Coeliac type thing not showing in blood test?

[Looseleaf]

Hello
I would love any advice.

Dd and I can't eat wheat, very clear cut and both feel awful if we do but we have never tested positive for coeliac. For a long time we were both simply ill as the GP never found anything wrong.

I did show up as having a strong immune response to wheat, rice and corn by going through a naturopath which helped me feel almost normal again but especially re the children would rather a doctor's help!

Anyway my real concern is DS (aged 3.5) as again he's been very inactive, swollen belly, pale and I saw an allergy specialist at St Thomas' who said saw no reason at all to keep him off wheat and again coeliac test negative.

Today he's had really pale poo I remember DD having too and stomach ache / constipation.

Is there something I'm missing? Our problems don't seem to show up on skin tests either but my instinct is DS has something similar to us and can I test for it via our GP or what is causing our general gut problems?

I'm so confused!
Thanks

Has your DS been eating wheat daily for at least 6 weeks before being tested?
His symptoms certainly sound like coeliac. You could ask for the coeliac gene test, although a positive result doesn't mean you are coeliac, a negative result could rule it out. Also, you could ask for a referral to a paediatric gastroenterologist.

Thank you. Yes he'd been eating wheat daily. He also really isn't growing and tiny despite dh and I being average and tall respectively and DD didn't grow well until we realised her issue with wheat. She's caught up.

We already saw a paediatric gastroenterologist but they really were sure if his blood test was negative too for coeliac there was nothing to stop him eating wheat.

I'll always listen to doctors over my instinct but I just really feel sure there's an issue here and am interested there's a gene test. Thank you

Has your Ds had a full blood screen to see if he has vitamin deficiency?

He was deficient in iron but the GP didn't give him anything. I bought a supplement he didn't like in juice so it's still in the cupboard and just been trying to help through focussing on his diet& giving him red meat regularly but his appetite has really slowed too

I really appreciate your support and questions as it must be really boring but I really feel anxious to get him bouncy and growing better if it's related

Given his symptoms I would either
a) keep pushing the docs for an answer to his symptoms. It's all very well them saying it's not coeliac, then what is causing his symptoms. False negatives with blood tests do happen, have they considered doing an endoscopy? Have the considered NCGS (non coeliac gluten sensitivity)?
b) trial him on a gluten free diet.
I completely understand you wanting support from the doctors, both my DSs are coeliac and some of our family could not understand how I could keep giving DS2 (who had symptoms very similar to your DS) gluten until given an official diagnosis.
I had to push the doctors very hard to get both my DSs diagnosed, don't be afraid to fight your DSs corner, and don't let them fob you off. Good luck

Have you been in touch with Coeliac UK for advice, the symptoms your son has are textbook.

Have a look at the Coeliac UK website - I'm sure there is something on there about non-Coeliac gluten intolerance. Basically you react to gluten although you don't test positive for the Coeliac antibody. They also have a very helpful phone advice service.

Oops MsDran, crossed post. Good advice!

MrsDran you are such a star, I was really feeling very lost. And I will try Coeliac UK and then our GP again. I find it hard to be pushy enough as it's hard (and seems inappropriate) to argue with a doctor but I've left it a decent time trying a normal diet as they said and still feel very worried

Just because the blood test is negative doesn't mean he hasn't got coeliac disease. Your doctor should automatically refer your son for an endoscopy as its the only definitive test for establishing whether or not he's coeliac. I've had two NHS endoscopies for coeliac disease following negative blood tests, fortunately they showed that I was clear but I don't understand why your doctor wouldn't refer him for an endoscopy. Its not a pleasant test, but more bearable if he's sedated and it would give you all a final answer.

Even the website is very helpful. You really are kind as feel so 'helped'.

The confusing thing is that the non-coeliac gluten intolerance doesn't damage the gut apparently while mine definitely seems damaged (waiting to see gastroenterologist myself about this although they inexplicably just delayed my appointment by another 6 weeks!) and we all seem to have signs of malabsorption so swollen tummies and despite being slim I can no longer exercise as takes so much out of me.

I might ring them tomorrow as hadn't even been aware of them and lovely to have experts out there

Rainy that's interesting although I'd almost rather start with my endoscopy which waiting for,as we are so similar and worry about the procedure on him if it turns out not to be coeliac again. It's a tricky one.

Dd never had an endoscopy as it was so clear she couldnt have wheat already once we changed her diet , but she did have a test where wheat made her pulse speed up so showed she reacted that way but I really don't understand enough about it

A child would have biopsy done under general anaesthetic, so a painless procedure.

I am non coeliac gluten intolerant. Did not show up as coeliac on any tests. I was ill for 20 years and had reached a point I was so ill I could barely walk. Stopped eating gluten out of sheer desperation. Immediately made a dramatic health improvement. I then contacted a world expert in NCGI and he diagnosed me as a classic case. My case was written up in the British Medical Journal.

NCGI is very hard to diagnose - only be excluding every other possible explanation. I have been tested for wheat allergy and am not. It is only gluten (and lactose due to long term gut damage).

Many doctors simply will not consider of even know about NCGI but it makes people extremely ill like coeliac. I found Coeliac UK not very helpful.

Loseleaf - ou need to find a real specialist. I will PM you.