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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 Jmg

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  1.   I'm continuing the challenge until I see the consultant for a follow-up, hopefully within 2-3 weeks, so that I could have another blood test. By then I'll have been back on gluten for 9 weeks. I think I'd like as comprehensive a blood test as possible at that point regardless of what the biopsy says. 
  2. Hello again   Today I had my endoscopy. I chose not to have sedation, just the throat spray. I thought that I'd be happily watching the screen and taking a tour of my upper intestine, but after about 30 seconds I settled for closing my eyes and focussing on breathing!  It wasn't a pleasant experience by any means, but it was at least brief (although it didn't feel that way at the time).  If you'd asked me straight afterwards I'd have opted for sedation next time, now that I've recovered I'm less sure.  It's nice that I was able to drive myself away and be ok a bit quicker.    The GE who conducted the test didn't see any evidence of celiac in my duodenum, but she did find a small hiatus hernia and took 4 biopsies for testing.  I'm hoping to see my consultant in 2 weeks time and will stay on gluten until then in case he suggests any further blood work. After that I'm off it for good, biopsy results notwithstanding. I've got more than sufficient evidence on my skin, fingernails, mood etc from this gluten challenge for me to know that I have a problem with it whether it fits a classic celiac diagnosis or not.   Thanks as ever to all of you that have replied and helped make this process feel a little less lonely.
  3.   Thank you   I've kept a daily record of what I've eaten and any symptoms I've noticed. It's helpful, gives me a sense of control and otherwise I think I'd forget some of the weirder things I notice, especially as the fog descends!
  4. Further in to the challenge I'm finding the neurological stuff much worse than any gastro effects. On the evidence of a cross contamination glutening I experienced whilst on the gluten-free diet I thought I'd be in a lot more stomach pain, but I think that once fully back on gluten that's not the way my intolerance manifests. Depression and brain fog are back in a big way, I feel very down indeed.   Last couple of days I have a persistent muscle twitch which is driving me nuts! I've also had the first inkling of a return of the vision issues I had previously along with more of the chest pain. Still 3 weeks to go, if it stays like this I can get through it, but I miss feeling healthy and happy. 
  5.   Totally understand and your choice. However, be aware that should you subsequently decide that you'd like a firm diagnosis it may be much more difficult and painful to obtain.  This is the situation I've found myself in and I really wish I'd had the tests before giving up gluten. If you read around enough you'll see that same viewpoint made many times here and elsewhere. 
  6.   This is what I wish someone had told me at round about your age, maybe a little earlier.   Doctors earn their status but they're not infallible and no GP can know everything about every condition, it's impossible. They are all under time / cost pressures and however well meaning will naturally want to progress your case and move on to the next as quickly as possible.    No-one will ever know as much about your body as you do and no-one will ever have a bigger stake in getting the right answers. Be confident and assertive, if your body is telling you something then trust it and make sure you communicate it clearly to your Doctor. By all means take the prescribed medicine and advice but don't allow yourself to be fobbed off with something that will treat a symptom without also if possible making some progress towards determining its cause.     If your eating gluten now it would make sense to make an appointment for a test so, if it does turn out to be a problem for you,  your not doing that for longer than strictly necessary. So make that your goal for your next appointment, write down some bullet points if that seems helpful. Get the test scheduled and take confidence from asserting yourself and taking ownership over your health.   That's pretty much what I'm doing now, I just really wish I'd done it years ago as the various symptoms I've experienced have had a big impact on me.  Best of luck, hope you get the answers you need
  7. 10 days in, today I found dizziness on standing had returned along with a white spot on my fingernail. Feeling depressed, anxious and nauseous, also worrying about potential long term damage from this exercise. On the positive side I did enjoy going out with my family and ordering some food without worrying about contamination, something I'll try to do regularly over the next few weeks, so not all bad news.
  8. I'm on day 10 of my challenge and this:     is how I feel too. I try to look at it in a positive way, at least as it comes after the change in diet there's an explanation for it and that makes it a lot easier for me to deal with it. In the past I'd be thinking about anti depressants or counselling, now I know it's physical manifestation of my bodies reaction to gluten, it doesn't make me less sad or anxious, but it does help me to rationalise and deal with it   Best of luck! 
  9. Valerie from what I've read negative biopsy notwithstanding your possibly positive for 3 or maybe 4 of the 5 criteria for celiac mentioned in the video:   Signs symptoms of celiac disease Blood test Positive Biopsy DNA Positive reaction to gluten-free diet   You may be one of the 20% who don't make all 5 but still have celiac. Or as others have said you may have caught this before the intestinal damage. Have you had a follow up meeting with your Doctor to discuss the biopsy results? It could be they would be willing to diagnose on the same criteria as Dr Fassano outlines and the positive DNA and/or reaction to a gluten-free diet could get you the diagnosis. Maybe you can follow up with them first and if they feel the diagnostic route is exhausted you could then consider self diagnosing as having a problem with gluten and going on the diet regardless. That's my plan if my biopsy is negative as I've now got sufficient personal correlation of the negative effects of gluten on me.   As for family and friends, if and when it comes to it if I don't get a definitive diagnosis I'm still probably going to tell people I have celiac, as that's how I'll be living and I don't want to waste time and energy discussing the various spectrums of gluten sensitivity.   Best of luck, hope your feeling positive - it's great your finding this out now and not in 20 years!  
  10. Valerie I found this presentation by Dr Fassano really useful in explaining some of the complexities around this condition:     It's a long watch, but if you skip to 55minutes he talks about diagnosis, including the percentages of celiac patients who do not show on the biopsy. Obviously you should speak to your Dr but it may be that with a positive blood test and response to gluten you may still be diagnosed as celiac.
  11.   That explains it   It's good that your dr wants to get to the bottom of this. Best of luck with the test. Hope you get some answers. 
  12.     Dan, your post above seems a little confusing. If your GP is planning a test for you the last thing she should be advocating is for you to go gluten free! You need to be consuming gluten for weeks prior to the test. 
  13.   The consultant told me 6-8 weeks. I bargained him down to 6 through fear about if I'd make the distance, although part of me wonders if I manage to continue at this level if I should ask to go the full 8, I won't be doing this again and having put my recovery on hold I'd like as definitive an answer as possible. 
  14. I have similar symptoms. The only way you'll get that certainty you seek is to go through the testing procedure which requires you to consume gluten. That's what I'm doing right now. If you get diagnosed you'll have both every incentive and lots of support to get through the adoption of the gluten-free diet, although I have to say that any withdrawal I had was as nothing compared to the relief of symptoms. Put it this way, at the end of this gluten challenge I'm going gluten-free for life regardless of the biopsy report as my own body is telling me quite clearly that it wants no more of this.    Your still young and you have so much to potentially gain from identifying this early. It's ultimately a personal decision however and good luck with whatever you choose to do. 
  15. Few days in, have started slowly, the first sign I had was scalp being itchy, then came the anxiety (although it was difficult at first to pick up as I was anxious about doing this even when gluten-free ) now the horrible hollow depression feeling is beginning, sort of like an ache behind my eyes. Only positive is that I know now what causes it and that once this is over it should be gone.   I meant to make a list of all the foods I'll have one last time but at the moment even though I can now in theory eat anything I'm not really tempted by any gluten other than the 2 slices of bread I'm forcing down. I'd really adjusted to the new diet and feeling healthy.