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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
    Yes, get back on gluten and postpone the test if necessary.
  2. Russ H
    I think that it is very unlikely that you are passing visible calcium oxalate crystals in your stool. It is passed in urine. The vast majority of people do not have a problem handling oxalic acid. 'Oxalate dumping' does not exist.
  3. Russ H
    Thanks for the update. It is very helpful to others experiencing similar symptoms. No more gluten challenges and get on the mend!
  4. Russ H
    Hi Gilly, It is curious that you are passing oxalate crystals. Do you know for a fact that you are passing them? Oxalic acid is not particularly toxic in itself, it is just that it combines with calcium to produce calcium oxalate, which can cause kidney stones. Risk factors are not drinking enough water, consuming a lot of oxalic acid containing food...
  5. Russ H
    https://www.greatbritishchefs.com/recipes/pure-rye-bread-recipe
  6. Russ H
    Good point. It would be nice to have a strict study with weekly tests to see what actually happens.
  7. Russ H
    Rye is absolutely not safe for people with coeliac disease. It has about 1/3 of the gluten of wheat, which is still far too much.
  8. Russ H
    I don't doubt your symptoms or reaction to gluten. It would be nice to have blood work to narrow it down as there is a whole spectrum of gluten related disorders.
  9. Russ H
    The common blood tests for coeliac disease look for antibodies to an enzyme found in the body called tissue transglutaminase 2 (tTG2) and to a fragment of gluten protein called deamidated gliadin peptide (DGP). EMA is endomysial antibody, which is basically a crude test for tTG2 - like running a tTG2 test with a high threshold so is less sensitive but more...
  10. Russ H
    This case is coming down from a high level though. This plot is for IgA competent children, adults are slower. https://link.springer.com/article/10.1007/s10238-023-01040-1
  11. Russ H
    You obviously had very bad symptoms and I am glad you are on the mend. You might not have coeliac disease though. You may have an inflammatory bowel condition that is antagonised by gluten. Gluten is highly immunogenic. Many people with active coeliac disease develop extreme intolerances to foods in addition to gluten. Milk is a common example. Milk used...
  12. Russ H
    In people who are IgA deficient, IgG tTG2 and/or IgG DGP are merited.
  13. Russ H
    Have you been clinically diagnosed with coeliac disease by blood serum antibody testing and intestinal biopsy? If so, have you had follow up testing since you applied the larvae to your skin? Did you develop a skin rash and have you had stool testing to establish that you are actually hosting hookworm?
  14. Russ H
    It can take several years to come down although it generally takes less time than this. I have seen figures for the half-life of tTG2 antibodies as 2 months in children and 3-4 months in adults. It varies between people. After the sudden initial fall, yours are halving about every 5 months, which is not particularly excessive.
  15. Russ H
    The sensitivity and specificity of the serum tests for coeliac disease have been extensively researched and quantified. For example, having a level of anti-tTG2 antibodies at least 10x the reference range is almost certain to be coeliac disease. Tests are normally prescribed by a healthcare professional as part of the diagnosis - who would have one without...
  16. Russ H
    536! That is 35x the reference range. Considering it was that high I think you are doing very well. They are certainly falling. Have you taken anti-fungal medication for the candida overgrowth?
  17. Russ H
    It certainly will be in the US! The only thing I have seen that might work is retuximab. It eliminates B cells (which generate antibodies) from the body, allowing a fresh set to be generated from stem cells. There are several case reports of people having therapy for other conditions achieving improvement in their refractory coeliac disease from retuximab...
  18. Russ H
    When you say that your antibody levels are elevated, do you have the reference range? Have you tried a low FODMAP diet to deal with your dysbiosis?
  19. Russ H
    But LP023 said: RCD is rare and difficult to diagnose. For example, someone may respond to a gluten-free diet when young and in later life develop RCD. Of course, it may be something else but that is the whole point of diagnosis: medical professionals will have made great effort to exclude other causes. Someone reading this thread who is suffering...
  20. Russ H
    Even if it reduces symptoms, it does not treat the underlying pathological immune response.
  21. Russ H
    I think some of the terminology is wrong. Rather than 'testing positive', I think it is better to say 'having raised antibody levels'. We seem to be going around in circles in this thread. It is true that raised tTG2 antibody levels can be caused by other conditions, particularly involving inflammation of the bowel, liver or joints. However, very high...
  22. Russ H
    EMA is just tTG2 with a high threshold. It detects the same antibodies just more crudely. Moderately raised tTG2 can be caused by other conditions but when the tTG2 antibodies are at least 10x the reference range, that is almost certainly coeliac disease. This is in essence what the EMA test is doing.
  23. Russ H
    It happens with primary teeth but should not happen with secondary teeth.I found a case associated with coeliac disease but it seems to be very unusual and possibly associated with vitamin D deficiency and mineral metabolism. https://pubmed.ncbi.nlm.nih.gov/29335688/
  24. Russ H
    Genetic testing is useful to exclude coeliac disease, but I think the main thing is to pick it up with antibody screening. I was misdiagnosed for 22 years although I suspect I have had coeliac disease for 45 years. It is a horrible disease and the blood test is relatively cheap. Screening children and 1st degree relatives will catch most cases.
  25. Russ H
    Agreed. A good way to rule out most suspect cases. However, genetic testing is relatively expensive.
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