Jump to content

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


  • Please log in to reply
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.
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.

#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.




1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users

 

Tell us what you think

to WIN 1 of 2 $500 Coles/Myer gift cards

Dealing with a toddler's morning tantrums

Your schedule is not important to your two-year-old, and you cannot convince her otherwise. So what can you do?

Child in suitcase 'could have died eight years ago'

A child whose remains were dumped in a suitcase in the South Australian bush is believed to have been a girl aged between two-and-a-half to four.

MP breastfeeds baby during parliamentary session

An Argentinian mum and politician has caused a stir on social media after being filmed breastfeeding her baby.

My baby's first seizure

It was 1am on a cold winter's night when I woke suddenly to the screams of my 12-month-old son. Our lives were about to change forever.

Portable pools 'more dangerous than permanent ones'

Inflatable and portable children's pools may be required to be sold with compulsory fencing to prevent backyard drownings, with some experts even floating the idea of a ban.

Heartbreaking moment mum kisses her one-week-old goodbye

At 11.07am on April 2 this year, Sarah Marriott welcomed baby Sebastian into the world.

The amazing Tee Pee bed and kid-friendly Frankie Bunk bed

These kids' beds definitely fit the brief of providing personality and personal space for little people who are moving up in the world.

The funny things kids say when you're pregnant

Since becoming noticeably pregnant, my son has taken more of an interest in the sibling he'll soon have.

The real problem with having one child

In this age of political correctness, it seems the one subject still subject to discrimination is that of the Only Child.

Six-week-old baby found dead, believed stabbed

A neighbour heard a child screaming before a baby was found dead, believed to have been stabbed, in a house in Newcastle.

The fire hazard in more than 70,000 Australian homes

So far, 206 Samsung washing machines have caught fire and some have exploded. But many remain in people's homes.

How having a baby can bring on OCD

We all know that having a baby can turn your life upside down - and it can also bring a raft of new anxieties and worries.

IVF gender selection being considered for Australian parents

Couples using IVF may be able to choose the gender of their babies and women could be financially compensated for donating their eggs.

The best age to get married (according to the latest study)

Not too young, and not too old. That's reportedly the best age to get married. Not everyone agrees.

Yes, you can get pregnant before your period returns post-baby

After giving birth, the last thing you want to think about is contraception. But you can get pregnant before your period comes back.

Fellow diner rewards mum after toddler's tantrum

Parents of toddlers everywhere know the feeling. After working up the courage to take your child out for lunch or dinner in public you are rewarded with a mid-meal meltdown. 

IKEA begins massive safety campaign after two toddler deaths

Two children were killed when pieces from their Malm furniture line tipped over.

Beaneasy: sweet nursery furniture with a twist

If you're looking to introduce an organic element into your baby's nursery but want to step away from natural timber, we have the perfect alternative.

A dad's guide to hyperemesis

I am in no way qualified to advise women on how to cope with hyperemesis, but I've learnt some lessons that might be worth sharing with other partners.

Woman adopts best friend's four daughters after cancer tragedy

Best friends share everything - and for these two life-long friends, that includes family.

Baby Leo's mum excluded from $500K trust 'for her own protection'

Samuel Forrest didn't want his wife as a trustee of their baby Leo's half million dollar trust for her own "protection", it has emerged.

Confirmed: men gain weight when they become dads

Men who become fathers experience weight gain and an increase in body mass index, a measurement of body fat based on height and weight, according to a new, large-scale study

Carer investigated over washing machine photo posted 'for a laugh'

She said the photo of a boy with Down syndrome in a washing machine was taken just for fun, but no one else was laughing.

Mum's premature labour nightmare after high tea salmonella outbreak

An opulent high tea at a luxury Melbourne hotel has left 44 people with salmonella poisoning - including a pregnant woman, who went into early labour.

The day my son started a fire

Would you know what to do in a fire emergency? How safe is your home and family?

Prince George celebrates second birthday

Prince George's second birthday has been marked by the release of an official picture showing the toddler smiling as he is held by his proud beaming father.

Which beauty treatments are safe in pregnancy?

Is it safe to use fake tan, hair dye and nail varnish during pregnancy?

The five ways I know my 'baby' is no longer a baby

The truth is, I can no longer deny that my walking, babbling, somewhat-independent little miss is no longer a bona fide 'baby'.

Review: Cybex Platinum PRIAM pram

I'm not usually one who believes in love at first sight but that's exactly what happened when I first saw the Cybex PRIAM.

