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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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere 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 Pandoranitemare

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    • Birthday June 21

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    1. Pandoranitemare added a post in a topic Blood Test Results   

      Thanks for that Bubba's Mom, certainly very informative reading. I have to be re-tested in 3 months, so that will show if the iron has made any difference. I guess I have waited this long, I can wait a bit longer....It took me years to get diagnosis of the other things I have, so I guess I am used to the whole process of going through banging my head against a wall for a long time first but I will definitely push the point if the iron issue has not resolved at my next appointment based on the article you kindly found, so thanks very much for that.

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    2. Pandoranitemare added a post in a topic Blood Test Results   

      You are right about my family history, I think the same too, I would add that my daughter sometimes displays symptoms which could be gluten related too.
      Am I right in thinking that if there is damage, that the iron pills won't help if absorption will be an issue?
      At the moment I am thinking that if the iron does not help then I will have good reason to ask for further testing....

      I hate being in this position, as I already have a few health issues, and just feel like I a trying to find another one! My doctor is pretty good, but sometimes I do wonder if she thinks I sit at home looking up things to find wrong with myself!, as I am unfortunate in having M.E (C.F.S) which is one of those things which can't actually be 'proved' by a medical test other than elimination of other things, Ehlers Danlos type lll (hypermobility) and (reactive) depression as a result of living with the pain and limitations of the other 2 conditions.

      So, pushing for further investigation just feels like I am looking for another condition to add to my collection as it were (although she has already added IBS!) but if the iron does not work I would have a reason to ask for further investigation....
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    3. Pandoranitemare added a post in a topic Blood Test Results   

      Thanks for your replies....
      It was just bloodwork which was negative. There has been no suggestion of a follow up endoscopy.
      With regard to ulcer... actually my mum was found to have low iron last year, it turned out to be due to an ulcer which turned out to be cancer (inoperable- and now terminal) So I would be lying, if that was not at the back of my mind!
      I guess all I can do just now is wait and see if the iron pills change anything when I get re-tested in 3 months. If it does nothing then obviously there is another issue, if the iron fixes the problem, then I will just need to be much better with my diet than I though I had been, and really make sure I load up on iron rich foods etc, as there is no way I am going back to eating meat!
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    4. Pandoranitemare added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Blood Test Results
      So according to my test results I am negative for celiac but.... I am very low in iron. This surprised me very much as although I don't eat meat (I do eat fish) I am a bit of a health nut, and eat masses of green leafy veg, dried fruit (all the high iron ones like raisins, figs, prunes etc) beans such as soya beans and kidney beans and I take multivitamins and use protein powder which also is loaded with added vitamins and minerals.
      The doctor has put me on iron pills - according to the bottle the 'normal dose' to treat anaemia is 2 tablets per day, I have been put on 3 per day! It's not like I am large, or heavy, I am 5ft 2" and wear a UK size 6 clothes! so there is not much of me to need a bigger than normal dose.
      I have to go back in 3 months for another blood test to see if that has fixed the problem.
      I was also given some info on Irritable bowel syndrome and some Colpermin capsules to try, for my stomach/bowel symptoms.

      The thing is I don't know now whether to go back to being gluten free now or to wait until after the 3 months on iron, because if I stay on gluten and taking the iron does not resolve the problem (if it is an absorption issue), then it gives a genuine picture of things. However if I take the iron AND go gluten free at the same time, then the doctor will just put the improvement down to taking the iron alone.

      It also is nagging at the back of my mind that I had gone gluten free for a week or so, and did a 6 week gluten challenge before the blood test, and I worry that maybe I had not eaten enough the first thing my doctor asked was if I had been eating gluten at the time of the test.
      I don't have the actual results (as UK GPs are not generally happy about actually handing over the numbers).

      My feeling at the moment is just to take the iron (and colpermin) and see what happens to my iron level. It would perhaps explain why |I have been feeling even more exhausted than normal!
      Has anyone else had similar results/ low iron etc?
      • 7 replies
    5. Pandoranitemare added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Blood Test Question
      I finally got a can appointment to get my test results tomorrow... Whilst it is a relief that the wait is almost over, my anxiety is really hitting the roof now!
      What I am wondering is, what do they look at in a celiac blood test?
      As I have been asked to come in to discuss the results, I am assuming the test was not 'all clear'. So I am wondering what it could have shown up, if anything? Obviously it could be positive for celiac, but is there anything else it could show up that may warrant my being recalled that may not be celiac?
      Maybe I am just clutching at straws here, but I was wondering if the test covers anything else, or is it most likely that a recall means a positive result for celiac?
      I know I will have my answer tomorrow, but I am trying to mentally prepare for what may/or may not happen as best I can.

