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

Return To Normal = Celiac?

Thea-Bug

Recommended Posts

Thea-Bug Newbie
Thea-Bug
Posted

Hi all,

Long time lurker, first post here :) I'm confused about my results & haven't heard back from my GI, who's usually slow about getting back - I just have a copy of the lab results in the mail. My TTG IGA was very high several months ago. I then went gluten-free. I didn't do the biopsy because I was undergoing another surgery at the time and decided not to (I realize the time has passed now that I'm gluten-free). I have been gluten-free now for a while. I had a repeat blood test last week and the TTG IGA is now completely normal (under 1 in fact!).

At my follow up, before the GI drew the blood, she said that my positive response to the gluten free diet, plus the TTG IGA, may indicate celiac. She said that the follow up blood test would confirm celiac for sure.

My question is this: does this make sense that the follow up blood test would confirm? I get that the false negative rate for the TTG IGA is very low, and is only for a few other conditions like autoimmune stuff and liver failure. So does the fact that it went down to practically zero over the course of several months mean for sure that it's celiac? That would make sense to me, because if it was something else in the first place (e.g. liver failure), a gluten-free diet shouldn't affect that number. But of course, then there's the fact that the biopsy is supposed to be the gold standard. So I guess that's where I'm confused. Isn't TTG IGA a measurement of ACTUAL REPAIR GOING ON TO THE INTESTINES in the first place? Right? Isn't that the body's immune response to damage in the intestines? Or do I have that wrong?

So confused right now! ;)

Thanks in advance!

Thea

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

Celiac.com Sponsor (A8-M):


pain*in*my*gut Apprentice
pain*in*my*gut
Posted

Hi all,

Long time lurker, first post here :) I'm confused about my results & haven't heard back from my GI, who's usually slow about getting back - I just have a copy of the lab results in the mail. My TTG IGA was very high several months ago. I then went gluten-free. I didn't do the biopsy because I was undergoing another surgery at the time and decided not to (I realize the time has passed now that I'm gluten-free). I have been gluten-free now for a while. I had a repeat blood test last week and the TTG IGA is now completely normal (under 1 in fact!).

At my follow up, before the GI drew the blood, she said that my positive response to the gluten free diet, plus the TTG IGA, may indicate celiac. She said that the follow up blood test would confirm celiac for sure.

My question is this: does this make sense that the follow up blood test would confirm? I get that the false negative rate for the TTG IGA is very low, and is only for a few other conditions like autoimmune stuff and liver failure. So does the fact that it went down to practically zero over the course of several months mean for sure that it's celiac? That would make sense to me, because if it was something else in the first place (e.g. liver failure), a gluten-free diet shouldn't affect that number. But of course, then there's the fact that the biopsy is supposed to be the gold standard. So I guess that's where I'm confused. Isn't TTG IGA a measurement of ACTUAL REPAIR GOING ON TO THE INTESTINES in the first place? Right? Isn't that the body's immune response to damage in the intestines? Or do I have that wrong?

So confused right now! ;)

Thanks in advance!

Thea

The tTG test is the antibody that indicates that your body is making toxic molecules from gluten that damage your villi. It is a measure of the how badly your body is DAMAGING your intestines. So, the fact that it has returned to normal after a gluten free diet is a pretty good indicator that you have Celiac. If it was elevated because of another issue (Crohn's disease, liver disease, etc.) then it would not have gone down.

I would say you don't need a biopsy for a dx. I think the blood work and your response to gluten-free diet are good enough. If it's really important to you to have positive biopsy results, then you will have to go on a gluten challenge for 3 months and torture yourself for a confirmation , but even then the "Gold Standard" biopsy can be falsly negative.

My 2 cents.....in lieu of a biopsy, why not see if the GI doc can order genetic tests to see if you have the genes for Celiac? If you are negative for the genes, it is impossible for you to have it. But if you are positive for the genes, then it's one more piece to the puzzle and the "nail in the coffin", given all the other evidence.

Welcome to the group! Sorry you are here, but glad you are here! :D

ravenwoodglass Mentor
ravenwoodglass
Posted

Yes if your blood test was positive and you got relief on the diet and then after that those numbers went down to normal levels you are one of us.

Personally I wouldn't use gene testing as a for sure one way or the other that you are celiac. There is much that we don't know yet about genes and there are many more celiac associated genes than are usually tested for.

Consider yourself diagnosed and keep up the good work with the diet.

Thea-Bug Newbie
Thea-Bug
Posted
  • Author

Thanks guys!

I also forgot to ask earlier: could my situation just be gluten sensitivity (I realize the distinction doesn't really matter but I just want to know)? I've read conflicting things on this board - some say TTG IGA only shows up with celiac (if it's showing up related to gluten issues - that is, excluding the other reasons a TTG IGA test could be positive), and others say TTG IGA shows up with celiac AND gluten sensitivity.... ???

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks guys!

I also forgot to ask earlier: could my situation just be gluten sensitivity (I realize the distinction doesn't really matter but I just want to know)? I've read conflicting things on this board - some say TTG IGA only shows up with celiac (if it's showing up related to gluten issues - that is, excluding the other reasons a TTG IGA test could be positive), and others say TTG IGA shows up with celiac AND gluten sensitivity.... ???

Whether it is celiac or "just" gluten sensitivity really doesn't matter. Just as much damage is done with each and the need to be strictly gluten free is the same no matter what label you put on it. It is a misconception IMHO that gluten sensitivity is less serious.

Thea-Bug Newbie
Thea-Bug
Posted
  • Author

Yes--just curious if TTG returning to normal was ONLY a sign of celiac, because even though I realize that gluten sensitivity and celiac really aren't different in terms of the treatment, I wonder with how to approach getting my kids tested.

Does anyone know if levels returning to normal always means celiac (as opposed to gluten sensitivity)? I've heard conflicting things.

THanks!

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. 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!!
    2. 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 ...
    3. 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...
    4. 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...
    5. Scott Adams
      - Scott Adams replied to ElenaM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      I think I am gluten intolerant

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


  • Member Statistics

    • Total Members
      131,906
    • Most Online (within 30 mins)
      7,748
    Dakota4
    Newest Member
    Dakota4
    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

    • 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.