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Autoimmune disease

Coeliacs, how were you diagnosed

13 replies

Ramina · 27/01/2022 15:51

Hi my son is in this process and I wanted to know how you were diagnosed. Was it just with a blood test or a biopsy? We have been told that he’s not going to have a biopsy and they are just going on his bloods. Surely to be 100% you need to have an gastroscopy?

OP posts:
Foxymoxy68 · 28/01/2022 23:55

Hi, I had a positive blood test and was referred for a gastroscopy which I got the result for today…positive as expected. The biopsy is the gold standard but I think a positive blood test is a very good indicator.

Bimblesalong · 28/01/2022 23:56

Husband had blood test followed by gastroscope. This was a while back - not sure if protocols have changed.
Wishing your son all the best.

Foxymoxy68 · 28/01/2022 23:56

What age is your son? The gastroscopy is not a pleasant procedure so can understand why it wouldn’t be recommended for children.

Haudyourwheesht · 31/01/2022 21:06

DD (3) is in the process of being diagnosed. Unless we want a biopsy they'll just go with 2 blood tests. The first was borderline though, so I'm not sure. I don't want her to have to go through a biopsy but I also don't want to put her on a gf diet for life unless we're really sure.

caulkheaded · 01/02/2022 22:46

Just bloods. Told it’ll be at least 9Month wait for endoscopy.

CovidCorvid · 01/02/2022 22:53

European paediatric guidelines have said blood test only for kids for ages. Think it took covid for the U.K. to follow this though. If the bloods are high enough there’s no need for an endoscopy. Even before covid it was a six month wait for an endoscopy which when you have to carry on eating gluten is no joke.

penny14 · 01/02/2022 23:10

My son was diagnosed at age 2.5 after two confirmed blood tests within the same week in 2019. There was no requirement for a biopsy for children which I was pleased about after having to continue with gluten products for that week which was making him so sick. I couldn't have carried on giving him gluten after I knew why he was so I'll. good luck to your son.

Vicky1989x · 08/02/2022 21:37

I was diagnosed by blood test alone (I was 21 at the time). My results were well off the scale so they said endoscopy wasn’t necessary (which I was happy about!).

Almostascot · 08/02/2022 21:46

I was just blood test as well. My levels were off the scale so they said biopsy wasn’t necessary. They do test again after a while on gf diet to ensure levels are falling. And lots of other blood tests to rule out. Oat of the alternative diagnosis. In kids blood test only is now the standard. Even in adults they are moving towards just blood tests unless there is any reason to doubt the results.

Stormyinacoffeemug · 08/02/2022 21:47

Diagnosed by blood test alone. The endochronologist said endoscopy waiting lists in our region were extremely long even before covid so covid kind of gave them an excuse to stop doing them. We did see the gastroenterologist to confirm diagnosis properly who said the blood test results were very high so it was certain. The gluten free diet saw improvements in week.

Ramina · 10/02/2022 16:07

Thank you so much everyone, as we haven’t seen anyone yet about it, apart from having the bloods done and a phone call from our GP, I have so many questions. We were told his blood was high for coeliac disease on the phone. That was over 3 months ago. I don’t know how high. Then a letter from the gastroenterologist from the hospital saying he was certain it was and my son should follow a GF diet. Wouldn’t they want to do another blood test just to confirm for definite? And shouldn’t he at least be seen?

OP posts:
Almostascot · 10/02/2022 17:59

Your GP will have access to the blood result levels if you want to find out how high the levels were. I did have a telephone call with the consultant a few months after the diagnosis to discuss my diagnosis. There was a waiting list so it took a while to speak to the dr and they sent the letter months earlier so that I could start the gluten free diet. Is there any indication that your son is on a waiting list to see someone? The contact details for the dr/department should be on the letter so you could phone/email and find out maybe? I was also offered a phone appointment with a dietitian to give advise on diet. What age is you son? I think they usually do see children to check on growth which can be affected by coeliac disease but they would not want to delay starting a gf diet for this.

The consultant said if my results had been borderline they would have repeated the blood test to confirm but my levels were so high it would have been pointless. He said it was more useful to repeat the blood tests after following a gf diet for a while and see if the levels had fallen.

Tilly0921 · 12/02/2022 22:58

Hi, my son was diagnosed at 14 months last June with just 2 blood tests, his TTG was above the limit required for biopsy which I was pleased he did not have to go through.
He was very unwell at the time but is now a happy, healthy little boy. Good luck with your son.

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