      Can anyone else share their experience or shed any light on how broad the testing is (in the UK). If you had the test, if you got recalled, and what happened next....
      I think I would really be going nuts without this forum :-)
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    6. Pandoranitemare added a topic in Gluten-Free Sports and Fitness   

      Gluten Free Protein Powder/bars (Uk)
      It seems the UK is not so geared up with gluten free stuff, especially when it comes to protein bars/powder etc.

      I have found that Holland and Barrett own brand protein powder is gluten free (and states as such on the label)

      I also read somewhere that Luna bars gluten free. I have found a UK supplier here, but there is no nutritional info about those specific bars so I don't know if they are the gluten free ones. Can anyone identify them and confirm if they are?

      Also, if anyone is ok with small amounts of oats then Trek bars have 11-12g protein per bar, and all natural ingredients.

      I have just ordered some Pulsin Maple Peanut Protein bars which are vegan, gluten free, all natural etc and has 12g of protein per bar .
      In fact Pulsin have a lot of gluten free stuff on their site including all their protein powders: hemp protein, pea protein, soya and whey.
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    7. Pandoranitemare added a post in a topic No One Thinks It's A Big Deal....   

      Thanks so much for the supportive replies It really helps to know that others have faced the same sort of thing.

      I have finally got a cancellation appointment, so will be getting my test results tomorrow! I would be lying if I said I was not very worried about what the day may bring, but I do feel a bit more positive about the fact that I have support here, if nothing thank you all for that, you have no idea how much it means to me
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    8. Pandoranitemare added a post in a topic Can I Determine Gluten Allergy By Changing Diet?   

      I am in the process of being tested myself.
      If you were to put her on a gluten free diet and she improved, it may well indicate that gluten is a problem. However, if you wanted to pursue medical testing (blood tests etc) you would then need to reintroduce gluten and put her on a 'Gluten challenge' of quite high levels of gluten for some time before testing, and there are many conflicting views on how much gluten and for how long is required to ensure accurate test results. Not only that reintroducing gluten after being gluten free can be unpleasant in terms of symptoms.
      Personally, I decided to try going gluten free to 'test the theory' and after only one week, yes I started to feel better in as much of some of the immediate symptoms subsided (gurgling stomach, gas etc were less after a couple of days). I stopped after a week when I read that it was necessary to be eating gluten to get tested. I still had to do a 6 week gluten challenge, which was not nice to do and held up the diagnosis process.
      In general, it seems prudent to continue to eat gluten until all medical tests you wish to pursue have been completed, and you are satisfied with either a diagnosis, or that you are sure going gluten free is the solution and you do not want to go back to gluten at all.
      I am sure there are people here with much more experience who will have more to add, this is just my view as someone going through being tested.
      Good luck, and I hope your daughter feels better soon.
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    9. Pandoranitemare added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      No One Thinks It's A Big Deal....
      People in my life don't seem to think that the prospect of my having to go gluten free is any sort of a big deal...It's like they think it will be as simple as deciding not to, I don't know...drink tea for a week. I don't think they get just how huge the change would be, how gluten pervades so many things and what a learning curve it is, and why I am so worried about the fact I have been recalled following the blood test. I only have some understanding from being on this forum, so I feel a little better informed.
      I won't have a definite answer until see my doctor (who has been on holiday, so it is taking forever!), and I am worried sick since I have been called back I am prepared for the the test results to be positive (as I was told they would not call me if they were clear). However, everyone just has this attitude that it is no big deal if it's positive.

      Am I just being over sensitive? I just want to get my results so I know what is going on, but I am worried that if it is positive that people are going to carry on treating it like it is 'nothing' and not get exactly what going gluten free means...
      Has anyone else had this sort of reaction?
      • 7 replies
    10. Pandoranitemare added a post in a topic Finally Seeing A Dr., Suggestions?   

      It sounds like you are on the right track. Definitely keep on eating gluten and push for the blood test.
      Good luck.
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    11. Pandoranitemare added a post in a topic Gluten Withdrawals   

      Pasta is one of those foods that has a pretty good range of gluten free alternatives which are quite readily available even in supermarkets (and not too horribly overpriced compared to some gluten free foods) . It looks like pasta, cooks like pasta, and personally I think even tastes pretty much like regular pasta, so there is no need to feel like you are missing out too much.
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    12. Pandoranitemare added a post in a topic No Weight Loss, Undiagnosed, Help!   

      I am by no means an expert, as I am still on the road to diagnosis....but I just wanted to say that decided to 'test my theory' and went gluten free for 1 week, and as a result had to go on a 6 week Gluten Challenge, and essentially eat as much gluten as I could stomach for 6 weeks before my doctor could then do the blood test.
      Everything I have read here, and my own experience suggests that it is important to continue eating gluten until a diagnosis is reached.
      Right now I am waiting on getting my blood test results, but am still having to eat gluten in case any further tests are needed, if I were to go gluten free now, I could end up having to do another gluten challenge, and delay my diagnosis even further if I need any more tests.

      I hope you get some answers soon, good luck.
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    13. Pandoranitemare added a post in a topic I Can't Wrap My Head Around This...   

