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FionaS View Drop Down
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    Posted: 11 February 2008 at 7:27pm
Anyone or their kids tested negative on cealiac marker tests but found that Gluten actually does cause them problems?

My family think I should put Elle on a gluten free diet to see if it helps with her irritability and tummy issues.

Most things I read say that gluten doesn't pass through breastmilk in which case it won't be our issue as Elle's been unsettled since 2 weeks old. However a few sources say it can pass through. So confusing!

She is much better now but still has really unhappy days and does have tummy probs.
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ShellandBella View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ShellandBella Quote  Post ReplyReply Direct Link To This Post Posted: 11 February 2008 at 8:27pm
Coeliacs or an allergy to gluten tends to be genetic in nature. My sister's oldest (whom I think I have mentioned before) was diagnosed when she was about two - neither my sister or her husband have it but were told one of them were a carrier of the gene and have passed it on.

Its one of those diseases thats pretty tricky to diagnose - the blood tests aren't very sensitive and usually only show up a positive result when there has been a high amount of gluten in the digestive system (hence it is a better indicator in adults than children). The gold standard for diagnosing is still doing a biopsy of the gut. It took ages for my sister to have it diagnosed for this very reason until FINALLY her daughter had a biopsy which confirmed it.

Unfortunately, cutting out gluten may 'fix' the problem, but Elle will need to have it in her diet if you want a definitive answer through testing (and also, having a child on a gluten-free diet who actually ISN'T coeliacs is just as harmful as having a coeliacs eat gluten - if that makes sense )

I think you have to have perseverance when it comes to coeliacs - its difficult to diagnose and you may have to go to several doctors before you get anywhere. Some symtoms my niece had though was lack of growth (weight/height/muscle tone) over a year or so, bloated tummy, constant constipation or bouts of severe diarrhoea/vomiting and generally grizzly.

Hope I didn't confuse you...


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ShellandBella View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ShellandBella Quote  Post ReplyReply Direct Link To This Post Posted: 11 February 2008 at 8:31pm
Just found this...it was what I was trying to say, but I was too tired to find the right words!

"If Coeliac Disease is suspected, a gluten free diet should not be started, as it will interfere with establishing the correct diagnosis and may delay the diagnosis of another condition with similar symptoms. Trialling of a gluten free diet does not provide a diagnosis of Coeliac Disease and subsequent investigations whilst on a gluten free diet will render a false negative. This includes the serological testing. The biopsy test should always be performed before starting a gluten free diet. It is important to discuss the possibility of Coeliac Disease with a doctor, if anyone has a close relative with the condition or if they have been treated for anaemic on previous occasions."


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FionaS View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote FionaS Quote  Post ReplyReply Direct Link To This Post Posted: 11 February 2008 at 9:54pm
No one in DH's family has been diagnosed, they just cut it out and their lives changed.

Elle is much shorter than expected based on our families (she is just below the 15th percentile whereas DH is off the scale at 6"4 and I am bang on the 50th), she hasn't quite grown as much as she should height wise but weight is ok, she has been constipated since 4mths old although iron has helped, has a VERY bloated tummy...I joke that she is the 3rd world baby, very low iron which my doc is still planning to investigate as it was really too low to just be due to a low intake and has always been generally grizzly though she is much better now if she is engaged in something fun.
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FionaS View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote FionaS Quote  Post ReplyReply Direct Link To This Post Posted: 11 February 2008 at 10:03pm
Just curious re: one of your comments shellabella...in what way is it harmful to cut gluten out of the diet if you are no celiac? I know quite a few people who feel great after cutting gluten out. I figure it is not particularly necessary...rice etc are just as good??

ETA that quite a few people don't want a biopsy done as it is invasive so if their symptoms go away when they cut gluten out they are happy to go with that. I'm aware that you need to keep eating gluten for the biopsy to work but I'm not sure I want Elle to have a biopsy at this point in time. It's a tough one! Will chat more about it with my GP though as she wants to meet us again soon to talk about the possible causes of the anemia. I still don't think Elle is absorbing iron very well as she has dark circles around her eyes etc.

Edited by FionaS
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mummy_becks Quote  Post ReplyReply Direct Link To This Post Posted: 11 February 2008 at 11:01pm

I'm waiting on the blood tests to come back to see if Josh has this. Me and my dr think that this is the cause if Josh's rash around his mouth. I'm starting to cut a few things out of his diet in the mean time to see if that helps.

I was a puree feeder, forward facing, cot sleeping, pram pushing kind of Mum... and my kids survived!
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FionaS View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote FionaS Quote  Post ReplyReply Direct Link To This Post Posted: 12 February 2008 at 12:37pm
We had the test for celiac markers done which came back negative but unfortunately it's not a very reliable test.
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ShellandBella View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ShellandBella Quote  Post ReplyReply Direct Link To This Post Posted: 12 February 2008 at 7:25pm
Yeah its a tough one...Personally I don't think the biopsies are that invasive (I've seen them being done) and if it will give you a definitive answer than at least you will know instead of always wondering...?

I think I meant that it wasn't good to cut out things from your diet until testing and under advice of GP as there are so many other things that it could be (hence why doctors have such a hard time diagnosing it). Perhaps if you want to go that route try cutting out one thing at a time (like start with wheat first...?) I only say this as my sister's youngest was also suspected of coeliacs (but my sister never believed this) so continued as normal. She also had a biopsy and was found to have something far serious but NOT coeliacs so she was right just to continue and then cut out the foods that she WAS allergic to.

Tricky one though...you can only do what you think is right.


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