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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com 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 Celiac.com 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

kam00096

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kam00096 last won the day on June 13 2016

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  1. Lots of things for me to think about. Right now I'm back to completely freaking out that it's nothing to do with celiac and is something way more serious. Thanks for all the suggestions though.
  2. Thanks for this reply. I've been completely freaked out about it being something more serious but I've had loads of bloods done, plus ultrasounds of the lymph nodes and everything has come back completely fine. Is there anything else you think I should be pushing for?
  3. Thank you for the replies. I'm going to go back to the doctor and ask them to check my levels. Really reluctant to restrict my diet any more when I'm not even convinced it is celiac but I will if I have to. Was meant to be planning a holiday abroad (first in 10 years!) this weekend but between struggling to find decent places for gluten free (within budget) and feeling absolutely disgusting am thinking of calling the whole thing off. Can barely get up and down my stairs today
  4. Hi, I'm really struggling and would love some input from you guys (I have posted on here before... usually when I'm feeling crappy!). I had 2 sets of blood tests come back for celiac around 18 months ago. Because of the NHS being hopeless I had to go gluten free straight away and haven't been able to do a gluten challenge, so don't actually have a diagnosis, although a number of doctors have said celiac is likely. Before the blood tests I'd had a really rough couple of years with a whole range of symptoms which tended to get worse for a few months, then somewhat better, and then worse again. The main problems were dizziness, severe nausea, never going to the bathroom properly, exhaustion and muscle/ joint pain (I also have swollen lymph nodes, silent reflux, night sweats and various other symptoms). I'd hoped going gluten free would clear everything up but it hasn't at all. I'm still going through the same cycle of being ok, then ill again. For the last 6 weeks or so I've been having a bad spell and I feel horrible. I've been pretty strict about staying gluten free, I never cheat, I check everything I eat and I rarely eat out so I can't work out why I'm still sick?! Also the one or two times I know that I did accidentally get a small amount of gluten (in the early days) it didn't make any noticeable difference to my symptoms (so I still felt my usual kind of crappy but not really any worse afterwards). I'm starting to think I either don't have celiac at all or I have it and something else as well. Trouble is my docs have tested me for lots of things and have run out of patience with me now. My dad has Parkinson's and I'm worried it might be that or MS or something else which affects your whole system. Quite frankly I'm sick of being gluten free when it's not helping at all. Between the restricted diet and the non-stop feeling ill I'm scared to travel, or go to things and I'm barely managing to function at work. My spare time is spent sleeping (badly) because I'm so shattered all the time. I don't know what to do any more...
  5. You guys are absolutely right. I rarely eat out these days but a couple of big family events meant I kind of had to. I'm back to being super careful and taking it easy again now. Still dealing with feeling boaty and shaky (plus the after effects of too much pepto bismal) but at least it's nowhere near as bad as it used to be before I went gluten free.
  6. Thanks for the reply. I was really constipated for a few days last week before all the nausea started. Happily it all seems to have settled and I haven't had any more horrendous nausea for the last two days, which is a massive relief as it used to go on for weeks and weeks and I was worried it was starting up again. Still having a few 'boaty' spells but again I can handle it if it's not constant!
  7. I haven't posted on here for a while but I'm having a really difficult patch and guess I'm wondering if others have similar experiences. Basically I had two positive blood tests for celiac but no actual diagnosis (it's a long story!). I'm pretty strictly gluten free and some symptoms had improved a bit but I've still been having ongoing issues with night sweats, swollen lymph nodes etc. About 10 days ago I stupidly ate something with a small amount of barley in it. I expected some sort of reaction but for the first few days after I felt fine. Then around 4 days after I started with stomach problems which are just getting worse. The last few days I've had absolutely horrendous nausea, reflux, dizziness and other GI issues. I've also lost a bit of weight which makes no sense given my diet recently. It basically