Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

Russ H

Moderators
 View Profile  See their activity

  • Posts

    423

  • Joined

  • Last visited

  • Days Won

    7

 Content Type 

Profiles

Forums

Events

Blogs

Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by Russ H

  1. Russ H
    Yes, accessing research can be difficult, especially considering that most of it is publicly funded.
  2. 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
  3. Russ H
    Sorry, I didn't realise that. How ridiculous.
  4. 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/
  5. 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...
  6. 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
  7. 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...
  8. 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...
  9. Russ H
    Do you have a reference for this? All the advice I have seen suggests 10% or lower for first degree relatives.
  10. 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/
  11. 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...
  12. 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
  13. Russ H
    Sorry, that should read 'Cultivated barley'.
  14. 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...
  15. 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.
  16. 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...
  17. Russ H
    Good luck. It can be a real pain but is worth the effort.
  18. 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...
  19. 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...
  20. 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.
  21. 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...
  22. Russ H
    Coeliac disease has a complicated and not completely understood immune process. On top of that, individuals respond very differently. One of the proteins within gluten called gliadin is resistant to digestive enzymes and is not completely broken down to short peptide chains for absorption. The remaining large fragments are quite immunogenic. If it gets...
  23. Russ H
    That is curious. In children, DGP can show before tTG antibodies. You are an adult and have been symptomatic for 7 years and yet have a borderline positive DGP but no tTG. If you are IgA deficient, you are not showing up on IgG so that would be perplexing. Interesting.
  24. Russ H
    BeckyH25, That is entirely your choice. I don't think the UK is particularly bad for endoscopy procedures. My mother had one with sedation and couldn't remember it afterwards. In my experience, worrying about a procedure is far worse than the procedure itself. The NHS has been cut to the bone - consultants do not offer procedures that are not medically...
  25. Russ H
    I am not suggesting that for NCGS. If someone does not have blunting of the villi and does not have antibodies indicative of coeliac, is it worth eliminating gluten to a level below that which avoids symptoms? Take IBS - in some cases it seems to be antagonised by gluten even if gluten is not the direct cause of the condition. If avoiding major sources of...
×
×
  • Create New...