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

Negative Ttg And Neg Biospy


Gfresh404

Recommended Posts

Gfresh404 Enthusiast

At my first year at college I got really sick to the point where I lost 35 pounds (I was already pretty skinny) and could not eat. I had all these tests run and everything came back normal. I even had the tTG test and a small duodenal biopsy: both of which came back negative. So I started messing around with my diet and removed milk, noticed have my symptoms went away - It is not the lactose that bothers me, I believe it is the casein. Continued messing around with my diet and noticed even far greater improvements with the removal of gluten. When I do accidentally consume gluten I get all bloated and depressed and feel sick for a couple of days. I also have intense cravings for all foods cannot stop eating until I am completely full. It's a strange feeling. - Only occurs with consumption of gluten.

Could I still have Celiac? Or do you guys just think it's a gluten sensitivity or intolerance. Any input is greatly appreciated. Thank you.


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



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast

Welcome to the group!

How much gluten were you eating when you were tested? For a lot of people, it only takes a few weeks on a gluten-free diet for tests to come back negative.

Also... do you know if they tested your total IgA? It that's too low, you could be half-dead and your blood test would still come back negative. Endoscopies are notoriously unreliable, especially if they don't take enough biopsies (damage can be patchy). Plus it seems like a lot of doctors are unwilling to diagnose someone with celiac disease unless the damage is REALLY obvious.

That being said... no matter what part of your body is being affected, gluten intolerance is no joke. If you feel better being off gluten and casein, stick with it! You certainly don't them to be healthy.

rinne Apprentice
.....When I do accidentally consume gluten I get all bloated and depressed and feel sick for a couple of days. I also have intense cravings for all foods cannot stop eating until I am completely full. It's a strange feeling. - Only occurs with consumption of gluten.

Could I still have Celiac? Or do you guys just think it's a gluten sensitivity or intolerance. Any input is greatly appreciated. Thank you.

Hi. :)

If you have some time, check out the signatures of some of the regular posters, you will see years of ill health, various illnesses diagnosed, fibro, diabetes, arthritis, depression.....long list and then you will see Celiac. The testing is notoriously inaccurate.

It may or not be Celiac but for sure your digestion is struggling and when we don't digest our food properly it leads to many other problems. It is really important.

The "intense cravings...." I know that so well, I described it recently as feeling like the part of my brain that knows I am full just shuts off and I am a food monster. I haven't had that happen in nearly three years since I went gluten free.

What is your health history like? Did this begin after taking anti-biotics?

ravenwoodglass Mentor
Hi. :)

If you have some time, check out the signatures of some of the regular posters, you will see years of ill health, various illnesses diagnosed, fibro, diabetes, arthritis, depression.....long list and then you will see Celiac. The testing is notoriously inaccurate.

I'm one of the ones she is referring to. The NIH estimates that 30% of us will show up negative on blood tests and biopsies are really hit and miss if the damage is patchy. There are also changes that precede full vilii destruction that are often not recognized as being from gluten. Doctors seem very reluctant to diagnose celiac until the villi are totally destroyed.

Gfresh404 Enthusiast
Welcome to the group!

How much gluten were you eating when you were tested? For a lot of people, it only takes a few weeks on a gluten-free diet for tests to come back negative.

Also... do you know if they tested your total IgA? It that's too low, you could be half-dead and your blood test would still come back negative. Endoscopies are notoriously unreliable, especially if they don't take enough biopsies (damage can be patchy). Plus it seems like a lot of doctors are unwilling to diagnose someone with celiac disease unless the damage is REALLY obvious.

That being said... no matter what part of your body is being affected, gluten intolerance is no joke. If you feel better being off gluten and casein, stick with it! You certainly don't them to be healthy.

I don't remember starting the gluten-free diet until well after the biopsy but I do remember that during the blood tests I was barely eating.

I do believe they tested total IgA but I will double check on that.

Gfresh404 Enthusiast
Hi. :)

If you have some time, check out the signatures of some of the regular posters, you will see years of ill health, various illnesses diagnosed, fibro, diabetes, arthritis, depression.....long list and then you will see Celiac. The testing is notoriously inaccurate.

It may or not be Celiac but for sure your digestion is struggling and when we don't digest our food properly it leads to many other problems. It is really important.

The "intense cravings...." I know that so well, I described it recently as feeling like the part of my brain that knows I am full just shuts off and I am a food monster. I haven't had that happen in nearly three years since I went gluten free.

What is your health history like? Did this begin after taking anti-biotics?

It began after eating a big meal, I mean a big big meal, at least for me and then I had a bout of gastritis and I took some anti-nausea med, but never any anti biotics.

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. - Rogol72 replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    2. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    3. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    5. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,911
    • Most Online (within 30 mins)
      7,748

    Cici123
    Newest Member
    Cici123
    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
      @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
      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
      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
      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
      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.