feels like my stomach shuts down and stops working. I'm back to having all the symptoms I had before I went gluten free but I don't see how this could still be from a glutening 10 days ago! Also it's weird that it's getting worse not better. My diet hasn't been great over the last few weeks and I have eaten out a couple of times but I don't think I've been glutened anywhere else. I guess I'm just worried that this is all still ongoing or getting worse despite being gluten free which makes me think there's something else causing it. The docs have pretty much washed their hands of me so I don't know what to do next. This was always the cycle I had before going gluten free - I'd be ok(ish) for a couple of months then feel hellish for a couple of months So I'm terrified that it's starting again and I'll be ill for ages now. The nausea's so bad it makes it hard to function normally and when the dizziness kicks in I can't drive. And I am really worried that the docs have missed something serious.
  8. The different advice I've had on here has been brilliant! I'm going to strip my diet right back and keep it that way for a while (I've tried it before but never really stuck with it). I'm definitely noticing my temp is funny during the day too (another reason I've been panicking about lymphoma!) but maybe it is still a reaction to something I'm eating. I was also thinking tonight that although my biopsy was clear for celiac damage they might have missed it so I guess it could still be that.
  9. Thank you! The trouble is when I actually wake up I'm frozen! I'm already sleeping with the window open and in a tshirt but I'll definitely have a think about bedding. And I do need to watch the dehydration thing... I'm bad for not drinking enough water. Although ironically yesterday I drank two litres and felt the worst I've been lol. Just out of the doctors... they were awful. Told her what I was worried about and she said 'you're doing it to yourself' (I've had one appointment with this women before today so she's seen me for a grand total of about 7 minutes!). I lost it a bit and said how was I possibly giving my self swollen lymph nodes? And she said everybody gets them and did I want to feel hers?!? I declined! She says I have thickening in my groin but it's the same both sides and nothing she would be concerned about. Sent me for a chest X-ray which is something at least so I've to wait for those results and my hormone tests. My endoscopy/ biopsy results were back and were completely normal, which is actually a bit disappointing. Firstly it means still no celiac diagnosis (which I knew was most likely as an gluten free, but thought there might have been some damage still left there). Secondly means current issues aren't celiac/ diet/ CC related which would have been easier to fix. She's not willing to rerun the celiac blood panel or check my vitamin D again as doesn't think it's connected. Am so frustrated!
  10. So I just had my worst night of night sweats yet. Up 4 times and had to change pyjamas. Also I got really dizzy and disassociated whilst driving last night which I haven't had dice going gluten-free. Doctors for me today. I'm completely exhausted and about to run into problems with work because of my attendance but I just can't do it.
  11. Thank you! I'll definitely check it out. Sweat dripping and shattered after a bit of hoovering this morning. Just want to go back to feeling like a normal 30 year old instead of about 100!
  12. Thank you! I'll definitely check it out. Sweat dripping and shattered after a bit of hoovering this morning. Just want to go back to feeling like a normal 30 year old instead of about 100!
  13. I haven't heard of that diet... I'll definitely do some research! I am wondering if I'm one of those folks who reacts to gluten-free oats as I've still been eating oatcakes pretty regularly (ironically for ongoing nausea!). Swapping to rice cakes from today!
  14. Thank you so much for this! Honestly it really does help having somewhere to offload where people 'get it'! I'm sorry you had a supermarket moment... I've had plenty of those but I would handle it better if I felt all the effort and label checking was helping. I have wondered about cross contamination or other intolerances but I guess I've been putting off restricting my diet any more until I get the biopsy results back. I do know I need to cut down on gluten-free alternative products and seriously overhaul my diet but I'm a bit disillusioned with that too as I've tried it a few times over the last year and still haven't felt great. It's interesting (and kinda reassuring) to hear that other folks have had issues with night sweats and swollen lymph nodes too!
  15. Thank you for these replies. Am hoping it may just be hormonal although that seems unlikely really. I'm so fed up of all this. I have elderly parents who are both unwell and a high stress job, and Im not sure how much longer I can deal with waking up feeling so ill for.