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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
    Mine were intensely itchy. In fact for a while I was convinced I had bed bugs or something similar.
  2. 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...
  3. 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.
  4. 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.
  5. Russ H
    Yes, accessing research can be difficult, especially considering that most of it is publicly funded.
  6. Russ H
    This study in Norway suggests that 3 out of 4 people with coeliac disease are undiagnosed: https://www.nature.com/articles/s41598-022-16705-2
  7. Russ H
    Sorry, I didn't realise that. How ridiculous.
  8. Russ H
    Other studies comparing serological prevalence with diagnostic prevalence suggest only 1 in 7 to 1 in 8 cases are diagnosed. https://cks.nice.org.uk/topics/coeliac-disease/background-information/prevalence/
  9. Russ H
    Well, there is a condition called dermatitis herpetiformis that is related to coeliac disease. Classically, it produces an extremely itchy, blistering rash that takes some time to resolve following a strict gluten free diet. It commonly affects the elbows, knees and buttocks but can affect other parts of the body such as the hairline. I used to get extremely...
  10. Russ H
    Yes, but some studies indicate that up to 90 % of coeliac cases are undiagnosed (rather than half), which suggests bias in the selection. https://journals.lww.com/jpgn/Fulltext/2007/10000/Ninety_Percent_of_Celiac_Disease_Is_Being_Missed.23.aspx
  11. Russ H
    I think that you should be reassured that you have a GP who is concerned about you. I understand that it is a worrying time for you - I have had a similar experience. It may well be that you have coeliac disease, indeed IBS is sometimes mistaken for coeliac disease, or people can have both at the same time. Coeliac disease is quite a mysterious illness and...
  12. Russ H
    That was a retrospective study. They trawled the records looking for first degree relatives who were tested for coeliac. It found that 44% of first degree relatives who were tested for coeliac disease had the condition, not that 44 % of all first degree relatives had the condition. Most first degree relatives are not tested and there is a strong bias to test...
  13. Russ H
    Do you have a reference for this? All the advice I have seen suggests 10% or lower for first degree relatives.
  14. Russ H
    The risk for 1st degree relatives (who share half of each other's genes) is about 10 %. Identical twins is about 70%. https://www.coeliac.org.uk/information-and-support/coeliac-disease/about-coeliac-disease/causes/genetics/
  15. Russ H
    The blood test you likely had was for IgA tTG antibodies. High levels, typically more than 10x the standard range, are specific to coeliac disease. Low levels only just above the standard range can be caused by other conditions as well as coeliac disease such as bowel or liver inflammation. Under current UK guidelines, a GP may diagnose coeliac disease...
  16. Russ H
    There seems to be uncertainty in whether peptide sequences from hydrolysed or fermented products can elicit an immune reaction. There is an FDA review of testing in the link below. https://www.federalregister.gov/documents/2020/08/13/2020-17088/food-labeling-gluten-free-labeling-of-fermented-or-hydrolyzed-foods
  17. Russ H
    Sorry, that should read 'Cultivated barley'.
  18. Russ H
    Yes, the US system of gluten-free and gluten-reduced seems better than the European one. I am avoiding beer for the moment as I have read research suggesting that some people might still react to fragments of degraded gluten proteins in supposedly safe beer. In this study, the blood sera of 31 people with coeliac disease and 30 matched controls without...
  19. Russ H
    I had thickened red and itchy skin on my knees and elbows prior to diagnosis. I never had classical symptoms of dermatitis herpetiformis but I got intensely itchy bumps on my thighs, hips, shoulders and scalp. This completely disappeared over about a year on a strict gluten-free diet.
  20. Russ H
    Pellagra is symptomatic B3 deficiency, which may include inflamed skin. Dermatitis herpetiformis is a cutaneous manifestation of coeliac disease where auto-antibodies are deposited in the skin and cause inflammation. They are separate conditions, although undiagnosed coeliac disease could lead to pellagra. Skin samples for DH show characteristic deposits...
  21. Russ H
    Good luck. It can be a real pain but is worth the effort.
  22. Russ H
    No, you can't do this. It has been tested extensively with lots of research. Coeliac disease is not an allergic type reaction where you can increase tolerance by gradually increasing exposure. The immune reaction in coeliac disease is more akin to fighting off a virus - every time the body is exposed to gluten, it boosts antibodies and T-cells and these are...
  23. Russ H
    Gluten-free beers can be risky. In the UK, any beverage with less than 20 ppm of gluten can be sold as 'gluten-free'. The 20 ppm level was chosen so that on a diverse diet, a person consuming a mixture of completely gluten-free food (such as meat, vegetables and dairy) and food containing gluten at less than 20 ppm will consume less than 10 mg of gluten a...
  24. Russ H
    As it is a low positive, certainly worth getting total IgA tested. They should also be able to test for deamidated gliadin peptide antibodies, which has various acronyms including DAGL, DMG and DGP.
  25. Russ H
    I wouldn't call it very odd as there is so much variation between people. See what happens with your IgA test and endoscopy A paper quoted in this review states: The celiac disease That Pays Dividends: More Than 15 Years of Deamidated Gliadin Peptide Antibodies So, it is certainly possible to have -ve tTG IgA with +ve DGP IgA and...
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