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#1 Therese

Posted 11 May 2012 - 10:11 PM

New thread time original.gif

Your last thread is Here

Here is a link with some information

http://www.coeliac.org.au/coeliac-disease/diagnosis.html

#2 brazen

Posted 14 May 2012 - 07:16 AM

my favourite fact sheet is no longer on the coeliac website, but luckily is on another original.gif this is a great one for answering any questions:
http://www.theallergymenu.com/sites/defaul...20diagnosis.pdf

#3 BentoBaby

Posted 14 May 2012 - 12:08 PM

.

Edited by mtilly, 15 May 2012 - 10:35 PM.


#4 brazen

Posted 15 May 2012 - 06:27 PM

yummo! http://www.bbcgoodfood.com/content/recipes...ts/gluten-free/


#5 lizabeth

Posted 14 June 2012 - 09:03 PM

Just want to say hello as I'll probably be checking this thread now and then for advice and support!  My daughter (who is two and a half) has been diagnosed as having coeliac disease. She had no symptoms except for a slightly bloated tummy - we are very grateful to a friend who is a GP and suggested testing. Anyway, we have now been to the Dietician, and joined up the Coeliac Society. I have packets of food samples, and lots of reading material.

Feeling ok about it but don't really know how easy or hard it is going to be, for example at day care or when she goes to events/parties.  Although she didn't have tummy symptoms previously, is she likely to now get sick if she accidentally eats some gluten? I'm also confused as to whether or not we need to get a second toaster. I read on forums that yes we do need to use a second toaster, but the Coeliac Society said that's not necessary. Advice please??

Thanks in advance.

#6 brazen

Posted 14 June 2012 - 09:56 PM

welcome lizabeth original.gif i think rora was around the same age when she was dx too.

i found daycare great as we provided her food most of the time and the one that provided it was fabulous at getting it right. one daycare we spoke to refused to provide gluten free food (i know realise this is probably illegal) but also refused to give a discount if we provided it all!

parties we generally send along all her food - i used to try to match to what the other kids were having but even now at 6 she would rather have treats she likes than be like the other kids wink.gif more and more parents will cater for her which is really nice original.gif

we have a second toaster and i'd rather not risk it given how simple it is to get a second one. we jsut have a cheapie from aldi and it's been great.

good luck!

#7 ephalant

Posted 18 June 2012 - 09:22 AM

I have a question about ingredient lists (I really should know the answer by now, but..).  I went to buy something recently and looking at the ingredients list it said modified corn starch, but in the allergy advice there was no mention of gluten or wheat.  We don't buy anything with 'modified' in the ingredients, but with no warning in the allergy section below it threw me a little.  We didn't end up getting it.  Does this mean if it's not in the allergy advice it's gluten free and the modified corn starch is then gluten free?    

One of the reasons I don't know is because I've always made everything pretty much from scratch, but am currently teaching ds who has coeliacs how to read the ingredients list for himself and told him to always check the allergy advice if in doubt (we're only at the beginning stages of him being independent with buying his own food).  While I go by the addage of 'if in doubt, leave it out', ds is very literal and doesn't do that yet.

#8 FeralZombieMum

Posted 18 June 2012 - 10:24 AM

Welcome to our little group, lizabeth. The diet is a steep learning curve, but it's pretty easy to do after a while.

For birthday parties, my DD will take her own food. Not only does this mean she has something to eat that she likes, it also means she's less likely to get sick - we rarely trust other people's cooking, plus we've found that even if they've gone to the trouble to make the food gluten free, they stuff it up when they serve the food - ie they have it on the same plate as gluten food! ddoh.gif
I tend to stick to little packets - like chips, fruit tails(like a snake lolly), as the packets are another way to help reduce cross contamination. (other kids like to sticky beak at what's in her container.)

I also tend to 'guard' her container if I am with her - as sometimes some 'helpful' people have taken her food out to place with the gluten food. ddoh.gif When I've sent her off without me, I make sure her container is labelled clearly, and also have something like 'Keep separate to avoid cross contamination' and I will chat to the host.

I'm not sure I could help you with creche as my DD was diagnosed at the end of her kinder year, so I was preparing all her food. I'd be meeting with the Director, room leader and chef to discuss it. They need to understand about cross contamination as well as reading labels.  

I've learnt to identify who I can trust with cooking for my DD3. Some people I could never trust - because their knowledge and willingness is lacking.
Eg if someone isn't willing to show me the packets of the ingredients - then I won't trust them - if they can't understand the need for me to read and check, then they just 'don't get it'.

If I am discussing the ingredients with someone, and they don't understand some basic products can contain gluten, then I can't trust them. Eg I've asked someone about the ingredients in a soup, and they bluntly replied that it was just soup and that it wouldn't contain gluten - I then mentioned that the stock they used could contain gluten - and they looked at me like I was an idiot - they just believed stock is gluten free, so because they were rude to me (basically I felt like they were laughing at me for asking a stupid question), then I knew I could never trust them, nor educate them.

