Sorry for multiple threads, desperate

[Lougle]

I have a poorly 6 year old. She's had bloods done, including coeliacs. The coeliacs results are as follows:

Anti-tissue transglutaminase level (ttg) = Patient has low IgA level so may not be reliable. We have tested IgG Endomysial antibodies to test for coeliac disease instead.
IgM 0.8 g/l
IgA 0.3 g/l (Low)
IgG 0.5 g/L

Any thoughts? Do these results put her in the clear for coeliacs, or should I still persue it?

Sorry I can't answer, but bumping you up & if you get no reply on here, I'd recommend trying the site I've linked to - it has lots of forums for different medical complaints, so used the index to find celiac (its a US site, so that spelling) or gastro - stick to "medical support communities" as they are free & the Doctors do still pop in & anwser too

medical forum here

HTH

Oh good idea! Thanks.

Hi there, saw your thread last night but couldn't reply then (child lying on typing arm).

What are your DD's symptoms? Do you have any coeliacs in the family?

My DS2 (2.10) tested negative in the coeliac blood test. But we are going ahead with a biopsy anyway as he has several coeliac symptoms and his brother is coeliac.

The low Iga result suggests that the blood test for coeliac would be unreliable, I think.

DD1 is lowish weight (18.3 kg at 6.6, 115 cm) and her bmi is drifting downwards. She's now on the 11th centile, I think, having been almost 25th normally.

She is always tired (normally hyperactive, goes to special school, but now her teachers have to feed her lunch).

She's always coming down with illnesses and taking a long time to recover (over 2 weeks for a simple cold virus, for ex).

She has dark bags under her eyes, greyish complexion.

She has chronic abdominal pain.

She has chronic constipation.

The list goes on, really.

That sounds very like possible coeliac. Is there any family hiatory? Even if blood test neg I wd ask to be referred to a paediaatrc gastroenterlogisst to assess for a possible biopsy. Thats what we have done with DS2.

Failing that, you could do a trial pf a gluten free diet - if you do it properly then you shd see rsignificant improvement in a few weeks; Best to see gastroent first tho sd cant do biopsy if gluten free.

Symptoms do sound very like coeliac disease and negative blood test results are quite common. The fact that she has low IgA does make the testing less accurate and can in itself be a sign of coeliac. I would really push hard for a referral to a gastro specialist who may suggest a biopsy as this is the definitive test for coeliac disease.

Are her bloods totally negative? (clueless)

Sorry, no way of telling without knowing the particular lab's normal ranges and a degree in medicine! Did the GP say they were all negative? You could ask the GP what the normal ranges are for each but I still think you should push for referral.

Also, a gastro specialist will be able to investigate for anything else that could cause those symptoms. Ours was very ready to investigate further despite negative bloods. You didn't say whether you have any coeliacs in the family? Or anyone with other auto-immune diseases (diabetes etc.)?

GP left a message to say 'all fine', but I'm not one for trusting (I'm a nurse, but adult, and was told DD1 was 'fine' for almost three years before they realised she wasn't; she now goes to special school).

Family history:

I had atopic eczema which recurs periodically. Also asthma. I had/have chronic fatigue symptoms, never properly investigated, but one episode saw me redeployed I unofficially, and another redeployed officially.

Paternal aunt has systemic lupus.

Family history (maternal) of bowel/liver cancer (great grandmother, great grandfather; grandmother had liver tumour but suspected as secondary, to advanced and near artery to biopsy for primary; aunt kidney and bone but also suspected to be secondary to bowel).

Family history of type 2 diabetes (maternal again).

Forgot to say, all died of their cancers.

well, the auto-immune diseases in the family are (I believe) an increased risk of an auto-immune disease (not necessarily the same one) in other family members - also, possibly some of these relatives had undiagnosed coeliac. Definitely get a referral to a gastro paed. Ours said that pronounced symptoms + a suggestive family history = good reason for a biopsy. And your DD's symptoms are more pronounced than my DS2's.

the biopsy is not fun, but quite quick and straightforward, and worse for you than for your DD.