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Coeliac/Gluten Free/Wheat Free chat


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#126 Little Bean

Posted 04 February 2014 - 03:57 PM

Hi everyone,
I haven't posted here before, I actually came in looking for advice on the closest gluten-free bread to ordinary white bread, because I want to start my 2.5yo DD on a gluten-free trial. Having now read some of your posts, I'm thinking maybe that is not the way to go and instead was hoping I could share her story/symptoms and ask if anyone thinks they could be related to gluten intolerance before I try to seek an official diagnosis.

So basically, DD slept through the night wonderfully well from a very early age. We thought we were so lucky because we had such a good little sleeper! We'd put her to bed at 8pm and not hear from her again until 6.30am...this all changed suddenly and dramatically when DD was about 5.5months old (and tried her first solids, baby cereal). It was almost an overnight change, like literally she slept badly one night, waking multiple times, and seems to have done so ever since. When she was approx. 8 months old she would wake up every hour or so and need to be settled back to sleep. We put her cot right beside our bed and removed the rail so we could be close to her because the constant waking was a nightmare. We carried on with this arrangement until finally at 18 months DD moved into her own room but she has continued to be a night-waker. Not every hour anymore, but every few hours still. It's always taken ages to get her to sleep, and she sleeps lightly and not very restfully, in my opinion. She would stay up very late every night if we let her, and at bed time often seems unable to drift off to sleep, very restless. Through the day she often seems tired and cranky and, for example, was yawning at 8am this morning, shortly after getting out of bed!

The very first thing I connected her poor sleeping to was the starting of solids but I was told by a health nurse at the baby clinic that it was highly unlikely, just a coincidence and she was probably going through a growth milestone. I've also spoken to my GP about my suspicions and she has brushed me off. The thing is, my DD doesn't appear to be sick in the tummy and eats a lot of bread and pasta, and people are quick to say she couldn't possibly be intolerant to gluten if she's not getting sick. But from what I've read, it doesn't seem that being sick in the tummy is always a symptom. I will list some symptoms below and please tell me if you think any of these fits the bill.

Poor sleep (as above)
Appears tired and cranky even after rest
Very picky eater but will happily eat gluten-heavy foods such as bread, pasta
Very low percentiles for height and weight (5th and 3rd) but high percentile for head (97th!).
Clingy and whingey, wanting to be picked up a lot
Her poos still seem very "food-y" as in undigested and you can often tell if she's eaten certain foods just from looking at them (sorry for TMI)

I can't think of anything else off the top of my head. Thank you if you have got to the end of this very long post. Any and all feedback appreciated. :)

#127 FeralZombieMum

Posted 05 May 2014 - 02:49 PM

*bump*

I've had a great couple of weeks.

Last week I stumbled across some microwavable meals in Safeway. I hardly shop at Safeway, and I never go down this aisle, but was excited to spot Sun Rice has meal packs. They have rice in them. Perfect for those that work and have Coeliac disease.

I bought different varieties (some declare they are gluten free, others have trace due to manufacturing), they were on sale for $3 each (normally $4) and we had a "take away night". It brought back memories of when we used to have Chinese takeaway. :D (well ok this isn't Chinese - BUT the plastic tubs and 'rice' were chinese takeaway. ;). Oh there is a sweat and sour but doesn't say it's gluten free - might have traces.)

https://www.sunrice....ts/ready-meals/

The packaging is outdated in the link. In the new packaging they have gluten free in the top right hand corner.



Then a lady at IGA was doing taste testing, and I thought I'd get out of it by asking if it was gluten free. ;)
Turns out many of her products were! :lol: These were in the deli section, so might be in a fridge section in other supermarkets?
It's Jewel Of India - they have things like butter chicken.
(can't find website to link yet)
http://www.fairdinks...lamb-korma-1kg/

No rice with this one and it serves 2.

So both of these brands have some ready meals that are gluten free. :D

Has anyone else made any food discoveries recently?

#128 Rilla

Posted 05 May 2014 - 03:21 PM

Hi everyone,

ZombieMum directed me to this thread, so can I please join in?

I am still waiting for my biopsy to test for Coeliac Disease - not long to go.

Can anyone tell me what the biopsy involves? I haven't actually met the gastroenterologist who is doing it, as based on my blood test (it was a very high result), he booked me straight in after my referral from my GP. All I've managed to gather is that it is done under "light sedation". What does this mean exactly?

