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

Possible Celiac, Negative Blood Test

kitty-el

Recommended Posts

kitty-el Newbie
kitty-el
Posted

I'm wondering if anyone can offer advice. I have suffered stomach pains, severe bloating, furling stomach, wind, low iron, teeth grinding for as long as I can remember. I have a family history of celiac disease, I had a blood test in 2012 that came back negative so I just left it at that.

Over the past 6 months my symptoms have become much worse, I have headaches, brain fog, dry flaking skin, joint pain and difficult sleeping.

I was reading an article on celiacs and I literally have all the symptoms, I'm wondering if a blood test can be negative and what else I can do?

In the past I have done diets like Atkins so eliminating all gluten and my stomach problems disappear completely but I'm not sure if that's gluten or some other sensitivity.

Thank you

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

Celiac.com Sponsor (A8-M):


zs1994 Newbie
zs1994
Posted

From what I've read, on rare occasions blood tests can be negative if you have Celiac. Best thing to do is to continue having gluten in your diet and then explain to your doctor about your symptoms and push for a biopsy! All the best :)

kareng Grand Master
kareng
Posted

Your blood test was 3 years ago.  It is possible to develop Celiac since then.

kitty-el Newbie
kitty-el
Posted
  • Author

Kareng, I didn't even think about that. I presumed if you had the blood test then that was that.

Thank you for your replies

Jeepasch Newbie
Jeepasch
Posted

There is a chance for false-negative with the blood test which is why doctors advise having the scope and biopsy done first. If the biopsy reveals there is gluten damage then the doctor will order the blood test to confirm celiac disease. If you decide to pursue a scope it is very important that you continue to eat gluten in order for the test to be accurate.

 

Good luck!!

psawyer Proficient
psawyer
Posted

Jeepasch, I think you have the process backwards. The blood tests are used for screening, and a positive result will likely cause the doctor to order the endoscopy for confirmation. Once damage has been confirmed by the biopsy, a diagnosis cane be made based on that alone. False negatives can occur with both the blood test and the endoscopy, particularly in children. And, yes, you must be eating gluten on a regular basis for either test to be accurate.

cyclinglady Grand Master
cyclinglady
Posted

Kitty, ask for the complete celiac blood panel:

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

I tested positive in just the DGP IGA and the rest were negative, yet biopsies revealed moderate to severe intestinal damage!

Welcome to the forum and let us know how it goes!

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

Celiac.com Sponsor (A8-M):


Jeepasch Newbie
Jeepasch
Posted

psawyer, my gastroenterologist approaches the process this way. It could be that he encountered false-negative blood tests with other patients which led to problems. 

squirmingitch Veteran
squirmingitch
Posted

Kitty, if any of your relatives who have celiac are first degree relatives then you should be tested every 2 years or sooner if symptoms present and with you the symptoms are presenting. Be SURE to tell your doc you have celiac in the family. We can't stress enough that if you've been eating gluten free or gluten light then you will need to do a gluten challenge or risk false negative tests. 

Open Original Shared Link

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,605
    • Most Online (within 30 mins)
      7,748
    Horslvr123
    Newest Member
    Horslvr123
    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

    • kopiq
      almost a year in recovery - so many questions about to give up

      By kopiq · Posted

      also my hands are always cold, freezing cold in the winter and even cold during hot summer days. its like i have a shield. i feel warm but its not penetrating inside, my teeth chatter as well and my left index finger goes dead white when im super hungry. all dr tests come back fine. im so hopeless.
    • kopiq
      almost a year in recovery - so many questions about to give up

      By kopiq · Posted

      thank you, ive asked my dr to test for vitamin deficiency and shes only said vitamin d (very low 26) and b12, she says all other vitamins are not included in her blood tests only the major ones, C, D, E, B12 etc. Ive been following the aip diet now and im going to stay on it very strict to see how it goes. im eating tons of food, romaine salads, mango, peaches, pears, cucumber, celery, zuccnini, sweet potator, plantains, ground turkey and beef and chicken.  i eat about 4 plate filling meals a day with two to three good size snacks a day including about 3 or 4 bananas. im still not absorbing nutrients, if i eat any sort of food with fat, I.e ground beef or fatty pork the taste of fat lingers in my mouth for 2-3 hours sometimes longer, if i bask in sun for vitamin d i feel great but then lethargic and feel strange for a day or two later, like im still absorbing it all in. even regular sweet foods like fruit the sweetness stays in mouth for hours. ive had blood work done for gall bladder, thryroid, pancreas, liver, kindey dr says they are all fine. i dont know what other tests i can do?   ive attached two pictures of the rash that broke out on my legs, feet and small one near wrist bone bright red was before treatment, second scabby one is during treatment and healing.  https://freeimage.host/i/FrI3KZb https://freeimage.host/i/FrI3Fwu  
    • Scott Adams
      Trader Joe's strikes again

      By Scott Adams · Posted

      The Trader Joe's GF hamburger buns are the best!
    • StuartJ
      Trader Joe's strikes again

      By StuartJ · Posted

      Just ate some for lunch!  A really superb alternative to gluten-free bread and burger buns that all have the taste and consistency of compacted sawdust.  I bought two packs and now I'm down to one remaining muffin so need to get some more; the only thing is it's their own brand - they don't do mail or on line ordering and the nearest TJ's is in Charlottesville (a real nightmare to drive around) an hour away from me over the mountain.  😒
    • somethinglikeolivia
      Question about biopsy

      By somethinglikeolivia · Posted

      When I underwent a scope three years ago, the GI told me I was negative for celiac because there was no intestinal damage (in spite of multiple strong positive labs). I went back to look at my biopsy report out of curiosity, and found this note: “Localized mild nodular mucosa was found in the duodenal bulb. Duodenum otherwise normal.” The pathology from this scope was negative. Does anyone have any insight into mild modular mucosa and what that could indicate or be a precursor to? I’ve read it can be a sign of celiac or other gut issues like h. Pylori, etc.  Thanks in advance! 
×
×
  • Create New...