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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
    You didn't eat the haggis did you? The Jocks put anything in that - roadkill, dead climbers, asbestos. For me, the worst part is the neurological symptoms. When I have been glutened, I get anxiety, confusion and memory problems. It comes on over a day or so and fades over several weeks. I get gastrointestinal symptoms - reflux, burping and fatty stools...
  2. Russ H
    I always check and have never found gluten in mustard or ketchup. You have to watch out for brown sauce (HP Sauce or Daddies Sauce) as they contain rye flour.
  3. Russ H
    Yes. According to this study, in most people a reaction to oats is secondary to the reaction to gluten. When gluten is withdrawn from the diet and the immune response to gluten dies down, so does the one to oats. So it seems reasonable to wait until the antibody count has come down and the gut is healed before trying oats. https://www.tandfonline.com...
  4. Russ H
    Yes, it began to improve after about 3 months on a strict gluten free diet but still comes back now and again. I think it is caused by a small intestinal dysbiosis (SIBO). I regularly eat fermented food such as unpasteurised cheese and kefir. This seems to help. Some food seem to antagonise it for me: beans, tofu and starchy foods like rice or gluten-free...
  5. Russ H
    It is complex and nuanced, but I think it is fair to say that for most people in remission from coeliac disease it is safe to consume 75 g (3 oz) of gluten-free oats per day. https://www.frontiersin.org/articles/10.3389/fped.2019.00384/full
  6. Russ H
    Considering that your initial test result was more than 30x the standard range, and now you are very close to it, I wouldn't worry.
  7. Russ H
    It can be very trying but on the positive side, it normally goes into complete remission on a strict gluten-free diet. If you look at all the other autoimmune diseases that people have and the Hell that they go through, we have it easy - it could be much worse.
  8. Russ H
    I reintroduced gluten-free oats after a year on a strict gluten-free diet. I don't have a problem with them at all, and it gives a bit more variety to my diet. The problem with oats is that they are often grown in rotation with other cereal crops so there will be cereals coming up from the previous year's harvest, and they are often processed in the same...
  9. Russ H
    In some cases it is possible to be diagnosed without a positive antibody or endoscopy test. Certainly in the UK there are guidelines for this, and Spain is definitely more advanced than we are! This is based upon a genetic test and resolution of symptoms during a gluten free-diet under a specialist. Having a formal diagnosis is useful, if for example you...
  10. Russ H
    This paper indicates that in combination with DQ2, DQ6 can increase positive predictive value by 50%. Looks like whoever is doing the genetic testing is on the ball in this case as it is a quite recent finding. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7785002/
  11. Russ H
    Also, coeliac disease causes a 'leaky gut' so milk proteins can get into the gut wall. I am assuming that is what happened to me and why I can now tolerate milk as my gut has healed.
  12. Russ H
    It does not seem at all well understood but the current idea is that DH develops from coeliac disease. So it is possible to have silent coeliac disease that progresses to DH. On a gluten-free diet, both go into remission but then either or both can flare up on readmission of gluten to the diet. https://www.mdpi.com/1422-0067/23/6/2910
  13. Russ H
    I used to react very badly to dairy. It was a delayed reaction and took at least 24 hours to come on, which made it difficult to narrow down what was causing it. I would be bed-bound for a couple of days with cold sweats, bloating and burping and diarrhoea - much worse symptoms than if I eat gluten. I have no trouble with dairy now. I can't remember exactly...
  14. Russ H
    I doubt you would ingest much that way unless someone had dropped a bag of flour and the air was full of it. The generally accepted safe level for most people is 10 mg of gluten per day for regular exposure. This is equivalent to 100 mg of wheat flour, or a piece of bread the size of a small pea. Most people start to show a reaction when regularly ingesting...
  15. Russ H
    This paper suggests that the immune response to tTG3 and tTG6 likely starts with antibodies to tTG2 that are cross-reactive, which then diversify by 'epitope spreading' to create distinct antibodies to tTG3 and tTG6. However, it states that direct gluten induced autoimmunity to tTG3 (and tTG6) cannot be excluded. https://onlinelibrary.wiley.com/doi/full...
  16. Russ H
    Coeliac disease is an autoimmune disease where as part of its immune response to gluten, the body makes antibodies against itself - particularly against the enzymes tTG2 in classical coeliac disease, tTG3 in dermatitis herpetiformis, and tTG6 in gluten ataxia and neurological manifestations. The expression of these enzymes varies in different of the body...
  17. Russ H
    It is certainly worth getting tested. In the UK, medical guidance is now moving towards testing patients with various chronic symptoms for coeliac disease. It is a relatively cheap and sensitive blood test. I used to have a chronic sore throat, in fact my dentist commented that my throat was red during a routine check-up. This was the event that led...
  18. Russ H
    I''l have to ask the farmer. It is probably mat-grass (nardus) or common bent. They are both in the Pooideae sub-family along with cereal grasses. I wonder whether there is some connection. Grasses in general seem to be quite immunogenic.
  19. Russ H
    Helped a local farmer to stack bales of hay. Had a nasty reaction. It is a grass, not too distantly related to wheat (I have coeliac disease). Took a couple or weeks to heal up. Anyone else experienced similar?
  20. Russ H
    I used to suffer from chronic sore throat and post nasal drip. Also bad breath despite scrupulous dental hygiene. Completely went following diagnosis and strict gluten-free diet. I certainly had reflux, bloating and burping. Maybe it was reflux but my gut felt raw from my throat through to the other end. I wonder whether coeliac disease can directly affect...
  21. Russ H
    The symptoms of coeliac come from the body's immune response to gluten rather than gluten itself. As soon as you eliminate gluten from your diet, your symptoms will gradually begin to improve. It can take 2 years for the gut to fully heal. I began to notice improvements within a week or so but it took a year before I was back to normal. I had had coeliac...
  22. Russ H
    Mine were intensely itchy. In fact for a while I was convinced I had bed bugs or something similar.
  23. Russ H
    That is an interesting question. It is certainly true that fragments of gliadin (one of the proteins present in gluten) can escape the lumen and enter the wall of the gut where the immune response leading to coeliac disease takes place. In classical coeliac disease, a fragment of gliadin binds to an enzyme found in the gut wall called tTG2 and forms...
  24. Russ H
    Are you in the UK? If so, the GP will generally follow NICE guidelines. However, there does seem to be some variation in initial tests performed between different GPs and Health Trusts. NICE specifies: Some people get tested for DGP regardless, so worth trying as there does seem to be a degree of flexibility.
  25. Russ H
    Yes, and children often test positive for anti-DGP antibodies before they do for anti-tTG2, so it is particularly important that they have that one.
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