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. - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    2. - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    3. - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,923
    • Most Online (within 30 mins)
      7,748

    cmckurtz
    Newest Member
    cmckurtz
    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

    • cristiana
      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • 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.