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 Deamidated Gliadin Test Was Only Positive Test For Celiac

mamacat

Recommended Posts

mamacat Rookie
mamacat
Posted

I just wanted to share my story in case someone else is searching for more information on testing for celiac. I had terrible joint pain, stomach issues, fatigue, and other symptoms, which led me to get tested by my dr. The celiac panel was from Quest Diagnostics and included the Total IGA, ttG, and Deamidated Gliadin IGA tests. Of these, I was ONLY positive for the Deamidated Gliadin IGA test!

My results:

TISSUE TRANSGLUTAMINASE ANTIBODY, IGA = 3 (Ref <5=Neg) U/mL

IMMUNOGLOBULIN A =238 (Ref 81-463 mg/dL)

GLIADIN (DEAMIDATED) AB (IGA) =>100 (Ref >20=Pos) Units

This led two doctors to believe I didn't have Celiac because I was negative for ttG, which they claim is the old trusty test. I went to Jefferson Hospital in Philly that has a Celiac Center, and they were smart enough to do upper endoscopy. The biopsy showed I was POSITIVE for Celiac!!!! Just got diagnosed last week and starting gluten-free diet. Hope to feel better soon! I think the Deamidated test is far more sensitive at detecting Celiac, since it shows the antibodies themselves. I was more than five times the normal positive limit, which should've tipped off the first doctors I saw.

Just want to share with people that you have to be your own advocate. Don't let doctors brush you off. One dr. I saw didn't even realize the deamidated gliadin test is a newer, more reliable version than the old gliadin tests, so there is a LOT of mis-information out there. If you suspect Celiac, don't give up with testing and good luck!

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

Celiac.com Sponsor (A8-M):


Cara in Boston Enthusiast
Cara in Boston
Posted

Thanks for sharing and welcome to the group.

You are so lucky you live near a celiac center. My brother in Boise has been told numerous times he doesn't have an issue with gluten since he doesn't have a positive TTG test and no GI symptoms. They'd rather spend thousands of dollars doing MRIs on his brain to find out why he has dizzy spells and numbness in his fingers (and a whole host of other symptoms that I also had until going gluten free.)

Boston has both an adult celiac center (Beth Israel) and a children's celiac center (Children's Hospital Boston) and I am so thankful. They were able to diagnose my son even though he also had conflicting blood test results. Other doctors gave up, but they continued looking and found damage on the biopsy. If I had accepted the diagnosis of the first doctor (at another well respected Boston hospital) my son would still be eating gluten and would be a very, very sick little boy. (This was the doctor that said I had "read too many magazine articles . . ." when I kept pressing him for actual answers about the weird blood tests.)

Cara

mamacat Rookie
mamacat
Posted
  • Author

Boston has both an adult celiac center (Beth Israel) and a children's celiac center (Children's Hospital Boston) and I am so thankful. They were able to diagnose my son even though he also had conflicting blood test results. Other doctors gave up, but they continued looking and found damage on the biopsy. If I had accepted the diagnosis of the first doctor (at another well respected Boston hospital) my son would still be eating gluten and would be a very, very sick little boy. (This was the doctor that said I had "read too many magazine articles . . ." when I kept pressing him for actual answers about the weird blood tests.)

Hi Cara,

I totally hear you! The best doctors I've had had always been willing to listen and HEAR my concerns, and work with me on finding the right diagnosis. I think some doctors just don't realize their role should be as a partner in managing your health. Instead, some have a "god-complex" who treat their patients as uneducated minions who should just silently accept whatever they dish out, even if their knowledge is outdated. Very sad, especially when the average time frame to diagnose Celiac is 11 years! I wonder how many people who had to wait a decade for a DX had mixed test results and were told by their dr. that no follow-up was needed...

Glad to hear you were near a good center for your family too and tell your brother not to give up. There is a dr out there who will listen to him somewhere- you just have to keep looking!

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

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    2. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      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!!
    3. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

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

      My only proof

      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...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

      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...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • 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.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  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.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.