Positive coeliac test - what can we expect now? (Loads of questions - sorry!)

[Wordsmith]

DS (3.10) has had a positive result from his blood tests - TTG(?) levels of 128 when in a normal person they would be under 10. We're now waiting for an appointment for a biopsy - although the paed is 110% convinced it's coealiacs with a reading like that.

Has anyone's child had the biopsy/endoscopy? What can we expect? Do they knock the child out? What's the difference between general anaesthetic and sedation? How would a 3 yr old react to that? I'd really value hearing others' experiences, I'm dreading it on behalf of poor DS.

He'll be starting school in Sept and before then goes to day nursery and pre-school. Does anyone have experience of discussing coeliacs with schools/nurseries and how helpful were they (although I imagine it varies from place to place... just grasping at straws here).

I've ordered some booklets from Coeliac UK website - are there any other good website/forums I should be looking at?

Any advice/comments would be really gratefully received. Thanks.

Glad it all went well Wordsmith - well done on lasting as long as you did before dissolving . As flamingtoaster says, enjoy watching the transformation .

beckystaffs - had not heard that about wooden spoons. Although I try to keep one spoon dedicated for GF cooking (pasta etc), DH is forgetful and often mixes them up .

BensFMum, I ordered from that website and it arrived yesterday - v. impressed with the service and looking forward to making jam tarts with the girls this afternoon .

3andnomore, good luck for your DS's tests. Easier said than done, but please try not to worry. Any questions, please ask .

Hi All,

Well have just gone a spent a fortune at tescos stocking up (inc a toaster for DS2 - that was only £3.45 would you believe, and a breadboard for 99p.)

He had GF rice krispies for breakfast and cheese on gf toast for lunch, both of which seemed to go down well. He's asking for food a lot but mainly biscuits (he loves the GF shortbread) and cheese string! Am trying to ensure that he eats main meals with the same gusto, but it may take a few days or weeks!

Have also talked it through with the day nursery he goes to 2 days/week and agreed that I will supply food and they will let me know menus so I can try and stick to similar stuff. Most of the time they have meat and veg etc so if anyone knows of any GF gravy granules or gravy mix I could supply I would be v.grateful. I'm pretty crap at making gravy myself but I do use cornflour - but we only tend to have gravy when there's a Sunday roast involved and I use the meat juices.

The GF bread tasted OK toasted, but don't think I'd like to try it 'fresh'!! I have bought some Doves Farm flour so may try making a loaf at the weekend - can you use it in a breadmaker following a normal recipe or do you have to vary it?

It was fun with the separate breadboard and stuff, that's going to be confusing!

Flamingtaster and tbk3, that's great advice, thank you so much. I will look at the members board. Am planning to cook as a family wherever possible esp with pasta and stuff which we eat a lot of. I think it will probably do us all a lot of good!

3andno more - don't worry, it's really scary tho think of but we have got used to the idea now and it's not that difficult to deal with. It was all put into perpective for my by a freid whose DS has a nut allergy. As she said, coeliacs might be more time consuming to deal with on a day to day basis but a least a grain of gluten isn't going to kill my DS, like one peanut could kill hers!

As you say once we read the symptoms of coeliacs it was exactly the same as DS2. Just push for a paediatrician appointment because once we had the ball rolling and the support starting arriving in the form of umsnet but also leaflets and stuff from Coeliacs UK, it all became a bit less scary and more manageable.

Whoops, typing in a hurry and not previewing! Excuse typos.

Sorry, meant to say thanks Ben'smum too - I looked at the site, it does look great.

I use kallo Yeastfree Vegetable Stock cubes for gravy - but they are not brown. According to the Coeliac Directory Bisto Beef Gravy Granules, Kallo Organic Beef Stock cubes, and loads more are glutenfree - but you'd be better to ask on one of the boards which taste best since I hven't used any of them.

To bake bread use Doves' Farm Bread Flour and follow the instructions on the pack (sorry I should have mentioned there was the plain gf flour and the bread flour). I've never tried that one but apparently it produces a nice loaf. With the bread I bake for my son (he has additional allergies so can't use a recipe with egg in) I bake yeast-free gf bread which is very quick (coeliac.info/suppboard/viewtopic.php?t=603).

At uni he makes "pan bread" which is very fast and delicious in various varieties. We invented this version and converted it to measuring jug measures so it's faster and he doesn't need scales:

1/2 pint of Dove Farm gf flour
1 1/2 teasp gf baking powder (supercook - check the front the gf one says gf)
sultanas (as many as you want)
1/4 teasp cinnamon
2 tablespoons of ground almonds

Mix all the above and add milk (or Rice Milk if lactose intolerant) until it is quite thick but pourable. Pour into the frying pan - turn when it is cooked enough to be turned and cook until cooked through. It's delicious hot and he has taken it out and eaten it cold but I don't know how the texture is when cold though he seems to like it!

