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 Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    2. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    3. - Theresa2407 replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    4. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    5. - Aretaeus Cappadocia replied to Anne G's topic in Related Issues & Disorders
      2

      celiac disease and braces

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

    • Total Members
      133,707
    • Most Online (within 30 mins)
      7,748

    Ben Cohen
    Newest Member
    Ben Cohen
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @Heatherisle, You have good reason to worry.   Ask the doctors to do an Erythrocyte Transketolace Activity Assay to test for Thiamine B1 deficiency.  Thiamine deficiency is frequently found in B12 deficiency.  Deficiencies in all the B vitamins are common with malabsorption due to Celiac disease.  Thiamine can run out in as little as three days.   Thiamine deficiency symptoms can be mistaken for other diseases such as MS and Guillian-Barre Syndrome.  Thiamine deficiency symptoms include pain in legs and abdominal pain as well as depression and gastrointestinal symptoms. Thiamine B1, Pyridoxine B6 and Cobalamine B 12 together relieve nerve pain. References and Interesting Reading: Wernicke’s encephalopathy mimicking multiple sclerosis in a young female patient post-bariatric gastric sleeve surgery https://pmc.ncbi.nlm.nih.gov/articles/PMC8462913/ Thiamine Deficiency Masquerading As Guillain-Barré Syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11872742/ Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke’s Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pmc.ncbi.nlm.nih.gov/articles/PMC6429982/ Is there a Link between Vitamin B and Multiple Sclerosis? https://pubmed.ncbi.nlm.nih.gov/28875857/ Thiamine Deficiency and Neurological Symptoms in Patients with Hematological Cancer Receiving Chemotherapy: A Retrospective Analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC8559079/ The Effects of Vitamin B in Depression https://pubmed.ncbi.nlm.nih.gov/27655070/ Thiamine Deficiency Neuropathy in a Patient with Malnutrition due to Melancholic Depression https://pmc.ncbi.nlm.nih.gov/articles/PMC10942818/ Myopathy in thiamine deficiency: analysis of a case https://pubmed.ncbi.nlm.nih.gov/16920153/ Neurologic complications of thiamine (B1) deficiency following bariatric surgery in adolescents https://pubmed.ncbi.nlm.nih.gov/38705013/ B Vitamins in the nervous system: Current knowledge of the biochemical modes of action and synergies of thiamine, pyridoxine, and cobalamin https://pubmed.ncbi.nlm.nih.gov/31490017/ Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults https://pmc.ncbi.nlm.nih.gov/articles/PMC6459027/ B Vitamin Deficiencies and Associated Neuropathies https://pmc.ncbi.nlm.nih.gov/articles/PMC12855320/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Update on Safety Profiles of Vitamins B1, B6, and B12: A Narrative Review https://pmc.ncbi.nlm.nih.gov/articles/PMC7764703/  
    • Heatherisle
      Hi  There’s been no mention of her adrenal glands as far as I know
    • Theresa2407
      Have they checked her Adrenal glands.    
    • Heatherisle
      Just an update on my daughter. She is still in hospital and getting quite depressed about everything. She had a CT scan of head and chest to rule out stroke in view of her symptoms. Thankfully there is no evidence of that so they now want to do an MRI to rule out MS so this is freaking her out and it’s not doing me much good either!!!They’re also going to do further blood tests to check vitamin levels. My husband and I are trying to reassure her the best we can that hopefully it’s just her body’s reaction to having the Vitamin B medication and it’s affecting her nervous system etc. Think the tingling has subsided but still having some lower back and pelvic pain and some leg pain. Thanks for reading and my apologies if I sound paranoid.
    • Aretaeus Cappadocia
      Your concerns are reasonable about the celiac risk aspect, and getting additional medical input is a good idea. Obviously I don't know the extent of your child's misalignment, but please don't think of it as just a cosmetic issue. Braces improve bite alignment and typically provide long term health benefits.
×
×
  • 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.