Idiots guide to Coeliac Disease

[RunLikeSomeFeckersChasing]

I got a letter today from DDs consultant saying that she has a positive blood test for coeliac. Does this mean she has coeliac disease? I know it does and we see the consultant tomorrow. Feeling all at sea and in a little shock. Been googling ever since I got it. She is only 4 and its a lot for such a small body.

So, I have some gf cereal for breakfast, a cupboard solely for gf food and know I need another toaster. What else do I need to do?

Trying to focus on the positives of an early diagnosis but now I've sat down I feel overwhelmed.

Don't make any changes to her diet until you've seen the consultant as undoubtedly she'll need a biopsy to confirm the diagnosis and will need to eat a full gluten diet till then.

It does seem overwhelming at first, but soon it will seem absolutely normal to you.

Between now and biopsy, start changing over all the things like gravy (Bisto best is gf, just made in a factory that handles gluten so no longer marked), stock cubes (I use Kallo), soy sauce, ketchup, baked beans, tinned soup and so on over to gf so all your incidentals are gf. Then you'll only be moving her bread, cereal, pasta over to gf which is much easier to notice than realising after that you've used a nongf stock cube in the bolognaise.

Train the family to use spoons for jam, mayo, peanut butter, not redipping gluteny knives, and once gf you'll need a separate spread for her.

I've been gf for 15 years, and things are sooooo much better these days with labelling in supermarkets, speciality food availability online and in shops, and gf foods in restaurants

Thank you CMOT.

I have been getting more info and realise that I have to feed her stuff which is probably poison to her wee system for at least a while longer. No idea how long it will take for the confirmed diagnosis but I can see her getting worse by the week so really hope it's not too much longer.

I'd decided to do almost exactly what you said (coupled with a spring clean to get rid of any residues of gluten from the cupboards - oh joy) so that when the big switch happens DH and I know that if it's in the cupboards she can have it, means that DH will have no excuse to not cook dinner. Might allow a small non-gf cupboard...

I just need to educate myself and my family as best I can. If I get stuck I may PM you - I've noticed a few gf posters and could probably do with a short-term support network!

Thanks again,
Run.

A spring clean is a good idea - the number of crumbs in the cutlery drawer is amazing!

Another good thing to fill the time with is to find out which cafes and restaurants locally are gf friendly. A lot of chains now have at least an allergy menu which tells you what is gf, but the choices may not be v exciting (Wagamamas annoys me as their gf options now have all the taste removed). Pizza Hut, Pizza Express, La Tasca, Ask, all have specific gf dishes now which is ace. You'll also find local places which are either just very helpful or cater specifically - trawl the internet.

Feel free to PM me.

When I was diagnosed I found the coeliac society website helpful. If you become a member they will send you a book which is updated monthly containing all products that are gluten free. I found it helped to look in there and I could see, for example, Sainsbury's own baked beans don't contain gluten, and then I didn't have to read all the labels in the shop. I don't use the book now because I know what to buy but it helped me to begin with.

Good luck and I hope yourDD is feeling better soon. It is a bit overwhelming to start with but it will become second nature. There are so many more places to eat our for coeliacs now too, pizza express, pizza hut, Zizzi, ask, carluucios, all have GF pizza and pasta of you ask.

Coeliac is the condition
Coeliac disease is when the condition isn't managed properly.

It gets much easier.

It's the hidden things thy catch you out - playdoh got my son, school made some gf playdoh for him.

There's a few good groups on Facebook, coeliacs in the uk, children with ooeliac.

Gf for dummies is a good starting book.

Where about are you, our local groups have drop ins in sainsburys every few weeks to speak to newbies.

Marks and spencer is your friend !! The sausages there are gf and reasonably priced. A lot of m &s food is gf (apparently the chairmans nephew is ooeliac).

Pm me for any help

I've been gf for 7 years and have done exactly the same as CMOT - all our usual sauces and staples (like stock cubes, soy sauce, vinegar) are gluten free now and I have a gf shelf on the cupboard with gf pasta, flours, crackers and my personal favourite, Warburtons gf wraps. I also have Doves Farm gf corn flakes which no-one else in the family is allowed to raid!