You'll soon be an old hand at all this.

Wordsmith, reassuring that you already have gotten a bit used to the idea...but painfully expensive those special products, sigh...
Oh, ds had his appointment yesterday...for his constipation/soiling issues...and the paediatrician was absolutely fab and thorough, ds was given his bloodtest there and then...checking for Coeliacs, Thyroid probs and some other things...like I said, in his case it's more to rule out any physical problems that could cause his constipation....must admit, I never ever even thought of coeliacs with my ds...I always assumed that a child with coeliacs would be having the opposite to constipation probs...but obviously it can show either way...

celiac is one thing and gluten intolerance another - unfortunately tests don't pick up intolerance, so relying on tests is often a blind alley

FlamingT, I am soo impressed by your son's cooking skills!! Hoping mine will grow to be like that too. We have recently discovered polenta that can be cooked in a very similar way and with various things thrown-in (olives, herbs etc) it works very well as a pizza base or slice IFYWIM.

Another mind-blowing discovery occured to me last week - breadcrumbs: for last 2 years I kept odd crusts for that and last week I run out and in desperation looked around the kitchen and in the end I ground some puffed rice (in a coffee grinder) - came out just perfect.

You're welcome tkband3 and wordsmith - enjoy!! I should be on commission though from gfdiet as I've just given the details to ds's educational liaison officer for her dd!! At her request I might add - I'm not pushing it on everyone I see!! Funny how as soon as you speak about these things they keep on cropping up!! Good luck everyone and as someone else has said it soon all falls into place and you adapt to gf living quite quickly!

nightcat - it's amazing how necessity is the mother of invention in special diets! Love the grinding puffed rice idea - I'll remember that! Son has to self cater due to additional allergies - they could cope if he was only coeliac (they do cook for him for special Dinners/Feasts which is brilliant of them). Unfortunately he doesn't like quinoa because there's loads of couscous recipes where it could be substituted - however he does have a small repertoire of things he cooks and I do food drops (with difficult to get brands etc. and some cooked and frozen meat, some loaves I bake, for his freezer) every three weeks. We were very worried as university approached needless to say!

3andnomore - are they testing for Crohn's as well? Think they did with DS2.

Flmaingtoaster - tell me more about quinoa. DS2 loves couscous and that's one of the things I'd be keen to replace.

FlamingT, my son is going to residential Sixth Form next year, so your post sounds very reassuring that they manage somehow

Wordsmith, I am not sure if they are testing for Crohn's...they did several bloodtests, and I only recall that they did a full bloodcount, Coeliac and Thyroid...

Wordsmith - quinoa is an extremely nutritious glutenfree grain and comes out very like couscous. There's lots of interesting information here: www.quinoa.net/ There are some recipes on there as well. One thing you have to be very careful of is that you wash it extremely thoroughly because it is covered with saponin, which is bitter and is there to stop animals eating it. You have to wash this off - some sites say thorough washing under running water is enough, others say pour boiling water over it. The saponin comes off and looks soapy- don't soak the quinoa (i.e. don't leave it soaking in water) as this can allow the saponin to get into the actual seed. I once had one of the only two migraines I've ever had after eating quinoa - I reckon I didn't wash it enough!

nightcat - son survives really well but we did get permission for him to have his own small fridge and freezer in his room to avoid cross-contamination concerns.

Wordsmith - there's a question looking for gravy recommendations on members2.boardhost.com/glutenfree/ if you want to see what people think of the taste!

Just a quickie re gravy - we tend to use the Bisto Best gravy granules. They do chicken, beef, lamb and vegetable flavour (although I've found the lamb flavour a bit hard to come by). Alternatively, I got some gluten-free gravy mix from Sainsburys, made by Free and Easy. For stock I use Marigold Swiss Vegetable Bouillon which comes either as a powder or cubes.

V. interesting re quinoa - DD1 hadn't tried couscous before going gluten-free, but it's worth a try. I'm always trying to expand her rather narrow horizons . And that pan-bread sounds great - will definitely be trying that one.

The pastry was a real hit today - the jam tarts don't look great, but lots of fun had by all 3 girls making them and much less hassle for me than trying to make pastry, which was never my strong point even with standard flour .

Let us know how DS gets on Wordsmith.

Glad the jam tarts turned out well, as long as they were tasty it doesn't matter that they don't look perfect imo!! Word of warning though, I've bought ready made gf jam tarts from Tesco's and all the jam has usually run out of them!!

tkband3 - re Bisto Best some people on the coeliac board have reported upset stomachs after using it (others are OK) there is a suggestion this might be because it is processed in a factory that handles gluten so here could be a very level which the very sensitive react to (equally it could be to an ingredient in the gravy). Anyway the current consensus over there is that Antony Worrell Thompson Beef Gravy is great (from Tesco).

Re pan bread - the savoury form is also very nice - leave out the cinnamon and almonds and put in dried basil and chopped sun dried tomatoes.

