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.

Bread wise everyone swears by Warburtons tiger loaf although I'm not a fan. I prefer the Genius seeded loaf. M&S apparently do a nice loaf too.

Good to have some other breads to try thank you.
I agree naturally gluten free foods are going to be less disappointing for him and cheaper!
Are there some vegetarian gluten free muggle foods I'm over looking? The obvious carbs are rice and potatoes. I've got some quorn that is gluten free and the Linda McCartney sausages (chorizo and red pepper ones I think).

He likes cheese. Eggs are hopefully back on the menu after a bad reaction to duck eggs a while back (he was very sick and nauseous - chicken eggs have always been fine but he was put off which I can understand).

I eat things like quinoa but never managed to get the kids into them. For school pack lunch we've fallen into white wrap or bread every day hence trying to replace those now.

He has school lunch on P. E day so less to carry but all I saw on the menu was jacket potato and that is only in one of the 2 canteens

He'll need an endoscopy for diagnosis and to be eating gluten at least once daily for 6 weeks before then. but if the wait is going to be months and months you could stop gluten temporarily.

If he's veggie this won't be as much use (although may be if anyone else in the family also turns out to be coeliac), but it's worth looking at different supermarket own brands of things like sausages, burgers, breaded chicken. A good number of Marks and Spencer and Morrison's products are GF without being advertised as such. I cater for coeliacs regularly and it's amazing how many products are "safe" without having to buy the more expensive "free from" equivalents.

TGI Fridays is also good at catering if you're out, but in my experience if you ask about whether the chips etc are in their own fryer that's a really good indicator as to how clued up a restaurant is!

Get used to taking your own food places. Don’t want to be negative but honestly, so many places offer GF food but it’s really not coeliac safe as they share utensils etc. chains are better but it’s tiresome having to quiz confused staff about separate toasters etc.

I seldom eat out now. Been glutened too many times. I feel it’s just not taken seriously enough.

Hi, we're at a similar stage to you. My child's blood results came back as strongly suspected. GP said not to cut out gluten while waiting for referral.

A few days later I received a phone call from the consultant who said it's really important not to cut out gluten at this stage while waiting diagnosis as can show false negative result.

The consultant also said that they used to have to take a biopsy for diagnosis, but now can do it from bloods. We're now just waiting those further blood results.

Both my two and me are Coeliac, kids both diagnosed via bloods alone, youngest was very poorly, then I was diagnosed via endo and eldest showed blood markers and with family links diagnosed! Not all areas use endo for kids. Kids have consultation and bloods yearly with local hospital, I get nothing from gp or dieticians! You get free flu jab and covid booster tho as it’s an autoimmune condition!

We like Sainsburys or M&S pasta, warburtons tiger bread and square rolls! Check with companies like glutafin (scharr) and Juvela you can register for a free box of goodies!

Also see if you get anything on prescription in your area, we get bread (glutafin/scharr) but you get a lot in one hit so i to order long life stuff! Lots of Facebook groups and join coeliac uk it’s £2 a month and website really informative!

I'll keep asking until I get a definate answer from the consultant then as there is variation in areas.

As he has no symptoms except poor absorption of vitamins I guess we won't know how well we are doing in avoiding gluten without blood tests.

When reading labels if there are no BROWS ingredients or 'may contain' warnings can I assume it's safe to buy? For example I bought crisps and tortilla chips like this and assumed they would be OK.

We don't eat out often as it is. I think I'd stick to places that have a gluten free menu so are welcoming to start with.

No food prescriptions in our area I don't think. I put our post code in the gluafin site for the free box and it said no.

My son was diagnosed on blood tests alone. They found it when he was diagnosed type 1 diabetic though had had symptoms for years (misdiagnosed). His dietitian and endochronologist said to cut out gluten immediately. We saw the gastroenterologist a couple of months later and he agreed with the diagnosis. Also said that is common not to test further in children now (guidelines).

He had to have a bone scan and increased his calcium intake considerably - coeliacs need much higher calcium consumption. Its measured in calcium stars and shows up on Google. He has his bloods tested every three months but this is included in the routine bloods for his diabeties so don't expect this. He has an annual check up with gastro which is basically a look at his recent bloods and a chat about diet.

We can only get flour on prescription in our area and its such a large amount that I'd never use it all! I do bake though as lots of baked goods are expensive. He prefers Genius bread and says the Warburton ones are the worst so it's all down to personal taste.

We get pizza from pizza hut or dominoes - both coeliac friendly and have different zones/utensils for making their food. He has chips from macdonalds as only the veggie sticks are fried in the oil. Cross-contamination is the massive issue when eating out as like a PP said, a lot don't understand the risks. GF does not = coeliac safe.

When shopping, a lot of foods are 'accidently GF' which is brilliant. You get very savvy at reading labels and join coeliac UK. They have a fantastic app that scans the barcode of food items and tells you if it is safe for coeliacs

Oh, and pasta - like the bread, taste test a few. We found different types of pasta work differently for some reason. Penne from one shop could taste awful but the twists are ok. We've found it can stick together a lot (especially spagetti) so stir frequently and put in the water when it's boiling, not when cold.

Use toaster bags. Get a separate tub of butter for the fridge just for him. Mark it gluten free and if you use butter in your cooking, use that one not one that is contaminated by wheat.

