Coeliac disease. Any tips?

[Scoobydoobydoobydoo0987]

Hi, wise mumsnetters. After a routine set of blood tests, the GP told me I have coeliac disease. I wasn't aware they were even testing for this, and I don't think I had been having any symptoms apart from tiredness. I'm just looking for any tips to manage this in the future. Has anyone been affected by this? I'm waiting for a referral but was just wondering in the meantime the effect of not eating gluten.

It will depend on whether they are sending you for a biopsy to confirm the diagnosis or not. If they are then you need to carry on eating gluten until the biopsy otherwise they will be unable to confirm the diagnosis fully. You should be referred to a dietician to help you, although you might not be. Basically you cannot eat gluten containing foods, e.g. standard bread, cakes, biscuits, pasta etc. there are a lot of gluten free goods available, however they do vary in price (v. Expensive to reasonable). It is also fairly easy to find naturally gluten free foods without too much hassle, especially if you cook from scratch. It will also depend on whether you are advised to avoid gluten free oats in addition as several manufactured foods contain these, but if you are sensitive to them you need to avoid even these.

There are several Gluten Free groups on Facebook etc as well as individual bloggers.plus specialist bakers you can buy delicious treats from should you so wish to.

A totally gluten free lifestyle is doable and can take some adjustment to get used to, but is a lot healthier for your body and your tiredness should go once you have been following the diet strictly for several weeks. You are likely to find that should you accidentally eat a gluten containing product after being gluten free for a time that you will notice side effects and feel really ill, with out realising now how it makes you feel because you still eat them daily.

Thanks so much for explaining all that. Yes, I'm being sent for a biopsy to confirm, but I guess one of my questions is how accurate the blood test is? I'm under the impression it's very high, and the actual biopsy is just the final confirmation. They did say, carry on eating as usual for the time being. I'm definitely going to miss pizza 🍕 I know you can get gluten-free versions, but in my head, it doesn't taste as good!

Definitely carry on eating as normal until you have had the biopsy and results. If you like making your own pizza then the Schar and B-Free gluten free (GF) bases are good. If buying ready made from the supermarket then the White Rabbit ones in Sainsbury's are lovely.

Bread is where you are likely to find the biggest difference. First because it is very expensive, second because it doesn't stay fresh for very long a lot of the time and thirdly, and probably the biggest one, you need to try the different brands for taste and softness etc. currently Warburtons ones are good for their Tiger Bloomer and square soft rolls. It depends on the type of bread you like to eat. Schar brown ciabatta rolls that you finish off in the oven are gorgeous with home made soup.

@badgerhead i find that most bread is fairly gross. And I always always toast any gluten free bread i get. It tastes better. I also find the more expensive the better it is. I have the one from Tesco the finest bread that is pre cut.

op when looking for gluten free foods please shop around. Not all supermarkets stock everything available. So I do seem to spend a really long time going from supermarket to supermarket to find the food I like. And not everything tastes the same. Cereals as an example … the own brand cereal as an example is not good. But branded names are better.

I also find they go out of stock for longer. So if u find something u like. Stock up.

I find eating out easier in the last few years. But I have to say vegan has taken over a lot of gluten and dairy free space which I’m pissed about. But do look at the back of packets. They tend to shove in a lot of sugar to make it taste better. I always take a bag of snacks with me when I go out for the day. Just incase. It seems like a mind field at first. But u will get there

Being diagnosed with coeliac disease means you'll need to adopt a strict gluten-free diet. It's important to read labels carefully, avoid cross-contamination, and consider joining support groups for advice and recipes. A dietitian can also provide personalized guidance during your transition to a gluten-free lifestyle.

My mother was diagnosed as coeliac late in life. She'd had no typical symptoms but was referred by an osteoporosis specialist who learned she was an (extreme) migraine sufferer. They were right and cutting out gluten was life changing for her although too late to reverse the contributory factor in her osteoporosis. Point is, it presents differently in different people (4% lead with migraine) and there are long term effects which outweigh the inconvenience of going gluten free. This is a good information source https://www.coeliac.org.uk/home/

The blood test is pretty accurate but they won’t accept it for actual confirmation. It is possible to get a false positive blood test but this is more likely with a lower level just within the positive range. For kids they are now accepting a diagnosis just on bloods if the result is over a certain level. I suspect adult diagnosis may go this way.

for pizza we now make our own using Caputo flour as pre made ones have never been as good.

join all the fb groups especially U.K. ones as people will post new gf food they discover in the shops.

I have coeliac. It stops me eating most of the things that make you fat, and forces me to cook from scratch. It’s probably the only reason I haven’t gained loads of weight as I’ve got older. There’s always a silver lining!

Welcome to a life of reading labels! Seriously though, it’s not that bad. So much easier than even a few years ago. There are lots of options in supermarkets and at restaurants. Yes they taste different but you get used to it.

I echo the suggestions to look at Facebook groups. Also check out the Coeliac UK website as there is lots of info on there. You can also see if they have a local group in your area. There are less now but they can be helpful if there is one. My local area has a group with a Facebook page where local tips are shared and a helpful mailing. You don’t have to be a CUK member to join the local group.

If you are already a cook it will be easier because you know what goes in your food and you will just have to make adjustments. Becky Excell is a very popular gluten free recipe source. Lots of foods are naturally gluten free. For those that aren’t there are lots of replacements, but they tend to be higher in fat and sugar. A tip if you can manage it is to take a break before you start to try the gluten free alternatives, particularly bread. Give yourself a chance to forget what normal bread tastes like. Warbourtons tiger loaf and square rolls and Schar frozen rolls are my favourites.

I hope your biopsy goes well.

Becky Excell cookbooks are excellent

I’m have issues with gluten and am egg white intolerant, the frozen pizzas from Asda are good. Most gluten free bread has both and tastes like savoury cake but there is one in Tesco’s by Juvela that’s as close to bread as possible, they also do excellent pizza bases but they are only available online. The schar bread is ok but tends to be tiny. Morrisons have a decent free from range. It’s a very expensive trial and it error. I’ve just had schar Jaffa cakes they are too dry.

We went to a Freefrom even at the NEC which was helpful as there was lots of samples. Think they went bust and got bought out, the new companies first event isn’t until next summer and is in a London which is too far for us.

Good luck with the biopsy.