My DD became more sensitive to gluten as time went by. You'll have to wait and see if it affects her or not. There's an upside of being so sensitive - the child sticks to the diet. wink.gif


ephalant, if it didn't have:
modified corn starch (wheat)

or 'contains wheat/gluten'

then it should be fine.

I know how hard it is to trust the labelling. I've emailed some manufacturers to query their product labelling - and with the ones that don't get back to me, I assume they've stuffed up.
eg I point out that they have other similar products that mention it's gluten free, so can I assume their other product isn't gluten free as it doesn't have that claim,
or
some products have 'contains no soy, egg, nuts' - yet there is no obvious gluten or wheat - so I ask if it's gluten free because they don't have that in their statement, which you'd think they would.

Do you remember what product and brand it was? I am sure one of us here could tell you if it's safe or not. original.gif

#9 ephalant

Posted 18 June 2012 - 10:51 AM

Thanks ZombieMum.  The ingredients had modified corn starch, but no mention of wheat/gluten anywhere.  I didn't get it because I wasn't sure and since I rarely buy prepackaged food like that (and it was something we haven't bought before at all) I left it and wanted to check.  What would it be modified with?  I can't remember brand name either, but will check next time and maybe contact the company too.  It was an instant pudding, which I didn't expect to be gluten free but thought I'd check anyway.

#10 brazen

Posted 18 June 2012 - 05:08 PM

corn starch would be gluten free unless it stated 'wheat'


#11 ephalant

Posted 18 June 2012 - 07:17 PM

QUOTE (brazen @ 18/06/2012, 05:08 PM) <{POST_SNAPBACK}>
corn starch would be gluten free unless it stated 'wheat'


I know that corn starch is gluten free, I guess it's the use of the word modified that threw me.  I was always told to stay away from modified as it means it's mixed with something, often wheat.

#12 josh2003

Posted 18 June 2012 - 07:59 PM

I just saw this in recent topics and it caught my eye because I've been thinking about having my 3 year old son tested for coeliac/gluten intollerances. I was wondering what made you get your children tested, and what the tests involve (just wanting to pick your brains for a bit!).

A bit of background:
I BF him until he was about 12 months and he was growing well, and he was sitting at about 85% on the weight charts, but once we started solids at around 6 months, he started losing weight. He was always irritable and looked to be in pain, and during the time that he was having various tests done, he eventually slipped to the 15-20th percentile.

He was eventually diagnosed as lactose intollerant, so the pediatrician prescribed Pediasure for him, which is lactose and gluten free. He was going to be tested for Coeliac, but because he started putting on weight when we changed to Pediasure, the pediatrician didn't think it was warranted.

He is now only just above average height, but still quite low on the weight side of things, but he started off being such a big boy, and now he's really quite small by our family's standards (DH, DS and I are all really tall).  

TMI warning:
But the thing that really concerns me is that every time he needs to do a poo, he walks around looking distressed for about half an hour and starts crying and saying his tummy hurts. And when he does poo, he's either constipated, or it's really runny and pastey. He also has quite a bloated tummy and looks really pale all the time.

And this is despite the fact that he only has lactose free dairy products, so I'm wondering whether he isn't actually gluten intollerant.

Are these the sort of things that normally occur with children that are coeliac or gluten intollerant?

#13 brazen

Posted 18 June 2012 - 09:52 PM

we have fabulous rules on food labelling here - if the product was labelled here in australia i would ignore modified if wheat / gluten is not mentioned. they MUST label wheat / rye / oats / barley if it's included

#14 FeralZombieMum

Posted 18 June 2012 - 10:50 PM

QUOTE (josh2003 @ 18/06/2012, 07:59 PM) <{POST_SNAPBACK}>
Are these the sort of things that normally occur with children that are coeliac or gluten intollerant?

Yes, what you've posted could be related to Coeliac Disease, or it could be due to something else. (that's why it's important to rule out Coeliac disease first)

Symptoms can vary, and some kids and adults can have Coeliac disease with no symptoms!! (they are often picked up when families are screened after someone is officially diagnosed - there's an increased chance of getting Coeliac disease if a family member is diagnosed, around 1 in 10 instead of 1 in 100(which is what the statistics are with the general population.))

The lactose intolerance could be caused by Coeliac disease - it's called a secondary intolerance, and once someone is gluten free for 6-12 months, then they should be able to handle lactose. http://www.coeliac.org.au/coeliac-disease/lactose.html

If he's currently having lots of gluten in his diet, then get him to the Dr to be tested ASAP.

My GP didn't think my DD3 would have it, but ordered the tests anyway (she ordered heaps of others at the same time, like iron - which came back low).

