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Russ H

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by Russ H

  1. Russ H
    No, you can't do this. It has been tested extensively with lots of research. Coeliac disease is not an allergic type reaction where you can increase tolerance by gradually increasing exposure. The immune reaction in coeliac disease is more akin to fighting off a virus - every time the body is exposed to gluten, it boosts antibodies and T-cells and these are...
  2. Russ H
    Gluten-free beers can be risky. In the UK, any beverage with less than 20 ppm of gluten can be sold as 'gluten-free'. The 20 ppm level was chosen so that on a diverse diet, a person consuming a mixture of completely gluten-free food (such as meat, vegetables and dairy) and food containing gluten at less than 20 ppm will consume less than 10 mg of gluten a...
  3. Russ H
    As it is a low positive, certainly worth getting total IgA tested. They should also be able to test for deamidated gliadin peptide antibodies, which has various acronyms including DAGL, DMG and DGP.
  4. Russ H
    I wouldn't call it very odd as there is so much variation between people. See what happens with your IgA test and endoscopy A paper quoted in this review states: The celiac disease That Pays Dividends: More Than 15 Years of Deamidated Gliadin Peptide Antibodies So, it is certainly possible to have -ve tTG IgA with +ve DGP IgA and...
  5. Russ H
    Coeliac disease has a complicated and not completely understood immune process. On top of that, individuals respond very differently. One of the proteins within gluten called gliadin is resistant to digestive enzymes and is not completely broken down to short peptide chains for absorption. The remaining large fragments are quite immunogenic. If it gets...
  6. Russ H
    That is curious. In children, DGP can show before tTG antibodies. You are an adult and have been symptomatic for 7 years and yet have a borderline positive DGP but no tTG. If you are IgA deficient, you are not showing up on IgG so that would be perplexing. Interesting.
  7. Russ H
    BeckyH25, That is entirely your choice. I don't think the UK is particularly bad for endoscopy procedures. My mother had one with sedation and couldn't remember it afterwards. In my experience, worrying about a procedure is far worse than the procedure itself. The NHS has been cut to the bone - consultants do not offer procedures that are not medically...
  8. Russ H
    I am not suggesting that for NCGS. If someone does not have blunting of the villi and does not have antibodies indicative of coeliac, is it worth eliminating gluten to a level below that which avoids symptoms? Take IBS - in some cases it seems to be antagonised by gluten even if gluten is not the direct cause of the condition. If avoiding major sources of...
  9. Russ H
    I take it the later 2 tests are for deamidated gliadin peptide antibodies? If so, do you have the standard range for the positive one?
  10. Russ H
    Coeliac disease varies greatly in symptoms and severity between people. In fact most people do not realise that they have it. It is always worth treating with a gluten-free diet as symptoms can flare up at any time, and silent disease can still cause gut damage, food malabsorption, anaemia, osteoporosis and raised cancer risk among other things. I never had...
  11. Russ H
    Both tests you had done measure the amount of IgA anti-tTG2 antibodies you have in your blood. The tests use different processes: the standard IgA tTg test is more sensitive than the IgA EMA test. The reason that you tested positive only on the IgA tTG test could be because your levels are only moderately positive. There are other conditions that can...
  12. Russ H
    The key finding is that the concordance rate for non-identical twins is about 10% as against 75% for identical twins. Given the environmental commonality both prepartum and postpartum birth in both cases, this suggests that it is largely heritable. There is another more recent twin study from Sweden below. They estimate a concordance rate of 50% for...
  13. Russ H
    The NICE guidelines suggest testing for total IgA as well as IgA tTG. Might be worth referring this your GP to this if it hasn't been done. https://www.nice.org.uk/guidance/ng20/chapter/Recommendations#serological-testing-for-coeliac-disease Other tests that might be worth considering for home testing include IgA anti-DGP, IgG anti-DGP, and IgG...
  14. Russ H
    Did they also measure total IgA? A minority of people are deficient in IgA and so don't show up on the standard test. More tests are becoming available in the UK but unfortunately the NICE guidelines are very conservative regarding testing. There a few very knowledgeable people on the forum regarding NCGS who will be of help but most of them are on US...
  15. Russ H
    Hello, and welcome to the forum. Many of your symptoms are common with coeliac disease. Do you know what tests you had for coeliac disease and what the figures were?
  16. Russ H
    Health service labs in the UK will often run an endomysial antibody test on all positive anti-tTG2 tests. The whole thing is in a state of flux with developing knowledge and practices. The anti-tTG2 tests appear to be pretty much as reliable as endomysial tests as the technology has improved (human recombinant tTG ELISA). Since they both test for antibodies...
  17. Russ H
    Sources give varying figures. In young children, the half-life is a little less than 2 months: https://www.tandfonline.com/doi/abs/10.3109/00365513.2015.1124449 This study on older children in India indicated a fall of about 50% in IgA anti-tTG2 after about 6 months: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6482799/ In...
  18. Russ H
    That result is borderline positive. Serum antibodies decay with a half-life of 3-4 months. From your comment suggesting sporadic gluten consumption when eating out, it is not particularly surprising.
  19. Russ H
    I don't know for sure. Coeliac disease is a complicated immune disease that varies greatly between individuals. The gold standard is to ingest at least 2 slices of wheat bread daily for at least 6 weeks prior to blood testing. For endoscopy, 2 weeks is considered sufficient in some quarters. Antibodies are generated in the intestinal wall during the immune...
  20. Russ H
    Yes, that is another couple of pieces in the jigsaw. Vitamin D deficient, autoimmune thyroid antibodies - they are associated with coeliac disease. Of course, it may not be coeliac disease. I would urge any of my family or friends with what you have described to get down to the quack and get tested. In the worse case, it would eliminate a possible cause.
  21. Russ H
    I think it could be worth your getting tested. There are medical advantages to having a formal diagnosis. It is a blood test rather than a medical intervention, and it would be beneficial to know whether you do indeed have coeliac disease. Your GP would refer you for testing if you ask for it. The half life of coeliac antibodies is 3-4 months, so if you get...
  22. Russ H
    How long have you been gluten free? Have you noticed any change in your other symptoms while excluding gluten?
  23. Russ H
    Thanks for the heads up. What did you use for the gluten-free flour out of interest?
  24. Russ H
    Can you post your test results and lab standard ranges if you have them?
  25. Russ H
    Serious stuff, glad you came through OK and credit to your husband and son. If you are in the UK, getting tested is straightforward. Ask your GP to test you for coeliac disease. Your symptoms meet the NICE guidelines for testing - see below: https://www.nice.org.uk/guidance/ng20/chapter/Recommendations#recognition-of-coeliac-disease Both persistent...
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