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

What To Do? Neg Blood Test - Positive Symptoms

kel-kel

Recommended Posts

kel-kel Newbie
kel-kel
Posted

My daughter (8yo) had stomach aches, headaches, behavior issues, mental fog for about 2 years before we went gluten free - and with that all her symptoms improved dramatically - no more stomach or head aches, significantly improved behavior and mental processing. After this we went back on gluten, all symptoms returned. Had blood testing done, came back negative. I was still not convinced, took out gluten again - and again all symptoms gone. We have stayed gluten free for 18 months. My question is do I need to pursue further testing to see if positive for Celiac? Anyone else have negative results initially? Thanks:)kelkel

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

Celiac.com Sponsor (A8-M):


caek-is-a-lie Explorer
caek-is-a-lie
Posted

Yeah I did. My brother and niece were diagnosed w/biopsy in 1999 so I had a blood test. It was negative (as in, the results fell within the acceptable range. I don't know if I had any antibodies or no antibodies.) Just a couple years before, I had developed Narcolepsy. In 2002 I discovered that avoiding grains and sugars almost eliminated my symptoms but it wasn't until a few months ago that I went 100% gluten free. I stopped getting sick from food, stopped running to the bathroom 5 times/night and my mental fog has disappeared. I also discovered that my non-epileptic seizures I've had for 10 years were 100% triggered by gluten.

Maybe if I went back on it for a few months I'd test positive for Celiac, but I worry I'd end up in the hospital, so I just don't eat gluten and accept that gluten is definitely my problem. I wish I had just gone gluten-free 10 years ago. My life would have been so very different!

It might be difficult dealing with doctors...without a diagnosis I get interrogated by the intake nurses at my dr's office ("well, what HAPPENS when you eat gluten..." oh the skepticism) but I don't care what they think (most of the time.) I just take care of myself. If you're healthier avoiding gluten, don't eat it. But I know there are those that will disagree about the diagnosis thing, so I'm sure you'll get lots of great input here.

lizard00 Enthusiast
lizard00
Posted
My daughter (8yo) had stomach aches, headaches, behavior issues, mental fog for about 2 years before we went gluten free - and with that all her symptoms improved dramatically - no more stomach or head aches, significantly improved behavior and mental processing. After this we went back on gluten, all symptoms returned. Had blood testing done, came back negative. I was still not convinced, took out gluten again - and again all symptoms gone. We have stayed gluten free for 18 months. My question is do I need to pursue further testing to see if positive for Celiac? Anyone else have negative results initially? Thanks:)kelkel

How long were you gluten-free before the testing? How long did you go back on gluten before you had the testing done? Once gluten is removed from the diet, it's very hard to get conclusive blood tests. The antibodies are only present when gluten is being consumed.

Welcome to the forum! :)

kel-kel Newbie
kel-kel
Posted
  • Author
How long did were you gluten-free before the testing? How long did you back on gluten before you had the testing done? Once gluten is removed from the diet, it's very hard to get conclusive blood tests. The antibodies are only present when gluten is being consumed.

Welcome to the forum! :)

We had been off gluten for about 2 months then back on for atleast 3 weeks before testing. I don't know if that was back on long enough to have good test results or not. My thing is that I am keeping her gluten free because I know how it affects her. But I wonder if I need to know specifically if she has celiac for other medical reasons????

thanks

kel-kel Newbie
kel-kel
Posted
  • Author

would the genetic testing for her be a good non-invasive indicator for her given my suspicions already??? kelkel

lizard00 Enthusiast
lizard00
Posted

The genetic testing may help, but it in itself cannot diagnose her. The percentage of people who carry the gene is large compared to the number of people projected to actually develop the disease. But if she's having symptoms, has a positive dietary response, and is positive genetically, a doctor may be willing to go with that as a diagnosis. Mine did.

If her symptoms resolve on the gluten-free diet, then you pretty much have your answer. What sort of advice did your ped give you? If her symptoms do not remain resolved gluten-free, then it would be time to pursue other testing.

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. Theresa2407
      - Theresa2407 replied to chrish42's topic in Doctors
      6

      Doctors and Celiac.com

      I see it everyday on my feeds. They go out and buy gluten-free processed products and wonder why they can't heal their guts. I don't think they take it as a serious immune disease. They pick up things off the internet which is so far out in left field. Some days I would just like to scream. So much better when we had support groups and being able to teach...
    2. Scott Adams
      - Scott Adams replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Have Tru Joy Sweets Choco Chews been discontinued??

