Coeliac disease diagnosis

[Coeliacdiagnosis]

A few weeks ago I had blood tests for coeliac disease (and they also tested my iron levels etc). I phoned back and was told it was all back and normal but it turns out that my iga tissue transglutimase test only just came back today, and I got a text saying to contact the surgery.

I was told by a nurse that the results indicate I’m coeliac, because I was so shocked/worried I asked her to just tell me what the issue was. I have a phone appointment with a doctor on the 5th to confirm it.

My mum is coeliac, as is my aunt, and this is the third test I’ve had. I have chronic pain, fatigue and gastro symptoms and while I’m glad that hopefully that’ll get sorted I’m also sad and feel a sense of loss. I’m also shell shocked! At least I’ll get my vaccine soon hopefully, but I’m a teacher so I’ve been teaching this entire time and it turns out now that I’m technically CV 🤦‍♀️

Is anyone else on here coeliac? Any words of wisdom or experience to impart? At least I found out relatively early (27!)

I'm have CD and it was a shock when I was diagnosed 10 years ago but you do get used to it and sounds like you have a good idea of what's involved with the family history.

It did take a while to come to terms with. It very much felt like a door had been shut in my face and it does take some spontaneity out of life but you adapt. You have full sum with the sense of loss but GF food is so much more available now it's so much better.

You don't need to worry about being CV though as there no risk with CD. CoeliacUK have some good info on this.

@quinin thank you for your reply! I definitely have taken it quite well as my mum lives a totally normal life obviously, she eats lots of lovely food, but like you say... it’s the spontaneous nature of being able to just eat whatever that is taken away. I feel sad because she says things like “I can’t remember how proper bread tastes” she was diagnosed shortly after I was born and I remember her having to get her bread on prescription 😂 it was like a brick!

I guess maybe I need more tests - but my cousin who is a doctor and just had her own tests for it said that if that test is positive it’s a very strong indication. That’s good to know about being CV! It wouldn’t really change how I feel about anything or how I do things, but still!

Check out
Www.glutenfreecuppatea.co.uk
Fantastic blog packed full of recipes. She's also recently released a recipe book which we use loads 'how to make anything gluten free'
She's on social media - Becky Excell

I was diagnosed as Coeliac about 30 years ago after getting anaemic. It is inconvenient often when eating out in resteraunts but they are getting better and you get to know good ones.. At home it is no bother at all and l am very careful about the no gluten bit. I've been fine. My sister has it too. Don't worry, it will be OK.

I was diagnosed in 2012. As well as mild toilet issues, my iron plummeted to 4. I was constantly dizzy/faint. I actually thought the worst, as a friend died of bowel cancer aged 25, and my symptoms were similar. So I was actually relieved it was CD.

The choice of food is so much better now and I second having a look at Becky Excell. Her cook book is great.

Good luck with your new gluten free journey!

Thanks everyone. It feels strange to know that every time I’ve been teaching and felt faint/sick etc it’s not just me lacking resilience, I’m actually ill. I am also slightly anaemic.

Just cried in Tesco because there’s nothing in the meal deal section I can eat now... not sure why I’m surprised but it just upset me.

In normal times you will be invited to have an endoscopy but I think during the first lockdown they diagnosed by blood test only. You do need to be eating gluten for the endoscopy so I hope your Dr lets you know soon whether you are having one or not.

Hopefully you will also be offered bone scans too. Also yearly flu vaccines and Pneumococcal vaccine.

The CV bit for covid is due to some but not all coeliacs having issues with their spleen so to be safe they vaccinate all coeliacs, so you may not actually be more at risk but worth chasing the covid vaccine.

It is a shock to get a diagnosis but fantastic that you will be feeling so much better soon

Coeliacuk.org has a load of resources and has a list of restaurants and takeaways that are safe for you to eat at. Also free goodies each month, a database of gluten free food so might be worth a look.

Gluten free food is everywhere now and so much better than it used to be even the bread is pretty good now.

I am sorry you have a diagnosis and it will take a while to get a hang of the new foods and diet but hopefully as you begin to feel so much better it will be worth it.

Sorry about the Tesco meal deal

Look out for the Tesco Gluten Free Chicken, Bacon & Lettuce Sandwich it is yummy.

Some kettle crisps are gluten free

I would second/third the book from Becky excell. The bread is really good and there are loads of nice baking things in it. We have decided to make every recipe!

Definitely stay eating gluten until your GP has confirmed you don't need an endoscopy. If you aren't eating gluten the tests won't be accurate and lots of GPs don't realise that. If your blood test was high enough then some consultants will confirm without an endoscopy but you probably won't know for certain until you are referred to a consultant.

It's TOTALLY understandable to be thrown by this! My DD was diagnosed at 5, now 8, and I was so upset for her. It's actually fairly okay now we're used to it and things are much, much better than even ten years ago with gf food. However it's a shock at the start and takes time to deal with. Be kind to yourself.

I’d join a few of the groups on Facebook for eating out and gluten free bargains etc. You will find there are lots of things that are GF without you realising (and the other way round).

Do you have to share a kitchen as you need a plan of how to manage that if you do.

It’s overwhelming (I’m only a parent to a coeliac) but at some point it will become second nature.
Look up all the suppliers online (might be on coeliac U.K.) and request samples. Try everything till you find what you like.

I was diagnosed 5 years ago, aged 32, and honestly, it is absolutely fine. It takes a bit of getting used to but once you come to terms with things and learn what you can and can’t eat, you’ll be fine.

I agree, it is frustrating to not be able to grab and go and I miss greggs, but I get by

Thank you all so much; you have made me feel reassured! I hope I don’t need an endoscopy but I won’t find out for a while so I’ll just have to keep having gluten which I did know luckily! I will find out more on the 5th. Yeah with regards to Covid, that’s why my mum has been “vulnerable” @PollyRoulson but we knew the likelihood is that she isn’t actually as I think it’s only like a 30% chance or reduced splenic function? So not too bad! But hopefully I can get the vaccine sooner anyway.

I can’t wait to feel better. I am trying not to think of all the things I won’t be able to have - that is so good that Tesco do a GF sandwich though! My parents have recommended Morrison’s and co op as good too. Luckily my dad is very knowledgeable too and an amazing GF cook! I will definitely check out Becky Excell, I’ve followed her on IG. And Facebook pages are a great idea!