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

I'm So Confused Am I Or Am I Not

marie33

Recommended Posts

marie33 Rookie
marie33
Posted

I had a blood test done to see if I was celiac and it was negative! I'm so confused :( I have always had trouble gaining weight all my life. I have always been constipated and had stomach trouble. Major fatigue, Aching body and especially my neck. I have geographic tongue. I have night sweats and hot flashes here and there and cold flashes. Major mood swings. Major irritability. Major bloating and a very uncomfortable stomach after I eat wheat products. My heart races and sometimes I have trouble breathing.....Does anyone know how accurate the blood tests are? I feel like throwing up as well off and on when I eat wheat. I go off of gluten this all goes away. I have severe anxiety and panic attacks and they go down to barely anything...but they say its negative from the blood test so I'm not sure what to think??? Any ideas??? Cereal makes my stomach go crazy as well as any beer and breads......

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

Celiac.com Sponsor (A8-M):


GlutenFreeManna Rising Star
GlutenFreeManna
Posted

The blood tests have a high false negative rate. If you were gluten free or even gluten lite for a while before you had the blood test done it will make the results inaccurate. The best test now is to stop eating gluten. If your symptoms go away when you stop eating gluten then you have your answer. It sounds like you already figured that out, so listen to your body.

ravenwoodglass Mentor
ravenwoodglass
Posted

There are fairly high rates of false negatives with the blood tests. Were you gluten free or gluten light when the panels were drawn? If you were that could be one reason why but false negatives occur even when folks are eating a full gluten diet.

If you have resolution of your issues gluten free you don't need a doctors permission to be gluten free. There are folks on here that are 'self diagnosed' but if you are going to get any more testing done make sure you stay on gluten until the testing is finished.

Dixiebell Contributor
Dixiebell
Posted

My sons blood tests were negative as were mine. He was having so many problems and with our family history of all sorts of illness we opted to not do the endo. instead we tried the gluten-free diet and it is working. He had severe constipation, many different types of rashes, headaches, very strange looking BM's, trouble breathing(rarely) and whined alot. I am so glad his ped Dr. sent him for celiac test or I never would have known about it.

ToriMartin Apprentice
ToriMartin
Posted

I had a blood test recently which was negative. However, I have known all my life I'm allergic to Wheat Starch & Wheat Gluten. My worst problems have been over the last 12 years & recently got worst. So, I went on nothing but Veggies & Meat for 5 days. Introduced Dairy, Bad IBS the next day. Eat Jerkey not knowing it had some gluten in it, same thing... So, it's my understanding that I dont' have celiac but am Gluten Intolerant. Everything makes sense now. I honestly can care less what a Dr says these days... I'm ashamed that they don't listen or try to help. I don't care what tests show. All I know is what reactions happen when I eat something I shouldn't.

I know how you feel :) Good Luck!

Archived

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

Go to topic listing

  • 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. Scott Adams
      - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley...
    2. MogwaiStripe
      - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease. Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/
    3. Scott Adams
      0

      Tahini Swirl Fudgy Brownies (Gluten-Free)

    4. Butch68
      - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too. is this everyone’s experience? Can I drink it? I get dermatitis herpetiformis and don’t get instant react...
    5. trents
      - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,216
    • Most Online (within 30 mins)
      7,748
    Athenablue
    Newest Member
    Athenablue
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      Guinness, can you drink it?

      By Scott Adams · Posted

      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Gluten Issues and Vitamin D

      By MogwaiStripe · Posted

      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Guinness, can you drink it?

      By Butch68 · Posted

      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • 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.