Jump to content

  • 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):

Worried That Bloods Will Be Negative

nikky

Recommended Posts

nikky Contributor
nikky
Posted

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
a ditmars
Posted
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
a ditmars
Posted

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
celiac-mommy
Posted

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
Posted
  • Author
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
gfpaperdoll
Posted

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
nikky
Posted
  • Author
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
a ditmars
Posted

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.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Parkrunner
      - Parkrunner commented on Scott Adams's article in Spring 2025 Issue
      1

      How Celiac Disease Impacts Bone Health: What You Need to Know

      4.5 years ago I had 2 vertebrae fractures. After several months, 4 doctors, and numerous tests, it was determined that the root cause of my fractures was long term undiagnosed celiac. My DEXA tests 4 years ago showed significant osteoporosis; -3.3 T-score on my left hip. I had to wait 5 months before going gluten free. After wearing a back brace for ...
    2. trents
      - trents replied to Ben Cohen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      How much gluten do I need to eat prior to testing?

      Thanks for the update, Ben. If you will be having an endoscopy/biopsy to confirm the results of the blood testing - and this would be the normal protocol - you will still need to continue the gluten challenge until that is done.
    3. Ben Cohen
      - Ben Cohen replied to Ben Cohen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      How much gluten do I need to eat prior to testing?

      Update on how things went. To meet my daily quantity of gluten I had a measured amount of gluten flour with my breakfast and 2 slices of bread later in the day. I still had discomfort but it wasn't debilitating. My blood tests results came back this week and they were positive so I've been referred to a specialist.
    4. Jmartes71
      - Jmartes71 posted a topic in Dermatitis Herpetiformis
      0

      Skin issues

      Hello, Ive been to the dermatologist ( two different ones) and now made appointment, soonest is NOVEMBER. Ive been dealing with skin issues for a while and its getting worse because nothing has worked.I feel the bumps, gently squeeze and a itty bitty hard thing is coming out.I took a picture and did close up and in the MANY pictures ive taken this past...
    5. Scott Adams
      0

      Does Mirin Contain Gluten? What People With Celiac Disease Need to Know

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,039
    • Most Online (within 30 mins)
      10,442
    maxgforce
    Newest Member
    maxgforce
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      How much gluten do I need to eat prior to testing?

      By trents · Posted

      Thanks for the update, Ben. If you will be having an endoscopy/biopsy to confirm the results of the blood testing - and this would be the normal protocol - you will still need to continue the gluten challenge until that is done.
    • Ben Cohen
      How much gluten do I need to eat prior to testing?

      By Ben Cohen · Posted

      Update on how things went. To meet my daily quantity of gluten I had a measured amount of gluten flour with my breakfast and 2 slices of bread later in the day. I still had discomfort but it wasn't debilitating. My blood tests results came back this week and they were positive so I've been referred to a specialist.
    • Jmartes71
      Skin issues

      By Jmartes71 · Posted

      Hello, Ive been to the dermatologist ( two different ones) and now made appointment, soonest is NOVEMBER. Ive been dealing  with skin issues for a while and its getting  worse because nothing has worked.I feel the bumps, gently squeeze and a itty bitty hard thing is coming out.I took a picture and did close up and in the MANY pictures ive taken this past few days, there's a " string" type thing at the end. I FEEL IT COMING OUT.... At first few pic it looks like hair, its not.Its  part of what ever is in my skin...I did call my Dr yesterday and will be seeing him this Monday. What test should I request to see what the hell is causing my skin to have?I don't know what to call it.I do sleep with my indoor cats.I also have an inheritance cat two years ago who took to sleeping with me as well.I also was on topiramate but had to stop because of speech issues, memory and it can affect those with  kidney stones. I did suffer kidney stones in past.So i had to completely stop.Since freaking out of what i KNOW what I saw, i took matters in my own hands and decided to eat several whole cloves a day.Since doing so, though im not to eat garlic.My skin is actually clearing up sloooooooooowly.but then again I just started 4 days ago and already notice a difference. My husband thinks im seeing things.I know what I see and feel. what test is there to ask doctor about what is in my skin? Husband thinks im seeing things, because of the meningioma and stopping meds.i know what i saw.
    • trents
      Worsening vision 🕵🏽‍♀️

      By trents · Posted

      Vitamin A is important for vision health. But be careful in supplementing it as it can lead to toxicity. Research it and consult with your medical professional. I do not have a definite answer to your original question but I was pursuing the possible cause of nutritional deficiency. But your visual deterioration could be unrelated to your celiac disease so don't rule that out.
    • Name
      Worsening vision 🕵🏽‍♀️

      By Name · Posted

      Currently 19. Doctors think I was 1 year old when celiac started, but I wasn't diagnosed until 18, because they didn't do lab work on minors. I've been on a strict gluten-free diet for 14 months now. For example only certified gluten-free nuts and I've researched best brands a lot. I take B vitamins, vitamin D, vitamin C, Curcumin with black pepper, black sesame and green tea extract, magnesium, iron, and a little selenium and zinc, beef liver capsules. I recently had my vitamin and mineral levels retested and D is the only one I don't have enough of now. I had my eyes tested at 17 and they were good back then.
×
×
  • Create New...