Based on advice from my dietitian and my experience eating gluten every day this last few weeks for the biopsy - a fair bit more than usual, even when I wasn't actively avoiding it - I am going gluten-free anyway. Obviously, I need to know if it's CD or not though.

Thanks :).

#129 FeralZombieMum

Posted 08 May 2014 - 10:37 AM

View PostRilla, on 05 May 2014 - 03:21 PM, said:

ZombieMum directed me to this thread, so can I please join in?

Everyone is welcome to join. :)

You don't even have to ask. :p


It's been a bit quiet in here recently.

View PostRilla, on 05 May 2014 - 03:21 PM, said:

Can anyone tell me what the biopsy involves? I haven't actually met the gastroenterologist who is doing it, as based on my blood test (it was a very high result), he booked me straight in after my referral from my GP. All I've managed to gather is that it is done under "light sedation". What does this mean exactly?

Is this your first time having any type of procedures or surgery? It's a bit scary the first time. But it's not that bad.

Light sedation means you will kind of be awake during the procedure but you won't remember any of it. They stick a tube down your throat, send a camera down to have a look and take samples from a few places. The surgeon might come chat to you afterwards and might say it all looked normal - but they can't tell it's coeliac until they check your samples under the microscope. My DD "looked normal" but her samples showed the villi was damaged. :D

It is a really quick procedure - should be done in around 15 minutes.

One minute you'll be talking to them in theatre (or on your bed just outside theatre) and the next you'll be waking up, wondering why you got so worked up over it (if you did indeed get worked up. :p )

When you are fully awake, they will get you to get dressed and offer you food and drinks. You might need to hang around for about an hour afterwards, then you should be right to go home. I would allow around 7 hours to be spent at hospital. Most of that is waiting beforehand.

I just had a child have a simple procedure recently as a private patient - and the day surgery is no different than going as a public patient. In that you all turn up at your designated time (same time for everyone). You have a chat to the nurse that fills out the notes. You'll be weighed and have questions asked. Then you go back out to the 'waiting area'. Then you'll be called back to speak to the Anesthetist. Then back to the waiting area. Then you will have to go off by yourself (or if it's your child going in, you go in with them), where you get changed into the hospital gown and dressing gown.
Then you wait some more.
Then you go in. :)

#130 Rilla

Posted 08 May 2014 - 11:08 AM

Thanks heaps ZombieMum :).

I have had a day surgery laparoscopy previously which only took about 30-45 minutes I think. I was fully sedated for that and remember them transferring me to the surgical bed and that's it. I was just hoping I would be sedated enough for this one to not feel like I was gagging as it doesn't take much for me to feel like that and "vomit".

Hopefully he will come to chat at some point because I'd like to meet him! I'm assuming that they book a follow up appointment sometime after the surgery then? For some reason I thought they could give a tentative diagnosis right away so it's good to know now that they can't.

Apologies if I'm carrying on a bit, this whole thing has been bigger and taken longer to sort out than I expected when it all started (the intolerance/food stuff) and the Coeliac thing sort of came out of nowhere. It's a long story! I'll be glad to have answers and a plan. Progress is being made though so I'll be fine. Thanks for letting me chat :).

Hopefully I can take my phone or iPad for all the waiting!

#131 FeralZombieMum

Posted 08 May 2014 - 11:30 AM

View PostRilla, on 08 May 2014 - 11:08 AM, said:

I was just hoping I would be sedated enough for this one to not feel like I was gagging as it doesn't take much for me to feel like that and "vomit".

You'll be fine. I am a gagger and have had 2 gastroscopies and have been fine. :)

View PostRilla, on 08 May 2014 - 11:08 AM, said:

Hopefully he will come to chat at some point because I'd like to meet him! I'm assuming that they book a follow up appointment sometime after the surgery then?

The surgeon should have a chat with you before you go in. Might even be when you are on the bed ready to be wheeled in. They might also have a quick chat when you've woken up.

You don't need a follow up appointment with the surgeon. They will send the results back to your GP and you can easily follow up with the GP - plus if you do have Coeliac disease, your GP can write you a letter for the Coeliac society and do a 'care plan' (are these still around?) where you get medicare subsidised visits to a dietician. The care plan and letter to Coeliac society would probably involve a 2nd visit to the GP and might need to be a long appointment. The nurse at our medical centre wrote the letter for the coeliac society, the referral to the dietician and I also asked for a general letter to give to Kinder and school - the GP just came and signed her name to those when they were printed.

Results should be back in about 2 weeks. Just double check with the GP's receptionist that results have been received before you go to the appointment.
You can go see the surgeon if you want - but it's not necessary.

