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

Antibody Testing


guy220d

Recommended Posts

guy220d Rookie

I have a speculation and I would like some feedback. I know that the average celiac sufferer has been presenting symptoms to doctors for around 9-10 years before finally receiving a diagnosis of celiac disease. I'm guessing such a patient would have extensive damage and elevated endomysial and transglutaminase antibody levels, as well as the antibodies to gliadin. But let's say someone caught celiac symptoms early on, within a couple months (instead of 9-10 years) of the onset of symptoms. What would his/her antibodies look like? I'm guessing that the IgG and maybe the IgA anti-gliadin levels would be rising but he others would not have had time to develop.(?)


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



Celiac.com Sponsor (A8-M):



CMCM Rising Star
I have a speculation and I would like some feedback. I know that the average celiac sufferer has been presenting symptoms to doctors for around 9-10 years before finally receiving a diagnosis of celiac disease. I'm guessing such a patient would have extensive damage and elevated endomysial and transglutaminase antibody levels, as well as the antibodies to gliadin. But let's say someone caught celiac symptoms early on, within a couple months (instead of 9-10 years) of the onset of symptoms. What would his/her antibodies look like? I'm guessing that the IgG and maybe the IgA anti-gliadin levels would be rising but he others would not have had time to develop.(?)

It's probably hard to say because each person is different. Using myself as an example, I'm 56 and had certain symptoms as an infant (I couldn't tolerate milk). I don't remember problems in my teens, maybe not even in my 20's, but I always had a feeling I had problems with dairy....when the idea of lactose intolerance became a buzz word, I figured it was that. HOWEVER....since I was always eating gluten along with dairy, now I believe they were both acting on my system with a double whammy.

My mom is celiac, but I did not have the same symptoms AND I didn't fully understand the genetic link and neither did she, so I never thought of that. I remember I had lots of odd symptoms beginning in my 30's, continuing to this year. I got a celiac blood test in 2001 and it was negative. As symptoms increased, I really cut back on gluten and dairy (suspecting them both, but never really sure of which one was worse), and as of Nov. 25 I went gluten & casein free. In Jan. of this year I did the Enterolab stool test, which showed high antibody scores BUT...happily, it also showed no malabsorption despite 25+ years of symptoms. Enterolab said possibly because I have actually minimized my wheat eating for a year or two, the damage could have been worse before, and now was better. When I got tested I had eaten no wheat for 5 weeks, and minimal wheat for 6 months or more. Damage could have mostly healed even though I was still eating some gluten here and there. My point is that damage heals, probably quicker for some than others. And I have no way of knowing which of my 2 genes is operational (I have both a celiac gene and a gluten sensitivity gene). Enterolab doesn't think it matters; either way I shouldn't eat gluten, and either one can make you equally ill. Perhaps what I have going on hasn't turned into celiac...perhaps it never will. I can't know without a biopsy, which I don't intend to have. At least now I know my risks, I know how I feel eating and not eating gluten (and also dairy, in my case). Enterolab says gluten sensitivity can also damage the intestines in exactly the same way as diagnosed celiac disease does, but it doesn't lead to such overall systemic damage as does celiac...that's the main difference. And casein can also damage the intestines same as gluten if you are casein sensitive.

My mom had totally destroyed villi and she was dying of malnutrition at the point where she was diagnosed after at least 7 years of doctors telling her it was in her head. She had certain symptoms long before that, but it wasn't debilitating until a certain point when celiac was probably triggered by a surgery. After just 4 months on a gluten free diet she was healthy and had gained back her lost weight. About a year later doctors did another endoscopy/biopsy and her intestines looked normal, as they still would today as well since she never eats gluten and hasn't done so for nearly 40 years.

This is a long way to answer that if you caught things early, you certainly could show anywhere from low to high levels on your tests, but might have not yet incurred intestinal damage. The best thing is to catch it early and adjust your diet before you have damage or get some other autoimmune disease as well, or worse yet, show up with some sort of cancer (which is how some people find out about celiac disease! Remember that there is a segment of the population with "silent celiac", i.e. they would show antibodies but have no symptoms, yet the intestinal damage is being done. The unfortunate thing is that the blood test doesn't always catch it early enough. The stool test would, however. And the gene test is a useful bit of knowledge too, to know your chances in the whole picture.

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.