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Russ H

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Everything posted by Russ H

  1. Russ H
    I think that is the best thing to do. You may have coeliac disease but it seems unlikely from your test results. More likely is NCGS and the only way to find out is a strict gluten-free diet. From the research I have read, blood serum testing for coeliac disease is scientifically well understood, and it is not a matter of opinion.
  2. Russ H
    You probably don't have coeliac disease. An isolated raised tTG-IgG has very low positive predictive value for coeliac disease (about 3%). You also have a negative endoscopy. As others have said, you may have NCGS. The only way to find out is by going on a strict gluten-free diet for a few weeks and see whether your symptoms improve.
  3. Russ H
    You have isolated raised tTG2-IgG antibodies. This has a low positive predictive value for coeliac disease (about 3%) unless you are IgA deficient (which you are not from your results). If someone had coeliac disease, raised tTG2-IgG would normally be accompanied by raised tTG2-IgA: you don't have this and so are unlikely to have coeliac disease. Rejoice...
  4. Russ H
    EMA just detects tTG2 but with lower sensitivity and high specificity. Isolated positive DGP-IgG, which it would be as the other tests were within the reference range, has very low predictive value for coeliac disease - perhaps 3-4%. It is commonly raised but at least 96-97% of raised results are false positives.
  5. Russ H
    The typical lab turn around time is 3 - 5 days. However, they need to receive the sample and return the results to the GP. They should have them by now. As to what the blood tests measure. Coeliac disease is an autoimmune disease triggered by the body's immune response to gluten. As part of the immune response, the body makes antibodies to an enzyme...
  6. Russ H
    Sorry, I missed your post as hadn't scrolled completely down. I am biased by my own experience because I think I had coeliac disease for more than 40 years before I was diagnosed. The fact that blood serum screening shows that most people with coeliac disease are not diagnosed supports my intuition. I have tried to find research relating to period before...
  7. Russ H
    Sorry, missed this response.
  8. Russ H
    Age of diagnosis, not onset. You may have had it for decades as a smouldering disease. In the UK, coeliac disease is most commonly diagnosed between the ages of 40 and 60 - 70 is not that much of an outlier. You might try excluding oats and dairy products until your gut has healed. They can exacerbate symptoms in active disease. Once your gut has healed and...
  9. Russ H
    In addition to what trents has posted above, it can take 2 years or more to recover from dermatitis herpetiformis. Your rash could also be something else such as weeping eczema or an allergic reaction.
  10. Russ H
    Certainly need a B12 supplement and probably iron. Given the general malabsorption problem associated with coeliac disease, I would take a good multivitamin daily, That's what I do.
  11. Russ H
    Hi Liyak, and welcome to the forum. The results you have posted indicate isolated raised IgA DGP. This is not in itself very predictive of coeliac disease in adults because your other results (assuming you had IgA tTG measured) were within the standard range. The total IgA result means that you are not IgA deficient, and therefore the standard tests...
  12. Russ H
    Maltodextrin is gluten-free: https://www.coeliac.org.uk/frequently-asked-questions/can-i-eat-maltodextrin/
  13. Russ H
    I had a quick literature search and couldn't find anything for adults. In children I found one study that was equivocal but another that suggested H. pylori could cause a rise in IgA-tTG2 antibody levels. Your level was only moderately raised - when 10x standard range or higher, it is almost certainly coeliac disease. Adhering to a strict gluten-free diet...
  14. Russ H
    Hi Magnus - can you describe your symptoms more fully? Abdominal pain - which quadrant and how often? Other gut issues - bloating, burping, reflux? Do you have foul smelling, difficult to flush bowel movements? How often? When you say limb numbness - in all limbs, any sensations (pins and needles) etc? Brain fog - do you have memory...
  15. Russ H
    People with coeliac disease vary greatly in their symptoms and sensitivity to gluten. The generally accepted as safe level of gluten exposure is 10 mg per day. People start to show signs of intestinal damage above 30 mg per day. Studies show that some people with coeliac disease on a gluten-free diet can tolerate the occasional meal containing gluten without...
  16. Russ H
    And keep consuming gluten - you need to do that for 6 weeks before the panel for an accurate result.
  17. Russ H
    So if coeliac disease is a cause of migraines, it is not due to shared genetic predisposition but a consequence of coeliac disease itself - perhaps an indication of gluten-induced-neuropathy. I used to get several migraines a year but haven't had one in 2 years since my diagnosis.
  18. Russ H
    Could you share your test results? Values and reference ranges. Most people with coeliac disease can tolerate 10 mg of gluten a day without provoking an immune response. This is the generally accepted as safe level. Wheat flour is about 10% protein, so 10 mg gluten is about 100 mg of wheat flour. Bread has a specific gravity of about 0.25, giving a volume...
  19. Russ H
    It refers to data presented at https://ddw.org/ . Possibly a poster presentation although I can't find it anywhere. The author is interviewed in the link below and suspects that problems could be related to non-adherence to a strict gluten-free diet. https://www.hcplive.com/view/jansson-knodell-treating-pregnant-women-celiac-disease
  20. Russ H
    It is not unheard of. https://www.nature.com/articles/1001404
  21. Russ H
    Isolated positive DGP-IgG has very poor predictive value for coeliac disease in adults. It is useful in infants.
  22. Russ H
    I was ill for so long that I don't remember what normal is. I think I was ill for more than 40 years. I was diagnosed over 2 years ago. I was totally intolerant to dairy but this has now gone. I probably have a lingering dysbiosis and some foods such as beans cause a lot of bloating and burping. Your iron seems very low. Do you take vitamin C with it...
  23. Russ H
    I do the same thing. Mercifully, I don't go into anaphylaxis as some people do if exposed to allergens, but on the other hand don't know whether I have been exposed enough to provoke an immune response and all the sequelae that involves. Apart from a handful of local places that I know are safe, I don't eat out. I got badly glutened several times in Sweden...
  24. Russ H
    People here a posting rigorous scientific consensus backed information. Kennedy is not.
  25. Russ H
    I doubt that very much. Robert F Kennedy jr. has no scientific or medical qualifications and promotes conspiracy theories and anti-vaccine propaganda. Childhood vaccines do not cause problems for most people - they are thoroughly tested and monitored and are very safe. It is not known what triggers coeliac disease. The allegation that glyphosphate causes...
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