thread: Coeliac diagnosis in children

  1. #1

    May 2008
    Melbourne, Vic
    8,631

    Coeliac diagnosis in children

    Looking for someone who has been through a recent diagnosis of coeliac disease with a child.



    DD has just had a BT for coeliac disease. My mum has it and I'll be having the BT too when I have my GD test in a few weeks, but we did the BT for my DD when we were at the GP last week. No BT results yet, but if it does come back positive, what are the next steps?

    I know what happened with mum - gastroscopy straight away for full diagnosis. Simple procedure for her, under twilight anaesthesia. What do they do for kids? Does a twilight anaesthetic work for kids?

    Possibly counting my chickens before they hatch but I just want to be prepared.

  2. #2
    Registered User

    Oct 2007
    Middle Victoria
    8,924

    Would you need to do a gastroscopy or could you just treat the symptoms (diet etc) and see if they improved?

  3. #3

    May 2008
    Melbourne, Vic
    8,631

    It isn't recommended HotI. The BT on it's own is not a full diagnosis and if you eliminate gluten, then to get an accurate diagnosis later she'd have to go on a "gluten challenge" diet for six weeks, which for kids includes eating 2 slices of wheat bread every day. For my mum, having even a crumb of gluten now makes her violently ill - upset tummy, cramps, bloating, diarrhea, sometimes vomitting. I could not do that to DD, for six weeks.

    I'd rather have a full diagnosis...

  4. #4
    Registered User

    Oct 2008
    Melbourne
    238

    I'm interested in hearing about this too. I have coeliac disease so I will need to get the kids tested. DS is complaining of tummy aches now and then so I think it's time to do it. How on earth do they get blood from little ones? ds has just turned 3, and I have no idea how I'd keep him still enough!

  5. #5

    May 2008
    Melbourne, Vic
    8,631

    Oh gosh SareBear it was horrible

    The silly pathology nurse explained to DD what she was going to do and DD just freaked out, started crying and didn't want to hold her arm still. The nurse is going "She needs to be completely still because if she moves while the needle is in her arm it can do real damage" and I'm like GREAT.

    We ended up getting the receptionist to come in and hold her down and she just had to do it. When she put the needle in DD stopped carrying on and looked down at her arm curiously like "what's going on here?" and it was over before she even realised. When the nurse pulled the needle out, DD cried a bit and said it hurt at that point, but she was pretty good.

    I reckon don't tell him what's coming.

  6. #6
    Registered User

    Jul 2009
    618

    Hi OP

    My DD was diagnosed with Coeliac a few months ago. She spent a few nights in hospital before we got the diagnosis, she was very sick. (vomiting, losing weight and muscle tone, lethargic). She is two now.

    We were given the option of the endoscopy but after speaking to the Drs we chose to change her diet and take it from there. Her blood test was off the charts and cutting out gluten was an instant improvement. We didn't want her to go under again as she had already had an MRI and I didn't want to put her through anesthetic again if I could avoid it.

    We went for her four month check recently and again opted not to do the gluten challenge and endoscopy. She is a different kid on the gluten free diet and we decided that when she is older she can choose to check further, but for her Dr and for me ... The answer is clear that it was gluten making her so sick.

    Just FYI that although the endoscopy is the "gold standard" you can still opt to change the diet and take it from there. there is also a gene test to see if they carry the gene that is not so invasive (we haven't bothered... Her recovery speaks for itself)

    Also. The gluten free diet is challenging. But once you know the right things to look for and the right questions to ask when eating out it isn't so bad

  7. #7
    Registered User

    Mar 2006
    7,046

    Hey lovely, for a gastroscopy for kids they get a full GA but they give drugs to reverse it at the end. They don't get twilight. The reversal meds mean they recover pretty well. Seen heaps and DD had one last year (after she decide to become a human money box). Happy to answer any Q's about scopes.


  8. #8
    Registered User

    Jan 2008
    Central Coast NSW
    2,160

    This is something I've been thinking about as well. My DS doesn't show any sign of gluten intolerance so no rush, but if the blood test suggested an issue, I would go for the endoscopy. You need an endoscopy for an "official" diagnosis and to join the Coeliac society etc.

  9. #9
    Registered User

    Mar 2007
    Melbourne
    4,031

    My DS2 has recently went through this a year ago. It was straight for the gastroscopy /endoscopy as that is the best way to get a 'true' diagnosis. The blood test is not always accurate I have been told. After DS2 has the endoscopy I was referred to a dietitician, she is one who specialises in my DS2's condition and also coeliacs, she is in her 70's and worked at the RCH for many many years and has also written books on the condition, her name is Dorothy Francis and she is amazing. She explained she gets quite angry and frustrated when she hears parent's talking of only a blood test for coeliacs as it is not conclusive.
    We saw a paedatric gastro guy at Cabrini. DS2 went fully under as the specialist took biopsy's down his esophagus as well as checking out his intestines and further down. Well worth in my opinion to get the correct diagnosis.
    It's never pleasant seeing your little one's go under a general or come out of it distressed if they react this way, the end result is worth though.

    Just one other thing to mention is if this is the diagnosis the specialist is looking for, it is important not to exclude the gluten or wheat from the diet prior, as they need to see the 'true' reaction and damage unfortunately.

  10. #10

    May 2008
    Melbourne, Vic
    8,631

    ... She explained she gets quite angry and frustrated when she hears parent's talking of only a blood test for coeliacs as it is not conclusive.
    ...
    Just one other thing to mention is if this is the diagnosis the specialist is looking for, it is important not to exclude the gluten or wheat from the diet prior, as they need to see the 'true' reaction and damage unfortunately.
    Thanks Heather - I know, I get a bit angry about it too as my mum is currently fighting off a whole lot of illnesses due to her undiagnosed coeliac disease, the worst of which is severe osteoporosis - she has been told she has the bones of an 85 year old (at 60) and she isn't allowed to pick up my kids as she may actually break her spine

    I've also got a friend who is undergoing the gluten challenge diet because her GP advised her mum at 10yo to eliminate gluten, now at 27 she is trying to get a diagnosis for coeliac which she can't get without going back on gluten. She's suffering terribly, poor thing.

