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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
    Thanks, it seems to be improving. I have met a few people with the condition now, which has been a great help. Most of the work regarding this dates back to the 1980s. This is a frequently cited paper: https://pubmed.ncbi.nlm.nih.gov/6682819/ There are quite a few endocrine-related disorders related to coeliac disease such as type-1 diabetes...
  2. Russ H
    Hi I think you still have cause to be optimistic. Firstly, you know you have the condition and are treating it appropriately so that it goes into remission, and it won't get worse. You know this because your tTG2 antibodies have fallen to a low level. Secondly, you have only just got your antibodies down and healing takes time. If your gait issues...
  3. Russ H
    Although I believe I have had coeliac disease since childhood, my symptoms became much worse at the beginning of 2000 following influenza. I experienced significant weight loss, one of my friends describing me as 'emaciated' when she saw me after several years. One of the striking things is the amount of muscle I lost. Over the years I became quite feminized...
  4. Russ H
    I use the same toothpaste, and it has no gluten containing ingredients. What GSK say is that because they do not test it and because their suppliers do not guarantee no cross contamination, they cannot state that it is gluten-free. https://www.sensodyne.com/en-us/frequently-asked-questions/
  5. Russ H
    I struggled with the diet in the beginning, too. For me: 2 weeks: noticed improving bowel movements 4 weeks: fatty stools begin to go, strong body odour & bad breath disappear 3 months: bloating, burping and reflux suddenly resolve over a couple of days, itchy skin wheals disappear, fatigue improves. 6 months: psychiatric symptoms...
  6. Russ H
    But no evidence of bleeding, I take it, and the cause of your anaemia is still unknown? So, you could be IgA deficient and not showing up on that test for coeliac, but do show up on IgG.
  7. Russ H
    So the EE was diagnosed visually rather than by biopsy? Without a biopsy and exclusion of other causes, that diagnosis comes across as unduly certain. Do you suffer from reflux?
  8. Russ H
    So it works mainly at low pH, and once through to the duodenum has little activity? Would it be possible to combine it with another enzyme for activity at higher pH? Do the pancreatic proteases attack it?
  9. Russ H
    Other conditions such as arthritis and type 1 diabetes can raise anti-tTG, but it does sound like coeliac disease. Will they do a coeliac gene test for him?
  10. Russ H
    It's easy to make a mistake. I had a spoonful of a new brand of gazpacho soup (the previous one was gluten free). Fortunately I tasted the bread immediately and spat it out before swallowing it. Looks difficult to source in the UK, so would have to import from the US. I can't see a problem with customs beyond their exorbitant charges.
  11. Russ H
    I have been thinking that this product might be useful. In the UK, food is allowed to be labelled 'gluten free' if it contains less than 20 parts per million (ppm) of gluten - it can still contain gluten. The idea is that on a diverse diet, total consumption will be less than 10 mg of gluten: low enough not to trigger an immune response. However, it is still...
  12. Russ H
    Remember you need to be eating gluten every day for 6 weeks prior to the blood test - at least 2 slices of bread or equivalent per day. Also, if your antibodies come up negative but you have HLA DQ2/DQ8, are symptomatic and have several first generation relatives with coeliac disease, that is a good argument to have an endoscopy (on the NHS, so you are not...
  13. Russ H
    The more I read about it, the more complex and less-understood coeliac disease seems to be. People with neurological symptoms often have antibodies to tTG6, and in the UK there is only one specialist centre that tests for that. Perhaps there are other auto-antibodies yet to be discovered
  14. Russ H
    I had steatorrhea - like foul-smelling, sticky porridge. Fat was going straight through me. I only used to go once a day but it was time consuming and unpleasant. Now I go 2 or 3 times but I have almost normal bowel movements. At the time, I was in Sweden during the coronavirus pandemic. They had this crazy anti-mask thing going on - staff in hospitals...
  15. Russ H
    Several other conditions are also associated with raised levels of anti-tTG2 antibodies including arthritis, IBS and type 1 diabetes, but the levels are not as high as often seen with coeliac disease. A high level is very specific for coeliac disease, but a low level could be coeliac or another condition and needs further investigation. Be persistent...
  16. Russ H
    The fact that your bowel movements have improved indicates that your gut is healing. I wish that I had taken the opportunity to have an endoscopy when I was offered one in Sweden.
  17. Russ H
    AN-PEP does seem to be active in the stomach and small intestine. In the study I saw, it cut by half the amount reaching the small intestine following a small dose of gluten. That is not enough for me to try using it - I think it is better to concentrate on avoiding gluten exposure. Here is brief nature article on it's gut activity: https://www.nature...
  18. Russ H
    Well done for getting her diagnosed and sorted out. Many of the extra-gastrointestinal symptoms are caused by auto-antibodies, particularly regarding arthritis.
  19. Russ H
    Originally the guidelines required an endoscopy for all adults, this was raised to those aged 55 and over. The purpose of the endoscopy in older people is to check for abnormalities such as neoplasms rather than diagnosis of coeliac per se.
  20. Russ H
    Apparently, it can take up to 2 years for the gut to fully heal and several years for the antibodies to come right down. Most doctors don't seem to be aware of how serious and wide ranging to effects of coeliac disease are, particularly neurological. I experienced something similar with bowel movements. I have found dealing with coeliac disease...
  21. Russ H
    It is called nystagmus. It is mentioned in this excellent talk "What does gluten do to your brain?" at 5:30 from the start. In the study, 11% of newly diagnosed gastro-intestinal coeliac patients had nystagmus. What does gluten do to your brain? Youtube
  22. Russ H
    The UK is slowly moving out of the Stone Age. The latest provisional guidelines, which were updated during the pandemic are here (prior to that, all adults had to undergo a biopsy): https://www.bsg.org.uk/covid-19-advice/covid-19-specific-non-biopsy-protocol-guidance-for-those-with-suspected-coeliac-disease/
  23. Russ H
    Hi Sabaarya, I was diagnosed last summer. It took me several months to get my diet properly sorted out. I was living in Sweden, which was an absolute nightmare for coeliac disease and I had several large exposures to gluten that made me quite ill. I haven't had any significant exposure to gluten since September last year. So, I have been strictly gluten...
  24. Russ H
    Hello areed, It is very common for sufferers of coeliac disease to have neurological signs and symptoms. From my reading, the aetiology is not well understood but stems from 2 causes: immunological and deficiency of essential nutrients. The brain is rich in tissue transglutaminase and makes a target for anti-ttg antibodies. In addition, coeliac sufferers...
  25. Russ H
    If they are the same as these, they look OK - no crazy megadose vitamins. Bit strange that they don't have iron. https://www.amazon.co.uk/Vitafusion-Complete-Multivitamin-Natural-Flavors/dp/B071ZJHLJR Coeliac disease certainly is real. People used to die from it within living memory. About 1% of western populations have coeliac antibodies. When...
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