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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About dbygones

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  • Birthday 06/06/1967

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  • Gender Female
  • Interests All animals, especially horses and men... reading, walking, gardening - anything outdoors. My grandchildred (and their parents, of course...)
  1. Hi nvsmom, thanks for your answer; I don't know what tests they ran - even my rubbish doc said he just had the 'negative' from the hospital and doesn't know what tests were done. Personally I think he should have to retake his exams!   I'll drop down to 'gluten-lite' for a while until I have a better idea when I might get an endo... my pharmacist agreed they're 'pretty slow' around here   (the prescriptions are for the special food - you can get quite alot from the nhs if you're celiac disease).   x
  2. Hi, I'm in Scotland (only posted once here a while ago so don't expect you to remember me)   I finally got my blood tests results, and my doctor says they were negative. He has said he will speak to the gastroenterologist to ask where we go from here; apparently he has told my doctor previously that the incidence of false negatives is down as low as 5% nowadays. I want to wait to see what he says but also be prepared in order to push if I need to/want to. (doctor didn't even know about ncgs...)   I am tempted to just go gluten free, but obviously don’t want to if there is any chance of getting a positive result soon. As a mini trial, on Friday and Saturday I had no gluten and felt very good on Saturday; on Sunday I then had three lots of gluten: two croissants, two small cakes (a brownie and a pastry); then a few spoonsful of barley, something I haven’t had before. I spent the rest of Sunday feeling incredibly ill – sick and shivery, and had a strong emotional reaction (couldn’t stop crying!). I have felt irritable and emotional often after eating gluten, but this was completely uncontrollable. I feel a bit better today, but not great.   I am aware that I may ‘just’ have Non-coeliac gluten sensitivity; do you know if this presents with as strong symptoms as coeliac? Is there any test or need for testing for this, or would I just be better keeping away from gluten? I do know that there are as yet no prescriptions available for this as there are with coeliac. This was my only reason, really, for trying to get a diagnosis as it will obviously help; however I’m not prepared to go another 3 months or longer to try to get a diagnosis that is negative in the end.   Thanks all, you give us all hope!   Dee    
  3. Really pleased for you! I was scrolling down and thinking how badly the system can work sometimes and wondering if you would get anywhere by logging a complaint - very pleased you've got a cancellation!   Hope your boy is feeling much better very soon
  4. Thanks, both; I thought it might be something like that. yes there is a lot isn't there! I have been doing a lot of reading - this site is gold dust.   It's stupid; if the NHS says that coeliacs can have gluten-free on prescription then surely anyone who can't tolerate gluten should get the same treatment - I don't know but can imagine that a gluten intolerance could lead one day to full-blown coeliac?   I guess I'll just sit tight and use the time like you say, to prepare - and 'enjoy' the stuff I won't be able to eat! although enjoy is difficult, when you know you're going to feel so rough because of it...   Off now to eat some of the lovely malt bread my oh makes... he's promised to try it with gluten-free flour after!
  5. Thanks Mindwarp, that's really helpful! I'll try to ask around about different docs who might not bother with a biopsy. My diet is already quite basic coz I'm (almost) vegan - but it would really help to be able to get 'pure' oats and flours, and cereal. (I still lapse on dairy occasionally and I'm only just learning to cook with egg replacer and tofu...)   I've now found another question - maybe I should start another topic? I'll try it here and see.   My oh is really good about all this, supportive etc, but has questioned my theory about not being able to eat 'normal' oats. He thinks I'm probably not bad enough for such a small amount as cross-contamination to cause an issue.   So: why does a tiny amount like in contaminated oats cause such a reaction? especially if your gut has been healing over time... I personally do know I react to them, now, because I felt it come on the other day after eating porridge. Is it more to do with the anitbodies you've got in the blood than it actually causing a physical problem in your gut?   Thanks!
  6. Hi there. Like many others I've found this place trying to find an answer for my health issues; unlike most on here I'm from the UK (Scotland) so have to do battle with the NHS now! I've just moved up here from England, so new doctor; when I first started to feel like this I asked him to test for hyperthyroidism as I had it a couple of years ago. That test came up negative, to my surprise, and now I think my doc thinks I'm a bit of a hypochondriac! He was stumped too, though, and said he'd refer me to a 'physician'. Apparently he meant an endocrinologist, which was logical, I guess! Then I started the 'fast' diet – where you eat barely anything for 2 days out of 7 (yes I'd been putting on weight... and yes – it's brilliant!) I couldn't believe how much better I felt during and after those days, and suddenly realised that I could feel the onset of symptoms after eating gluten again! I did a bit of research and landed here. As you know, we have the wonderful NHS here which is brilliant, but a little cumbersome and archaic at times! So I had the discussion with my doc yesterday, who agreed to send me for a blood test; should get the results in 'a week to ten days'; then, if it's positive, I'm to go for the endoscopy – waiting time could be 3 months I challenged him on if he'd send me for an endoscopy if the blood test was negative, pointing out it's possible to have a negative. He sort of did agree that he would... But when I was challenging how long it would take before we had a 'definitive' diagnosis from an endoscopy he was basically saying 'tough, that's the deal'. He was, at least, accepting that, as I'd had complete loss of my symptoms on 4 occasions when I went gluten free, it would appear it would be positive. However, reading further on this site it would suggest that, if my bloods are positive, an endoscopy could then appear negative – still equating to a 'nil' diagnosis! So, my questions are: do the NHS blood tests do the comprehensive screening as suggested on here, or should I push for that (can I?) If I get a positive blood test 'can' the doctor go with that, and my experience, to diagnose me, and not bother with the endo? I'm feeling a bit mercenary, but tbh if the NHS didn't provide special food on prescription I wouldn't bother with all this! Are there other good reasons for getting a proper diagnosis? When I asked the doc about this, he just fudged, saying that the gastro people 'like to keep an eye on you' if you're diagnosed. He didn't even mention the prescriptions! He also didn't mention that I must keep eating gluten; of course he was aware that I'd been doing my research, but was probably more p'd off that I'm diagnosing myself! One more – on those 4 fast days I didn't eat any gluten; I've been careful now to include at least a piece of bread every day. Do you think this should be enough? Sorry, this looks a bit long! But thank you for sticking with it, you're all wonderful people and it's a wonderful place to come for newbies...