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 Coping with Celiac Disease
      12

      Related issues

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      12

      Related issues

    3. - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      12

      Related issues

    4. - Known1 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

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

    • Total Members
      133,457
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      I take Niacin, bilberry, Omega threes, zinc, selenium, and Vitamins C and A for eye health, skin health and digestive tract health.  The skin, digestive system and eyes are all derived from basically the same sort of cells.  Niacin is extremely important to keeping these tissues healthy.    Niacin has be shown to prevent cataracts and improve eye health.  Niacin is turned into tryptophan which is necessary to heal the digestive tract.  Tryptophan is used to make Serotonin, a very important neurotransmitter in mood regulation.  Those with Niacin insufficiency become irritable and easily upset, angry, even. Niacin improves skin health.  The flushing of Niacin opens the smallest blood vessels in the skin so that waste products can more easily be removed.  I have Dermatitis Herpetiformis.  Niacin helps drain away those built up antibodies in the blisters and improve skin health.   Bilberry contains lutein and zeaxanthin and other anthocyanins,  potent antioxidants that help protect the eyes from macular degeneration and cataracts.  Bilberry has sGLT1 and GLUT2 which help to lower glucose levels by removing excess glucose from the bloodstream.  High blood glucose levels are bad for eye health.   Omega Threes are important to provide relief in dry eyes.  You are familiar with how oil floats on water.  Same thing happens with eyes.  Omega threes provide the oily layer that protects water from evaporating from the eyes causing dry eyes.  Omega threes in olive oil, sunflower seed oil,  and flaxseed oils will help improve dry eyes. Vitamin A and Riboflavin B2 are important in this function as well.   None of the medications I was given improved my dry eyes.  I increased my Omega threes and Vitamin A, and had improvement very quickly. Selenium and zinc are important in skin and eye barrier functions, too, and are important to preventing infections. When I take 100 mg of Niacin every three hours (but not more than 500 mg/day), my skin and eye health improves.  If one is deficient in Niacin, the flushing effects may be uncomfortable, but ride it out, continue taking Niacin and the flushing goes away as niacin stores inside cells are repleted.  When flushing, don't scratch!  Use pressure applied over a bigger area above the itch.  I wrap up in a towel or blanket to create the counter pressure.  The flushing goes away the longer one takes Niacin.  Don't use Niacinamide (the non flushing form of Niacin).   Other vitamins that improve eye health are Vitamin E and Pyridoxine B6 and Thiamine B1.  Most Vitamin E sold is derived from wheat germ, so find another source of Vitamin E.  I used Evening Primrose oil, also a source of healthy Omega threes and helps with female problems like perimenopause  and menopause symptoms. Do be aware that antifungals and antibiotics (as are frequently prescribed) destroy Thiamine.  Immunosuppressive drugs can suppress production of tTg antibodies.  Supplementing with thiamine above the RDA is safe and nontoxic.  RDA were set as the lowest amount to prevent illness.  Optimal health is seen in higher amounts.   Do talk to your doctor and dietician about supplementing essential nutrients.   References: https://pubmed.ncbi.nlm.nih.gov/39183990/ https://pubmed.ncbi.nlm.nih.gov/41156490/ https://pmc.ncbi.nlm.nih.gov/articles/PMC7602486/
    • Jmartes71
      Thankyou. I have cyclosporine 0.05% OP single use drops and Erythromycin ophth ointment 3.5 Gmail for eyes. Dermatologist gave Pimecrolimus cream 1% and Clobetasol Propoonate USP 0.05% it doesn't help at all.i do see a difference taking Yarrow Pom but its too expensive!
    • Wheatwacked
      I've added NAC, N-Acetyl Cysteine; "crucial for replenishing glutathione—the body's master antioxidant." I used Clear Eyes 1% NAC lubricating eye drops for several years until the FDA forced them off the market.  In 2015 I had cataracts in bofh eyes.  In 2019 my left eye was clear, right eye was improved.  They are back now.  I discovered new companies with the drops at higher NAC but went with 500 mg NAC capsules.  Spread the cheer 🤓. My impression so far is the NAC is doing good.  Best with meal.
    • Known1
      When the pizza was dropped off she told me it had a Udi's certified gluten-free crust.  Even so, I am trying to play things as safe as possible for at least the next 6-months.  With that said, I returned the two slices to my neighbor and asked her to thank her mom for the pizza.  😊  I will likely bump into my neighbor's mom sometime next week.  She shuttles my neighbor's son, a freshman, to and from high school.  As mentioned, she is very kind so I am sure she will understand.  Heck, at least it went back to her family members and not in the trash.
    • Jmartes71
×
×
  • 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.