#15 josh2003

Posted 19 June 2012 - 12:15 PM

Thanks ZombieMum. DS is also low in iron but my husband has thalassemia minor which means that he will always be on the low side.

How close is the family link? My niece was diagnosed as coeliac when she was about 20.

#16 wallofdodo

Posted 19 June 2012 - 12:25 PM

I can't remember the specific ratio, but yes, if a blood relative has been diagnosed (and it was confirmed by a biopsy) then your son would have a greater predisposition to it.

You need to have specific genetic make up, so it does run in families. I am the only one diagnosed in mine, but I suspect there are a few others, but they are ignoring it. I also have a friend who's sister was diagnosed in the same week as me, since then two other sisters and an Aunt have been diagnosed.

I would mention when you go to the GP about your niece. May make them more inclined to test. Good luck, I hope it isn't it, but you get to the bottom of your son's issues.

#17 FeralZombieMum

Posted 19 June 2012 - 12:44 PM

In Australia, in a general population of 100 people - 30 of these will carry one of the Coeliac Genes. Only 1 of these people will go on to develop Coeliac disease. (so that's the 1% - ie 1 in 100)

But when someone has been diagnosed in a family (blood relative) - all immediate members should be tested, as the risk of developing it is higher - so as your niece was diagnosed, I would still think your kids are at a higher risk than the general population. I read somewhere that they don't routinely screen for Coeliac disease, because it's better to screen family members after a diagnosis - it has a higher rate of detection than the general public because it tends to run in families - something else is going on (besides having the gene) to turn on the autoimmune response.

And as it's an autoimmune disease - and if you have one autoimmune disease, then you are at a higher risk of developing others (like Diabetes Type 1). In some families, there are members with different autoimmune diseases - so it may not be obvious initially that there is a link.
I am sure there are some members on my side of the family that have some symptoms, but I am being ignored when I've suggested they get tested - and I have a cousin diagnosed with it, and some family members with other autoimmune issues.

#18 ephalant

Posted 21 June 2012 - 06:50 PM

QUOTE (brazen @ 18/06/2012, 09:52 PM) <{POST_SNAPBACK}>
we have fabulous rules on food labelling here - if the product was labelled here in australia i would ignore modified if wheat / gluten is not mentioned. they MUST label wheat / rye / oats / barley if it's included


Thanks Brazen.  That's what I thought, but wanted to check first.

#19 Suzie K

Posted 25 June 2012 - 04:19 PM

Hi all wondering if i could get some help on Gluten Intolerance. was told today by my dr that my 2 year old might have this and to start her on a gluten diet. My little one loves her milk and i dont know what type of milk to put her on. Thanks

#20 brazen

Posted 25 June 2012 - 04:24 PM

milk is gluten free.
not all forms of rice & soy milk etc are though, just check labels.

don't go gluten free until the GP has done the coeliac blood test for her. have a look at this article for an explanation (perhaps give your GP a copy too original.gif)
http://www.theallergymenu.com/sites/defaul...20diagnosis.pdf

#21 FeralZombieMum

Posted 26 June 2012 - 10:58 AM

QUOTE (Suzie K @ 25/06/2012, 04:19 PM) <{POST_SNAPBACK}>
Hi all wondering if i could get some help on Gluten Intolerance. was told today by my dr that my 2 year old might have this and to start her on a gluten diet. My little one loves her milk and i dont know what type of milk to put her on. Thanks

Has she had the blood test and biopsy?

Unfortunately, there's a lot of uneducated Doctors, Naturopaths and even Chiropractors(!) that tell people they might be gluten intolerant, and they suggest a trial of a gluten free diet. This is extremely bad advice and is not recommended by the Coeliac Society.
QUOTE
1. Keep eating gluten

Do not commence a gluten free diet prior to being tested for coeliac disease. If a gluten free diet has already been adopted, the tests used to diagnose coeliac disease are unreliable, and can be falsely negative.

http://www.coeliac.org.au/coeliac-disease/diagnosis.html

100% of the people I know that have trialled a gluten free diet have done it wrong. Most still had some gluten, and those that were good with being 100% strict with ingredients, failed in the cross contamination area.

There is no way to know if gluten is an issue simply by cutting it out of the diet. There could be other causes, like Fructose, or if the diet is not 100% gluten free, then of course there might not be an improvement.

It's very important to have Coeliac disease tested for - as this is a serious disease if not treated properly (ie not sticking to the diet 100%)

Did the Doctor even refer you to a dietician for advice on what's gluten free?  It can be quite difficult to read labels - some frozen chips have barley, and for many people, they don't realise that this means it contains gluten.

Cows milk is gluten free. Flavoured milk might not be gluten free. If you add something like Milo, then it's not gluten free. Some soy milks are gluten free, others are not.

