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diagnosing coeliacs
on bloods and symptoms alone *kind of updated*

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19 replies to this topic

#1 PreciousPetal

Posted 30 November 2012 - 11:10 PM

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  rant.gif .

Edited by PreciousPetal, 19 April 2013 - 12:55 AM.

#2 butterflydreaming

Posted 30 November 2012 - 11:20 PM

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.

#3 Acidulous Osprey

Posted 30 November 2012 - 11:36 PM

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.

#4 Type1TTC

Posted 30 November 2012 - 11:47 PM

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.

#5 PreciousPetal

Posted 02 December 2012 - 10:06 PM

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

I wasn't very clear about the blood results  blush.gif . 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 original.gif .

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 original.gif .

#6 Chocciecake

Posted 02 December 2012 - 10:14 PM

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!

#7 Acidulous Osprey

Posted 02 December 2012 - 10:28 PM

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.

#8 FeralZombieMum

Posted 03 December 2012 - 09:02 AM

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.
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.

#9 SplashingRainbows

Posted 03 December 2012 - 09:30 AM

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.

#10 Katie_bella

Posted 03 December 2012 - 09:56 AM

He does need to have a biopsy to give you all a definative diagnosis.

The blood tests show an increased immune response but don't define what that immune response is to. You owe it to him to give him an actual diagnosis before changing his diet.

Coeliacs disease is not the same as an allergy or intolerence, it is a life-long chronic disease that means his life will never be the same (not saying it will be worse, just not the same).

A positive diagnosis will also have an effect on other family members.

Put your foot down, get back up from your local coeliac society and demand a scope to confirm diagnosis. One short, light anasthetic is worth it as far as i'm concerned.

#11 PreciousPetal

Posted 03 December 2012 - 11:58 PM

Thanks all original.gif .

He is on the list now for a scope at PMH.  He DOES need a biopsy (as you all said and I suspected) and the doctor at the hospital was pretty unimpressed that our paed said otherwise.  They aren't expecting too long a wait as he just needs a scope rather than a clinic review, so fingers crossed!

#12 FeralZombieMum

Posted 04 December 2012 - 08:33 AM

Oh that's great news. Hope it's not too long to wait. It's a pretty simple procedure - the worst part is the fasting beforehand, and the waking up afterwards (some kids can be very grump).

Unfortunately you'll find there are lots of doctors (GPs and Paeds) that are extremely clueless about the diagnosis process.  sad.gif

#13 PreciousPetal

Posted 19 April 2013 - 12:53 AM

Well here is an update of sorts.  And (I assume) the reason that biopsies are needed.

DS1: TTG was 31 initially (10-29 is weakly positive, >30 positive).  Apparently he *looked* like he had coeliac (mucosal scalloping) but the biopsy returned as normal.  And his TTG was down to 7 on the day of the scope  huh.gif .  

DS2: Original TTG was fine.  Checked it again given that the boys share the same symptoms and we thought coeliac was a done deal for DS1.  TTG still negative but IgA was marked as 'low' (identical value to the previous test) so AGA was checked and the IgG was positive.  So pointed to coeliac disease given the context.  His scope looked normal and his biopsy returned as normal too.  The kicker is that his TTG on the day was 59 so well and truly positive.  Both boys have the right gene combination for coeliac disease.

So a supposedly highly specific blood test that presumably does not indicate coeliac disease in this case given the negative biopsies.  WTF that means I don't know, its not the type of antibody that can be dismissed as not being important. DS2's bloods weren't through when the gastro registrar spoke to me so I don't know what to make of it.  What I do know is that DS1 has a follow up appointment a couple of months after the scope and that DS2 appears not to.  

Sigh.  This parenting gig is tough enough without needing to navigate this kind of stuff.

Oh, and if I could do it all again I'd take the boys interstate for their scopes.  Our "immediate" category 1 scope (within 30 days) took four months to happen and we are still waiting for further follow up.  Got to love WA.

#14 yellowtulips74

Posted 19 April 2013 - 01:39 AM

What a drama!

My sister and I are both 'properly diagnosed' coeliac - positive blood test plus biopsy.

My 10yo daughter has had tummy aches for about five years.  I keep having her tested for coeliac but no positive results.  She's been tested for everything else too I think!!!  I've also tried alternative medicine, psychological treatment etc etc.

Everyone kept saying well she's not coeliac...

New Paed said take her off gluten and dairy for a month.  Tummy pains improved and she GREW TALLER for the first time in a year.  She feels so much better she doesn't want to eat gluten or dairy.

She said that she feels so much happier now.  Her class teacher says she's a different kid.  She has a spring in her step now.  She said to the Dr "I thought I was happy before... I thought THAT was happy.  NOW I'm happy!"

I guess what I'm trying to say is, a diagnosis isn't everything, and just because a biopsy says there is no coeliac, doesn't mean your sons don't react badly to gluten.

