Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Worried That Bloods Will Be Negative


nikky

Recommended Posts

nikky Contributor

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. :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



a ditmars Newbie
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. :)

a ditmars Newbie

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

celiac-mommy Collaborator

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.

nikky Contributor
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.

gfpaperdoll Rookie

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...

nikky Contributor
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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



a ditmars Newbie

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

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,113
    • Most Online (within 30 mins)
      7,748

    Ang99
    Newest Member
    Ang99
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Zuma888
      Hello, I was diagnosed with Hashimoto's thyroiditis about 3 years ago. At that time I quit gluten and it really helped my symptoms. I hadn't known that I should've tested for celiac before doing so.  Up till recently, gluten would cause my symptoms to flare up, although I never noticed anything with cross contamination, so I wasn't strict about that. But recently, I noticed I could get away with more gluten, and so I decided to do a gluten challenge to see if I had celiac and if I had to be strict. Note that my thyroid antibodies had been decreasing steadily up to this point. My anti-TPO had reached 50 IU/ml from 250 IU/ml (reference range 0-5.6) when I had first been diagnosed. After just a week of the gluten challenge, I measured my thyroid antibodies and they were at 799 IU/ml! I felt fine, but a few days after I started to feel the symptoms. Extreme brain fog, insomnia, diarheaa, fatigue, sleepiness yet cannot sleep, stomachache after eating gluten, nausea, swollen throat (probably due to my thyroid), burping, and gas. I cannot function properly. I'm also worried that I'm killing my thyroid. Should I just quit the challenge? It's been almost two weeks, but the first week I wasn't tracking well, so that's why I didn't want to count it. I can't eat gluten anyway because of my thyroid, but I wanted the diagnosis to know if I should be strict about cross contamination or not.  
    • Zuma888
      You really saved me as I was on day 4 of 3 g per day for 6 weeks. Thank you very much!
    • trents
      Two weeks is the minimum according to the guideline. I would go for four weeks if you can endure it, just to make sure.
    • Zuma888
      Thank you so much! So I can do 10 g worth of gluten in the form of gluten powder per day for two weeks and that should be enough?
    • trents
      It applies to both blood tests and biopsies. Guidelines for the gluten challenge have been revised for the very issue your question raises. It was felt by medical professionals that the longer term but less intense consumption of gluten approach was not proving to be reliable for testing purposes and was resulting in too many false negatives. But do keep in mind that the gluten consumption doesn't have to be in the form of bread slices. It can come in any form: pasta, cake, wraps, etc. Another approach would be to buy gluten powder at a health food store and mix it in a shake. The idea is to get at least 10g of gluten daily, whatever form it comes in.
×
×
  • Create New...