      Thank you all so much, your replies have made me feel so much better
      I made the appointment to get my blood test results ..but as my GP is on holiday I can't get the results until the 24th of April! I will be trying for a cancellation appointment the week before, so fingers crossed though.
      In the meantime, what you have all said has made a lot of sense, and helped to put things into perspective for me. Whilst I will continue to eat gluten (just in case of any further tests...I don't want to jump the gun and go gluten free and have to do another gluten challenge) I have been feeling the effects of my over indulgence, and I know I need to scale thing back a bit.
      I still have a few gluten treats I would like to have before 'D Day" but maybe it is good that I have some time to think about the whole process and most likely accept that it is the gluten which is making me sick and that I need to take this time to say goodbye to it...
      It means a lot to know that others have been through similar, and come out the other side, healthier, stronger and better for being gluten free
      Thank you!
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    14. Pandoranitemare added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      I Can't Wrap My Head Around This...
      Essentially my issue is this...
      I did the gluten challenge, and had my blood test, now I am having to wait till after the bank holiday weekend to make an appointment the doctor has asked me to make to discuss the results. I am expecting the worst, as I was told I would not be called in if they were normal....So I sort of feel like I am on a 'gluten count down'. I don't want to stop just yet in case they want to do any further tests (which would require me to still be eating the stuff), but I feel my gluten eating days may well be numbered....
      Whilst I was doing the gluten challenge I hated it, and only ate what I had to. I generally am quite a healthy eater, yet yesterday I was compelled to get a Chinese takeaway, I knew it would make me feel horrid, and its something I would only eat once in a while, but I felt like I had to get one in maybe before it was off limits forever!
      The same compulsion made me buy a bag of those soft, fresh cookies from the in store bakery at the supermarket at the weekend.
      I suddenly feel like I need to have 'just one more' of the things I do like, that maybe I only eat occasionally... because there is some deadline looming which means I will never have those things again.
      What I can't get my head around is the fact of one potentially one day very soon a lot of foods I have been eating are likely to suddenly be off limits. It's the same food, and all that will have changed is knowing what the cause is, as opposed to guessing and actually having a name for the reason. It is somehow driving me to make myself feel terrible in trying to have the things I enjoy one more time all in a short space of time....and of course I am aware that I am also likely to be causing more damage with a gluten overload, as it is way more gluten than I would normally even have, as my diet is normally not even that high in gluten!
      I am being an idiot...and I know it, but I am finding it hard to be rational....
      • 7 replies
    15. Pandoranitemare added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Family Testing...
      I recently visited my parents and their diet is extremely high in gluten. I am still eating gluten, as I am waiting on getting my blood test results and don't want to stop in case I need further investigation, but after 2 days with them I felt even worse than usual, which I think was due to consuming even more gluten than I normally would. My whole body felt bruised, and my skin was hypersensitive as if I had sunburn, but with no redness or rashes, and even my normal fatigue was totally overwhelming!

      My mum was tested a while back for celiac (blood test) it was negative. However, she continued to have symptoms such as bloating, gas etc and I just found out both her and my father have been suffering from severely itchy rashes, mainly on the lower leg area which comes and goes with no obvious cause, and has proven stubborn to treat, other thsn subsiding and reoccurring of its own accord.
      Sadly my mum now has a cancerous stomach ulcer which is terminal (apparently it is in a very unusual place for an ulcer, according to the doctors, which makes me wonder).
      When my mum mentioned the rashes, I tried to suggest that it may be linked to gluten, combined with the other symptoms she had - but she is convinced that as she had a negative test it can't be, and will not even entertain the idea. I know she has a lot to deal with, but she mentioned a few times how bloated she was, and is now blaming the cancer, but she did have the symptoms before it, and whilst she feels she does not want another problem, I think if it is gluten then at least it is one she can solve and make her time more comfortable.
      Also my maternal grandmother had a lot of problems with diverticulitis, so there is a lot of family history with stomach issues.

      If my test comes back positive, I know I will not convince her to get retested, and I am dreading the idea of suggesting testing to my brother, as I can't imagine it will go down well (he is very stubborn and 'loves' his food!) He has recently gone on a diet as he is substantially overweight....if I threw this at him, and he thought he would maybe have to cut even more food he enjoyed, well to be honest I just don't think he would even get tested.

      Then I have a daughter in the middle of GCSEs. I don't really want to dump that on her just now. She is at that age where she wants to go out with her friends and eat pizza and be like everyone else, not have to be different if it turns out she is affected.

      I know I am jumping the gun a bit, but I can't imagine the doctor wanting to see me about the test results is going to be 'good' news, since I was told if it was clear they would not contact me at all....The wait is killing me, and my brain is working overtime thinking of the things I may have to deal with.

      Sorry for spinning out a bit, but insomnia strikes and so does the dreaded case of the 'what if's'...
      • 3 replies

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