Hi all,

This is a bit of a long story so I will try and keep it short......

Basically my 3.5yo DS has Coeliacs, although the diagnosis hasnt been confirmed with a biopsy (he becomes very ill very quickly with the smallest amount of gluten making a gluten challenge pretty much impossible for the time being). His Pead Gastro (the only one in WA) said to try the gluten challenge again when he is 5 and assume that he does infact have Coeliac Disease.

Anyway, she sent me for a blood test which returned a low positive and then sent me a letter recommending I have the biopsy. To be honest I kind of ignored it...I really really didnt want to deal with the possibility that I too may have CD, silly I know.

Fast forward six months and I am at the doctors confirming my second bout of glandular fever in 12 months and having a gazzillion blood tests....one of which was CD serology. The results are in and this time its a high positive. The tests also confirmed low iron and folate. My doctor told me to either have the biopsy or start a GF diet immediately.

My question is, should I bother with the biopsy now? Im not well (bit of an understatement) and given DS is already on a GF diet, should I just go on the GF diet also and do the gluten challenge when DS does at 5yo???

Thanks for reading.....and TIA for any advice!

personally i would always do the biopsy (for your ds as well as for you) for a few reasons.
knowing for sure that you actually have CD and not just a gluten intolerance (ie: cheating with CD could kill you down the line, with a gluten intolerance it's uncomfortable)
if you have CD you have the opportunity to try the treatments they are currently developing, you won't with GI
being taken more seriously with CD than GI at school, eating out etc

a lot of people find that once GF there is NO WAY they want to go back on a 'gluten challenge' as it makes them very very sick. IMO it is always best to stay on gluten, have the biopsy and then go GF, not go on and off.

good luck!

I agree strongly with Brazen - go for the biopsy for yourself and your DS.

Coeliac Disease cannot be formally diagnosed without a biopsy. Mine and my DS's bloods were both highly positive - and we opted for the biopsy and formal diagnosis for the reasons Brazen stated.

My GP insisted I keep eating gluten (I didn't take it seriously at first, I was very sick, and didn't believe food could make me feel that bad) and proceed to a biopsy. I'm sorry but it makes me angry that a paed gastro advised for your DS to stop eating gluten without doing a biopsy!

Good luck.

SE

What are these Brazen? Do you mean with tape worms and so on?

You definitely need to have the biopsy!

My DS is low gluten at the moment, so we haven't cut it out completely. I plan to fill him up on it after Christmas, and arrange for another blood test with a different Dr.

He had a bit more gluten on Sunday (more than he currently is having), and I have him home from Kinder today, he has a temperature and has been complaining of feeling sick - this has been happening on and off since July this year, and since he has been low gluten in the last month, he has improved dramatically.

It took 2 months for the GP to refer him for the first blood test. I haven't got his gene test results back yet. I need him officially diagnosed, as we can't even get through to people to take DD3's Coeliac diagnosis seriously - having no official diagnosis would make it SO much worse.

My DS has missed so much kinder and creche this year, with being sick. Definitely get your DS tested now, to save the trouble later on when he is at school or kinder.

I agree, get the biopsy done ASAP. I went on a GF diet before having a biopsy and had a lot of difficulty getting a proper diagnosis.

Thanks for the replies.....I really needed an objective opinion!!

I have an appointment with my GP next week and will schedule a biopsy.

Its a bit harder with my DS though...he loses bowel control, leaks brown water almost constantly and his anus becomes ulcerated with even the smallest amount of gluten. It literally takes at least six months to see the Pead Gastro. My DS would almost certainly end up in hospital if I re-introduced gluten. I have just had a thought though....if that did occur, would a biopsy be done immediately?? Maybe its an option??

Oooh your poor DS, I feel for him . We were at the stage of almost losing bowel control with my DS, but didn't quite get there (went from severe constipation last year to explosive exits a year later). Gluten is NASTY stuff. Maybe the hospital thing you mentioned would be worth a shot? I think one of the Mums on here went down that track (Jordansmummy?). Fingers crossed you don't have to wait too long.

oh your poor ds
i guess i wouldn't do anything until talking to the paed gastro. such a shame he was taken off gluten before the biopsy was done (not blaming you)
hopefully he can be on gluten for a minimal time before biopsy

I wish I had known more about it when I first sought help for my son! I find the whole situation really frustrating....I had a PG appointment for last month (waited over six months) and the hospital rang to cancel it the day before!!! Needless to say, I havent received another one yet.

Agree with the others about getting the biopsy. This is the gold standard and the only way you'll get a confirmed diagnosis. It might be a PITA for getting life insurance but you are taken more seriously and at least you know.

Generally the biopsy is done really quickly. Pretty sure my husband was in within a week and this was over the Christmas/New Year period. And the results are pretty quick. Then you can join the coeliac society in your state. You can go GF after you walk out of the clinic.

You may also be able to schedule the biopsy first and then get the doctor to write the referral before you go. This will mean less waiting.

I'm guessing she's taking about vaccine trials etc.

sorry, yep all of the above plus i'm sure there'll be more soon

Just wanted to post this link, as this pdf has some good information about the need for a biopsy.
http://www.coeliacsociety.com.au/downloads...20diagnosis.pdf

It does say that for some who have been gf and go on a gluten challenge, the symptoms are bad initially but might settle down a little bit whilst on the challenge. I have missed that part when I've read this article in the past.

Hi

I am from WA too, I was diagnosed by Biopsy 19 months ago at Murdoch, both kids had blood test and DD also tested positive and went for a biopsy we went privately thru Murdoch although the gastroenterologist does not work privately anymore so you have to go thru PMH.

DS tested negative although I had him retested a year later when me and my daughter had our one year blood test and luckily I did as it came back positive.

I was told about an 18 month waiting list for the pead gastro at PMH. I was not happy about that and he had terrible pains and poos for a week so I took him to PMH ER, long horrible day but we did finally get to see a Gastro registrar and he agreed with the biopsy and since we went to the ER and had already seen a Gastro Registrar we didn't need to do the appointment with the pead Gastro and was put straight on the list for biopsy had to wait about 3-4 months we go in next week. Although thankfully my son is doing ok eating gluten, we just have him complain about tummy aches now and then, really we wouldn't have suspected CD if it wasn't for me and DD.

Reintroducing gluten is much harder especially if he is getting so sick.

I would go to the PMH ER for sure I think that is the first step, and if he was unwell at the time it would be even better for you although it would not be nice to purposely make him stick

I would also be ringing them often since they canceled your appt they should contact you need another one.

As for yourself, I would definitely do the biopsy, not only to confirm but for peace of mind I had the Endoscopy and Colonoscopy at the same time just to make sure there were no other nasties that come along with untreated CD. If you have private health its pretty quick, I only had to wait 2 week for the biopsy and 1 week for the results. I had Dr Chong and Murdoch.

The other reason I would do biopsy is one day there will be a vaccine and those who were not diagnosed correctly may not be entitled to it. I know that may be years down the track but your son may want to go down that road one day.

Sorry that was a bit long, Good luck x

If it becomes impossible to get the biopsy because he is too sick to wait, I'd take him off and reintroduce gluten when he is older and his gut is more recovered. What I would not do is keep him on gluten while he is so sick if it is impossible to get the biopsy in a timely manner.

I'm also not fussed by the idea that you *must* get a coeliac diagnosis before going gluten free on the offchance that the vaccines or the ginger tx or whatever work. If the vaccines become available, then you still have the option of eating gluten and having a biopsy then. That's what we would do--my kid went GF 10 years ago and I've never run into major dramas because we don't have the coeliac label.

The other thing I am intending to do is have the gene test done.