We usually all eat gf as a family, eating potatoes/rice, but if it's a pasta meal I have a separate pan of gf pasta on the go as it's too flipping expensive to cook gf for everyone!

Eating out at lunchtime is the worst time for me - sandwiches everywhere and I get Fed Up of jacket potatoes, so I usually carry stuff around to have and now have no shame in getting out my packed lunch in cafes Similarly I'm always armed with my Doves Farm cornflakes at hotels for breakfast followed by eggs and bacon, obviously

Watch out for not very obvious things with gluten in, like burgers and sausages (although Co-op do lovely gf sausages). you learn to examine every label, all the time, which is a bit of a pain but will become second nature to your dd. The good news is that Haribo is mainly gf (apart from licorice stuff) and things like jelly tots - I always have treats in I know are gf!

Good luck and I agree with CMOT - don't go gf until after the biopsy - I was told to eat 4 weetabix a day in the days leading up to mine...

just to say I've eaten gf at Carluccio's twice, in two separate restaurants and have been ill both times so I don't trust them...

Dotty - the coop are in the process of changing the recipe in the sausages and most won't be gf anymore, check before you buy them .

oh no! But they're lovely!

That was the other thing I was going to say though - you need to keep checking labels as products do change from being gf to not or might not very regularly - things like Walkers crisps. I tend not to have anything that says 'might not be etc. etc.' because I get a ridiculously bad reaction, but I used to - have started getting very ill over the past year so it's a risk I can't take now.

We don't have a separate toaster - I just toast things on the clean grill and/or on foil on the grill. I have my own separate butter and have little pots to put things like humous in if we're all having it so that ds's don't infect mine with breadsticks!

My DS was diagnosed at a young age and I know it seems very overwhelming at first. On a positive note, the upside of being diagnosed as a young child (apart from the obvious health ones) is that they adapt to the new diet quickly and in my DS's case he really can't remember a time when he wasn't gluten free. I second the advice to join the Coeliac Society - the food & drink directory is really helpful. Also food labelling is much clearer nowadays.
Good luck & feel free to PM me if I can help.

Just wanted to add a couple of things. DH is coeliac and we don't have a separate toaster - he uses toaster bags. He also doesn't tend to buy special GF cereal. A lot of the own-brand cereals have a level of barley malt that can be tolerated by him (and I guess some other coeliacs). He usually has the Tesco or Sainsbury's honey nut cornflakes, but also does ok with most own-brand cornflakes. He tolerates malt vinegar ok and also worcester sauce. Ketchup and baked beans are usually fine.
Eating out is a lot easier these days. MacDonalds is pretty good - they are happy to do a burger without a bun (you could take your own gf bun if you wanted), and the fries are gluten free. He has never been ill after eating there as everything is cooked separately so doesn't seem to be any contamination.

Another Coeliac here who is willing to help in any way I can.
I was diagnosed 17yrs ago and although my DC are not displaying symptoms, I do work in a pre-school, so I have some experience from that side of things too.
It must seem like a huge deal right now, but panic not, it's a very manageable issue and a gf diet is essentially a healthy one.
Feel free to ask questions here or PM if you prefer, don't struggle on when help is at hand.

Another coeliac here you do have to get reading labels as you will find some of the places gluten will amaze you. Two examples Kellogg's rice crispier contain gluten tescos own do not. Waitrose salmon pâté does not contain gluten whereas tescos does.

I find you have to regularly visit different supermarkets to see what they have got M&S have recently extended their range and nearly all their sausages are GF.
I bought the two Phil Vickery (his daughter is coeliac) cook books and the Honeybuns one too the are both fab.

there has been a recent change to the guidelines for testing children. a high positive anti body test and a positive gene test note don't necessarily mean a biopsy is required.These are very very recent changes and may not be widely implemented.

