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

Biopsy Negative...crying


Stellar003

Recommended Posts

IrishHeart Veteran

IBS isn't really a diagnosis it is a symptom. Since testing has so many false negatives it is a good idea for anyone with IBS symptoms to give the diet a good strict try after all celiac testing is done. Many of us that suffered undiagnosed for years were told constantly that we had IBS when what we really had was celiac or gluten intolerance. Sometimes the body can give us the answer that testing can not.

Ditto for me! IBS is a "broad term" applied to a syndrome--a collection of symptoms...irritable bowel---yes, it IS VERY IRRITABLE, doctor!! It's pissed off---but WHY??? :angry:

Listen to your body. Gluten wreaks havoc. If you feel better off it, you've got a gluten issue.

Tests are wrong all the time, unfortunately. Go with your gut (pun intended :)


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



Celiac.com Sponsor (A8-M):



cahill Collaborator

Go with your gut (pun intended :)

:D I love this , it made me smile :D

IrishHeart Veteran

I had a NEG blood test back in 2010 and I had been gluten-free for 4 weeks at the time, thinking it was a good idea. I had been VERY ILL for 2 years and felt Gluten was a real problem. My stupid doctor said it wouldn't affect the test :unsure: I believed him :unsure: and continued to eat gluten for ANOTHER year as I slowly dwindled down to nothing. A gastro doc scoped me back in '09, but failed to biopsy :angry: I just kept losing weight, my brain function and ability to drive, etc....Only my PC doc was able to confirm my diagnosis.

I wouldn't eat gluten again for a test , but that's just me. I never want to be as deathly ill as I was again.

IrishHeart Veteran

:D I love this , it made me smile :D

:D good! :D

mushroom Proficient

Just had a horrible nightmare!!! What if we needed a doctor's prescription for gluten free foods??:unsure::blink:

zus888 Contributor

After the suggestion from Zu888 I have read the book Healthier Without Wheat and it really has confirmed in my mind I am not Celiac Disease but I do have non-celiac gluten intolerance.

As per the book it states

"Gliadin is a type of gluten. When the immune system attacks gluten, it produces gliadin antitbodies. If you have gliadin antibodies, then it is apparent that your immune system has interpreted that gluten is not food; it is a foreign invader that must be eliminated from the body. It attacks any gluten you eat. If either your IgA or IgG gliadin antibody test is positive, then you have a strong immune reaction to gluten and thus a gluten intolerance".

Basically the only different between the Celiac Disease and non-celiac gluten intolerance, is that in Celiac Disease you have Villous atrophy (damage of villi in the stomach), while symptoms & treatment are exactly the same for both.

I too was so confused but now I'm positive that I have non-celiac gluten intolerance and will live a gluten free lifestyle for life.

Hope this helps, the book is definitely a great read and really puts everything into content

I'm so glad you liked it, and it helped you as much as it helped me! :) It really made sense to me and helped me be at ease with my inconclusive bloodwork, and made me think about the connection of this gluten thing to all my other autoimmune diseases.

I'm not sure where you can get the book - I'm assuming (Company Name Removed - They Spammed This Forum and are Banned). My brother gave it to me as a gift (I think from amazon).

eatlovehope Rookie

I'm so glad you liked it, and it helped you as much as it helped me! :) It really made sense to me and helped me be at ease with my inconclusive bloodwork, and made me think about the connection of this gluten thing to all my other autoimmune diseases.

I'm not sure where you can get the book - I'm assuming (Company Name Removed - They Spammed This Forum and are Banned). My brother gave it to me as a gift (I think from amazon).

Thanks Suzanne

I live in Australia. I found it on a online bookstore called fishpond in Australia. I'm sure they ship internationally...

I actually feel like taking the book to my own doctor so she can read the research, as it was pretty obvious she knew very little about it...She just said no you don't have Celiac, and left it like that....

Thanks again for the recommendation...


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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Lkg5 replied to Amyinwyoming's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Sprouts packaged roasted, salted nuts - says "made in a facility that processes wheat" - has anyone had a problem?

    2. - Scott Adams replied to Whyz's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Test

    3. - Scott Adams replied to Kwinkle's topic in Coping with Celiac Disease
      1

      I’m so confused…

    4. - Scott Adams replied to RobHicks's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Weak stomach digestion after undiagnosed celiacs

    5. - Kwinkle posted a topic in Coping with Celiac Disease
      1

      I’m so confused…


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,263
    • Most Online (within 30 mins)
      7,748

    Vanessa W
    Newest Member
    Vanessa W
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Lkg5
      I never buy any nuts from a facility that processes wheat.  It’s not worth the risk.  Surprisingly, Trader Joe’s nuts do not come a factory that processes wheat, and I do not react to them.  I am sensitive to gluten.
    • Scott Adams
      If all testing is now completed you may want to let your doctor know that you are starting a gluten-free diet. If you symptoms go away on the diet it is further confirmation that you may have celiac disease, and/or non-celiac gluten sensitivity.  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.    
    • Scott Adams
      As long as the B Comlex is gluten-free, it should be helpful to you, especially since you're recently diagnosed and your villi are in the recovery process. You may need to look at further supplements as well, and it's a good idea for your doctor to check levels for many nutrients to see what deficiencies you might have. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.    
    • Scott Adams
      How long ago were you diagnosed? There are many symptoms and issues for those who are newly diagnosed, and recovery can take a while. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Kwinkle
      As I mentioned before I’m pretty new to this. I’m about a month into being completely gluten-free. But I’m still having issues with fatigue, loss of appetite, and gas pain. I’ve started taking the B complex, and was hopeful, but that would help me get past especially the fatigue and the loss of appetite. But now I just read a more recent post where somebody is saying that the B complex is not necessarily good for us?  I was very comfortable with the B complex because our bodies shed excess B vitamins. But now I just looked it up and B vitamins can cause gas and bloating.  As I mentioned, that’s one of my biggest symptoms, and I also think it’s directly connected to my loss of appetite, which, of course is connected to my fatigue.  I’m so confused I don’t really know what to do now?
×
×
  • Create New...