Jump to content

  • 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
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. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      22

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      That is the goal, after all.
    2. Wheatwacked
      - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine. Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years. Doctor recently said to not stop. My 25(OH)D is around 2...
    3. Known1
      - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing your thoughts. I respectfully disagree. You cherry picked a small section from the page. I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on ...
    4. Wheatwacked
      - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

      Here is a link to the spreadsheet I kept to track my nutrition intakes. Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/...
    5. Wheatwacked
      - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

      Hello @catnapt, That's so true. Every person with Celiac Disease has different symptoms. There are over 200 that it mimics. Too many still believe that it is only a childhood disease you outgrow. Or it's psychosomatic or simply a fad. Idiots. It's easy to get angry at all of them. You just have to pick at the answers until you find...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,411
    • Most Online (within 30 mins)
      7,748
    EBeloved
    Newest Member
    EBeloved
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      That is the goal, after all.  
    • Wheatwacked
      Blood results

      By Wheatwacked · Posted

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Known1 · Posted

      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Hello @catnapt, That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.   You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.   So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare? There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me. We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone. Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue. Vitamin D, Calcium and Iodine are closely interactive. It is not uncommon for postmenopausal women to have insufficient intake of Iodine.   (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.