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Member Since 29 Mar 2009
Offline Last Active Feb 23 2010 09:11 PM

Posts I've Made

In Topic: A Little Help Understanding My Children'S Results Please?

19 February 2010 - 03:51 PM

Thanks Nora,
I hope we have the Enterolab test here! That would be good, I know they are very sensitive to cow's milk, only two of my children seem to be able to use it regularly - and even they have been known to miss it for a couple of weeks here and there. If we gave my youngest daughter any at all she would be sore and blistering all of the time instead of barely keeping it at bay...

SO my hope is they'll have that test, going on the fact that I'd hate for them to suffer any more than necessary til diagnosis. Going over the test results again it says on the bottom they state patient is at risk factor of 22.9% on all the results we've gotten back at this stage. Then they give another set of generals about all kinds of genes and numbers like this DQB1*02 and typing in the general population versus the genes of most celiac portion of the population. Background info it's titled as. As far as I can see there isn't any indication of the copies of DNA, but yeah, all children have the same results so I'd suspect as much - My partner and I have one gene positive each, but don't have the results, will have to get those off the doctors.

I just hope we can get a paed who knows what they are doing and/or will listen to us! I'll ask for the Enterolabs, I think I'll also just print out these pages to bring along if you don't mind!
Thanks so very much, Julie.

In Topic: A Little Help Understanding My Children'S Results Please?

18 February 2010 - 05:53 PM

The tests do not seem as definitive as they could be, do they? Nothing seems 100%, and yet the symptoms are there and causing issues. There is obviously much more to the condition than the medical profession knows yet, its a grey area. Its obvious too that some doctors have more of a clue than others too.

The more into it you get, the more confusing!!

In Topic: A Little Help Understanding My Children'S Results Please?

18 February 2010 - 05:45 PM

I don't pretend to understand the DNA or the sequencing but I thank you Nora, and Midwifemama for attempting to explain. Maybe genesists don't really know either, it is relatively a new thing isn't it? For this reason I doubt the doctors have any real idea either, as they go on these journals and theories too. That does make it difficult for everyone else who are actually suffering to get a clear diagnosis. I think that this area is still being discovered and that many people are undiagnosed or are finding it more difficult to get definitive answers as its all clouded and confused on different levels. But this is a modern western medical world view I think, hopefully it will get easier to pin point when they get more studies done in the area.

If it was the simpler method long ago the diet was enough as a diagnostic tool! And dramatically less stressful too.

Thanks for all of your help, I think I'll have a better idea of how to approach the doctors when I finally get to go see them about it all.

You have 5 children? Me too obviously. Fortunately it's free but the unfortunate part of it is it takes a long long time to see doctors, and there is less quality in care unless you are private (my guess its similar to being insured or not in the states)

In Topic: A Little Help Understanding My Children'S Results Please?

18 February 2010 - 03:49 PM

I don't have a lot to add to Nora's reply. It sounds like at least the 4 year old is doing well on the diet. Why are you going to make him do a challenge? It seems his body has given you the answer. Are any of the other kids gluten-free? Do be aware that they don't have to go on a challenge for Enterolab testing. As stated they do not diagnose but they can tell if they are making antibodies which is a really good idication that they need to be gluten free.

Ok, you have helped in your reply... The reason why we wanted a diagnosis for my 4yo was really for his father's sake (and his future teenage self), if we had the positive proof my son wouldn't rebel later on and say "oh I'm not eating gluten-free anymore no one even knows if I am or not?" plus my husband is reluctant, but of course he sees the positive outcome of his and my gluten free changes. No they told us to keep all the others on gluten for further testing. I am in fact dreading putting him back on gluten (and myself - I won't do the challenge considering how well I am compared to a year ago), because I don't want him to go backwards. At this stage he is always questioning my, either way. Such as "will my tummy always be gluten free mummy?" or a more common one, "does that have gluten in it - I don't want it." I don't even know IF I could put him back on gluten as he won't eat it anyway. Of course, he never gets offered gluten at home anymore but before my mother got used to the idea he actually questioned her and refused to eat something at her place - he certainly remembers the pain now! Of course, I could let him do the challenge when he's older and it's his choice, I'm more comfortable with that then reverting. My husband wants me to do the challenge too (he's much more scientific than I am - needs that quantifying truth I guess).

Enterolab testing - is that the challenge/biopsy? If so then all my doctors have insisted that they all be tested and go through the challenge if necessary because "it's the gold standard in diagnosis" it's like they are quoting text books! I don't think any of the doctors or Paeds have had any real experience with it so far. My youngest daughter is the exception (as she has been admitted to hospital because of all this) in who we get to see, next time instead of a doctor in training to be a paed we get to see a full paed which means to us at least we might get somewhere further. You see, even as bad as sounds, we've already been through and been stone walled when they decided my 4 yo wasn't bad enough to do anything about! Thats when I demanded my GP give him a DNA test and now as that was positive they are taking him on again. Really, it does seem I am in a backward little place when this sort of thing happens. (I live in Tasmania Australia) Raven had tested positive at that stage (but I don't have all the actual results) for an anti-immune disorder (not a specific one though), anemic, allergies. It was very much a bad time in our journey to be told that it just wasn't enough to go further in testing. After we got the DNA test back from our GP she told us to put him on the gluten-free diet but refered him back to the hospital.

The only reason why they are taking notice of my youngest is the extreme dehydration and extreme weight loss since Novemeber (she lost a full kilo in a month at two!)

Yes, I'd love to just take everyone off the poison but my husband wants the full diagnosis. It's frustrating! Also we're acting on what the doctors have suggested so it's present in their systems when testing. At this stage it's taken 2 years from when my 8 yo started complaining about pain and constant diahhrea til today and still not fully diagnosed any of them. I was misdiagnosed 11 years ago with IBS but they ran the wrong tests on me only a colonoscopy not the biopsy (as I was overweight from gaining weight with thyroids) - he made the call based on my wieght - this could have been sorted way back then.

In Topic: A Little Help Understanding My Children'S Results Please?

18 February 2010 - 04:28 AM

Thanks for the reply Nora, I wasn't aware of the other tests I could ask for so I will definately be asking for those. the IgG one, as for the copies of DNA strands, I'll check out Wiki because that is a bit confusing.. I have one gene that is positive but the children have both - at least all that have been tested, and my husband has been tested but I'm not sure of his results yet. There certainly wasn't any indication on the tests about that.
I am fairly certain this will help and I am so happy you were able to give us some help, if to give our children a decent pain free life is our top priority, I certainly don't want them suffering like I have if I can find a way !!
Thanks again, Julie.

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