Good luck OP.

#15 FiveAus

Posted 19 April 2013 - 07:12 AM

My 19yo daughter had all the symptoms of coeliac disease, including rapid, unexplained weight loss. The gene test was positive, which was not a surprise as my brother and sister  have coeliac disease, but the biopsy was normal.
She was tested for other disorders.....IBS, bowel cancer, Crohn's disease etc, but everything came up clear.

She is now being treated as gluten intolerant, and has now started to gain weight and looks healthier, and says she feels much better.

#16 a letter to Elise.

Posted 19 April 2013 - 07:46 AM

I have been diagnosed coeliac without the biopsy. I had high positive blood results, and positive gene test, along with drastic response to dietary changes. I know it is not the gold standard for diagnosis, but all of my doctors are satisfied, and so am I. The reason why I decided against it, was because I was initially misinformed by my old gp when I did my blood tests. He told me to go gluten free straight away. The difference to my health was so drastic, there was no way you could convince me to eat gluten again for long enough to get the biopsy done. There has been no disadvantage in doing this, and none of my specialists have ever had an issue with it, or questioned the validity of the diagnosis. I did investigate whether I should start eating gluten again recently to get the biopsy, and my doctor advised against it.
The difficulty with diagnosis is that even the biopsy can miss it. My sister had 3 biopsies before they finally confirmed she had it, and had to suffer because she couldn't stop eating gluten. Even if their biopsies were negative, if they are still symptomatic in 6 months, I would re test. One thing to consider is that if they do go gluten free as you suspect intolerance, they will probably get more sensitive to it, and it will limit your options for testing in the future.
As there is such a strong family history of coeliacs for us,my children are both gluten free for now (they have been gf since birth). I am due to get swab tests done for the gene for both of them. If they have the gene, I will keep them gluten free, and they can decide if they want to eat gluten and get further testing done when they are older.

#17 FeralZombieMum

Posted 19 April 2013 - 04:30 PM

The damage can be patchy - so it's possible it's still Coeliac disease, but the samples they took have not been damaged.

#18 PreciousPetal

Posted 19 April 2013 - 09:20 PM

Thanks, each of your posts has made me feel better  wub.gif .

I'm going to keep the boys gluten free.  They are coping and its not a hardship at all on DH or myself to have a gluten free home.  Whether they are officially 'coeliac' or not, if excluding gluten does the trick we'll stick with it.  We just need to wait and see if it helps.

I think I was a bit blindsided by the idea that it could be an unknown something else that is causing their issues, particularly since there has been a backflip in DS1's blood test.  I think my preferred method of thinking now is that the biopsies could have missed it and the blood test isn't always reliable, particularly given that DS1's scope looked the part.  The chances MUST be slim of it being something other than coeliac given the various factors involved, or at least I hope that is what they will tell us  yyes.gif .

Thanks again original.gif .

#19 Acidulous Osprey

Posted 23 April 2013 - 04:53 PM

DH went GF about a decade ago but was recently persuaded by the gastro to trial gluten so a coeliac biopsy could be done while they were checking out other stuff.

The biopsy was negative but he got pretty sick during the few months he was on gluten and he is doing a lot better now he is GF again.  I would like him to do the gene test but he is refusing to do it.

The gastro who I did not warm to was adamant that the biopsy was gospel and that DH needed to just keep on with the gluten diet and that there was no reason to exclude gluten now.  Whatever, dude, whatever.

#20 Genabee

Posted 27 April 2013 - 08:43 PM

It appears to be one of life's mysteries...

My father, uncle and sister are diagnosed coeliac. I have battled with IBS symptoms for over 10 years and virtually accepted it as normal. More recently I have learned that I have the gene and suspect I am gluten intolerant, if not coeliac as after a period of time being gluten free, any gluten sends me into a spin for a few days. The last time we checked, my sereology was negative, so I am yet to have a biopsy. I'm not in a rush to have it though as it means going back on gluten.

Last year I suspected DD was coeliac. On three separate occasions, she tested negative to the serology. She had a scope and initially the gastro thought it looked fine, however the biopsy came back as positive for coeliac. She has the gene. So for the next 12 months we are going with the diagnosis and we will probably do another scope next year to follow up. I will say that she is a different child on a gluten free diet and she has finally started to grow for the first time in 2 years.

Trust your instincts... I really had to push the point with the paediatrician and even the gastro., because she was a baby and her original bloods were negative... They weren't in a mad rush to give her a scope if they didn't have to. The strong family history was enough for them to want to 'rule it out' though.

We are now a completely gluten free household and Mum and Bub are so much better for it. I don't want to risk having gluten in the house as DD is sensitive to trace amounts, so a gluten challenge and biopsy for me aren't on the cards any time soon.

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