Think DD is Coeliac but no diagnosis

[CruelsummerTS]

I’m concerned my 13 year old daughter may have inherited / will inherit coeliac from her father.

She has had blood tests a year ago due to some red flag issues but they showed no diagnosis of coeliac.
But she has lots of signs and is v similar to him in many ways as a child. She has a few warning signs but not symptoms as such.
Her father wasn’t diagnosed until his 30s.

I want to put her on a gluten free diet to see how it affects her health and growth. I’m concerned about her safely growing and going through puberty etc if she does have undiagnosed coeliac and the effects could have on her health.

But I’m worried that to get an official diagnosis in the future she’d need to eat gluten for weeks beforehand, which would obviously be difficult and distressing if she’s grown up without it.
And obviously in the meantime I fear giving her potentially annoying dietary requirements and causing her food problems to deal with if it’s “for no good reason”* because she’s not diagnosed by a medical professional.
(*quoting a family member)

WWYD??

Even when eating gluten it is hard to get a positive diagnosis unless lots of of damage is done to the gut. It took 2 goes for my DS to test positive despite really strong symptoms including significant gut bleeds. But once diagnosed and following a very gluten free diet (including no oats or oat products) he is generally very well now.

if you want to pursue the diagnosis ensure 6 weeks of gluten at every meal (equivalent of 2 slices of bread with each meal)

I’d ask for another test and also the gene test as well. My eldest dd was found to have coeliac because she was tested when her younger sister had it. I wouldn’t remove gluten from her diet at the moment.

I didn’t know there was a genetic test. I’ll look into that.
Thanks for the advice.
I don’t think her warning signs are particularly severe, so I’m worried it won’t show up in bloods.

I would go see the GP for advice.

We have done already about a year ago, we were pretty much fobbed off as her symptoms are not severe but I pressed the issue that her father has it so it could be inherited. They gave her a blood test and it came back not coeliac. I can go back but nothing has changed so I don’t know what they’d do this time. But I put her details into the Coeliac UK website and it advised a blood test again so I guess back to the GP it is.

Can you get the genetic test privately? It would put our minds at rest to get the other children tested too.

I'm gluten intolerant (but not coeliac). Given my digestive symptoms, I was advised to try an exclusion diet anyway. I would suggest you try going gluten free for 6 weeks or so (have a definite end date) and see if it helps. If it does, keep going. If not, go back to eating gluten.

Tbh I’d probably try GF to see if it helps, my son is coeliac (bloods / biopsy diagnosed) and I started reacting a few years ago. Went to see GP who ran bloods (ok) but was normal when eating GF so he advised i just treated it as if I was coeliac. I have annual bloods for Thyroid. I had a dexa scan last year and am now on calcium tablets.

also Gluten intolerant but not a celiac

I cant eat white anything thing without suffering , but wholemeal in moderation and Im grand.

I go all out on one day a week with the white bread and butter because I cant wipe it completely from my diet ( I love it ) and suffer with loose bowels and grippy tummy for the two days after

When you sat her symptoms aren’t severe, what as they, exactly? How much gluten was she eating before the blood test?
As someone who was diagnosed coeliac a few months ago, I’d be really reluctant to put a teen on a GF diet unless it’s medically necessary as it’s not a nice thing to have to cope with. What I mean by that is it’s social eating that is impacted the most.

Thanks all we have asked for another blood test before we start anything. I am convinced she will carry the gene and I think it’s worth avoiding gluten if it means that coeliac will not be triggered in the future. She is small and has tummy issues and I need to know that gluten isn’t inhibiting her growth in her teen years.

Did she eat plenty of gluteny food every day for the 6 weeks up to her blood test?