our own, or pizza express sell a gluten free margarita pizza in Tesco which my Dd said is lovely though more expensive at £5 but good for a treat.

Gluten free food have come down in price but still more expensive than normal range of food and things like biscuits you don’t get as many in a packet, I suspect this is to keep the price down.

Take a look in the free from aisle in the supermarkets to see what’s on offer, but I would say the only really bug bear is eating out, Pizza Hut do a gluten free pizza and some fish and chip shops offer gluten free option but it’s more difficult if you want to grab something quick, not impossible but takes more thought.

My roast dinners are all gluten free, sausage and mash, and I make my own scotch eggs even though M&S do some good ones, and where we live we’re lucky enough to get gf bread and pasta on prescription so you might want to ask your consultant if that’s available in your area.

And read as much as possible on the subject.

Just another message of support to say it feels really overwhelming to start with but within a few months it will become your ‘normal’. Get the Coeliac UK app in your phone and you’ll soon start to learn which ‘normal’ foods are GF (eg crisps/chocolate/sauces/cereals etc) without having to rely on stuff in the free from aisle (which are more expensive). We changed some of the ways we cooked, eg more meals based around rice/potatoes instead of pasta/wraps/pastry to make it cheaper. Lots of support online, Facebook groups can be helpful I’m on a children with coeliac and a fish and chips in the uk group and both really supportive. I’m a keen baker, some good GF cook books out there and stuff online, it takes a bit on experimenting but a couple of years in and I have found my set of ‘go to’ recipes. The Phil Vickery ones are good. Good luck!

May I ask those others with children who were diagnosed with CD whether they noticed the mood swings and brain fog? And the hyper sensitivity/reactivity?

My son was very thin but it was the above psychological symptoms that I found most interesting, in hindsight.

Pizza Express gluten free pizzas are really lovely. They do gf really in there- pizzas come on a different type of plate to minimise cross-contamination risk.

My friends son is 11 and has been coeliac since he was 2.

He has a varied and full diet, they just had to make a few changes but he eats pizza, cake, biscuits, pasta. His mum also bakes cakes for him.

I think you can join a coeliac organisation online which will point you in the right direction.

The biggest danger is cafes and restaurants serving GF but not understanding that coeliac means no cross-contamination at all rather than GF lifestyle choice. I watch them for not using the same knife to cut cake or bread, etc.

Abra1de
Yes, with my DS it is the psychological symptoms that usually come when he has accidentally had gluten (from cross contamination).

So interesting. My poor son spent his entire school life over-reacting to teasing. I couldn’t understand it because we have always given him a lot of support and encouragement and gently joshed him at home, etc. But he seemed to see threats where there weren’t threats. And on the night before important A level exams he would be incapable of hard focus, just zoned out. He did well to get to a good university but we don’t know how much easier it would have been if he’d been diagnosed as a small child.

And being very thin is really tough for boys.

Thank you SO much to everyone who has replied. I feel so much better today. Yesterday I felt like the world had turned upside down but now it seems manageable. DD has been started on iron tablets today as her iron is less than half what it should be and she is anaemic. I am feeling very guilty that I didn't pick up on this before. She has been so tired for so long but I always put it down to something like school or sports (she loves football don't know how she has carried on to be honest).
We had a nice positive chat today and looked at what is available gluten free at supermarkets. I am finding it really hard to give her bread etc. Feel like I am serving her poison!