Coeliac diagnosis - diet whilst waiting for consultant

[curlywurl]

My son has suspected Coeliac disease. The GP rang with test results last week and said cut out gluten straight away. Everything I have read since says keep eating gluten whilst waiting for the consultant appointment.

Does anyone have recent experience of this? I have tried calling the hospital and GP but got no more information so far.

His ttg result was 687 so it seems very likely to be Coeliac (I read that over 100 is a strong positive result).

Also does anyone know if he is likely to need an endoscopy for diagnosis with that result? (early teens age group)

No bowel or stomach symptoms but chronically low iron levels and on last bloods low calcium and vit D too. Hopefully we now know why vitamin levels are so poor.

My instinct is to remove or at least reduce the gluten but obviously don't want to delay diagnosis by having to start again.

Any advice is appreciated. We did not expect the positive result so it's a lot to take in.

have a read here www.coeliac.org.uk/information-and-support/coeliac-disease/about-coeliac-disease/coeliac-disease-in-children/?&&type=rfst&set=true#cookie-widget

depends on how extreme the symptoms are as to whether to stop now or not, also estimated waiting times.... I have coeliac and once I stopped gluten there was no hells chance I'd eat it again as the response is much much worse!

Thanks I'm obviously hoping an endoscopy won't be needed. That's interesting that the reaction is worse when you start eating it again

I would call the consultants secretary and ask. Some hospitals still do endoscopies as standard practice in which case you would need to continue with gluten. Others have a threshold for ttg above which they diagnose without the need for endoscopy - in which case stopping would be fine. Call and ask what the process is in your area.

That's really helpful thanks. Hopefully the consultant appointment will come through soon so I can phone to ask. At this stage I don't know if we'll see a general paediatrician or gastroenterology so don't know who to ask to speak to.

Call your GP and ask who they have referred to and when.

Also, our local paed department have a panel system for referrals to decide who the best consultant is - you can just ring general phone number and they should be able to tell you. Unlike adult consultants who all have different departments and phone numbers!

Ds was diagnosed coeliac 4 years ago after routine blood tests flagged levels of nearly 800.

We were referred to paediatric gastroenterology and told not to cut out gluten until our first consultation. DS didn't have to have a biopsy as they ran blood tests for genetic markers which came back positive so didn't need to be confirmed with biopsy.

From what I understand you need to keep gluten in the diet in the event of needing a biopsy to confirm.

My dd and I are both Coeliacs. Guidance now is not to do endoscopy on children as bloods alone and symptoms are clear. I would indeed contact the secretary and just check though as you don’t want to reintroduce. It can take about 3 weeks to clear symptoms but you’ll be so pleased I’m sure. It might seem daunting but so easy once you get going. My advice is remember it’s an allergy but a disease, and coeliac U.K. junior packs are brilliant. Also watch out for barley and malt in Easter eggs and bunnies as they add it to get them to hold their shape !

Sorry I went off topic but just sprang to mind!

Don't worry about going off topic it's all helpful as I know nothing!
I think our hospital may be the panel system as GP said they just refer to paeds in general.

What sort of monitoring could we expect once diagnosed? It is yearly review and bloods or less than that?

Glad to hear endoscopy is less common for children I would be scared to have let alone my child have one.

Also does anyone have advice on pasta - what's the best and how to cook it best? Pasta is what he is pissed off about so far. We are trying some gluten free stuff at the moment to get our head round it as it seems inevitable we are heading that way sooner or later.
Have tried co op and sainsburys pasta so far and he is not impressed. I think it is ok just a bit more gummy and grainy in texture than wheat but he says it is watery tasting!

Finally what about getting the rest of the family tested? Does the GP usually do this once one member is diagnosed? We don't have symptoms that we have noticed but then neither did my son. It's taken 4 years of battling iron level and blood tests before the coeliac screen was suggested.

Notn coeliac here butnlow.gluten due to IBS Carlluccio glutennfrre pasta is the closest to normal pasta has the chew to it still. You can order online and some larger supermarkets sell it too

What sort of monitoring could we expect once diagnosed? It is yearly review and bloods or less than that?

Depends on the GP, seems to range from absolutely nothing to people having annual checkups with bloods and a Dexa scan. Dd is in the “nothing” camp. I think the majority of places for kids are now diagnosing on blood results alone, especially where it’s a clear result like this.

Get clued up on cross contamination, different toaster, different butter, jam, etc. Not to use wooden chopping boards that normal bread has been on. It’s daunting at first but you soon get used to reading packets. Don’t be caught out by the “may contain gluten” after the main ingredient list…..walkers crisps looking at you.

