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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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

Ruth UK

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  1. Hi, This is my first post here for many months, following a very frustrating time getting an officaial diagnosis of celiac disease, which was then follwed almost immedaitely by a masive OCD relapse. Yes, I have BOTH. No, the celiac disease diagnosis wasn't the cause of my OCD relapse - but I know that last summer following my 'unofficial' dx I WAS obsessive about the gluten-free diet - so succesfully that when I had first biopsy only six weeks in it came back -ve. So back to eating gluten, followed by another biopsy in Sept/Oct, which came back+ve! Consultant actually said that I must have stuck rigidly to gluten-free diet for my biopsy to come back totally -ve in only six weeks. However, what I WAS trying to say is - yes, please be careful - but please do not let yourself get so worried about cross-contamination etc that it frightens the life out of you. That's what it literally feels like when you have OCD - as though you are being frightened 'out of your skin'. It's something I wouldn't wish on my worst enemy (if I had any). It makes you feel 'crazy' (although I hasten to emphasis that is NOT actually true) and it's very hard to be happy and fulfilled when you feel constantly scared stiff. I don't underestimate the problems we face following a gluten-free diet, but I know that most of us can still have a very good quality of llife with it., without needing meds and/or therapy, which is not the situation for many sufferers of OCD. I must admit I was devastated when I got my final +ve dx, beacuse I remembered how hard the original 6-week only gluten-free diet had been. Yes, even now I get upset at not being able to eat those things I used to and eating out is a nightmare. But I know I can live a happy and fulfilled life with this - it's that that makes us 'normal' Any way, that's my little 're-introduction' over - didn't mean to be so serious:) So to sum 'me' up - I'm a 'normal' person who has celiac disease who occasionally feels 'crazy' (but isn't) because i also have OCD. THanks for reading, and take care (but not TOO much) Ruth
  2. I'm a real 'newbie' to the gluten-free diet - not quite two weeks in yet. But so far I've not 'slipped up' nor had the desire to do so (unless you include the 'malt extract' in the packet of cornflakes I finished off in the first two days - there's a hot debate going on about whether or not this is 'safe). I did go to reach for a regular biscuit at Church today - and then remembered Yes, I was a little sad, mainly because I was hungry - but I so understand the consequences - not in terms of immediate symptoms - I don't know whether I would experience those or not - but in terms of long term wellness. I'm already beginning to 'get my brain back' and I want to get to the point of getting my health back - I've not had that for at least 30 years probably longer - I'm not going to jeopardise that for the sake of a few bites of anything (not even my favourite macaroni cheese - no gluten-free prepared ones available in UK). I'm actually finding the gluten-free diet itself extraordinarily easy (probably because we can get good, fresh gluten-free bread on prescription here) - the difficult bit is the cross-contamination issues eg hubby used icecream scoop to fish icecream out on top of fruit strudel yesterday - so I declined any in case it had touched the pastry - received some rather odd looks from that one! Guess I've some way to go on the education part yet. Also eating out seems practically impossible here - extremely little awareness re gluten-free.
  3. Iron Supplements And Insomnia

