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
IrishHeart
Posted

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
cahill
Posted

Go with your gut (pun intended :)

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

IrishHeart Veteran
IrishHeart
Posted

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
IrishHeart
Posted

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

:D good! :D

mushroom Proficient
mushroom
Posted

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

zus888 Contributor
zus888
Posted

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
eatlovehope
Posted

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.

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


  • Member Statistics

    • Total Members
      131,912
    • Most Online (within 30 mins)
      7,748
    westman3d
    Newest Member
    westman3d
    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

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.