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Children's health

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Original poster

Coeliac Testing - 2/3 year old

13 replies

WingingIt101 · 10/03/2023 23:03

When I was 13 I was diagnosed with coeliac disease.
I have always been asymptomatic in the sense that I've never felt unwell by eating gluten. It was only found by accident in my DM who was experiencing unrelated abdominal pain, and doctors then advised to test my DB and I as it is hereditary - I was positive he was negative.

I now have 2 DC. Eldest is almost 3 and youngest is newborn.

DH and I have agreed we want to test the children for coeliac disease. We can't test the baby until she's older as she will need to have gluten present in her diet for the test to work but think it's right to test the nearly 3 year old.

We know it's little to "voluntarily" put her through a blood test and potential endoscopy but think given she has a first degree relative with coeliac it's better to know in case we need to make changes to her diet, plus it will entitle her to further protective medicines like immunisations that are routinely offered for those with certain autoimmune conditions.

My wobble is because when we mentioned this to MIL she made a really negative face and said "oooh goodness such a lot to subject a small child to" - she's right, especially if DC needs the endoscopy to confirm. I know she will cry at the blood test. I know she may well be asymptomatic like me and not understand yet why she suddenly has to watch what she's eating.

Are we doing this too early? Being over cautious? We were so certain we were doing the right thing but this really shocked and negative reaction is making me question whether we are subjecting DC to something that will scare her unnecessarily.

Has anyone else done this sort of thing this young? Advice very much appreciated!

OP posts:

Are your children’s vaccines up to date?

Set a reminder

nocoolnamesleft · 11/03/2023 00:21

How many times will you test? They could be negative now, and positive in a few years.

Ihopeyoudance · 11/03/2023 00:28

I don't believe the endoscopy is necessary for children now if the blood tests are conclusive and there is a genetic factor. My daughter was diagnosed at 2 and this was just coming in then (she's now 12). She was very very ill from it though. Coeliac UK should have the details for you to research.

Original poster

WingingIt101 · 11/03/2023 04:19

nocoolnamesleft · 11/03/2023 00:21

How many times will you test? They could be negative now, and positive in a few years.

Yes I'm aware that it could develop at a later point however our thinking was we might never know from her reaction to gluten (you wouldn't with me - even if I ate it now) and we don't want her to be doing untold damage for years when we already have an indicator she may be at higher risk. I guess we will have to cross this bridge when it comes to it!

OP posts:

Original poster

WingingIt101 · 11/03/2023 04:21

Ihopeyoudance · 11/03/2023 00:28

Thank you that's reassuring - I had asked the GP at the referral and he said he thinks it will be dependent on the strength of result of her blood test. It would be ideal if she didn't have to have the biopsy but mil has got me second guessing whether we are doing the right thing at all!!!

OP posts:

Caspianberg · 11/03/2023 05:35

It’s fine. Mine had blood test to check for everything anyway as he already was diagnosed with nut allergy the year before via blood test. He wasn’t gaining weight much so they did that test at the same time ( he doesn’t have coeliacs). He would have been almost 2

QuintanaRoo · 11/03/2023 05:48

You could definitely test for the gene and levels initially. If the genetic test is negative i guess you never need to retest. If the genetic test is positive but levels are normal keep an eye for symptoms plus consider another blood test in a few years. Untreated it raises cancer risk as well as causing malabsorption issues so i think important to know.

and standard advice now is that endoscopy isn’t required for children. Just the blood test.

Original poster

WingingIt101 · 11/03/2023 09:01

QuintanaRoo · 11/03/2023 05:48

and standard advice now is that endoscopy isn’t required for children. Just the blood test.

Thank you yes that's one of the reasons we want to know - to protect her as much as possible against other potential problems!

OP posts:

alpinia · 11/03/2023 09:04

Yes, like the others say. It's a genetic test they do now as the starting point. No gluten consumption needed!

Bronzeisthecolour · 11/03/2023 09:10

We tested my 2 year old- bloods only,my 4 year old had been diagnosed on bloods only as there is a genetic link in family.

My 2 year old didn't even notice. It was at a hospital anplayworker literally stuck a musical book under his chin and got him to look at that whilst sat on my knee, numbing cream on arm and bloods taken before he noticed!. He's older now and no symptoms but will get him retested in next year or so just in case and will keep doing so just in case. Lots of my family have it.

Anewuser · 11/03/2023 09:14

Some children undergo worst tests so as it’s just a blood test, I’d definitely do it. All for the greater good, as they say.

Original poster

WingingIt101 · 11/03/2023 11:27

Fab thanks so much everyone - feeling much less terrible about doing it now!!

OP posts:

joiyc · 11/03/2023 11:32

Over reaction from your MIL who probably doesn't recognise the issues coeliacs causes and thinks it's an 'intolerance'. (Apologies if I'm projecting my own MILs ignorance here 😄)

A blood test isn't a huge deal for a child, so I would start from there and see how it goes.

Greenbeans123 · 11/03/2023 11:56

My dc has coeliac very bad, they take autoimmune drugs and are tube fed. I was advised that my other dc should be blood tested every 5 years or if they have symptoms. Then they would do an endoscopy if needed this is not always needed these days. I think in your position I'd have the blood test and go from there. I wouldn't have an endoscopy if no symptoms (I say this as a parent who's dc have had multiple).

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