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nikky

Worried That Bloods Will Be Negative

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ok, im not a parent but im an auntie. does that count???

my neice is 5 years old and has classic symptoms of coeliac, (D. very thin but pot belly, irritable and behaviour and concentraition problems). My sister has been tested and came back negative but shes prepared to get my neice tested. My worry is that her tests will be negative despite the symptoms and the fact that im a coeliac :unsure: , and with me being 15 i dont know how seriously my sister would take me if i told her to try the diet out :blink: . Do you have any suggestions how i can help? Thanks in advance. :)


"great works are performed not by strength but by perseverence"

 

Diagnosed coeliac - aged 14

                  Asthma

                 Osteopinia

                 High blood calcium

                 Crohn's disease -december 2012 

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ok, im not a parent but im an auntie. does that count???

my neice is 5 years old and has classic symptoms of coeliac, (D. very thin but pot belly, irritable and behaviour and concentraition problems). My sister has been tested and came back negative but shes prepared to get my neice tested. My worry is that her tests will be negative despite the symptoms and the fact that im a coeliac :unsure: , and with me being 15 i dont know how seriously my sister would take me if i told her to try the diet out :blink: . Do you have any suggestions how i can help? Thanks in advance. :)

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Nikky,

You might suggest your Aunt look into genetic testing through www.enteroLab.com. The test is a simple swabbing of the inside of the cheek, so it is easily done on a small child. My son is five and we had him tested with this lab, he tested positive for the gene for celiac. He had 5 different test done prior to this one. They all showed he did not have celiac, but like your neice he showed all the symptons of the disease. It is very common for blood and stool testing to come out negative, but the gene testing is the end all be all.

Hope this helps.

Allison

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Daughter's blood test came back very positive when she was 4, biospy confirmed.

Son's test was negative at 2, biospsy showed a small amt. of damage, waiting for results on Monday.

If insurance covers the blood test, might as well do it. Enterolab is spendy, but you could always look into it later.


Rachelle 20dance.gif

Daughter diagnosed 1/06 bloodwork and biopsy
-gluten-free since 1/06

Son tested negative-bloodwork (8/07), intestinal issues prompted biospy (3/08), results negative, but very positive dietary response, Dr. diagnosed Celiac disease (3/8)

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Nikky,

You might suggest your Aunt look into genetic testing through www.enteroLab.com. The test is a simple swabbing of the inside of the cheek, so it is easily done on a small child. My son is five and we had him tested with this lab, he tested positive for the gene for celiac. He had 5 different test done prior to this one. They all showed he did not have celiac, but like your neice he showed all the symptons of the disease. It is very common for blood and stool testing to come out negative, but the gene testing is the end all be all.

Hope this helps.

Allison

Its not my aunt its my sister, thanks for your suggestion but im not sure entrolab even exsists in the UK, and my sister definately wouldnt be able to afford it. She is going with the NHS, the problem with that is a lot of the GPs arent very informed and so dont know all that much about symptoms and how tests can be unreliable.


"great works are performed not by strength but by perseverence"

 

Diagnosed coeliac - aged 14

                  Asthma

                 Osteopinia

                 High blood calcium

                 Crohn's disease -december 2012 

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There is only one Enterolab - it is in Dallas Texas. You can email them. their web site is Enterolab.com they ship all over the world.

Your sister might be able to afford it, considering the exchange rate is so favorable to England at the moment.

re doctor in England, do the homework for the doc & take him a list of the tests that need to be run & the latest info etc. & be sure to take a complete list of your symptoms and family history...

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There is only one Enterolab - it is in Dallas Texas. You can email them. their web site is Enterolab.com they ship all over the world.

Your sister might be able to afford it, considering the exchange rate is so favorable to England at the moment.

re doctor in England, do the homework for the doc & take him a list of the tests that need to be run & the latest info etc. & be sure to take a complete list of your symptoms and family history...

thankyou all for your suggestions, maybe i should have been a bit clearer

my sister is barely able to pay the rent, lives in a council house has 2 children and her partner has low wages they cant afford to go private or have tests from a private company. We dont have the same GP so i cant talk to them and being 15 they wouldnt listen to me anyway. Also we live in Wales not England.


"great works are performed not by strength but by perseverence"

 

Diagnosed coeliac - aged 14

                  Asthma

                 Osteopinia

                 High blood calcium

                 Crohn's disease -december 2012 

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Hi Nikky,

What I suggest is to try a gluten free diet with your niece. With some help from a good health food store, I started a dairy free diet with my son to start then went gluten free about a month later. In days after going gluten-free I saw a huge difference and it was easy to see that a gluten-free diet was doing good things for him. It wasn't until a year later that we finally got a diagnosis. Your sister should probably do some research first about hidden gluten, it seems to be in everything, also many folks with gluten intolerance have difficulties with soy and dairy proteins also. Making a change in diet could be an easy and inexpensive way to get started.

Good luck.

Allison

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