    Anyway! (See - high horse) I've got no intention of altering her diet without a full diagnosis. Can't remember if I said this above or not (on my phone sorry) but DH asked if we could do that if we get a positive but due to mum's complications, I want a full diagnosis, not a possibility.

    Thanks everyone for the reassurance about the endoscopy. Sounds like it might be less than traumatic than the blood test!

    MG - might have a chat if we get a positive BT result.

  11. #11
    Registered User

    Jul 2009
    618

    Hi ladies.

    Just wanted to point out that my decision to accept a diagnosis without a scope was not just from a GP and was not taken lightly. This was after a hospital stay, meetings with a gastro team and many discussions with a pediatrician at the children's hospital.

    It was a decision my DP and I agonized over but we made the choice based on our daughters circumstances, the advice we were given and out own feelings about her being under GA again and the risks that brings as well.

    I understand that we all make different choices but I don't think it is fair to be "angry" at parents who make the choice we did.

  12. #12

    May 2008
    Melbourne, Vic
    8,631

    You're right Meercat - every circumstance is different and we should not judge anyone until we have walked a mile in their shoes! I am sorry if I caused any upset - it sounds like you guys were doing it really rough and you made an educated, informed decision on the best welfare for your child. I applaud that

    What I do not applaud or agree with is people like my friend, who knows NOTHING about coeliac and gluten intolerance, nor any of the associated possible syndromes, suggesting that I simply take my DD off gluten. I may have jumped down her throat a bit For us, it is less clear. DD is a happy, healthy 3yo who has no obvious signs of anything, apart from the dermal sensitivities and sometimes a bit of a funny tummy. So we are a little less clear on what's going on. And due to my mum's diagnosis and her chronic illnesses that have stemmed from undiagnosed coeliac, I want to be sure.

    But - that's getting ahead of myself. I can ring between 2pm and 3pm for BT results. I will cross the bridge when I come to it as to whether we need gastroscopy/endoscopy or not. I read on the coeliac society website that sometimes in kids under 4 they recommend a repeat BT in three months as the results can be inconclusive, so that is better than contemplating a GA.

    One step at a time for us.

    (ETA - just re-read that, we really shouldn't judge anyone at all, but I hope you get my drift...)

  13. #13
    Registered User

    Oct 2008
    Melbourne
    238

    Thanks for the advice about the blood test, I'm not looking forward to it but it has to be done I guess.

    How were the results? Hope it was good news!

  14. #14

    May 2008
    Melbourne, Vic
    8,631

    Just thought I'd update - BT results were all clear. Very relieved. Would have been easy to change but it is nice to know we don't need to - at least until I have my test and that's hopefully all clear... We'll see.

  15. #15
    Registered User

    Jun 2012
    12

    Unhappy 3.5 year old scopes, blood tests, extreme iron deficiency

    Need to some advice urgently!

    3.5 year old son has suffered from severe reflux since birth, since then we discovered he is allergic to dairy, eggs, nuts and others. It is possible the dairy allergy may have caused the reflux, some Dr's think so some dont.
    Anyway after 3 scopes under GA and biopsies we have seen that the burns that he had right up to his vocal cords have healed (possible from all the reflux medication helping or maybe the removal or dairy or both).

    Anyway biopsy shows gastro inflimation and signs of ceoliacs. Further blood tests (x 2) show Ceoliacs as well. This is not being addressed util another set of BT's in 5 months. If has not changed nothing will be done. No idea what will happen if has changed.

    BIG PROBLEM IS: long term iron defficiency. He is now meant to be on 7ml of ferro liquid a day but he wont take it. I have tried mixing in juice (he does not drink juice), jelly, chockie,coke anything its just tha strong he gags and throws it up. We have tried crushing half a tab of gradumet but he does not eat enough food for me to hid it in sucessfully. Now he wont even take panadol, he thinks I am trying to poison him I am sure.

    He is not sleeping well and his diet is getting worse, he just wont eat. Its a miracle he is still growing.

    How can I get his iron up if he wont eat or take the medicine?
    This is killing me, he wont let me help him and I am loosing my patience!

    HELP!!!!!!!!!!!

  16. #16
    Registered User

    Jul 2009
    618

    I am by no means an expert but I would be questioning why they are not actioning the signs of coeliacs or 5 months! My daughters appetite came back almost instantly after we commenced her new diet!

    Also maybe ask about a different iron supplement? I use spatone and that is tasteless when mixed with juice? DD just has a small glass of juice each morning and has no idea she is taking the iron.

  17. #17
    Registered User

    Jan 2008
    Central Coast NSW
    2,160

    I too question the wait on a Coeliac diagnosis! Regardless of his appetite his body won't be able to absorb adequate nutrients with his bowel damage! He must feel terrible, I was mess physically, mentally and emotionally before my diagnosis and change of diet

  18. #18
    Registered User

    Jun 2012
    12

    Well after the advice I have been given here and talking with my husband last night we have decided not to wait for the 5 month test. We are taking anything with gluten in it out of his diet. I realise that this will definatley effect what little he does eat, but I have to try and see if removing it will help his tummy feel better and then he might be more willing to eat better and maybe even some meat which will help his iron deficiency.

    If you know of any good and simple recipes please let me know, particularly bread. He hated teh gluten free bread at the shops.