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Russ H

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Everything posted by Russ H

  1. Russ H
    What you describe is seronegative villous atrophy (negative antibody tests but positive biopsy). It is uncommon in coeliac disease, and there are other causes, but the most common cause is coeliac disease. I would pursue this with your healthcare provider if possible. Based on clinical history, test results and possible genetic testing for susceptibility...
  2. Russ H
    Hello Surinder, and welcome to the forum. Thank you for sharing your experience. Have you been diagnosed with coeliac disease? Although less common, there are reports of coeliac disease being associated with pulmonary conditions causing symptoms such as a chronic cough. Case Report: A case of cough, lymphocytic bronchoalveolitis...
  3. Russ H
    Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting...
  4. Russ H
    I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled...
  5. Russ H
    The anti-endomysial antibody test is an old test that is generally reported as positive or negative - a lab technician looks down a microscope to check for fluorescence of the sample. It is less sensitive but more specific for coeliac disease than IgA tTG2. Hence, it is not "barely positive" - it is positive. People diagnosed in childhood recover much...
  6. Russ H
    I hope you are on the mend soon. About 1 in 5 people who contracted chicken pox as a child go on to develop shingles in later life - it is not uncommon. There are 5 known members of the herpes virus family including chicken pox that commonly infect humans, and they all cause lifelong infections. The exact cause of viral reactivation as in the case of shingles...
  7. Russ H
    BFree bread is fortified with vitamins and minerals as is ASDA own-brand gluten-free bread. All the M&S bread seems to be fortified also.
  8. Russ H
    For people who can tolerate oats, Marks and Spencers sell a nice loaf: https://www.marksandspencer.com/food/made-without-wheat-gluten-free-oaty-loaf/p/fdp60140058
  9. Russ H
    This is the test KelleyJo is referring to: Blood-Based T-Cell Diagnosis of Celiac Disease
  10. Russ H
    There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease. https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
  11. Russ H
    There are several blogs where people test different beers using commercially available gluten testing kits. Guinness definitely tests positive for gluten. Something to be mindful of is that in some regions, foodstuffs containing less than 20 ppm gluten can be sold as 'gluten free'. However, due to the volume involved, a UK pint of beer at 19 ppm would contain...
  12. Russ H
    I don't live in the US, but based on this thread, I wouldn't risk it: https://www.reddit.com/r/glutenfree/comments/1n2ehw8/cracker_barrel/ This app is helpful: https://www.findmeglutenfree.com/
  13. Russ H
    I missed that. Good summary.
  14. Russ H
    This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval. Anokion Announces Positive Symptom...
  15. Russ H
    I hadn't heard of patatin before. Apparently, it is similar in structure to and cross-reactive with latex. People who react to latex may also react to chitinase, which is found in many vegetables as a defence mechanism against invertebrate pests. Maybe this is what you are reacting to. Chitinase is found in many plants including wheat and maize. https...
  16. Russ H
    The EMA test is an old and less sensitive test for anti-tTG2 antibodies. It relies on a technician using a microscope to check for fluorescence of a labelled substrate (typically monkey oesophagus or human umbilicus), giving a simple positive/negative result. It is similar to running a standard anti-tTG2 test but with a high cut-off, making it more specific...
  17. Russ H
    Data from NHS England shows that most people are diagnosed between the ages of 40 and 60, with the mean age of diagnosis 45. For those diagnosed later in life, I wonder at what age the condition actually begins? Blood screening suggests that most people with the condition are not diagnosed, and that is likely because they have no symptoms or because...
  18. Russ H
    Yes, that seems to be the gist. Quantifying residues in fermented foods and drinks seems to be difficult. There are no tests for total gluten, just immunoassays, which generally detect a single epitope. There are estimated to be approximately 50 sequences that evoke a T-cell response of which nearly half are unknown and have no test. Gluten fragments...
  19. Russ H
    Rather than create a new thread, I thought I would post to this one as it is on topic. The paper linked below is quite comprehensive regarding the state of knowledge of the safety of hydrolysed barley gluten. The final section gives a good summary. Barley based gluten free beer – A blessing or an uncontrollable risk?
  20. Russ H
    That is more than 10x the standard range, so a strong positive. In the UK for children and adults under the age of 55, at least 10x the standard range is sufficient to be diagnosed without having an endoscopy. The NICE guidelines are are different for children in that a referral to a gastroenterologist is also recommended for diagnosis. https://www.coeliac...
  21. Russ H
    Do you know what the lab's standard range is for the IgA tTG2 result? The Endomysial IgA basically tests for the same antibodies as IgA tTG2 but it uses an older, less sensitive method and the result is positive/negative rather than quantitative. Hence, it is possible to show raised IgA tTG2 antibodies without getting a positive test for Endomysial IgA antibodies...
  22. Russ H
    There is information regarding this here: https://www.coeliac.org.uk/information-and-support/coeliac-disease/once-diagnosed/prescriptions/
  23. Russ H
    Although sensitivity to gluten varies between individuals, multiple research studies suggest that consuming up to 10 mg of gluten a day is safe for most people with coeliac disease. Wheat flour contains approximately 10% gluten by weight, so this is equivalent to 100 mg of flour, or a piece of wheat bread the size of a small pea. There is a case report of...
  24. Russ H
    There is a predictive model for children on this link. Depends on sex, HLA genes and number of affected close relatives. The model only goes up to age 12 so it would be interesting to know what the lifetime risk is. https://hputter.shinyapps.io/preventcd/
  25. Russ H
    The problem with a a multiple screening test like this is that it is likely to generate at least one result that is outside the normal range in a healthy person leading to futile investigations. The pathogenesis of dermatitis herpetiformis makes it unlikely that someone would have raised IgA-tTG3 but not raised IgA-tTG2. Suspected dermatitis herpetiformis...
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