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. - trents replied to lehum's topic in Super Sensitive People
      11

      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

    2. - Heavenly Flower replied to lehum's topic in Super Sensitive People
      11

      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

    3. - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    4. - Haugeabs replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      23

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - trents replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

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

    • Total Members
      133,416
    • Most Online (within 30 mins)
      7,748

    Heavenly Flower
    Newest Member
    Heavenly Flower
    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

    • trents
      Welcome to celiac.com, @Heavenly Flower!  You're off to a good start but you can certainly branch out some. White rice is fairly devoid of nutrition. Baked potatoes with the skin (washed) would be a better choice for the starch unless, that is, you don't do well with members of the nightshade family. Yams or sweet potatoes would be even better because of the beta carotene. Do you have issues with eggs and dairy? How about fresh fish? What about fresh fruit? There are also non gluten alternative grains like quinoa, buckwheat (not related to wheat) groats and sorghum that are sold by companies like Bob's Red Mill that can be used for hot breakfast cereals. Gluten free oats is also an option, though some celiacs can't do oats because the protein in them (avenin) is similar enough to gluten to cause a reaction. Gluten is found only in wheat, barley and rye.
    • Heavenly Flower
      I was just diagnosed with celiac disease after Thanksgiving. I can't imagine what all you had to do to get all the information you have, it just seems so overwhelming. I am still trying to figure it all out and don't know if the information I'm getting is correct. I have been eating only white rice and chicken breast, pork, or steak and fresh vegetables.  Gluten free pretzels and rice cakes to snack on. But that's about it cause I don't know what I can eat it's to overwhelming.  I don't even know what symptom to look for for possible cross contamination cause I also have microscopic Colitis which has the same symptoms as celiac disease. I'm hoping at least being on this forum I can get information that will help me figure it all out. Sorry I am not able to help you and hope you get the relief you are looking for. 
    • Known1
      I just read this article here on Celiac.com.  For anyone interested in or following this thread, they may also want to read this article for additional insight:  
    • Haugeabs
      For my Vit D3 deficiency it was recommended to take with Vit K2 (MK7) with the Vit D. The Vit K2 helps absorption of Vit D3. Fat also helps with absorption. I take Micro Ingredients Vit D3 5000 IU with Vit K2 100 micrograms (as menaquinone:MK-7). Comes in soft gels with coconut oil.  Gluten free but not certified gluten free. Soy free, GMO free.   
    • trents
      @Known1, I submitted the following comment along with my contact information: "I have noticed that many food companies voluntarily include information in their ingredient/allergen label section when the product is made in an environment where cross contamination with any of the nine major allergens recognized by the FDA may also be likely. Even though celiac disease and gluten sensitivity are, technically speaking, not allergic responses, it would seem, nonetheless, appropriate to include "gluten" in that list for the present purpose. That would insure that food companies would be consistent with including this information in labeling. Best estimates are that 1% of the general population, many undiagnosed of course, have celiac disease and more than that are gluten sensitive."
×
×
  • 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.