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

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. - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

    2. - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

    3. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

    4. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

    5. - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,871
    • Most Online (within 30 mins)
      7,748

    GR82BNTX
    Newest Member
    GR82BNTX
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Colleen H
      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
×
×
  • 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.