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. - Anne G posted a topic in Related Issues & Disorders
      0

      celiac disease and braces

    2. - trents replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    3. - HAUS posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    4. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

    5. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,434
    • Most Online (within 30 mins)
      7,748

    Malia Ana
    Newest Member
    Malia Ana
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Anne G
      Hello, My 17 yr old daughter was diagnosed with celiac disease 2 yrs ago. She does not have gum disease and no history of cavities. Her dentist is recommending braces for her lower teeth but I read it may worsen gum recession or possibly increase cavity risk which I know are already issues for patients with celiac. Has anyone here had braces and did it cause any problems or issues with gum recession?  Her dentist seemed oblivious that celiac patients are at higher risk of gum disease /cavities. Her bottom teeth are crooked but are pretty hidden even when she smiles. Thank you!!
    • trents
      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    • HAUS
      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
×
×
  • 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.