      Some of the Cocomels are gluten and dairy-free: https://cocomels.com/collections/shop-page
    3. Scott Adams
      - Scott Adams replied to chrish42's topic in Doctors
      6

      Doctors and Celiac.com

      Thank you for the kind words! I keep thinking that things in the medical community are improving, but a shocking number of people still post here who have already discovered gluten is their issue, and their doctors ordered a blood test and/or endoscopy for celiac disease, yet never mentioned that the protocol for such screening requires them to be eating...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      how much gluten do I need to eat before blood tests?

      The rate of damage to the villous lining of the SB and the corresponding loss of nutrient absorbing efficiency varies tremendously from celiac to celiac. Yes, probably is dose dependent if, by dose dependent you mean the amount of exposure to gluten. But damage rates and level of sensitivity also seem to depend on the genetic profile. Those with both genes...
    5. MauraBue
      - MauraBue posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Have Tru Joy Sweets Choco Chews been discontinued??

      Help! My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac. Her favorite candy in the world is tootsie rolls. I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase. Have they been discontinued?? Does anyone have another recommendation...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,261
    • Most Online (within 30 mins)
      7,748
    Joanne Ham
    Newest Member
    Joanne Ham
    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

    • Theresa2407
      Doctors and Celiac.com

      By Theresa2407 · Posted

      I see it everyday on my feeds.  They go out and buy gluten-free processed products and wonder why they can't heal their guts.  I don't think they take it as a serious immune disease. They pick up things off the internet which is so far out in left field.  Some days I would just like to scream.  So much better when we had support groups and being able to teach them properly. I just had an EMA blood test because I haven't had one since my Doctor moved away.  Got test results today, doctor ordered a D3 vitamin test.  Now you know what  type of doctors we have.  Now I will have to pay for this test because she just tested my D3 end of December, and still have no idea about my EMA.    
    • Scott Adams
      Have Tru Joy Sweets Choco Chews been discontinued??

      By Scott Adams · Posted

      Some of the Cocomels are gluten and dairy-free: https://cocomels.com/collections/shop-page
    • Scott Adams
      Doctors and Celiac.com

      By Scott Adams · Posted

      Thank you for the kind words! I keep thinking that things in the medical community are improving, but a shocking number of people still post here who have already discovered gluten is their issue, and their doctors ordered a blood test and/or endoscopy for celiac disease, yet never mentioned that the protocol for such screening requires them to be eating gluten daily for weeks beforehand. Many have already gone gluten-free during their pre-screening period, thus their test results end up false negative, leaving them confused and sometimes untreated. It is sad that so few doctors attended your workshops, but it doesn't surprise me. It seems like the protocols for any type of screening should just pop up on their computer screens whenever any type of medical test is ordered, not just for celiac disease--such basic technological solutions could actually educate those in the medical community over time.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      The rate of damage to the villous lining of the SB and the corresponding loss of nutrient absorbing efficiency varies tremendously from celiac to celiac. Yes, probably is dose dependent if, by dose dependent you mean the amount of exposure to gluten. But damage rates and level of sensitivity also seem to depend on the genetic profile. Those with both genes HLA-DQ2 and HLA-DQ8 seem to be more sensitive to minor amounts of gluten exposure than those with just one of those genes and those with only DQ2 seem to be more sensitive than those with only DQ8. But there are probably many factors that influence the damage rate to the villi as well as intensity of reaction to exposure. There is still a lot we don't know. One of the gray areas is in regard to those who are "silent" celiacs, i.e. those who seem to be asymptomatic or whose symptoms are so minor that they don't garner attention. When they get a small exposure (such as happens in cross contamination) and have no symptoms does that equate to no inflammation? We don't necessarily know. The "sensitive" celiac knows without a doubt, however, when they get exposure from cross contamination and the helps them know better what food products to avoid.
    • MauraBue
      Have Tru Joy Sweets Choco Chews been discontinued??

      By MauraBue · Posted

      Help!  My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac.  Her favorite candy in the world is tootsie rolls.  I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase.  Have they been discontinued??  Does anyone have another recommendation for a gluten-free/DF tootsie roll option?
×
×
  • 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.