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

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

  • 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. Flash1970
      - Flash1970 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

      You might try Heallix. It's a silver solution with fulvic acid. I just put the solution on with a cotton ball. It seemed to stop the nerve pain. Again, not in your eyes or ears. Go to heallix.com to read more about it and decide for yourself Also, I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out...
    2. trents
      - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being...
    3. Roses8721
      - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    4. Ginger38
      - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress ...
    5. Scott Adams
      - Scott Adams replied to Silk tha Shocker's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Help

      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. ...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,480
    • Most Online (within 30 mins)
      7,748
    Randi44
    Newest Member
    Randi44
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Flash1970
      Shingles - Could It Be Related to Gluten/ Celiac

      By Flash1970 · Posted

      You might try Heallix.  It's a silver solution with fulvic acid. I just put the solution on with a cotton ball.  It seemed to stop the nerve pain. Again,  not in your eyes or ears.   Go to heallix.com to read more about it and decide for yourself Also,  I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out. 
    • trents
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
    • Roses8721
      GI DX celiac despite neg serology and no biopsy

      By Roses8721 · Posted

      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
    • Scott Adams
      Help

      By Scott Adams · Posted

      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
×
×
  • 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.