View PostRilla, on 08 May 2014 - 11:08 AM, said:

Apologies if I'm carrying on a bit, this whole thing has been bigger and taken longer to sort out than I expected when it all started (the intolerance/food stuff) and the Coeliac thing sort of came out of nowhere. It's a long story! I'll be glad to have answers and a plan. Progress is being made though so I'll be fine. Thanks for letting me chat Posted Image.

You've probably had a similar experience to others.

In the USA, apparently it takes about 13 years for people to be finally diagnosed with coeliac disease - GP's just don't think to test for it! (my 13 years info might be out of date).

View PostRilla, on 08 May 2014 - 11:08 AM, said:

Hopefully I can take my phone or iPad for all the waiting!

I wouldn't risk taking an iPad as it might get stolen. (or at least have someone 'wait' with you at the start and hand it over to them. )
I do take my phone when I've gone in - but mine is old and wouldn't matter if it got stolen.

#132 cHoCoLaTe*MuNcHkIn

Posted 30 May 2014 - 12:05 AM

Hi all,

First time in the health forums :)  Its quite hard to find decent advice and then I thought "surely EB will have a forum" :)

DH was diagnosed with coeliac disease, nut, dairy allergies earlier this week.  All started with testing for chronic headaches and he has been hit with quite a few health issues now (in addition to the allergies).  He has actually had the symptoms but just weren't aware.  Now that he is aware and although the Dr advised him to steer clear he is still in a little denial, gets a craving (eg cereal with banana), eats and then feels sick.  I warm him not to do it but I end up being the nagging lady.  Dr has basically warned him to stay clear of so many of his favourite foods.

I know we'll eventually get there but I was wondering if there are some good websites that could be recommended we look at.  I'm going to sign him up to Coeliac Aust but it is not just the gluten that is restricting what he can eat.  Also, where I can find appropriate ingredients and recipes would be handy too.  Last few days I have been sticking to making allergy free food but like I said I think he is still in shock.  

I'm planning on clearing a whole shelf in the pantry for him and will ensure I don't cross contaminate his food & dishes with the rest of the family.  I think if I can provide him a wide range of safe foods to eat and snack on it might boost his confidence.

So basically any advice would be greatly appreciated :)

p.s. i have a suspicion that perhaps one or maybe both our DD's who are twins may have some tolerance issues with gluten/dairy.  They are 14 months old.  Also have an 8yo DS and I'm thinking of getting all 3 tested.  Heck, I might have myself tested too.  DH's tests were part of a consult with an ENT + allergy specialist.  Would we just need to go to our GP to get tested?

#133 lisa25

Posted 12 June 2014 - 09:14 AM

Hi All.

New to the forum.  Just got the call from the doctors yesterday that they wanted us to go in to talk about DD1's (8yrs old) recent coeliac test.  So even though not 100% confirmed yet, the receptionist pretty much said yes she has it but I'm not supposed to tell you over the phone.  We all got tested because my sister and my mum were diagnosed about 6 months ago.  Funnily, my test came back negative.  

Even though mum and my sister have had it for awhile, I'm in a spin and feeling a bit in shock.  I'm waiting till we see the dr to change her diet, give her a few days before she has to start.  She definitely has symptoms, constipation, bloating, tiredness, headaches and dizziness.  The poor thing has had constipation problems since she was a baby, 8 yrs!  So, thinking positively about it at least those things will be alleviated when she cuts out gluten.  

Just one question, will the doctor get her to have a biopsy?  I don't really want her to have to go through that, my sister lives overseas and they didn't biopsy her, but they did for mum her in Australia.  That could have been because hers was quite bad, she is in her 60s and was diagnosed with advanced osteoporosis before testing for CD.

#134 FeralZombieMum

Posted 12 June 2014 - 09:26 PM

The blood test is only a screening tool - you won't know that she has Coeliac disease until she's had the biopsy.  The blood test can have both false positive and false negative results, hence why the biopsy is known as the gold standard diagnosing tool.

She needs to continue to eat lots of gluten until the biopsy - if you change her diet before that, then she might end up getting a negative biopsy result - you don't want that!

She really does need to have a biopsy. It's really quick and low risk and a very simple procedure!

