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

Help, blood work, false negative?


Porrin

Recommended Posts

Porrin Rookie

Hello everyone and btw please excuse me if my english is bad ): ! the idea of having celiac has been around my head since a significant time ago, i have anti thyroid autoantibodies and a borderline t4 and tsh, dry eye, multiple joint and muscle pain, acid reflux, stomach pain, diarrhea alternated with constipation, floating and weird stoles, psoriasis, nausea, dizziness, vitamin A deficit, vitamin b12 decifit, vitamin D deficit, random bleeding from lady parts, not related to ovulation, menstruation or anything, im tired all the time and im done feeling like crap everyday, my medic of course suspect celiac so i have a blood work done, it come back negative, i also had what i think was herpetiform dermatitis, sadly i didn't know about it at that time and as i have psoriasis gutata too and it looks kind of similar i think it was the same thing at the beginning, they were blisters that itch a lot on my knees, i should have gone to the doctor but now its too late since they are gone so i cant, the thing is, i was gluten free almost 100% for a very long time, it was kind of intuitive, i didn't think i had celiac at that point, but notice a significant difference eating that way so i "follow my instinct", the dermatitis and psoriasis disappear, later i started consuming gluten once in a while but not in a regular way, maybe one week i eat something, the next week anything, etc etc (i had symptoms this way and thats why i went to the doctor), i was told by my doctor to eat gluten for at least two weeks before the blood work, and i was so bad that i had to go to the urgency's, a lot of stomach pain and constipation, fever, diarrhea, it was hell, so i eat as much as i can but maybe not as regular as i should, Now that i see that all antibodies are completely normal i feel lost and crazy, should i do the biopsy anyway? i dont know any other way to explain the multiple vitamin deficit since i eat really healthy, could this have to be with the fact that i was gluten free for a long time? (the absence of antibodies) even tho i consume gluten once in a while at those times? every antibody come back negative and i had a total IGA and im not deficient. I dont know what to think, i was on my period when blood work was done and i also had flu like syntoms, my immune system was hitting rock bottom as always on these days, maybe that's the reason? idk what to think really... any advice or thought


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

If a person with Celiac is eating gluten-free, then the antibodies should be negative.  It sounds like you were gluten-free, so you wouldn't expect to have any antibodies.

 

Open Original Shared Link

  • Prior to blood testing we recommend 12 weeks of eating gluten."
Porrin Rookie
13 minutes ago, kareng said:

If a person with Celiac is eating gluten-free, then the antibodies should be negative.  It sounds like you were gluten-free, so you wouldn't expect to have any antibodies.

 

Open Original Shared Link

  • Prior to blood testing we recommend 12 weeks of eating gluten."

Thanks for your answer, i was eating gluten before the test, my doctor said i should eat at least two weeks and that's what i did, but not everyday, since i had to stop for 2 or 3 days because of awfull symptoms, i should eat gluten for 12 weeks? that is a lot, :S, in the page you quoted said that 2 weeks is okay for biopsy but blood work takes more, so you can have enought damage on your insides before having antibodys? on the antitransglutaminasa IGG i got 6,9 , 10 is considered positive, even tho is negative is not 0, could it mean something? btw when i ate gluten those 2 weeks i eat full meal, not slices of bread so i thought it would take less time for antibodys to build up, idk

cyclinglady Grand Master

Two weeks (experts say 2 to 4 weeks) on a gluten challenge can be enough to obtain tissue samples (biopsy) through an endoscopic procedure.  I  am sorry that your doctor is not knowledgeable about celiac disease.  Karen is right that it's about 12 weeks for the blood tests.  

cyclinglady Grand Master

The intestines can be damaged rather quickly if you have celiac disease, but it takes time for antibodies to build and circulate in the blood.  Your blood result?  Most people never have a 0.  You need to go above the range (in your case a "10").  

RMJ Mentor

Two weeks may not be enough of a challenge.  Figure 2 in this paper:

Open Original Shared Link

shows a very slight increase in some antibody levels at two weeks but it really took four weeks for the bigger increase.  If you're so sick during the challenge it certainly says that your body can't handle gluten.

