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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 nickra

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    1. nickra added a post in a topic Vce - Video Capsule Endoscopy   

      My consultant could tell from looking during the biopsy that I didnt have ceoliac. I think sometimes it can be totally obvious one way or another - but in most cases they need to check with the biopsies.

      he still did the biopsies to make sure obviosly (I didnt go through all that for him to guess!!!!)

      I saw an endoscopy on the telly (city hospital, London) where he was a definate ceoliac and the dr could tell for sure, just needed the biopsy to confirm - which it did.

      I have no idea how they can tell...just looked like pink wobbly stuff to me

      Fascinating to hear about the new procedure, would love to know how you get on.

      Cheers, Nicky
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    2. nickra added a post in a topic Endoscopy   

      glad your result was normal - i see my consultant again in august so time to get on with stuff until i get results


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    3. nickra added a post in a topic Endoscopy   

      did you sleep much after it?
      the nurse told me to lay down and that i would fall asleep soon
      10 minutes later i was sat up watching tellky because i was bored and another 20 mins later i rang for the nurse and asked if i could go home

      maybe i am a freak patient

      ps - i drooled, gagged, spat, wriggled and basically totally freaked out - i dread to think what happened on the bits i cant remember...
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    4. nickra added a post in a topic Endoscopy   

      hmmm, i can see why you might think its in my head - as you were put out completely i think we obviously had very different experiences. i wasnt given a choice about it - but they did tell me that some people need more sedation than others. however i know for sure it is not in my head.

      OK - please accept my excuses to anyone who is a wee bit squeemish, i will try not to be too indepth but, i can remember lying there - gagging on the tube and hearing the consultant saying "open" and "close" apparently this is where they open and close the tube where the knife is that takes the biopsy.

      when i said i can feel where they took the samples - i dont mean specific spots where i think each bit was taken - i mean i can tell my insides have been jiggled with. i can still feel it now - its not painful, but has been quite uncomfortable for most of the day (didnt stop me going shopping and ordering pizza though - so cant be that bad - lol)

      also - i should have mentioned before - i had my biopsy to conform that i dont have ceoliac, not that i do. my consultant found some areas higher up (where the stomach joins the bowel i think) he took some extra samples from here because he found some bleeding or something - so that may also explain a difference in our experiences.

      it has been a wierd day - my memory this morning was complete - i was able to remember every last detail - and the nurse was surprised that i was able to recount everything to her about what had happened. but my memory has faded throughout the day - there are now big blank bits. i cant help wondering if in a couple of days i will have forgotton everything!!!!

      i hope we can help put a few minds at rest - like you say - once youve had it - it really is ok
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    5. nickra added a post in a topic Endoscopy   

      i had my endoscopy/biopsy this morning.
      its obvious that each person can find it quite different to another.
      i was sedated but i remembered every bit of what happened and i did not sleep at all afterwards. i can feel where they took the biopsies from - which is kind of wierd

      as today has gone on - i am forgetting more and more about the procedure - it is very hard for me to explain
      i can remember not liking it and being convinced that i had not been sedated at all - but it is now apparent that i was as i am losing my memory of it.

      i was very nervous and came on here yesterday to try and console myself - celiac3270, you are so right - it only makes you worry more. if anyone is on here looking for info about the endoscopy and how they will feel - i would like to reassure you. please dont worry - the 10 mins or so you will be in theatre is a very tiny amount of time out of your life. most people find it painfree - but some dont (ie ME) but even if thats the case its not the end of the world and compared to pain i have been suffering for the last few years - its really not that bad.

      i wont pretend mine was painless and worry free - it most deffinatly wasnt - but the relief i felt afterwards was well worth it - now its done and i can get on with trying to get healthy. the procedure is over very quickly and with hindsight im actually quite pleased i wasnt fully sedated - because i know what they did to me instead of being in the dark.

      all the best to anyone awaiting their biopsies - you'll be fine
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    6. nickra added a post in a topic Endoscopy   

      thanks for everyones help on these pages
      my biopsy is tomorrow and im so nervous - ive read different accounts on here, some people saying it was not nice, but most saying it was painless and no problem
      i hope mine is the latter!!!

      well, i guess theres only one way to find out, i just want to get it over and done with.

      cheers everyone
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    7. nickra added a post in a topic Dr Said Its Not Coeliac...   