    Ken, If I remember correctly magnesium is supposed to be brilliant at helping the body to relax, and therfore sleep. I used to be really badly troubled with restless leg syndrome - constant sleepless nights! - - triggered, I believe, by my long term anemia, which was in hindsight due to undiagnosed celiac disease. However, i started taking Calcium with magnesium tablets for a while - total clear up of RLS (despite continuing anemia) and only a few sleepless nights. Hope this helps!
  4. Hi, Kaiti, Thanks for yr reply. I have three main reasons for wanting a biopsy: 1. Need to know for certain why I've been anemic for so long - if no damage to villi (after presumably 25yrs + of having celiac disease) then why am I anemic? 2. In UK we can get gluten-free food on prescription - saves a LOT of money, which I need to do because I'm a full itme student with exceotionally limited funds 3. I have two teenage children. If I get a +ve biopsy our drs will most probably agree to giving them blood tests for celiac disease; no biopsy (or even perhaps a -ve biopsy) and they will probably be very reluctant to get them checked out. (Actually there's also a 4th reason - if I get a +ve biopsy I will know for CERTAIN I have celiac disease and will be far more likely to stick to gluten-free diet! Otherwise I think I might be tempted to cheat, particularly if I get no relief from the anemia.) As it looks as though I've had celiac disease since I was a teenager I'm prepared to wait a little while longer to get a definitive answer. I do realise there are risks involved, but I think on the whole I'd rather have a biopsy. Also having to wait a while means I'm getting REALLY prepared for gluten-free already. Have tons of info, thanks to this ite and others:)
  5. Hi, I, too, am from the UK and have just received +ve blood tests for celiac disease. However, as others have mentiond, I'm not on a gluten-free diet until I've had my biopsy. Actually waiting for appoitment with GE consultant at present and will hopefully have biopsy after that. Because I found out that I had to be eating gluten in order to get +ve biopsy I've actually added more to my diet - and now have gastro symptoms, having previously had only 25+ years worth of iron deficiency anaemia! I really WANT to get started on a gluten-free diet because I'm sure it's going to make me feel so much better, but will probably have to wait weeks! Hope you get on OK getting a blood test from yr dr - at least if that and yr biopsy come back +ve you will be able to gluten-free food on prescription, so free if you get free prescriptions, but if not only
  6. HI, Michael, Is your GP now prepared to send you for blood tests and an endoscopy/biopsy, or do you know of a GP that will do this for you? It's just that it would be really rough to get yourself all 'glutened up', only to find no GP will refer you. (I suppose the alternative is to go 'private'?) I'm still waiting for my GE consultant appointment and expect to wait awhile after I've seen him/her before the biopsy will happen. (Been told by friend who works at the GE clinic it could take as long as 17 weeks to see consultant, but GP has promised to chase it for me if I don't hear within the next few weeks.) So I guess my answer is : it looks as though it may take a very long time - definately NOT days, definately a lot of weeks, and possibly months. Sorry not to have more positive news! And keep as well as you can in the situation that faces you:)
  7. Michael, I am honestly NOT stalking you. It's just that it's great to have someone from the UK here who is obviously very well read! May I be cheeky enough to enquire what your profession is? (Obviously, don't reply to this if you don't wish to.) I may have already mentioned this in another post to you, but my lad has ADHD, Asperger's Syndrome and dyspraxia, and in connection with this I would agree with you that the work taking place at the ARU is VERY interesting. My son tested +ve on their tests for 'gluten and casein insensitivity'. No doubt will speak to you again:)
  8. Hi again, Michael I've learnt lots from this board - but thought I'd let you know of two UK ones which dicuss most things (if you don't already know about them). Busiest one, although not 'easy to use' is http://members2.boardhost.com/glutenfree/ Second has a very knowledgeable GP on board (very helpful - I believe her children have celiac disease): http://health.groups.yahoo.com/group/uk-coeliac (It would appear that both these boards were opened when the CUK one was closed down. People need info so much that if it's not supplied by the 'national support organisation they find their own way to get it! Only trouble is some, and I only mean some, of the info obtained that way may be incorrect.) Will keep coming here to get the latest 'general' info and news - but it's nice to have a 'local' place to go to get 'local' info re gluten-free foods and restaurants etc. (And to whinge about local lack of awareness re celiac disease!)
  9. I'm glad this post has come up again - I visited one of the sites recommended by 'FreyaUSA', and was it interesting! My son has ADHD, Asperger's Syndrome and dyspraxia, and was tested a while back for 'gluten and casein sensitivty' (re 'opiate' theory of cause of autistic disorders), and came up as significantly +ve for 'gluten' and marginally +ve for casein. However, because this is 'new' research I couldn't get any help from my GPs, and so didn't action gluten-free/CF diet. As soon as I get my biopsy result for celiac disease (blood tests are +ve) I'm going to get both my children checked out. I really do think undiagnosed celiac disease is responsible for a lot of 'our' (my son's and my own) physiological and neurological problems we've experienced. Only time (and further testing) will tell if I'm right. Will try to remember to keep you updated.
  10. Hi, Gapspan, I've just replied to one of your posts in one of the other 'topic areas'; can't remember which! I am just beginning to find out how little the Drs here in UK seem to know about this disease. I've had chronic anaemia for many years (mentioned in other post) and NO-ONE ever checked me for celiac disease (although at one point I did have a form of 'absorption' test where you have to eat toast and butter and then blood tests are taken - came back -ve), until I was referred to the Haematology Clinic for the third time in 20 years. At least they got it this time! The Haematologist this time wasn't sure if I should go gluten free before I have a biopsy! Decided I should leave it for a 'couple of weeks' and then go gluten-free if I hadn't heard anything! Obviously doesn't know that a biopsy is pretty pointless if you've been gluten-free for a while. I'm going to try and find the book you've mentioned. I'm trying to find out all I can about this 'disease'. (Just to add a thought I've just had - why on earth don't they make testing for celiac disease routine? It could actually save the NHS money because the 'side effects' of celiac disease wouldn't then happen - ie some cancers, a lot of osteoporosis, a lot of unnecessary testing for 'other causes' of symptoms such as 'gastro problems' and anaemia, etc etc. Plus there's also the cost to the nation as a whole of all the time taken off 'sick', when ONE blood test (plus a fairly simple procedure, if necessary) would prevent all this!) I think I might already be turning into a 'campaigner'on this issue! (PS Is there no chance of your seeing another doctor in your area who might be more sympathetic/pro-active? I know it can be really tough when drs don't follow through on what you need. I'm in the fortunate position of being able to choose who to see out of about 10 drs at a local 'health clinic' - the one I choose to see depends on what I'm going to see them for. So far I've only come away 'disappointed' a few times, rather than many times:)
  11. Biopsy

