New Coeliac

[Mydustymonstera]

Hi I’ve been told by my GP that I have coeliac following strong positive blood test results. However I have to wait for consultant app to actually confirm the diagnosis which may involve an endoscopy & biopsy.
in the mean time I’m to carry on eating gluten.
I read that 1st degree relatives should also be tested. I suspect my daughter may have it due to she has always had bowel problems (been treated for constipation for years but also has episodes of loose stools not connected to laxatives, bloating, discomfort, wind).

I’ve not been aware of any bowel problems for me except that now I’m hyper aware and seeing problems everywhere.

im full of questions and would really appreciate chatting with anyone who has this. I only went to GP with low iron!

The coeliac.org website is really helpful at the start as they can answer lots of questions. Very glad you've been told to stay on gluten, so many GPs tell people to stop gluten and that's NOT right, you need to be eating it in case the hospital want to do an endoscopy.

What was your TTG result? My DD was diagnosed with a very low/borderline normal TTG via bloods but then a positive endoscopy, just before she turned 5. She's almost 11 now so we're used to it all but it's daunting at first!

Oh and you mentioned low iron. That's very common with coeliac as you can't absorb nutrients properly due to the villi in the intestine being damaged.

I don’t have it but my daughter does. Your gp sounds switched on, Dd was back and forth for seven years with symptoms inc low iron and in the end it was me who asked them to test for it. Have they given any indication of how long the appt might be?

Generally kids don’t need an endoscopy (sometimes depending how strong your blood results are they don’t even bother for adults now), so get your Dd a blood test while you’re waiting if you can. Your gp is right that you need to carry on eating gluten while waiting for an endoscopy.

There’s lots of good fb groups btw.

When I was waiting for the endoscopy, I started taking my gluten "dose" as three weetabix every evening.

It meant by the time the diagnosis was confirmed, I was well on my way to having my head round a new gluten-free diet and had started weaning the rest of the family on to GF stuff where it wasn't too different (having two of everything is a pain). It also meant that the bowel symptoms were mostly in the evening and didn't interfere too much with work etc.

So that would be my tip.

I love the tip about the ‘gluten dose’! That’s brilliant. It’s been wrecking my head trying to think through gluten free diet changes &, eating ‘last meals’
my TTG level was 128 which GP described as really high. I’ve started taking iron and b12 because both were low.
it might be 6 - 8 months before consultant app :(

Everything is such a wait at the moment.

Hello helpful people bit more advice? So I got a letter from the coeliac service saying diagnosis confirmed on basis of blood tests no need for further testing and to stop eating gluten.
obv I didn’t necessarily want to go through horrible endoscopy but is there any adverse effect to not having this. I guess I won’t have a Marsh score but does that matter?

I'd have thought a diagnosis is a diagnosis.

There's only one treatment, as you know.

And the endoscopy is not much fun.

Sorry to hear this but glad you’ve an answer iyswim. My dh is coeliac. I hadn’t known it’s clustered with a likelihood of t1 diabetes, so when ds2 was diagnosed with diabetes it was a total shock.
We eat really well as a family and have adapted to dh’s dietary needs. Hasn’t stopped us holidaying or going out with friends.

On the back of that diagnosis, I'd start the move to gluten free food. I used to have tea and toast for breakfast. Now, yoghurt and fruit. Instead of a baguette I have salad. Dinner, we've moved to gluten free noodles, rice and homemade chip things.
Embrace the changes - they are often healthier!

Hi, I was diagnosed coeliac 4 years ago, with a tTg of 300. I also didn't need an endoscopy. I started the gluten free diet and my latest coeliac check revealed my tTg is now down to 2! I didn't have many symptoms pre diagnosis, and it was only discovered because I had a raft of blood tests for a different condition.
Having said that, I now realise I was suffering from a feeling of being bloated after eating. I had no reference for this, because its how I've felt my whole life and knew no different. (I'm 62 now! ) Once I started the gluten free diet, I realised I didn't know what it felt like to be satisfied after a meal, because I no longer had this 'full' feeling, so I've had to get used to what full really means. I put weight on initially due to not knowing I'd eaten enough.

Oh, and just to add, my daughter is also coeliac. She was diagnosed at age 20. Her symptoms were severe however, and this is one of the reasons I didn't recognise it in myself.