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  • Recent Activity

    1. - trents replied to Kipman's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Indeterminate transglutaminase iga

    2. - nanny marley replied to SoBannaz's topic in Coping with Celiac Disease
      4

      Family that thinks “it’s all in your head.”

    3. - nanny marley replied to Jsingh's topic in Coping with Celiac Disease
      3

      Contaminated cooking oils

    4. - nanny marley replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Is it gluten?

    5. - Kipman posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Indeterminate transglutaminase iga


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  • Posts

    • Scott Adams
      Welcome to the forum @Mantooth, your symptoms are very common in people with undiagnosed celiac disease (I had most of your symptoms as well), and this article talks about the various symptoms of celiac disease:  When you were tested in the past for celiac disease were you on a gluten-free diet? In order to properly test anyone for celiac disease you need to be eating lost of gluten everyday for 6-8 weeks before being screened, otherwise your results could be false negative. Feel free to share your old blood test results if you have them. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • trents
      Welcome to the forum, @Kipman! When you say your Iga is low I assume you are referring to total IGA. Can you confirm this? If so, the antibody test score for the transglutaminase iga (what we generally refer to as tTG-IGA) test score cannot be trusted. Low total IGA (i.e., being "IGA deficient) will drive down the scores in the tTG-IGA test and can cause false negatives. Ask your physician to run a more complete celiac antibody panel which would include the DGP-IGA test as well as the DGP-IGG and TTG-IGG tests as well as the total IGA and the tTG-IGA. You must not be engaging in the gluten free diet until all testing is completed, both the serum antibody testing and the endoscopy/biopsy, if the phyiscian should refer you for a GI doc consult who may want to do that procedure. Being on a gluten free diet or a reduced gluten diet will sabotage any testing. Here is an article presenting an overview of the various tests that can be run when checking for celiac disease: From the above article:  IgA Levels/Deficiency Blood Test This should always be included in any blood panel for celiac disease, but it does not test directly for celiac disease, and is done to determine the accuracy of the other blood tests. People who are IgA deficient may score lower, of have no measurable levels on certain celiac disease blood tests. This test measures the levels of Immunoglobulin A (IgA) in the bloodstream. IgA is an important antibody that plays a significant role in the immune system, particularly in protecting the body's mucosal surfaces (e.g., respiratory and digestive tracts). Low IgA levels can indicate IgA deficiency, a condition where the body does not produce enough IgA, leading to an increased risk of infections and other health issues. The IgA Levels/Deficiency Test helps healthcare providers diagnose and monitor IgA-related conditions. Other Names for the IgA Levels/Deficiency Test: Immunoglobulin A (IgA) Test Total IgA Test Serum IgA Test IgA Serum Levels Test IgA Blood Test IgA Quantitative Test IgA Antibody Test IgA Immunodeficiency Test
    • nanny marley
      Oh yes same here I've been called a weirdo and health aniexty nut even at first my own daughter's were making fun of me but now they have seen the results there's too doing the gluten and lactose free has they both now older have realised they have problems too and threw me ranting on and changing it's helped them to stop suffering early so you keep doing what your doing a true friend will always understand you and help you I couldn't dream of making someone eat something they can't my granddaughter has a bit allergy imagine he saying it's just a nut build your immunity people can be so self centred wen it comes to compromise around food your not crazy your a human being with a different need hold your head up for all the ones in the same boat and you look after yourself regardless of wat anyone says or thinks  a good saying I like the rainbow has many different colours that's why it's so beautiful so shine your colour 🤗
    • nanny marley
      Could you not try to cut oil out and use a alternative method ? Is there really any health benefits for oil ? If it has caused do much did discomfort for your little one I'd be inclined to source a different way my granddaughter has a nut allergy it's been a roller coaster ride but we cut whatever was causing issues out and found a alternative and she's been fine 🤗
    • nanny marley
      I too have blood tests booked a Wilson and was told it's ok that I've been gluten free since for over 6 months they have also put  me in for a fecal test for calprotein and a milk allergy has I had to  stop lactose too and a IBS blood test I didn't even know you could test for IBS ? I'm going Tuesday but since reading on here I'm thinking now why bother I've been suffering for that long has I can remember I've reached out to docters since I was in my 20s im now Immy 50s was told IBS and health aniexty was my problem what prompted me to go back again this time was the long list of problems I've also had which they also know about but never said any were connected I've had bad bouts that put me in bed for days I cut carbs out years ago and saw a difference but uneducated just thout see it must be a better way of eating didn't realise it was actually showing me to cut gluten out I've been back and forth to docters that much they have put me down has I have health aniexty causing it in a nut shell it's in my head yet over the years I've had sickness medication scans over my kidneys my liver my tummy for the pain flu like symptoms were put down to my bad rhinitis hair shredding was put down to stress vitamin d deficiency put down to food my 3 herniated discs degenerative and slight sclorocis believe it or not was my posture achy legs syndrome and bad blood circulation to my low mobility threw my back I can go on and on what they tryed to tell me I got that bad i realised it's maybe more than IBS and yes I do suffer aniexty but the way they have made me feel like it's all in my head is time to stop because cutting out gluten and lactose had been the best thing I have done I only went back because I was a little worried after struggling for so long if I had damaged my bowel i just hoped I would get help threw tests sorry for long post but you are not alone with the worry of the test results but if you know yourself then you be your docter and help yourself too but always push for help if   you have abdominal pain it could be other things too it took me 15 years to get a MRI for my back you can imagine my thouts Wen I got my results that it wasn't just my posture had I'd been told even unable to walk was my fault lol  so if you are struggling seek out help anyway you can and be consistent till you get answers 🤗
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