Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Blood Testing

billy

Recommended Posts

billy Rookie
billy
Posted

how accurate are blood tests? i just had my second negative test in two years even though i've tested myself through trial and error over the past four with textbook symptoms (i do go see my first gi doc in two weeks). has anyone else had negative bloodwork with a positive biopsy? thanks, billy

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

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

I had mostly negative bloodwork (only a positive anti-reticulin IgG), and no biopsy - just a positive dietary challenge. Blood testing is appearing (according to some recent articles) to be less reliable than the statistics show - and this appears to be particularly true for people who don't have much damage to the villi. It's appearing (from anecdotal and other evidence) that there is a sort of "subclinical" celiac disease that is more correctly defined as gluten intolerance, without the severe intestinal damage.

Jinxy'sMom Newbie
Jinxy'sMom
Posted

Hi Billy. The only blood tests I had that came back as positive were the IgG and IgA. All the others were neg. I decided not to pursue a biopsy at that point because I didn't have any symptoms. Lately I have developed what I believe is DH and I'm seeing my GP Friday for a referral to the GI and I'd like to have the endoscopy done.

Guest barbara3675
Guest barbara3675
Posted

Hi there----I had a negative blood test and after reading a lot about Enterolab on these message boards decided to do their most comprehensive test which included gene testing. They got back to me in less than two weeks after I sent the kit back that they had sent me and I am gluten and casein intolerant. I would not have known this if I had relied on my doctor for information. I highly recommend this kind of testing. The results come via email and are pretty comprehensive. I had already been eating gluten-free, but now am eating cf too. I have a six year old granddaughter that has celiac disease and we know it is hereditary.....and now we know where she got it from, darn. I am going to be 60 soon, I probably have had this for a long time, but just got diagnosed as I didn't have the bad gut symptoms until recently. However, I did have some of the other ones which are: migraine headaches, depression and just last winter diagnosed with fibromyalgia/which is pain all over your body in the mucles, tendons, ligaments. I feel this is all leading up to the diagnosis of gluten intolerance now/it is all linked. '

Barbara

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,999
    • Most Online (within 30 mins)
      7,748
    Maryam Goli
    Newest Member
    Maryam Goli
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Vaccines

      By knitty kitty · Posted

      If you have poor reactions to vaccines, preservatives, sugar alcohols and metals, you may be deficient in Thiamine Vitamin B1.  Thiamine is needed in the immune response and production of antibodies.  Thiamine can be depleted by vaccines if you are already low to begin with due to the Malabsorption of Celiac Disease.  Thiamine can be destroyed by sulfide preservatives in vaccines, which can result in the body's poor response to vaccines.  Thiamine also chelates metals which allows those metals to be removed in the feces.  Chelation removes thiamine from the body, resulting in a state of thiamine deficiency.  Sugar alcohols need to be processed through the liver using thiamine.  Again, if you're low in thiamine as many Celiac are because of the Malabsorption of celiac disease, vaccines can be a tipping point, resulting in a thiamine deficient state. High doses of Thiamine required to correct thiamine deficiency states are safe and nontoxic.  Thiamine has no toxicity level.  Thiamine and the other B vitamins need to be taken together because they interact together to sustain health.   References: https://pubmed.ncbi.nlm.nih.gov/25542071/ https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/
    • knitty kitty
      Increasing symptoms after going gluten free

      By knitty kitty · Posted

      @Pasballard, Keep in mind those gluten free processed snacks are not required to have vitamins and minerals added to them to replace vitamins lost in processing like gluten containing products.   We need the eight essential B vitamins to turn those carbs into energy to fuel our bodies and make enzymes that sustain life.  Sudden weight gain (or weight loss) can be symptomatic of Thiamine Vitamin B1 deficiency.  Thiamine is the B vitamin with the shortest storage time, and so  thiamine deficiency shows up first with vague symptoms like weight gain or loss, fatigue, not sleeping well, achy or cramping muscles, digestive issues and headaches.   Taking vitamin and mineral supplements helps boost your body's ability to absorb these nutrients which keeps our bodies healthy.  B Complex vitamins and Vitamin D (which regulates inflammation) are usually low in people with Celiac disease.  Talk to your doctor and nutritionist about supplementing.
    • knitty kitty
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By knitty kitty · Posted

      Welcome to the forum, @WildFlower1, Here's an article that explains about the updated gluten challenge guidelines.  Be sure to read the comments below the article. Have you been checked for nutritional deficiencies?  Low iron can affect antibody production, causing false negatives on antibody testing.  Do you currently struggle with low iron?   Low Vitamin D can cause amenorrhea, cessation of menstrual periods.   Correcting nutritional deficiencies is a big part of Celiac disease.  We don't absorb well the eight essential B vitamins and other vitamins and minerals like calcium, resulting in osteopenia, hair loss, infertility, and neurological symptoms.  Unfortunately, doctors are not given much training in nutritional deficiencies and don't recognize the connection with the malabsorption of Celiac disease. We get very frustrated here with doctors ordering us to put a harmful substance in our bodies in order for them to say "that makes you sick".   Duh, we know that already. Do try to increase your consumption of gluten for at least two weeks before retesting.  Eat the chewy kinds of breads.  Cookies and cakes don't have as much gluten in them as those chewy artisan breads and thick pizza crusts. I admire your tenacity at continuing the gluten challenge.  Do keep us posted on your progress.  We'll continue to support you on your journey to diagnosis and recovery.
    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      I would continue with your gluten challenge for another 2-3 weeks with the increased intake of gluten as outlined above.  You now say if you were confirmed to have celiac disease you would be even more strict about avoiding cross-contamination whereas in your first post you said, "Previously for many years 10+ I have been on a strict gluten free diet." Those statements seem to contradict one another. The celiac community as a whole understands that to be "on a strict gluten free diet" necessarily involves significant attention to cross-contamination. If you have not been strict with regard to CC up to now, it is difficult to say how that may have compromised your recovery and contributed to ongoing symptoms. Yet, even a significant reduction that falls short of gluten free can yield negative test results.
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Thanks for your response! Yes, you’re correct that many of my symptoms improved when I went gluten-free, but issues like bone loss, infertility, hair loss, etc., seem to be the ones that haven’t responded. I’ve been on the gluten challenge for almost 7 weeks now, and I’m wondering how long I should continue it before testing again and making a final decision. I understand the benefits of eating gluten-free long-term, but I’m unsure how much longer to stick with the challenge to avoid another false negative celiac blood test.   What I would do differently if the test were confirmed positive is I’d receive a small amount of government help with gluten-free foods as a confirmed celiac. Doctors would be able to rule out further exhaustive testing. I’d also become even more strict about avoiding cross-contamination (for example, when eating at someone’s house, they may say something is safe, but it could have been cross-contaminated with gluten, or when going out to restaurants, they might say it’s fine, but it really isn’t). So, I would be extremely strict with cross-contamination if I were 100% confirmed as celiac, even though I’ve tried to be over the years but still seem to get sick.   Any advice on how long is typically recommended to continue the gluten challenge to avoid a false negative on the celiac blood test would be greatly appreciated!
×
×
  • Create New...