Get your FREE Baby & Toddler Show ticket!

Get your free ticket to the Sydney Essential Baby & Toddler Show for September 25-27 - register online now.

 
Advertisement
 
Advertisement
 
 
 

What's hot on EB

Tell us what you think

to WIN 1 of 2 $500 Coles/Myer gift cards

Why I'm choosing to be a single mother right from the start

I believe that you get out of families what you put into them, and I will give mine my all.

Mother and baby units are a necessity for mental health, not a luxury

I have had two postnatal psychotic episodes. The first when my eldest child was six weeks old, and another after my second child was born.

30 French baby names

French names are always in fashion, but a few have risen in popularity in recent years.

New mum's Spanish maternity nightmare

A British woman who gave birth in Spain has told of her ordeal after spending weeks trying to convince medics the baby girl was hers.

Preparing Rover to be a good dog with baby

Some friends of ours say that it's dangerous to have a dog around a newborn and that we should start looking for a new home for him. Is it?

Company offers to ship working mums' breast milk home

First Apple and Facebook announced they would pay $20,000 towards the cost of their female employees freezing their eggs, now IBM in the US has come up with an innovative new policy aimed at retaining female employees.

Prince William speaks of his pride at wife Kate and 'little joy of heaven' Charlotte

The Duke of Cambridge opened up about family life and his plans for the future in an interview to mark his first day as an air ambulance pilot.

'Glowing' eye saves baby Mason's life

A simple photo taken in front of an evening fire gave new mother Sarah Bowers the power to save her baby's life. 

Parenting and decision overload

Of all the advice people told me before having a baby, no one warned me about the amount of decisions involved.

Proof that toddlers can't be left unsupervised - ever

Parents of toddlers all know the moment when realise your child is being suspiciously quiet. It can only mean one thing - trouble!

Meet Jeremy Ryan, The Voice contestant with seven kids

If you have trouble recalling the ages of Jeremy Ryan's seven children on The Voice, you're not alone. So does he.

Baby's adorable reaction to wearing glasses for the first time

Getting glasses can be a formative moment in a person's life.

Police officer buys supplies for family after mum of six caught shoplifting

When a mum of six was caught shoplifting nappies, clothes and shoes for her kids, the last thing she expected was for a stranger to pay for her haul.

Why pregnant women on antidepressants shouldn’t panic about birth defect claims

The risk of having uncontrolled depression is far greater than the small increased risk of birth defects that may be associated with specific antidepressants.

Arrests made over children's birthday party brawl

Police have raided properties and arrested a number of people over a brawl at a child's birthday party at a play centre in Sydney's west.

Family shares awesome drone baby announcement

Looking for a creative way to share some big news? Look to the skies, like this family did.

Young warrior Owen defies doctors' predictions

Little Owen DiCandilo's name means "young warrior", and it's a description that perfectly fits the inspiring 18-month-old

Advice for dads: when to approach your wife for sex

The exhaustion that comes with caring for young children often means romance between parents becomes a thing of the past.

I might be fat, but I don't need saving

I've been fat for pretty much most of life, besides a few crazy moments of being less-fat, but for the most part I've existed on this earth with a little more meat on my bones than desirable.

The rookie mistakes we make as parents

Since the dawn of civilisation, generation after generation of new parents have had to rely on instinct, trial and error - and sometimes get it wrong.

 

FREE TICKET

See Pinky McKay live in Sydney

Get your free ticket to The Essential Baby & Toddler Show and save $20 - register online now!

 
Advertisement
 
 
Essential Baby and Essential Kids is the place to find parenting information and parenting support relating to conception, pregnancy, birth, babies, toddlers, kids, maternity, family budgeting, family travel, nutrition and wellbeing, family entertainment, kids entertainment, tips for the family home, child-friendly recipes and parenting. Try our pregnancy due date calculator to determine your due date, or our ovulation calculator to predict ovulation and your fertile period. Our pregnancy week by week guide shows your baby's stages of development. Access our very active mum's discussion groups in the Essential Baby forums or the Essential Kids forums to talk to mums about conception, pregnancy, birth, babies, toddlers, kids and parenting lifestyle. Essential Baby also offers a baby names database of more than 22,000 baby names, popular baby names, boys' names, girls' names and baby names advice in our baby names forum. Essential Kids features a range of free printable worksheets for kids from preschool years through to primary school years. For the latest baby clothes, maternity clothes, maternity accessories, toddler products, kids toys and kids clothing, breastfeeding and other parenting resources, check out Essential Baby and Essential Kids.