Eating out:
Pizza hut and Domino do GF pizza. If eating Chinese food as a family, takeaways often have something like chicken omlette and chips. Indian restaurants are usually safe other than the Naan bread (poppadoms are ok). Harvester/Brewer's Fayre types have an allergy menu thing you can look at, and Carvery places are usually fab - just avoid gravy, yorkshires and sauces.

Beware of sauces, and things like 'chinese vegetables'. Some oven chips/Roast potatoes/waffles contain wheat flour.

Thank you so much for all the info everyone.

I am in Northern Ireland so looking at any local groups here.

We have benefited from the new diagnostic guidelines and DD can go GF from today. If she'd been referred a few weeks ago it would have been under the old regime so I'm glad we don't have to go down that route.

Been trying to gluten free the cupboards tonight. Then fridge and freezer and then the oven, etc to get rid of residues. Decided to have one cupboard of stuff DD can't have and everything else she can. I don't want get to feel like everything is a no from us.

Should see dietitian within a few weeks and hopefully that will iron out some uncertainties.

Could any parents suggest how they explain to their DC?

We just told him it was poisoning his tummy, tbh after a few days gf he felt so much better he would not have eaten knowingly with gluten in it. We have different coloured baking trays/tins for his stuff. As a family we eat 95% gf, I cook from scratch just about everything. All cakes treats I make.

Just remembering things, I got rid of all my wooden spoons/boards etc and replaced with silicon.

Glad you don't have to go through more tests, you don't really need any more stress do you?! Hopefully the dietician will be helpful too.
Re talking to your daughter about it, I would just try and be positive. Not saying 'I'm sorry...' etc, but concentrating on helping make her tummy feel better. At 4 she will hopefully adjust reasonably well. You seem to have a pretty good handle on things already.

The Coeliac Society have a good booklet to help explain things to young children. I think it's called 'Me and My Tummy' - not certain but I seem to remember we got a copy for my DS when I joined. I also took it into his school who used it to explain to his classmates why they shouldn't share food. Just to say my DS was diagnosed over 10 years ago and he is really good at managing it himself. The hardest thing initially was eating out but that has improved so much recently. He was delighted when Pizza Express started their gf menu.

Had DD at an after school club today. Told her on the way that the pancakes they gave would make her tummy sick but I had something instead. So she walked up to one of the helpers and said "I'm a coeliac who can't have gluten. What can I eat?" I was very proud and then utterly delighted when they told her that they already had toast for another boy with coeliacs! Just make me very glad that so many people have gone before her and very grateful that to everyone who gone before. Think it's a pretty good time to be have Coeliacs and it'll only get better.

Can I ask - I have a bread maker already, can I give it a damn good clean and use it?

Also, I have a small inner pedant, how do you describe yourself as a coeliac? I have had to contact all her clubs and am saying that DD has Coeliacs - is that OK?

Not sure about the breadmaker to be honest, but so long as there are no visible remains on it I would use it yes. Some of the companies producing gf bread mixes/flour publish breadmaker recipes on their websites I believe.
I would say that 'I have coeliac disease', since that sits better with me than 'I am a coeliac', but guess it's not that important really!
Well done on your daughter telling staff about her needs, she must have taken in your explanation well! That kind of thing is really useful for staff, to hear it from her as well as yourself.
As an aside, the Coeliac Society have a rather cute teddy, (reasonably priced) wearing a t-shirt that says 'I'm gluten free' (or similar), don't know if that's the sort of thing your DD would like.

I say I can't have gluten. People know what that is, as they see it on the allergy information on things they buy. They can then look out for it, and buy things that are gluten free.

It's a lot easier than it used to be when I was first diagnosed five years ago (and son was shortly afterwards). More restaurants are accommodating to GF dishes than even one year ago, once Dominos launched their GF pizza base (what a treat that was the first time) others have followed. Larger supermarkets and health food shops are the best places for groceries, although the Sainsbury's local near me has a few bits for emergencies. It's true that you need to be eating gluten in order for the biopsy to correctly diagnose Coeliac, but only one meal a day. Avoiding lactose is also advisable in the first few months after diagnosis, as the damaged gut lining can be further affected by it.