The majority of chain restaurants are good for eating at and have strict procedures. Independent places can be hit and miss. Some will happily serve gluten free bread but use the same toaster, pizza oven, etc. Don’t be scared to quiz the staff politely about it in detail. 👍. If in doubt leave.

And yes any other kids and you and their dad should be tested, you’ll probably have to ask for this to be done.

Dd happily eats any supermarket gf pasta. I think it generally needs cooking for less time than the packet says.

Dd misses pizza, all the shop bought bases are fairly rank she says. We learnt how to make pizza using this. www.amazon.co.uk/Flour-Caputo-Pizzeria-Kg-1/dp/B07QJTLQQ4/ref=dp_fod_3?psc=1&pd_rd_i=B07QJTLQQ4&tag=mumsnetforu03-21 Much better than other gf flour as far as pizza is concerned. The cheaper stuff is fine for pancakes and cakes.

I find barilla and napolina to be the best gluten free spaghetti. I can't tell the difference between that and normal spaghetti.

Pasta shapes are a bit harder but again barilla do a pretty good fusili.

We find the whatburtons gluten free tiger bread is the best.

Thank you for the pasta recommendation.
Are there any chain resturants that are particularly good? It would be nice to find somewhere easy to start with.

Also what about school lunches in secondary school? Do they ever do a meal just for that child or is it just pot luck what is on the menu? I have emailed school but no response yet.

Pizza express is good
Wagamamma is good.
Dd is vegi so we’ve not been but people say Nandos is good.
Zizi, Ask are fine.

We’ve never had an issue in any Indian take away or restaurant. I would stay clear of Chinese unless you get a good local recommendation.

Taco Bell wasn’t good when Dd tried, she asked and they said they couldn’t do anything gluten free. Not sure if this is still the case.

Some chip shops are ok but some will cook the chips in the same fryer as the battered fish so would be no good.

McDonald’s chips are fine. They are happy for you to take your own bread roll in and will sell you a deconstructed burger in a pancake box which you can reassemble yourself. I’m not sure if all the burgers are gluten free, think so. the vegi nuggets are definitely gluten free. The hash browns are gluten free. No idea about the chicken nuggets, probably not.

School lunches can be a nightmare. Dd was in sixth form when diagnosed and I think lived off jacket potatoes or chips for the next two years. So in our experience just pot luck regarding whats on the menu.

That's a good range of restaurants to start with thanks. Also veggie and won't eat nuts or seeds to complicate things further!

Secondary is a bit hit and miss in reality! One school we looked at said they "didn't have anyone with dietary needs" but DD's current school ensure there is always a meal available. Planning ahead becomes second nature - her canteen knows she always eats there on particular days. It is a bit harder to be spontaneous! Eating out is not too bad, but grabbing food on the go is tricky.

Oh being veggi is going to be tricky but Dd manages. I did hope Dd would stop being vegetarian in the circumstances but she’s carried on. Wagamama by the way will make dishes vegetarian which aren’t, they’ll swap ingredients about so sweet talk the staff.

There’s a fb group called vegetarian coeliacs in the U.K. which is worth joining as people,will post new finds in supermarkets, etc.

Also gluten free vegans U.K. fb group

I've got 2 coeliac grandchildren, and they were diagnosed from bloods and symptoms alone. Both were symptomatic and very poorly by 18 months of age. They see the Consultant annually and have bloods done around a week before the appointment. DD manages so well with them, she buys most of their gluten free food from Asda Free From and they're fortunately getting old enough to understand that they can't eat certain foods. DD always gives them party food to take to any birthday parties, unless she knows the other Mum really really well.

Eating out can be disastrous - one even got glutened on her birthday by an agency chef in a kids venue who didn't realise that you need to cook gluten free food in a separate fryer . So we've become very adept at home baking and I highly recommend Becky Excell for baking advice. glutenfreecuppatea.co.uk/

Wagamama sounds a great one we like it anyway.
Any advice on good sliced bread or wraps for packed lunches? Those we've tried so far are quite gummy or do you just have to get used to the different texture?

We're happy to bake too. I made some gluten free chocolate muffins but they were a bit dry and gritty so need to try some more recipes!

Becky Excel has a great cookbook that's all gluten free recipes. There are some fab Facebook groups too, it's where I got most of my info from! Taco Bell is still sadly rubbish for Coeliacs, I asked last week. Pizza Hut, Nando's and Macdonalds are all very good. The only times I've really struggled have been coffee shops and outdoor festivals. While food shopping just look at the ingredients. They will be in bold and you want to avoid BROWS. Barley, rye, oats, wheat and spelt. Also may contain as the risk of cross contamination is high. Special gluten free labelled food is far more expensive and not always healthy. You'll be amazed at what muggle food your son can still eat.