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

Need Your Opinions Please...

JessicaB

Recommended Posts

JessicaB Explorer
JessicaB
Posted

ok. I would like to know everyones point of view on my stance. I had the blood test for celiac done on 11/15/2005. Here were the levels, IGA 1 (should be 0-4) igg 74 (should be 0-9)ttg iga 0, ttg igg 2 (should be 0-5), endomysial antibody iga 68l (should be 70-400). The doctor said usually two of the first numbers should be high for celiac but since my antibodies were low, thats why only one was high, DOES THAT MAKE SENCE???

Well.....He said the 74 is very high, most likely is has to be celiac. I recieved my biopsy results today THEY ARE NEGATIVE......!! Why???? If im in so much pain when i eat gluten why is there no damage? This has been going on since i had my daughter in july 2004??

Im going to see a specialist at the University of Maryland, Center for Celiac Research, anyone heard of that??

DOES ANYONE KNOW ABOUT THESE LEVELS???? PLEASE LET ME KNOW ASAP I WOULD LIKE TO KNOW YOUR POINT OF VIEWS. DO I HAVE CELIAC?? WHY IS THE BIOPSY NEGATIVE, I KNOW THE SPECIALIST WILL TELL ME BUT I NEED YOUR POINT OF VIEW, OF COARSE, EVERYONE HERE HAS THE EXPERIENCE AND KNOWLEDGE, THANKS A BUNCH!

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

The biopsy is not perfect... It can miss damage if not enough samples are taken or if samples are taken from an area that doesn't have damage yet.

Your blood tests do show Celiac... just because the biopsy doesn't show damage YET, doesn't mean it's not headed that way. There is still so much that the medical community does not know when it comes to Celiac, and many are coming to learn that the biopsy is NOT the gold standard it once was thought to be. There are many many Celiacs who have had negative biopsies despite positive blood test results, continued to eat gluten, got sicker and then years down the road DID HAVE a positive biopsy.

The biopsy in my opinion is only valid for confirming VAST amounts of damage. For sporatic or early damage, the diagnostic ability of a biopsy is sadly limited.

Since your blood work was elevated, YES you do have Celiac, go on the diet IMMEDIATELY (since you have already had the biopsy) and keep track of any and all improvements. IMHO dietary response is the BEST indicator. Give it a good 6 months to a year before you make any judgements and make sure you are 100% gluten free.

My blood tests were enough to dx Celiac in me, I never did have the biopsy. Not going to either. The way my body responded to the Gluten Free diet was no less than miraculous.

My Dr. dx me based on blood test results and positive dietary response.

VydorScope Proficient
VydorScope
Posted

Okay, we have a very high entrance of new posters here so I hope I do not sound like a broken record when I answer these posts...

Biopsy is never ever negative. It can not in anytime, or way be negative. THat is REGUARDLESS of the skill of the doctor/lab. The proper lable for your results is "non-postive". This is a MASSIVE difference. I have a long post here some place with the details of that is so that I can dig up.

Since your blood work was elevated, YES you do have Celiac, go on the diet IMMEDIATELY (since you have already had the biopsy) and keep track of any and all improvements. IMHO dietary response is the BEST indicator. Give it a good 6 months to a year before you make any judgements and make sure you are 100% gluten free.

Exactly! DO what nini says! Thats the best move you your situtation in my non-doctor opinion. :D

Archived

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

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


  • Member Statistics

    • Total Members
      131,062
    • Most Online (within 30 mins)
      7,748
    Lexxi Hartless
    Newest Member
    Lexxi Hartless
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Blood results

      By trents · Posted

      Maybe celiac but maybe NCGS that was misdiagnosed as IBS morphing gradually into celiac. Is NCGS a new category to you? It shares many of the same GI symptoms with celiac disease but does not damage the small bowel lining like celiac.
    • knitty kitty
      Oral thrush question

      By knitty kitty · Posted

      Thiamine has antifungal properties.  The body uses thiamine to keep bacteria and yeasts from overgrowth in the digestive system.   Fluconazole use can cause thiamine deficiency.   Supplementing with thiamine in the form Benfotiamine would be beneficial as Benfotiamine promotes intestinal healing.   Thiamine and the other B vitamins tend to be low in Celiac due to malabsorption.  Talk to your doctor about supplementing vitamins and minerals.
    • Scott Adams
      Nutrient deficiencies despite normal MARSH and strict gluten-free diet

      By Scott Adams · Posted

      Welcome @Natalia Revelo, your experience is profoundly difficult and, sadly, not entirely unique within the celiac community. It's the frustrating reality of "silent" or ongoing damage that isn't captured by the MARSH score alone, which only measures active villous atrophy. Your normal biopsy suggests your diet is preventing the classic autoimmune attack, but it doesn't mean your gut has fully healed or that other issues aren't at play. The inflammation from your newly discovered milk and egg allergies is a huge clue; this constant allergic response can create a low-grade inflammatory environment that severely hampers nutrient absorption, effectively creating a "leaky gut" scenario independent of celiac damage. This is likely why your iron stores deplete so rapidly—your body is both unable to absorb it efficiently and may be losing it through inflammation. While the functional medicine path is expensive, it's clearly providing answers and relief that traditional gastroenterology, focused solely on the gluten-free diet and biopsy results, is missing. To move forward, continue the gut-healing protocols your functional doctor recommends (perhaps exploring alternative options to glutamine that won't irritate your cystitis), maintain your strict avoidance of all allergens and irritants, and know that true healing is a multi-faceted process. You might seek a second opinion from a different gastroenterologist who is more knowledgeable about non-responsive celiac disease and the complex interplay of food allergies and micronutrient absorption, but your current path, while costly, seems to be leading you toward the steady health you need.
    • knitty kitty
      Blood results

      By knitty kitty · Posted

      Have you had a DNA test to look for Celiac disease genes?  If she doesn't have any celiac specific genes, look for another explanation.  If she does have Celiac genes, assume they are turned on and active Celiac disease is progressing.  All first degree relatives (mother, father, siblings, children) should be genetically tested as well.   Sometimes blood tests are ambiguous or false negatives if one has anemia, diabetes or thiamine deficiency.  Certain medications like antihistamines and steroids can suppress the immune system and result in false negatives or ambiguous results on antibody tests.  
    • Heatherisle
      Blood results

      By Heatherisle · Posted

      That was just the visual report, so need to wait for confirmation or otherwise from the results. They did take a biopsy from the upper end of the duodenum(D1). D2 looked unremarkable on the camera. Just wish we didn’t have to wait so long for the results as she’s naturally a very anxious person. But thanks so much for taking the time to answer me
×
×
  • Create New...