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

Negative Blood Test But Visible Damage?

Eggs

Recommended Posts

Eggs Rookie
Eggs
Posted

Hi again! Just had some testing. Am a little confused and would appreciate input. 

My lab results were basically negative (deamidated gliadin abs, iga was one point above the reference range, everything else normal), but I had only been eating gluten again for 4 weeks after my doctor drew them after 2 months gluten free. He ordered a biopsy too because in addition to having symptoms that could be celiac disease I have Sjogren's so am at a higher risk. 

I haven't seen the doctor since I got the blood test results (I saw them online), but I just had the endoscopy Wednesday (after 7 weeks back on gluten). No biopsy results yet, but the doctor said he saw damage in my intestine consistent with celiac disease. But he didn't say I have celiac disease. Was he just covering his bases by refusing to commit or is there really a chance that the biopsy comes back negative? I'm worried that my uneventful blood work is going to cause a problem with the diagnosis. My GI told me he's had patients with on-the-fence biopsies and negative blood results who he decided didn't have celiac disease. Does anyone have any input? Can you have visible damage and a negative biopsy and negative blood work?

Thanks for any input!

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

It can take time to build up antibodies in your blood.  That's why celiac experts recommend 8 to 12 weeks of consuming gluten prior to the blood draw.  I am sorry that your doctor did not follow the GI Association's (American, British or Canadian) protocol for celiac disease diagnostics.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

 

It is no wonder that your GI has patients "on the fence".  Perhaps, it is time to get another doctor or at least a second opinion from a more celiac-savvy GI?  

In any case, wait for the biopsies.  I know that it is hard to be patient.  Remember, villi damage can be attributed to many things besides celiac disease.  Without a positive blood test, it is hard to have a definitive diagnosis.  But....you can always test by going gluten-free for six months and gauge how you feel.  Not the best solution, but the bottom line is that you want your health to improve.  

squirmingitch Veteran
squirmingitch
Posted

I'm quoting you:

 (deamidated gliadin abs, iga was one point above the reference range, everything else normal)

 

You had a positive blood test period! That one positive can not be ignored. A positive is a positive even if it isn't sky high. This is more significant in light of your having only been back on gluten for 4 weeks.

Archived

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

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


  • Member Statistics

    • Total Members
      132,372
    • Most Online (within 30 mins)
      7,748
    cianb4121
    Newest Member
    cianb4121
    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

    • Russ H
      Coeliac UK Research Conference 2025

      By Russ H · Posted

      There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease.    https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
    • Rejoicephd
      Basic metabolic panel results - more flags

      By Rejoicephd · Posted

      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      My only proof

      By NanceK · Posted

      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
×
×
  • 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.