Porrin Rookie

Thanks everyone, the graphic was very interesting!, ill keep eating gluten in case i need a biopsy but im unable to keep a diary intake, do i have to eat gluten absolutely everyday? im going to talk with my doctor and see if he HOPEFULLY want to recheck my blood in a moth or so, to see if antibodies build up on me, but im worry he send me back home with a "you are not celiac, you just have ibs" , at least i hope he wants to do the biopsy, he also send me quite a disgusting study that checks for steatorreah, i have to eat 100 gr of butter everyday for 5 days and then collect the last 2, any experience on this subject? Van de Kamer is called i think... im scared because it sounds so aggressive even for a healthy bowel and in general oily food make me feel sick u.u 


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



Celiac.com Sponsor (A8-M):



Archived

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

  • 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. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      17

      My only proof

    2. - Xravith posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Challenges eating gluten before biopsy

    3. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      17

      My only proof

    4. - Dakota01 commented on Scott Adams's article in Winter 2026 Issue
      1

      Are Gluten-Free Processed Foods Making You Sick? (+Video)


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,457
    • Most Online (within 30 mins)
      7,748

    Elliana Brooker
    Newest Member
    Elliana Brooker
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      What exactly are you taking from doterra? 
    • Xravith
      Hello, I'm back with a second post. The first time I wrote, I mentioned the possibility that my symptoms were related to gluten. I did a genetic test in which I resulted to have the predisposition, but the results of my blood test were all negative without IgA deficiency. My doctor suggested that it was necessary to do a biopsy to rule out Celiac Disease. However, he said, because of my family history and my symptoms were strongly related to gluten, it was very possible that my Celiac Disease is developing and my antibodies may become positive in the future.  I tried to continue the gluten challenge for the biopsy, around 2-3 g of gluten per day, but it was enough to make me feel worse each passing day. I started developing anemia and other mild nutritional deficiencies, and it was really affecting my daily life. I'm a student and exams are coming up, so my doctor suggests me to strictly remove gluten until I feel better so I could study without problems until I could do the gluten challenge when I come back home for holidays. Since going gluten free, I feel like a completely different person. My mind is clearer, I have no stomach pain during the day, and even my nails improved within just two weeks. It could also be Non-Celiac Gluten Sensitivity, but of course I’ll need the biopsy to know for sure. I was wondering, has anyone else had negative blood tests at first and later tested positive? And has anyone struggled with the gluten challenge because of symptoms?
    • Jmartes71
      Doterra is a life saver and yes I feel like im waiting because Im getting yes you are celiac, no your not celiac. Im so FRUSTRATED, exhausted and tired of explaining to medical why I feel this way.Im stressed because my body isn't feeling well.Yes I am and no it's not just a food allergy as downplayed with doctors Ive seen.I even went to the " celiac  specialist " Dr Fernandez-Becker who down played my ailments and stated im not and then yes I am I even had one her " care team" ask my why do you want that diagnosis. UNMMMMM. I don't want it, its been my life confirmed in 1994.Menopause intensified extra sensitivity and medical has down played my sibo, ibs, CELIAC, now im having skin and eye issues. I thought help was available but its been a complete medical disaster. 
    • JoJo0611
      I have had my endoscopy this morning with biopsies. My consultant said that it looked like I did have coeliac disease from what he could see. I now have to wait 3 weeks for the biopsy results. Do I continue eating gluten till my follow appointment in three weeks.  
    • cristiana
      Hi @emzie and welcome to the forum. Perhaps could be residual inflammation and bloating that is causing sensitivity in that area.  I was diagnosed with coeliac disease in 2013 and I remember some years ago my sister telling me around that time that she had a lady in her church, also a coeliac, who  had real pain when she turned her torso in a certain direction whilst doing exercises, but otherwise was responding well to the gluten-free diet. As far as I know is still the picture of health. I often end up with pain in various parts of my gut if I eat too much rich food or certain types of fibre (for some reasons walnuts make my gut hurt, and rice cakes!) and and as a rule, the pain usually hangs around for a number of days, maybe up to a week.   When I bend over or turn, I can feel it.  I think this is actually due to my other diagnosis of IBS, for years I thought I had a rumbling appendix but I think it must have just been IBS.  Reading the experiences of other sufferers, it seems quite typical.  Sensitized gut, build up of gas - it stands to reason that the extra pressure of turning can increase the pain. When I am glutened I get a burning, gnawing pain in my stomach on and off for some days - it isn't constant, but it can take up a few hours of the day.  I believe this to be gastritis, but it seems to hurt irrespective of movement.   Anyway, you are doing the right thing to seek a professional opinion, though, so do let us know how you get on.   Meanwhile, might I suggest you drink peppermint tea, or try slices of fresh ginger in hot water? A lot of IBS sufferers say the former is very helpful in relieving cramps, etc, and the latter is very soothing on the stomach. Cristiana
×
×
  • 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.