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

Confusing Test Results

Jenny0409

Recommended Posts

Jenny0409 Rookie
Jenny0409
Posted

A little background: I'm 29 and had my thyroid removed last fall due to advanced Graves Disease (Hyperthyroid). My thyroid was so big it was choking me. Anyway, shortly after surgery we realized my calcium wasn't regulating itself and I've since been on 3600 mg in pill form per day and on 500 mg of Magnesium per day. I have consistent muscle cramps and spasm and lots of bone pain that were thought to be a result of the calcium levels and I still believe that. However, my endocrinologist recently decided a Celiac Blood panel was in order. These are my results. He believes me to have Celiac Disease, has referred me to a Gastro and a dietician. I'm confused how I can have negative results on two of the three test and be thought to have Celiac. Any thoughts?

 

 

 

Immunoglobulin A, QN, Serum- 167 (Range is 91-414)

 

Deamidated Gliadin ABS, IGA- 8 (Range 0-19)

 

T-Transglutaminase (TTG) IGA- 16 (Range 0-3) High Positive

 

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

Celiac.com Sponsor (A8-M):


RMJ Mentor
RMJ
Posted

The first test you list is not for celiac disease. It is for your total IgA to see if it is normal. Yours is. (If it wasn't the other two tests you list for specific types of IgA would not be valid). As to the TTG and DGP tests, some people with celiac are positive on one, some on the other, some on both.

Jenny0409 Rookie
Jenny0409
Posted
  • Author

Oh ok, so he is likely correct to assume I could be Celiac. I'm very hesitant to go forward with a biopsy. I've been through a lot medically this past year. I won't go into detail but it's been difficult. I don't know if I could handle going through that if it isn't 100% necessary. Other than being the most definitive diagnostic tool for the disease are there any other benefits to going through the biopsy process? To be frank, I'm terrified not of the result but the procedure itself. I'm fine with living gluten free regardless of the biopsy results.

Maddi Community Regular
Maddi
Posted

Sorry to intrude, just wanted to tell you not to worry about the endoscopy/biopsy. I had one last year and I was also worried but it was easy peasy. It takes about 10 minutes and you're sedated. Then you're sent home! I understand your fears but think about now many endoscopies are performed everyday! Most older people have had them at least once and it's not really a big deal. Hope it goes well!

Jenny0409 Rookie
Jenny0409
Posted
  • Author

Thank you and you aren't intruding. I am actually declining the endoscopy for now. It's very expensive even with my insurance. It seems like it only serves as a confirmation and will tell me how extensive the damage, if any, correct? I'm not sure I want to know how much damage there is just yet. I was able to be given the diagnosis without that procedure so it kind of seems like a waste of money for me. To each their own, I just don't know that I can justify the expense of a test that is only confirmation of something my doctor is already confident I have. Plus, I read that sometimes people receive a negative result only to years later find out they do have celiac disease.

nvsmom Community Regular
nvsmom
Posted

...Thank you and you aren't intruding. I am actually declining the endoscopy for now. It's very expensive even with my insurance. It seems like it only . Plus, I read that sometimes people receive a negative result only to years later find out they do have celiac disease.

 

This does happen in a minority of cases. Up to 1 in 5 celiacs gets a negative biopsy.  You had a positive test, some symptoms, and an autoimmune disease that is strongly linked with celiac disease, so it is most likely celiac disease.  A positive test would just confirm, and a negative test would not disprove it, but only not support the celiac diagnosis.

 

Also, the specificity of a positive tTG igA is 95%, so only 5% of positive tests are caused by something other than celiac disease.  It's a pretty good test.

 

If you want confirmation, retest the DGP IgA and tTG IgA after 6-12 months gluten-free.  Chances are that they'll have dropped significantly.

 

Welcome to the board!  I hope you have a fast recovery.  :)

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

      Help I’m cross contaminating myself,

      @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...
    2. 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).
    3. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      3

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

      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 ...
    5. 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...
  • 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)

  • 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.