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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
    I had a similar experience to yours where I was ill with non-specific symptoms since childhood but became much worse following a very stressful period. It is an insidious disease and sufferers become so habituated to the malaise that it comes as a shock as to just how ill they were on recovery. It takes time: your gut needs to heal and your antibody levels...
  2. Russ H
    It can take 2 years for the gut to completely heal although most people recover faster than this. I recovered gradually for the first 3 months and then experienced a sudden improvement in my gastrointestinal symptoms. It took a good year for me to fully recover. It is common for people with coeliac disease to react to milk. This can be caused by gut...
  3. Russ H
    Why is this nonsense? The study confirms that most people, whether or not they have coeliac disease, experience mild to moderate symptoms as you did. Vaccination provides modest protection against infection but large protection against severe disease and death. Of note from the study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9933522/
  4. Russ H
    Thank you for the interesting review article. Sheffield Teaching Hospital in the UK has been doing excellent research into gluten induced neuropathy. For example, in the prospective cohort study linked below, 67% of newly diagnosed celiac disease patients (mean age 43) had symptoms and/or signs of neurologic dysfunction. 42% suffered frequent headaches, ...
  5. Russ H
    Do you mean getting cross contamination from handling them? If so, then I wouldn't worry - the amount of gluten transferred would be minuscule. The general medical consensus is that most people with coeliac disease can tolerate up to 10 mg of gluten per day without reacting. The is equivalent to a piece of bread the size of a small pea. You won't ingest more...
  6. Russ H
    Coeliac disease clearly has a strong genetic predisposition as an identical twin has a 75% chance of developing the condition if their twin has it. Some of the genes are known but I suspect that the predisposition stems from the interaction of many genes in a similar way to those affecting height: thus, when you are over a certain threshold and exposed to...
  7. Russ H
    Some people are certainly more sensitive to gluten than others. The weakness of that study is selection bias. 8% of the subjects stated that they occasionally consumed gluten, and these are likely to be those less sensitive to gluten. This does not mean that all people with coeliac can occasionally consume gluten without ill effect. As the authors state,...
  8. Russ H
    There is an association between coeliac disease and inflammatory arthritis. It is also quite common to have insertional tendinopathy on diagnosis (even if asymptomatic). The patella and Achilles' tendons are commonly affected. I was plagued with insertional Achilles' tendonitis for 2 decades before diagnosis, and this gradually resolved on a strict gluten...
  9. Russ H
    Your daughter seems to meets the criteria for being tested for coeliac disease. A link to the NICE guidelines is below. From your description, she has: enamel defects borderline anaemia persistent unexplained abdominal or gastrointestinal symptoms https://www.nice.org.uk/guidance/ng20/chapter/Recommendations#recognition-of-coeliac...
  10. Russ H
    Hello There are several types of antibodies (also called immunoglobulins) including IgA and IgG. About 1 in 100 people has low levels of the type IgA - this is often asymptomatic. It means that the standard coeliac disease test might not work, and instead an IgG test will be performed. Low IgA of itself does not indicate coeliac disease. Coeliac...
  11. Russ H
    I'd like to see actual figures and sources for your assertions. About 1 in 4 people with coeliac disease are diagnosed. The safe daily limit for most people is 10 mg of gluten although some people are more sensitive. This is equivalent to a piece of bread the size of a small pea. Regular exposure to 2 to 3 times this amount leads to an immune response...
  12. Russ H
    I have not seen any research to justify such a position. Epitope creep suggests that the worst thing you can do is to continually expose the immune system to gluten. I can understand that some people who have been diagnosed via screening and are completely asymptomatic might wish to ignore a gluten free diet but generally doing that is harmful.
  13. Russ H
    I thought I was losing my mind. Pretty much back to normal now. Also, I began to get eye wobbles and had mild balance and coordination problems. I am a cyclist - I used to race when I was young. I can still do a track stand but I could feel how my balance was going. Luckily it has come back.
  14. 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...
  15. 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.
  16. 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...
  17. 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...
  18. 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
  19. 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.
  20. 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.
  21. 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...
  22. 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...
  23. 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/
  24. 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.
  25. 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
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