That's interesting re the gravy, I guess I'll just use the Bisto one and see what happens.

I'll need to give it a few days or weeks I reckon before I can see the effect the diet is having. At the moment the difficult thing is trying to get him to eat his 'proper' food when he's got so used to snacking on cheese strings and being allowed biscuits whenever he wants. He has quite a lot of snacky stuff today and then at dinner time tonight he didn't want to eat his home made bolognese with GF pasta which was lovely -we all had it. I'm on the horns of a bit of a dilemma - he keeps saying he's hungry but he doesn't seem to be hungry for 'real' food. mealtimes are still a bit of a mare. But Im loath to stop him snacking too much as it's high calorie stuff he's snacking on which the dietician said I needed to encourage.

How do you get finicky kids to eat proper meals? (Not sure if this is a GF question or a general one!) I'm just keeping fingers crossed that he'll gradually come round to it.... it's such a contrast with his brother who eats everything you put in front of him and then has 3 or 4 bananas afterwards beacuse he's still hungry.

wordsmith as your DS recovers he will become increasingly hungry so might be willing to eat "properly" just to get full! It will be a slow process to wean him off the snacky stuff and you might have to use the "well if you eat your lunch up you can have some cheese strings this afternoon" sort of thing, though to make sure he had room for lunch you'd have to reduce his morning snacks a bit. A first step would be to make sure snacks are a couple of hours before his main meals so there's a chance he could have room for at least part of the meal just to get him started. If he's hungry between then and a main meal just tell him how delicious it is going to be and it will be ready soon. Don't let him have drinks too close to meals either as that can give them a false feeling of fullness. He's seeing good examples of you all eating properly so hopefully he will soon follow suit!

Thanks Flamingtoaster - that's more or less what we're trying to do. Trouble is in the last few weeks we've been following the doc's advice to let him eat whatever he likes as long as we get some calories into him, and we've been so worn down by everything our resistance levels are pretty low.

I've typed up an instruction sheet for his day nursery that they can stick up in the kitchen. I'm taking his own food in but trying to stick as closely as possible to what they're all eating. He's at preschool this morning and the problem's not as bad there - no lunches! They do have toast but lots of fruit as well so we'll just have to make sure they can do DS2's toast to the 'required standards' before sending some of that 'lovely' bread in!

I know how difficult it is - we went through the process three times with DD after three hospitalizations (drip for five days each time) where she lost one ffth of her body weight each time (turned out to be abdominal migraine). She would come home and literally eat Rice Krispies one at a time throughout the day for a few days, then move on to spoonfuls - at that stage we would offer small portions at mealtimes and she would only eat a mouthful or two. The turning point generally came when we could get one highly calorific meal into her - in her case fish fingers and oven chips was the best bet! (Tesco Free From Fish Fingers are very nice by the way.) It does take time (and is very wearing on the parents). I'm sure the nursery won't mind you taking in a toaster - just make sure you label it glutenfree in large, friendly letters! Toastabags are always a good standby by the way - we've never had to use ours but we always have some in the house in case the glutenfree toaster breaks down.

Wordsmith-My 9 year old DS was dx with coeliac disease a couple of months ago. ( I think I posted earlier in this thread).
I am having the same problems getting him to eat, because he has a lot of issues around food-he has Asperger's Syndrome and already had a restricted diet because of not liking the taste/texture of a lot of foods.
His appetite has improved a lot since he has been on the diet, but I am afraid a lot of the foods he eats are still snacks as opposed to meals. I have to let him eat what he is prepared to eat in order to keep his calorie intake up. He is not bothered if he goes without, so saying he cannot eat x until he has eaten y is not really an option! However, he is putting on weight now so I am not too concerned-he also drinks a lot of milk so gets a lot of nutrition that way.

Yes I think worrying about a balanced diet is a little way down the road!

I was wondering about toasterbags - think I'll invest in some for nursery and preschool.

Flamingtoaster - he has Tesco fish fingers tonight and they went down well. He's eating loads at the moment - not big meals, but loads throughout the day, so on the whole we're pleased!

Can you recommend a good easter egg? My mum wants to know.

Coeliacs can eat most chocolate-I think all the Cadbury eggs are ok, and most of Thorntons is gluten-free. Marks and Spencer chocolate is largely gluten-free (and their stuff is always clearly labelled if it does contain gluten). Kinnerton eggs are also gluten-free if I remember correctly.

Glad he's enjoyed the Fish Fingers - it sounds like he's doing really well. There will soon be a list on www.coeliac.org.uk/ - for easter eggs. Just put Easter into the search box and it will come up. Last year's list is still there (but ingredients can change). Be careful with Cadbury's - as you'll see from last year's list there's odd things like their creme eggs are ok but not the mini creme eggs, etc. Sainsbury's labelling is also very good on their eggs.