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

Can Test Be Negative But Still Be Celiac?


jewlesD

Recommended Posts

jewlesD Apprentice

just curious...my test came back normal, but I have been living gluten free for awhile and feeling better then I have in years...when I got the test I was eating a gluten filled diet, so thats not the issue. my doctor says that it is celiac even though the test came back normal...has anyone else experienced this?


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



Celiac.com Sponsor (A8-M):



Lisa Mentor
just curious...my test came back normal, but I have been living gluten free for awhile and feeling better then I have in years...when I got the test I was eating a gluten filled diet, so thats not the issue. my doctor says that it is celiac even though the test came back normal...has anyone else experienced this?

After an extended period of being gluten free, it would take the equivalent of 3-4 slices of bread for an estimated 3 months for the test not to be jeopardized by diet.

Blood tests as well as biopsies can be inaccurate. It sounds like your doctor is on top of things. If you respond well to a gluten free diet, that in itself is a diagnosis. Whether you are gluten intolerance of Celiac Disease the prescription is the same...a gluten free diet.

Amyleigh0007 Enthusiast

Wow! Your doctor sounds like a dream! When my test came back negative my doctor didn't want anything to do with me anymore.

jewlesD Apprentice

Yeah,

I have a great doctor who is very supportive of the celiac diagnosis and is convinced it is 100% celiac since diet showed great improvement and lack of diet brings symptoms back real bad... I was just wondering if anyone else had a negative blood test, but still was diagnosed as celiac...and did they get the diagnosis only after a biopsy? I cant believe how many people have very unsympathetic doctors, although it took a long time to find this doctor..one who would actually listen and not think I was crazy!

cyberprof Enthusiast
Yeah,

I have a great doctor who is very supportive of the celiac diagnosis and is convinced it is 100% celiac since diet showed great improvement and lack of diet brings symptoms back real bad... I was just wondering if anyone else had a negative blood test, but still was diagnosed as celiac...and did they get the diagnosis only after a biopsy? I cant believe how many people have very unsympathetic doctors, although it took a long time to find this doctor..one who would actually listen and not think I was crazy!

I agree, you are lucky with your doctor.

I was diagnosed by biopsy when they were looking for ulcers. I had the blood test 3 days later (still eating gluten) and was negative.

~Laura

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,741
    • Most Online (within 30 mins)
      7,748

    Kaz 1
    Newest Member
    Kaz 1
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • 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.