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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. The NICE guidelines suggest testing for total IgA as well as IgA tTG. Might be worth referring this your GP to this if it hasn't been done. https://www.nice.org.uk/guidance/ng20/chapter/Recommendations#serological-testing-for-coeliac-disease Other tests that might be worth considering for home testing include IgA anti-DGP, IgG anti-DGP, and IgG...
  2. Did they also measure total IgA? A minority of people are deficient in IgA and so don't show up on the standard test. More tests are becoming available in the UK but unfortunately the NICE guidelines are very conservative regarding testing. There a few very knowledgeable people on the forum regarding NCGS who will be of help but most of them are on US...
  3. Hello, and welcome to the forum. Many of your symptoms are common with coeliac disease. Do you know what tests you had for coeliac disease and what the figures were?
  4. Health service labs in the UK will often run an endomysial antibody test on all positive anti-tTG2 tests. The whole thing is in a state of flux with developing knowledge and practices. The anti-tTG2 tests appear to be pretty much as reliable as endomysial tests as the technology has improved (human recombinant tTG ELISA). Since they both test for antibodies...
  5. Sources give varying figures. In young children, the half-life is a little less than 2 months: https://www.tandfonline.com/doi/abs/10.3109/00365513.2015.1124449 This study on older children in India indicated a fall of about 50% in IgA anti-tTG2 after about 6 months: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6482799/ In...
  6. That result is borderline positive. Serum antibodies decay with a half-life of 3-4 months. From your comment suggesting sporadic gluten consumption when eating out, it is not particularly surprising.
  7. I don't know for sure. Coeliac disease is a complicated immune disease that varies greatly between individuals. The gold standard is to ingest at least 2 slices of wheat bread daily for at least 6 weeks prior to blood testing. For endoscopy, 2 weeks is considered sufficient in some quarters. Antibodies are generated in the intestinal wall during the immune...
  8. Yes, that is another couple of pieces in the jigsaw. Vitamin D deficient, autoimmune thyroid antibodies - they are associated with coeliac disease. Of course, it may not be coeliac disease. I would urge any of my family or friends with what you have described to get down to the quack and get tested. In the worse case, it would eliminate a possible cause.
  9. I think it could be worth your getting tested. There are medical advantages to having a formal diagnosis. It is a blood test rather than a medical intervention, and it would be beneficial to know whether you do indeed have coeliac disease. Your GP would refer you for testing if you ask for it. The half life of coeliac antibodies is 3-4 months, so if you get...
  10. How long have you been gluten free? Have you noticed any change in your other symptoms while excluding gluten?
  11. Thanks for the heads up. What did you use for the gluten-free flour out of interest?
  12. Can you post your test results and lab standard ranges if you have them?
  13. Serious stuff, glad you came through OK and credit to your husband and son. If you are in the UK, getting tested is straightforward. Ask your GP to test you for coeliac disease. Your symptoms meet the NICE guidelines for testing - see below: https://www.nice.org.uk/guidance/ng20/chapter/Recommendations#recognition-of-coeliac-disease Both persistent...
  14. The best way to see whether you have coeliac disease is a blood test for antibodies. In the UK, this would normally be requested by your GP (are they called family doctor in the US?) or gastrointestinal specialist. It is a simple test and quite sensitive. If positive, you would likely be referred for an endoscopy for confirmation. When you say that you...
  15. Hi Shem Coeliac disease can have unusual symptoms. I have read a case report of a 15 year old girl diagnosed purely from severe chilblains, a naval officer with tendon ruptures that turned out to be due to scurvy caused by coeliac disease. Coeliac disease does increase the chance of developing cardiovascular disease, and it is known to cause cardiac...
  16. Yes, that it the average body weight in Europe. I suspect in the UK it is significantly higher. It is a useful reference document - comprehensive and conservative. I plan to do that. I currently take a multivitamin. Apparently the one to be careful of is B6, which can cause neuropathy when given at high doses for long periods. The safe...
  17. According to this study, IgG anti-DGP antibodies can show up before tTG antibodies in children with coeliac disease, which is basically what the results you posted show. https://www.naspghan.org/files/documents/pdfs/cme/jpgn/Antibodies_to_Deamidated_Gliadin_Peptide_in.13.pdf IgG anti-DGP are highly specific for coeliac and unlikely to be a false...
  18. Following discussion of B12 supplementation in another thread, this document by the European Scientific Committe on Food has comprehensive information regarding tolerable upper limits for various vitamins and minerals. It is a cornucopia of useful information. European Food Safety Authority - TOLERABLE UPPER INTAKE LEVELS FOR VITAMINS AND MINERALS Regarding...
  19. Yes, they are hereditary in people who wear shoes. They are not hereditary in people who don't wear shoes because they don't get them. Bunions are not caused by coeliac disease. Open Original Shared Link
  20. They have a hereditary component in the sense that foot width and shape is hereditary. Bunions are rare in people who habitually go barefoot. Women get bunions more often than men because they wear narrow shoes. It is largely a mechanical cause.
  21. Coeliac disease can lead to foot pain but I think it is unlikely to cause bunions. Bunions mainly arise due to an interplay of a foot shape and footwear. Most shoes are not anatomically foot shaped and push the big and little toes inwards. Beyond a certain point, the tendons running beneath the feet become displaced and pull the toes out of alignment. Eventually...
  22. It was just a guess. They sound like they are acting diligently.
  23. Good luck with that! The GP will follow NICE guidelines which are for tTG-IgA and total IgA. If tTG-IgA is borderline they will request an EMA test to follow up.
  24. Hello M4RK, That MCHC is only just outside the standard range and could just be a spurious result. It may be that there are some values which are within the standard range but suspicious, especially for a youngster. Out of curiosity, did they test serum ferritin and iron?
  25. Only bacteria and archaea have the necessary biological pathways to make B12. You can find it in some fermented foods and it is also found in some seaweeds due to a symbiotic relationship between the plant and bacterial colonies growing on it. I think these are very unreliable sources. Supplementary B12 is manufactured by industrial bacterial fermentation...
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