[PreciousPetal]

DS has had chronic constipation, tummy pains and nausea for a long time now. His blood test has come back positive (barely) for TTG antibody (level is 31, >30 is positive). His paed is adamant that he does not need a biopsy done and that the blood test alone is reliable, citing that it has a 99%+ sensitivity and specificity, and to go gluten free now.

Everything I have read stresses the importance of a biopsy. DS's gut symptoms should be a reasonable guide as to whether the change in diet is helping, but I am wary about imposing a lifelong diagnosis on possibly inadequate investigations, not to mention the difficulty I am anticipating with explaining to a 5 year old why he can no longer eat most of his staple foods. DS's paed has a special interest in allergies (not that coeliacs is an allergy...) and I would assume has more up to date information than I do, but I'm still a little wary.

Has anyone encountered this before? I'm also in WA where, as no doubt many of you are aware, its near on impossible to see a paed gastro .

This post has been edited by PreciousPetal: 19/04/2013, 12:55 AM

[Hattie]

My DH has coeliac disease, which diagnosed initially via blood test with confirmatory biopsy. His doctor would not 100% confirm diagnosis without the biopsy, even though his blood test level was more than 70.

Having said that, he was diagnosed 3 years ago and blood testing may have become more sophisticated since then. The paed may also be thinking about how awful the biopsy procedure may be for a 5 year old and want to spare him from it if possible??

Julie

[butterflydreamin...]

It is very common for the blood tests to show false positives (or at least was five years ago, has he had just the one round of blood tests or have they been repeated?

If repeated blood tests have showed a positive I wouldn't push too much for a biopsy unless you really want him to have one and would just change the diet however if only one round of blood tests have shown the positive i would at least be asking for a repeat before making any diet changes.

Even if the bloods or a biopsy come back negative you should keep in mind that symptoms of gluten intolerance can be very similar to coeliacs so a gluten free diet may benefit him anyway.

[Sinister Bonnet]

Has he had a gene test? That's a really borderline coeliac positive .

Can you get a referral to a surgeon to do the biopsy? It doesn't have to be a gastro or a specialist surgeon.

[Type1TTC]

Our DS is going to have the biopsy done to confirm coeliac disease in FEB (earliest date avail).

He has had two lots of bloods, 6 months apart, and he came back just above the indicator levels (not sure of the numbers). The paediatric gastroenterologist said that I could wait and have another lot of bloods done but he's pretty sure they will come back with an increased level.

I um-ed and ah-ed about having the procedure but I think it would be best to know for sure and I think a biopsy is the only way to do that. I don't think I'd rely on blood only unless they could say it was 100% accurate.

[PreciousPetal]

Sorry I haven't been able to get back earlier, thanks for the replies .

I wasn't very clear about the blood results . 20-30 is "weak positive" and >30 is "positive" with the notes adding that its a moderate to strong positive from 30. It would make sense for DS to have coeliacs but its such a big diagnosis, especially for a child, that I don't want to risk getting it wrong. Plus it has implications for his younger brother, who has negative bloods but an enormous belly and constipation.

I'm not too fussed about checking him for the genes, I don't think it will confirm things iykwim, thank you for the suggestion though .

I'm going to ask DS's GP to check with the pathology lab's immunologist regarding how reliable the antibody testing is, and failing that to speak to a gastro paed registrar at the hospital about current recommended practice. Unfortunately WA is in the dark ages, with the only specialists that scope kids being paed gastroenterologists, and they ONLY work in the public system with an enormous wait. We might dip into our savings and see if interstate is an option if a scope and biopsy is recommended...

Thanks again .

[foxy77]

You are right PreciousPetal, coeliac disease should be confirmed with a biopsy. I would be strongly pushing for this, especially given the huge life-long impositions a gluten-free diet imposes on a person if you're going to do it properly, plus the effects on his health if he idn't strict about the diet. You need to know definitely one way or the other. GL!

[Sinister Bonnet]

No the gene test doesn't confirm coeliac but it can pretty conclusively rule it out. If the gene test is negative, then you are not dealing with coeliac--our paed gastro says 100%, my DH's gastro says 99%.

Given that you said you are having trouble getting a referral, a gene test that your GP can order might be worth considering.

[ZombieMum]

I would ask to have the gene test done - it won't hurt, and will give you more of an idea if you should spend money to have the biopsy done in another state.


This is a 31 page pdf that you might find useful.
http://www.healthnetworks.health.wa.gov.au...del_of_Care.pdf
It's from 2007, so might be a bit outdated.


I've had 3 kids go through the biopsy, and none saw a gastro. They saw a paediatric surgeon instead, and this meant we didn't have to travel 2 hours to Melbourne.

My friend has a nephew that was referred to a paed gastro, but the waiting list was for a few months. I let her SIL know that she should go back to her GP and ask for a referral to this surgeon and they were seen pretty quickly - they went in as private patients, had the consult early in the week and the biopsy at the end of that week. My kids only had to wait about 2 weeks to be seen by this surgeon as public patients, so it was the better option for us, due to less waiting and less travelling.

[SplashingRainbow...]

Have you tried ringing the coeliac society in your state OP?

They may be able to help you navigate your local system or put you in touch with people who will?

It might also be worth finding out whether you are able to join the society without the biopsy. You may not be able to and it would be a shame to miss out on that support, and recognition of diagnosis for your son.