They need a snapshot of what the damage is like, as in 12-18 months she should go back and have another biopsy to make sure her villi has healed. My DD didn't go back for her second biopsy, our GP didn't think it was necessary. (you'll find some doctors still have a lot to learn!) but our GP did organise repeat blood tests to see if there were antibodies in DD's blood (which would mean she was still having some gluten). My DD is quite sensitive to gluten - so we didn't need the repeat biopsy to see if she was sticking to her diet. ;)


Having a diagnosis via biopsy will make life so much easier.

It will help with the school supporting her diet - eg school camps, cooking in class etc.

It will help your DD stick to her diet - kids that aren't sensitive to gluten will have bits of gluten here or there (my kids come home and dob on the coeliac kids in their school that eat normal food!)

It will also help with other family and friends in supporting you.

Here is some more information.
http://www.coeliac.org.au/diagnosis/

#135 lisa25

Posted 17 June 2014 - 10:30 PM

Thanks for your reply. We saw the dr, dd had a weak positive test result to the antibodies (28). The dr just said straight away to put her on a gf diet but I'm not feeling that confident about it. I want her to have the biopsy now, which the dr didn't want to do until I pressured him.  He agreed but referred me to a paed to get it done. Paeds take months to get into in our area. So she has had the gene test done on his advice and we will go from there. Negative for that then she doesn't have it, positive then I will consider the biopsy. I wouldn't mind about the time delay but her constipation/diarrhea is getting worse and so is her tiredness. The symptoms could be from something else but this needs to ruled out first.  I didn't know that biopsy was always needed though, my sisters antibody count was really high so they didn't give her a biopsy, just said she has it, she lives oseas. Mum had the biopsy though.

I know what you mean about drs not being up with it all, one dr didn't even think we needed to be tested even with the close family diagnosis.  I'm a bit annoyed he hasn't provided me with the correct information, especially when it's available on the coeliac aust website.

Edited by lisa25, 17 June 2014 - 10:45 PM.


#136 FeralZombieMum

Posted 17 June 2014 - 10:52 PM

It is so frustrating to read about another doctor that is clueless.

What state/area are you in?

You don't need a referral to a pead. My coeliac DD has never seen a paed. She was referred to the local hospital to the surgical paed - who is a general surgeon (so not a gastro surgeon) and her biopsy was done within a couple of weeks.

Maybe see if there is a local coeliac contact in your area (facebook?) and ask for a recommendation on who to see.
Or contact your local hospital and ask?
Then go back to your doctor with the name of the surgeon that can do the biopsy and ask your GP for a referral to them.

Good luck!

#137 lisa25

Posted 18 June 2014 - 01:57 PM

Hi, thanks for your message.  I rang the paed they referred me to here in Shepparton and there was a voicemail saying he was away until the end of August.  I rang the gps and told them that and the receptionist said she didn't think referring me to him was a good idea anyway and had already sent a referral to the hospital.  I rang the hospital and they said we weren't in the system yet, but at the moment there is a 10 month wait for non-urgent stuff, which the receptionist seemed to think our situation was, but I won't put too much into what the receptionist thinks.  

So, just in case that is the case I have made an appointment with one of the paediatric gastroenterologists that Coeliac Victoria had on their list (I rang them this morning), he is in Melbourne and because I don't have private health insurance I will have to pay for consultations but I'm ok with that (will still go through public system for biopsy but will be performed by this specialist).

I have also booked in to see a new GP!  She is my mum's gp and apparently is very good and thorough with all this.  So 3rd July with gp, 28 July with specialist.  We get our gene test back in between all that and that will be a bit of an indicator as well.  

The gp not only gave me the wrong information about the biopsy, he also had no idea about paediatricians in the area, just chose one off a list.  He is a really nice guy, my daughter loves him, but not very good at his job.  

btw, I spoke to my sister, she didn't have the biopsy because she has dermatitis herpetiformis, apparently that is an indicator but she also said when she is back here in July she's going to try and get a biopsy done.

Edited by lisa25, 18 June 2014 - 01:59 PM.


#138 Snow bunny

Posted 30 June 2014 - 07:05 PM

Hi everyone, I'm after advice on a paediatric gastroenterologist in Melbourne. My 2.5 year old DD has possible coeliac but I'm really not keen on the first doctor we have seen.
Have all children here had biopsies for diagnosis? What about false negatives? Unfortunately due to poor GP advice she was off gluten for 4-6 weeks (with great results) but this led to a negative antibody test and he now wants to do a biopsy. If that's negative I'm worried about what will happen as she has such foul smelling, mucousy diahorrea, Tummy pains, low iron, poor weight gain and looks unwell. My sister is coeliac.
Any advice would be appreciated.




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