My sons consultant said family members only need testing if they show symptoms - this could be different depending on where you live. His brother has also had symptoms for years but our GP at the time was rubbish so we had to have the consultant write to the practice to tell them to test him.

DD joined Coeliac UK, and she's got the app where you can scan foods in. That's been a life saver when shopping. I think you pay an annual fee? www.coeliac.org.uk/home/

It's a really good source of info too.

Yes, if there's no BROW and no main contain all is good. We are lucky we have really strict labelling laws here. There is a FB group, Coeliac disease for beginners and it's really helpful. If you're ever unsure if you photograph an item and share it, people can advise.

Rice noodles are good
Quorn ham and quorn pieces
Various supermarket own brand fake chicken and bacon. Sainsburyd do vegi ribs
Frys fake chicken nuggets. There’s two types one is gf. I can only find it in Ocado
Morrisons do frozen chilli cheese bites
Plenty of oven chips are gf but do check as some aren’t
Quorn mince is fine

If you have a morrisons near you they have a pretty good range in the freezer, including things like deep fried mozzarella, vege bites, pretty good own brand margarita and goats cheese and red onion pizzas / chips / curly fries etc. Some morrisons also do fresh gluten free pizzas from the counter which are really good but you have to make sure they take cross contamination precautions.

Costa coffee I believe have recently started stocking marks and spencers gluten free sandwiches as part of their range if he's is eating 'out and about'.

Keep an eye out for gluten in surprising places like in fruit juices / cheap cola and also in lots of cadburys chocolate.

Doves self raising flour is amazing, I use normal recipes and cakes turn out great although.
I use Paul Hollywood gluten free pita recipe (but use doves self raising flour.) sometimes with the nigella seeds sometimes without. Shape it into pizza bases, pitta and dough balls. www.bbc.co.uk/food/recipes/gluten-free_pitta_bread_09625/amp

I would go gluten free now, if you haven’t seen a consultant yet there will be a long wait for endoscopy. I have children at two gastro departments and endoscopy waiting list is crazy, DD coming up to a year wait. Once you have seen the consultant you could then add gluten in if needed but you prevent doing further damage while you wait.

Thank you all for the suggestions, information and recipes all very helpful. I have just picked up some Genius wraps to try and also have the Doves/Freee flour.

Has anyone found GF breaded Mozzarella or brie? Unfortunately he doesn't do chilli. Frys fakes chicken nuggets is a good one if I can find the GF version

Both ASDA and Morrisons do gluten free breaded mozzarella sticks. ASDAs are just in the normal food aisle.

Alternatively you can get a bag of gluten free breadcrumbs (I think most of the supermarkets do these) and he can make his own. I use Morrisons gluten free breadcrumbs to make breaded fish/ scotch eggs/ schnitzel etc (appreciate a lot of those aren't veggi!). I also sprinkle them sometimes on gluten free macaroni cheese or cauliflower cheese.

Dolmio type cheese sauces for pasta/lasagne are all generally gluten free surprisingly as they use maize as a thickener rather than wheat flour

Great will try to find the Mozzarella sticks and breadcrumbs. Tried the Linda McCartney red pepper veggie sausages tonight but unfortunately they weren't eaten as they apparently look like turds!

Morrisons do vegi frozen sausages which are gluten free, but don’t think they’re advertised as gf. Dd has also had sausages from sainsburys in the past. I find morrisons quite good to be honest. They also do beer battered onion rings in the fridge section which are gluten free.

Just had a good look at Morrisons too thank you. I think we had their vegetarian sausages in the past and they were good. Name and packaging has changed hopefully still taste nice. They are now Morrisons Plant Revolution Meat Free Sausages. Only £1.50 so will get some

Hi I just thought I'd update as you were all so helpful. I have finally had a call from the consultant (it took the GP almost 4 weeks to make the referral!).
The consultant said as his ttg levels are over 10x normal there is no need for endoscopy and we can continue gluten free. The appointment is likely to be around September now which is kind of what I expected.
My son is doing well on the new diet. He never had stomach symptoms but now he is ravenous!! Eating huge packed lunches often 2 breakfasts and just had 2 large bowls of pasta. Also seems more energetic but not sure if that's just want I want to see!
He has decided to eat fish after 6 years vegetarian so that has helped him and helped us feed him. Our local chip shop do gluten free 3 nights a week so he's had fish and chips twice. Also had a pizza express meal where he enjoyed GF dough balls and sea food pizza - thanks to who ever suggested that.
School have been rubbish so far. They outsource their catering and the company won't provide a menu with allergens all they do is put allergens on the pre prepared stuff. Their suggestion was that he speaks to the chef each day but I don't know yet if they can provide a meal each day or if he's likely to go hungry without a back up packed lunch! Plus like many schools only 30mins lunch time so no time to mess around.

how old is he? at primary school at least they have to have a photo up of kids with dietary requirements with details in the kitchen and then provide alternatives accordingly.... although my DD who is allergic to cows milk protein and soya would be given rubbish alternatives (e.g plain rice a few times a week, and usually raisins for pudding!)

Cross contamination is an issue too so to be honest i would send him in with food. You can get food flasks to keep GF pasta warm etc and then you know that he has safe food to eat... being glutened is no fun!

Good news on the lack of endoscopy. Shit about the unhelpful school situation. Dd was in sixth form when diagnosed and just lived on chips and jacket potatoes at school which was probably safer than trying to engage with them.