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

Did I Do My Antibody Test Wrong?

misha

Recommended Posts

misha Newbie
misha
Posted

Hi everyone. My sister has celiac disease. I suspected I had it too so I went on a gluten free diet for about a year. Then I decided to have the antibody blood tests, so for about three weeks I ate a couple of pieces of spelt and rye bread a day, then I had the tests. They came back negative for celiac disease.

Thinking I didn't have the disease, I've been eating lots of bread of all kinds since then, but feeling worse and worse -- having anemia, as my new blood tests show, other blood test abnormalities (high ESR), and very fatigued. I just stopped eating gluten last week and now I feel a thousand times better.

Do you think it's possible that I didn't eat enough gluten to build up my antibodies when I took my test? I feel really dumb about it now. Or would that have been enough gluten to make antibodies show? I'd really appreciate any advice. I feel embarrassed to talk to my doctor about it, because he already acted like I was a total pain when I asked for the tests.

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

Celiac.com Sponsor (A8-M):


SueC Explorer
SueC
Posted

You may not have been eating gluten long enough for damage to show on bloodwork. After being gluten-free it is recomended to go back to eating gluten for 3 months before being tested. You might want to try again in a couple of months! :(

Rachel--24 Collaborator
Rachel--24
Posted

Definately not long enough for accurrate test results. If you feel bad eating gluten and then feel good off of it I'd say you already have your answer but if you need testing to be convinced...then I'd say at least 3 months eating plenty of gluten everyday.

misha Newbie
misha
Posted
  • Author

Thanks to both of you for your reply! I noticed that you had grave's disease, Rachel -- I've had hyperthyroidism too.

Definately not long enough for accurrate test results. If you feel bad eating gluten and then feel good off of it I'd say you already have your answer but if you need testing to be convinced...then I'd say at least 3 months eating plenty of gluten everyday.
  • 2 weeks later...
munchkinette Collaborator
munchkinette
Posted

I was wondering about this too- I tried the gluten-free diet for two weeks, and my doctor said I need to eat wheat for one week before getting my antibody tests. (next week)

Will one week be enough since I only ate gluten-free for a short time?

Rachel--24 Collaborator
Rachel--24
Posted

Are you getting bad symptoms when you eat gluten? If it were me and I *wasnt* in too much discomfort...I'd eat it for alot longer than one week to get the most accurate test results. I was off gluten for 2 weeks before testing and the tests were negative. Once I was gluten-free for awhile I was never able to go back on it to retest because my symptoms were too severe.

Nancym Enthusiast
Nancym
Posted

Dr. Fine says the intestines can heal up pretty well even as soon as two days of going gluten free and it can take years to get them messed up again to the point of detecting the disease through blood tests or biopsy. And you really do have to be pretty sick to get a positive on the biopsy. I really think the current standard lab tests are very bad at detecting gluten sensitivity unless you're at the extreme end of illness.

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

Celiac.com Sponsor (A8-M):


munchkinette Collaborator
munchkinette
Posted
Are you getting bad symptoms when you eat gluten? If it were me and I *wasnt* in too much discomfort...I'd eat it for alot longer than one week to get the most accurate test results. I was off gluten for 2 weeks before testing and the tests were negative. Once I was gluten-free for awhile I was never able to go back on it to retest because my symptoms were too severe.

I've been eating gluten again for 2 days and I do feel kinda gross. I jumped in because I had the same question and just like micha I have been anemic and really tired. I also had a really tiring weekend with lots of exercise (snowboarding) and drinking, so I can't pick out what is from gluten.

I'm still too new to this to understand what it's all about. My two weeks without gluten was an experiment because of my recent anemia tests. I don't actually know which symptoms are from gluten but I really think the tiredness is related since I noticed a big difference after eating gluten-free for about 4 days. It's not that I need really official test results. I'm just too new to this to determine based on how I feel, so I'd like to get an accurate test.

lemonade Enthusiast
lemonade
Posted
Definately not long enough for accurrate test results. If you feel bad eating gluten and then feel good off of it I'd say you already have your answer but if you need testing to be convinced...then I'd say at least 3 months eating plenty of gluten everyday.

Rachel,

how much would you say is "plenty"?

I have never really liked bread, so before going gluten-free, i didnt eat much breads, my only grain came from oats, which are said to be lower in gluten, if not gluten free, depending on cross contamination, but im thinking that oats still cotnained enouhg gluten to send me over the edge and create the symptoms i have. Is it possible that I hadnt been eating enough gluten for the test results to be accurate?

Lemonade

Are you getting bad symptoms when you eat gluten? If it were me and I *wasnt* in too much discomfort...I'd eat it for alot longer than one week to get the most accurate test results. I was off gluten for 2 weeks before testing and the tests were negative. Once I was gluten-free for awhile I was never able to go back on it to retest because my symptoms were too severe.

Rachel...

How were you diagnosed with celiac disease?

Lemonade

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. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      This article does not address migraines at all. Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines...
    2. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      Excessive dietary tyrosine can cause problems. Everything in moderation. Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese. Sulfites cause a high histamine release. High histamine levels are found in migraine. Following a low histamine diet like the low histamine Autoimmune Protocol diet,...
    3. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit.
    4. Scott Adams
      - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."
    5. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,158
    • Most Online (within 30 mins)
      7,748
    MollyK
    Newest Member
    MollyK
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Body dysmorphia experience

      By Scott Adams · Posted

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.