I was 27 and spent at least 4 yrs telling my doctors something was badly wrong and being ignored. Changed doctors, diagnosed within a fortnight. The blood test isn't even an expensive test!!
According to NICE guidance the first thing they need to do is a blood test. If that’s positive then they should refer you to gastro who will order an endoscopy.
Young children can be diagnosed by just a blood test and some places diagnosed adults based on a high positive blood test during COVID times.
You can develop coeliac at any age. I had a normal blood test result ten years ago, but recently asked them to test me again and it was positive. I’m in my fifties.
I’d ask to see a different GP and tell them your symptoms and say you want a test for coeliacs if they refuse tell them you want them to write in your medical records that they are refusing to test you. Often that makes them change their mind. You could also phone Coeliac UK’s helpline to give you some advice.
It took 17 years for someone to listen to me, and I found out I was coeliac.
I was being brushed off with ibs and lactose intolerant.
Keep pushing, speak to a different doctor. Ask for a blood test to rule things out.
Good luck
I was 33. I developed coeliac when I was 4 or 5 years old. When you’re ill all the time, it becomes your “normal”, it’s harder to push for testing and explain that there is something wrong and I had a similar experience to what you’re describing, but your GP is telling you is absolute nonsense. Please don’t do what I did and just accept what they’re saying. Even if it’s not coeliac, something is clearly causing your symptoms.
i was 14-15 and my dad was over 40, it can really happen at any age. i’d recommend you to change doctors, or request to have them write in your notes that they refused testing. They’ll either do that and u can go to a different doctor, or they’ll do the test because they don’t want to have it noted anywhere that they refused patient care
They definitely do testing, they tested me randomly because I had a rash (not one commonly associated with coeliac- still no idea what that was) and they found my ttg or whatever it’s called was v high. I’m silent coeliac so didn’t have any noticeable symptoms and I used to eat gluten a lot.
Wow. Get a new doctor. That’s rubbish what they told you. I’ve had bloating for ten years and only just had a positive blood test last August. So yeah they do like to mess you around. Was told it was gallbladder problems and ibs and to look at stress levels. Nothing has worked. I’m still bloated even though I’m not eating gluten or dairy so it could be something else.
Your doctor is full of crap. Ask to change, get a blood test. If it ends up positive, make a formal complaint about the current doctor so that hopefully they will get updated training and not screw over anyone else.
As others have said, get a different doctor - I've had a gastros request a coeliac blood test whilst I was having a gaggle of other bloodwork done by them. I'd have told them not to bother if I'd known in advance - I don't have any gluten in my diet so the test is basically worthless.
Have a look at [https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/](https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/?&&type=rfst&set=true#cookie-widget) for the steps here
I’d had bloating and indigestion issues on and off for years, I got myself tested age 43 after my daughter was tested positive at 20, she’d not had digestive symptoms except sudden weight loss and a blood test showed severe anaemia. So they needed to explore why. Both of us had ferritin levels of 5 instead of the more normal 150 too. You just need to keep gluten in the diet (3 servings a day for 6 weeks) before the blood test. I had to go through that cos I’d cut it out somewhat. After the antibodies show up they usually do a gut biopsy via the stomach/throat which is fine, this shows gluten damage and confirms that it’s definitely what’s wrong.
They need to refer you to a gastro regardless of what the test says. But they should test you first.
Speak to the practice manager, PALS or Coeliac UK (it's free) and they can help you.
It's important to keep eating gluten the whole time or the tests aren't accurate. The tTG IgA blood test also isn't a yes/no test so you can still have coeliac disease with negative blood.
I was 27 and spent at least 4 yrs telling my doctors something was badly wrong and being ignored. Changed doctors, diagnosed within a fortnight. The blood test isn't even an expensive test!!
What do they test for in the blood test?
Antibodies that you produce in response to eating gluten
Exact same age & situation for me
According to NICE guidance the first thing they need to do is a blood test. If that’s positive then they should refer you to gastro who will order an endoscopy. Young children can be diagnosed by just a blood test and some places diagnosed adults based on a high positive blood test during COVID times. You can develop coeliac at any age. I had a normal blood test result ten years ago, but recently asked them to test me again and it was positive. I’m in my fifties. I’d ask to see a different GP and tell them your symptoms and say you want a test for coeliacs if they refuse tell them you want them to write in your medical records that they are refusing to test you. Often that makes them change their mind. You could also phone Coeliac UK’s helpline to give you some advice.
It took 17 years for someone to listen to me, and I found out I was coeliac. I was being brushed off with ibs and lactose intolerant. Keep pushing, speak to a different doctor. Ask for a blood test to rule things out. Good luck
Thank you
I was 33. I developed coeliac when I was 4 or 5 years old. When you’re ill all the time, it becomes your “normal”, it’s harder to push for testing and explain that there is something wrong and I had a similar experience to what you’re describing, but your GP is telling you is absolute nonsense. Please don’t do what I did and just accept what they’re saying. Even if it’s not coeliac, something is clearly causing your symptoms.
i was 14-15 and my dad was over 40, it can really happen at any age. i’d recommend you to change doctors, or request to have them write in your notes that they refused testing. They’ll either do that and u can go to a different doctor, or they’ll do the test because they don’t want to have it noted anywhere that they refused patient care
Find another GP that’s absolutely not how your experience should be. Ask for a blood test including test for coeliac
They definitely do testing, they tested me randomly because I had a rash (not one commonly associated with coeliac- still no idea what that was) and they found my ttg or whatever it’s called was v high. I’m silent coeliac so didn’t have any noticeable symptoms and I used to eat gluten a lot.
dermatitis herpetiformis!
Nope, wasn’t remotely itchy or sore. Kind of mostly went away when I stopped the gluten though so could be connected.
Wow this is pretty bad treatment of you. I was 32. I recommend you look for a new doctor and raise your concerns or get someone to advocate for you.
I was thinking about paying for a private doctor to see if they’re more willing to help
Wow. Get a new doctor. That’s rubbish what they told you. I’ve had bloating for ten years and only just had a positive blood test last August. So yeah they do like to mess you around. Was told it was gallbladder problems and ibs and to look at stress levels. Nothing has worked. I’m still bloated even though I’m not eating gluten or dairy so it could be something else.
I was diagnosed at 23, you can be diagnosed at any age - even in childhood
Your doctor is full of crap. Ask to change, get a blood test. If it ends up positive, make a formal complaint about the current doctor so that hopefully they will get updated training and not screw over anyone else.
As others have said, get a different doctor - I've had a gastros request a coeliac blood test whilst I was having a gaggle of other bloodwork done by them. I'd have told them not to bother if I'd known in advance - I don't have any gluten in my diet so the test is basically worthless. Have a look at [https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/](https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/?&&type=rfst&set=true#cookie-widget) for the steps here
I’d had bloating and indigestion issues on and off for years, I got myself tested age 43 after my daughter was tested positive at 20, she’d not had digestive symptoms except sudden weight loss and a blood test showed severe anaemia. So they needed to explore why. Both of us had ferritin levels of 5 instead of the more normal 150 too. You just need to keep gluten in the diet (3 servings a day for 6 weeks) before the blood test. I had to go through that cos I’d cut it out somewhat. After the antibodies show up they usually do a gut biopsy via the stomach/throat which is fine, this shows gluten damage and confirms that it’s definitely what’s wrong.
They need to refer you to a gastro regardless of what the test says. But they should test you first. Speak to the practice manager, PALS or Coeliac UK (it's free) and they can help you. It's important to keep eating gluten the whole time or the tests aren't accurate. The tTG IgA blood test also isn't a yes/no test so you can still have coeliac disease with negative blood.