#22 lizabeth

Posted 27 July 2012 - 10:14 AM

Thanks for the advice, brazen and zombiemum! It has now been a couple of months since Coeliac diagnosis for us, and overall we are travelling well with the new diet etc. Day care have been great and seem to really understand - the chef is preparing good gluten free meals for her.  However, yesterday Emma went off her food, complained of tummy aches, has bad gas, and ended up with bad case of the runs. She was awake for much of the night and although she has eaten breakfast this morning she is very listless.  I am not sure if she has had a gluten exposure, or perhaps just has a virus?  She does seem very hot so possibly has a temperature - so is it more likely to be a virus??  Can other people tell me what their (or their child's) symptoms are if they accidentally have some gluten?

I have been feeling positive about this whole thing but frankly today I feel very flat about it all - she has to manage this for the rest of her life, and no doubt there will be times when she becomes sick with exposure. And I feel guilty - we have not been very strict with different hubs of butter/jam, and perhaps we have served her food on a "dirty" plate i.e. one which had some "normal" bread on it??  I don't know if and where we are going wrong.

One more question - does anyone know of a coeliac/ gluten free web forum, based in Australia?  The only one I found had been "compromised" (i.e. X rated pictures came up when I clicked on a thread!). Essential Baby is great but I was specifically looking for a forum where you can ask and answer questions according to category, i.e. follow certain topics.  If there is no such forum in Australia then I might just start one! I have also been looking around for some sort of support group for parents of kids with Coeliac disease, with no luck.

Sorry to be a bit negative, I know this is a very manageable disease, just so hard to see my daughter sick!



#23 brazen

Posted 27 July 2012 - 07:17 PM

hi lizabeth original.gif

i have heard people say they get a temp when glutened so it must make it hard to know if virus or gluten.

with rora it's easy to tell. about 2 hours after eating she starts to vomit. she'll vomit for 15 mins - 2 hours depending on how much she's eaten. she then is so exhausted she sleeps for a short while and when she wakes she's fine and you'd never know.

my sister on the other hand gets diarrhea, fatigue, and generally feels unwell for a week or so.

i think all you can do is be as strict as you can - no more sharing anything (jam, butter etc) including toasters, plates etc then see how she goes.

there was a group that amanda set up but i'm not sure it's still active. i can't quite remember the name of it now. there are a few out there but not very active. there's a couple of groups on facebook but not aussie and not particularly active either.

#24 Feralmummacat

Posted 28 July 2012 - 10:17 AM

Hi lizabeth

Both my DS1 and I get stomach pains, the smelliest gas and diarrhea within about 2 hours of accidental exposure. DS1 even looks greyish and gets red around his eyes like he has been rubbing them a lot. He is very tired and flat for a couple of days. I have never noticed a temperature though.

As both I and DS1 have coeliac disease our house is gluten free beside DH's wheetbix. We would never use his bowl without it being washed, it is just not worth the pain and the running to the toilet.

It does get easier with time and practice.

When I was first diagnosed the dietician at the local hospital had set up a support group that meet once a month. It was really good to get practical advise when I had no idea at the start.  

Have you become a member of the coeliac society? They may know of local support groups.

I totally understand your negativity, I still get down and blame myself (well my crappy genes) for DS1 having coeliac and I hope DS2 doesn't have it.

Edited by mummacat, 28 July 2012 - 10:28 AM.


#25 FeralZombieMum

Posted 17 September 2012 - 08:53 PM

*bump*

We've discussed Grill'd before (waves.gif Zip) so thought I'd mention this.

I went into my local Grill'd and ordered a gluten free burger for myself, so I could watch how they made the burger.

They do have a disclaimer on their website and menu that states:
"(*Please note we toast our Gluten Free* buns in the same toaster as other breads, so they’ll contain traces of gluten.)"
http://www.grilld.com.au/nutrition/

The first thing we noticed was they had a long bread/cutting board sitting on the edge of the salads, so I immediately thought about all the gluten crumbs falling into the salads.
They did put the gluten free bun on a piece of paper, to reduce the risk of cross contamination of crumbs on the cutting board, but they weren't careful with the utensils they used - the sauces and mayo are in tubs, and they used the same spoon for gluten and gluten free rolls - they also held the buns over the sauce as they spread it on - they used the back of the serving spoon (that got the sauce) to spread it, so huge cross contamination issues there.
They also didn't change gloves for making the gluten free burger.

It was pretty yummy though, so someone that isn't as sensitive as my DD might be happy to risk it. They were very busy (and we went before the lunch time rush), so I can understand why they'd struggle with making sure they were strict with cross contamination.
The chips were very yummy though! I've never had herb seasoning like that!

If only there was a Grill'd that was 100% gluten free.

Edited by ZombieMum, 17 September 2012 - 08:55 PM.





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