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

Please Help


I Love Food

Recommended Posts

I Love Food Newbie

Please help. been suffering for years.

 

Got a copy of my lab reports from 2008

 

AGA IGA positive 12.6 reference < 12.0 U/ML

AGA IGG positive 21.6 reference < 12.0 U/ML

TTG (endomysial) negative 1.3 reference < 10.0 U/ML

 

Biopsy was negative. Seems like there were only 2 samples taken. 

 

Symptoms started out as mostly GI (diahrea, every single day, bloating, have to run to washroom and would have shaking and cold sweats).

 

I've also had the tiny itchy liquid filled blisters on my hands - but they only appear (or at least in great number and extremely itchy) in August/September.

 

Went gluten and dairy free this past November for 30 days. felt amazing. Starting eating normal again by Christmas time.

 

New symptoms within the last 8 months - sinus pain daily, sore throat daily, joint pain (wrists, knees ankles) EXTREME fatigue (likes it's a real struggle to make it through work) I could sleep all he time, brain fog (almost like split second blackouts, like I forget for a second where I am or what I wanted to do) forgetfull, easily irritated especially with banging noises, a spot on my face next to my right ear went numb one afternoon (I could dig my fingernail in and feel nothing) trouble loosing weight despite eating well, heartburn


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Welcome! Time to get retested by a celiac-savvy GI! Here are the tests (actually any medical doctor can order a complete celiac panel which is critical in your case since your old TTG results were negative and the old AGA tests were used). I tested positive to only the DGP IGA and my TTG tests were negative yet biopsies revealed moderate to severe damage (many sample were taken).

I Love Food Newbie

Thanks so much for your reply. so AGA aren't used anymore? What is the complete celiac panel? 

cyclinglady Grand Master

Oops! Sorry! Here is the list of celiac disease tests:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

I meant to say that my TTG rests were negative but the DGP IGA test was positive. My biopsies revealed severe damage. Sounds like your GI did not take enough samples as damage can be patchy and the small intestine is the size of a tennis court -- seriously!

Keep eating gluten until all testing is complete!

Welcome to the forum and let us know how it goes!

Archived

This topic is now archived and is closed to further replies.

  • 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. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

    3. - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    4. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    5. - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,469
    • Most Online (within 30 mins)
      7,748

    Jcarder
    Newest Member
    Jcarder
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • 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.