    Hi, 'Gapspan', I, too, am from UK - just received +ve blood tests for celiac disease from Haematologist following VERY long term (almost 30 years) iron deficiency anaemia. Been referred to GE clinic (could take up to 17 weeks!) and dietician. Haematologist mentioned I 'might need a biopsy', but wasn't sure if I should go gluten free beforehand or not! Because I'm really desparate to get a +ve biopsy, I've actually 'upped' my gluten intake! Probably a BAD idea, because now I have 'gastro' symptoms too. Mind, that's probably 'proof' in itself that I have celiac disease - but as you said in your post, may be it's actually dangerous?? I want a +ve biopsy because otherwise I still won't know why I've been anaemic for so long and why I have all the accompanying 'symptoms' that go along with anaemia. And at last I will be able to start getting myself better. (Also can't get gluten-free food on prescription without +ve biopsy - and I really need to be able to do that! And I want my drs to ckeck my children, and I'll have more 'ammunition' to convince them with if I get +ve result.) I think my best plan will be to go 'low' gluten until I know exactly when biopsy date will be and then pile the gluten on for a few weeks before. Knowing the NHS it will be several weeks/months after I see the GE before the biopsy takes place. Mind, as much as I hate the long waits that happen sometimes, I do LOVE the NHS - it's (mostly) free and when you need care IMMEDIATELY you usually get it - at least my husband (re acute pancreatitis) and my son (re kidney problems) did. Sorry - I'm 'waffling' as usual! I should be studying for my degree now, not writing an essay on the benefits or otherwise of the NHS! All the best Ruth
  12. I Tend To Need A Lot Of It

    Hi, I'm experiencing EXTREME fatigue at the moment (just recently been dx'd with celiac disease following blood tests and awaiting biopsy, so can't go gluten-free yet). My kids get really fed up with getting home from school to find me sleeping on the sofa! I'm a fulltime mature student but when I don't have to go to Uni for lectures I find it so difficult not to sleep during the day - consequently I'm falling so far behind with my coursework etc! I am being granted 'concessions' but I still have to get the work done eventually - and at the moment trying to write reports is beyond me. Really need my biopsy quick, and hope I 'repair' quickly after going gluten-free - it's my final year come September and I really need to get a good degree. Can't really afford to retake a year at my age.
  13. Survey

    Celiac : +ve blood tests, awaiting biopsy Diabetes: No Sex: Female NB Brother had Type 1 diabetes I have been diagnosed with hypoglycemia (which some literature says predisposes to Type 2 diabetes). Hope you get all the responses you need! All the best Ruth UK
  14. Back On Gluten

    Hi everyone, I'm a newbie from the UK here. Was 'diagnosed' with celiac disease by my haematologist two weeks ago following more than 20 years of refractory iron deficiency anaemia. So far I've only had the blood tests and am waiting to have the biopsy - so have not gone gluten-free yet. I am SO desparate to have the biopsy come out +ve that I have actually increased my intake of gluten containing foods - and for the first time in my life have begun to experience 'gastro' symptoms, so I do understand where you're coming from! It is really HARD to be making yourself ill just so a test comes up +ve. (In my case I may have to wait up to 17 weeks before I even see a GE consultant, then probably another wait until the biopsy can be done - a VERY long wait but it's not costing me a penny thanks to the NHS.) I myself need a +ve biopsy for 2 reasons - 1. If I don't have any damage to my villi why am I anaemic - 2. The NHS only officially diagnose celiac disease if a +ve biopsy is obtained - which means that if I decide to go gluten-free without it I have to pay full cost of all gluten-free food myself - which given the exorbitant cost of gluten-free foods plus the fact I am a fulltine mature student is a no-go (we can get some gluten-free foods on prescription in UK if celiac disease is diagnosed, thus saving a lot of money.) Whimsygirl, you mentioned itching - over the past few months I have had really bad itching in various parts of my body - sometimes with a slight rash or a few spots, other times with no discernable marks whatsoever. The past few days since I've upped my gluten intake it has been really bad - I just seem to itch all over (also I am so much more fatigued - bad before, but now really extreme) - I can't see that there's any other factor than the gluten that's involved. I guess I'm going to have to reduce my gluten intake as much as possible until I know when my biopsy is likely to be (I've read that just two slices of bread a day should be enough to ensure +ve biopsy if celiac disease is present) and then up it again. I just can't afford to feel so completely drained as I have an enormous amount of coursework to catch up with plus exams due soon (and a trip to USA in about 4 weeks!). This post is becoming an essay so I'll just wish you all the best for now. Ruth