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

Help Me!

JessicaB

By JessicaB
in Coping with Celiac Disease

Recommended Posts

JessicaB Explorer
JessicaB
Posted

WELL... I HAVENT BEEN ON HERE SINCE JAN... I HAD POSITIVE BLOODWORK, THE DOC SENT ME FOR A ENDOSCOPY AND I WAS TOLD IT WAS NEG. SO I THOUGHT YEAH I DONT HAVE CELIAC. WELL I WENT BACK FOR A FOLLOW UP, STILL IN PAIN. THE DOC SAID I DEF HAVE CELIAC SINCE MY BLOODWK SHOWED IT, HE WANTS ME TO GET A ENTROSCOPY AND MORE BIOPSYS, UNTIL IT SHOWS POS. ANYONE HAVE EXPERIENCE? WHAT DO YOU THINK? IM GOING TO GEORGE MASON UNIVERSITY HOSPITAL TOMORROW....... HELP IM ABOUT TO GO TO BED AND NEED SOME ADVICE,

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

Celiac.com Sponsor (A8-M):


Guest Robbin
Guest Robbin
Posted

Wow, I think they are giving you the run-around. I am fairly new here, but positive bloodwork is POSITIVE. I don't understand putting you through another biopsy. You probably had some healing or they just didn't take enough samples. I personally would not go through it and would stay off gluten. Positive bloodwork and positive dietary response is enough for most drs. Heck, positive dietary response is enough for a lot of people here, myself included. Maybe someone with more expertise will post here, but I would also check out what Dr. Fine says on the enterolab site--www.enterolab.com (not linked, you have to do a search-I am not too skilled at the computer) Look under FAQ Result interpretation. Even though you didn't have the blood work done by him, he explains a lot in that FAQ section and you will have a clearer picture of what you are dealing with than what I could tell you in a post. Take care & God bless. :)

Guest Viola
Guest Viola
Posted

Jessica, I don't think there has ever been a false positive in blood work. Which means if your blood was positive you have Celiac Disease. From what I've read they are actually talking about doing away with the biopsy eventually, as the blood work is so reliable.

Guest nini
Guest nini
Posted

If you have positive bloodwork, you absolutely HAVE celiac. you do not need any more biopsies as they can ONLY confirm it, never ever completely rule it out.

I was dx'ed by positive bloodwork only. I never had a biopsy and never will. Your Dr. is giving you the run around. You DO NOT need your Dr.s permission to go on this diet and you ABSOLUTELY have celiac! (can I emphasise that enough?)

Go gluten free immedieately and forgo any more testing, you don't need it.

jerseyangel Proficient
jerseyangel
Posted

Yes, I believe that with your positive bloodwork, you are Celiac. Why put yourself through any more testing? The best thing for you would be to make sure you're 100% gluten-free--checking everything you eat or use on your body. I hope you begin to feel better soon :)

zip2play Apprentice
zip2play
Posted

Why is more testing necessary? I say, stick with a gluten free diet!

Monica

tiffjake Enthusiast
tiffjake
Posted
Why is more testing necessary? I say, stick with a gluten free diet!

Monica

Ditto!

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,061
    • Most Online (within 30 mins)
      7,748
    420jen
    Newest Member
    420jen
    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...