      thanks all for the help and advice,
      my doctor is being reasonable about it - he has not ruled out coeliac and will do the biopsy to check - but he is going to do lots of other tests as well because he is convinced it is something i picked up while travelling. what he is saying makes sense and i did get very sick while in Bali, but having had the positive blood test it just doesnt add up

      i know that my body doesnt like food - its not just gluten though, my system doesnt like anything in it. i have to not eat at all to feel well the doctor said i have too many of the bacteria (that we all need a little of) in my gut and so when i eat, it over reacts and makes too much air - or something like that...

      did anyone else find that before they went gluten-free all foods upset them or just foods containing gluten?

      thanks for the link to recommended doctors, but i am in England bit far to travel really - lol
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    8. nickra added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Dr Said Its Not Coeliac...
      Just wondered if anyone knows if it is possible to have a false positive blood test?
      My GP tested me positive for coeliac, but when i saw a specialist to arrange a biopsy he said he doesnt think it is coeliac.

      he said it may have been a bug i caught while i was travelling in indonesia 2 years ago...he also said i am too healthy to be coeliac...

      anyone else experience this kind of thing? or know about false positive blood tests?

      • 5 replies
    9. nickra added a post in a topic Symptoms - Bone Loss? Aching Joints...   

      Hi, Thanks so much for that info - I really found it helpful and will look into the things you suggested.

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    10. nickra added a post in a topic Testing When Gluten Free?   

      i find that because i have such a quick reaction to gluten i have to eat really fast because once i feel poorly i dont want to eat anymore and i have to throw away the food and then a few hours later im starvin again!

      if i eat too slowly i get sick before i even finish the meal - what a bugger that is???
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    11. nickra added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Symptoms - Bone Loss? Aching Joints...
      Have read a bit about bone and joint problems relating to celiac disease, does anyone know more about this?
      I have severe back, shoulder, leg problems that cant really be explained. i was wondering if it is just another sympton or am i guilty of thinking i have everything i read???
      • 4 replies
    12. nickra added a post in a topic Testing When Gluten Free?   

      lol - are you havin a laff?
      i think im the oppositte - my belly is always hungry, although at times when i have been really sick, my body has just repelled all thoughts of food, which is kind of wierd sometimes, but always makes me feel so much better!

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    13. nickra added a post in a topic Testing When Gluten Free?   


      lol - I know what you mean, it is kind of twisted that the doc is telling me to eat stuff that is bad for me!

      I try to see it like i have the best of both worlds - for now i get to eat everything and anything i like (and believe me i am really going for it with some of my fave stuff) and then in the future i get to be all healthy and feeling well too!

      I could look at the negatives, like at the mo i'm really sick and in the future i will be on a restictive difficult, pain in the backside diet, but ive always been more of an optimist and besides, what good would negative thinking do? bugger all really!

      Well, i have to go to work now, i dont eat before i go in case i get sick, so will be starving later

      all the best to all of you
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    14. nickra added a post in a topic Testing When Gluten Free?   

      I'm waiting for my biopsy and my doctor advised me not to start the gluten free diet until after the test. I have already had a positive blood test, but want to make sure.
      It's a nightmare situation, knowing that cutting out gluten will probably make me better, yet not being able to do it. To make it worse I got a letter from the hospital this morning saying my biopsy wouldn't be for another 12 weeks!!!! yes 12!

      I'm desperate to go on the diet and start feeling better (hopefully) but I have read that you can do more harm than good by going gluten free and then switching back again - something to do with the bowel only being able to mend itself so many times before it becomes so damaged it cannot cope.

      anyone know how true this is or have any experience with going on and off the diet? your experience and knowledge would be helpful and greatfully received

      Keep it up everyone...
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    15. nickra added a post in a topic Help! A Sick Celiac!   

      It's so nice to hear someone being so supportive, I don't even tell people about my condition for fear of bad reactions!
      As regards to how long it takes to get sick, I know within half an hour - sometimes before ive finished the offending meal I know that it has been bad for me. It is a real pain because I cannot come off gluten yet as i am waiting to have my biopsy and dont want to give a false negative result.
      With food poisoning, as mentioned in a previous post, it is very possible for only one person to get it even if eating the same dish as 10 other people. this is because the bad bacteria can be so miniscule that it is just one dot on one persons plate. so it comes down to pot luck as to who gets it!
      I would definatly get your girlfriend checked by her doctor if you are still worried. its always best to seek medical advice and they can also keep a record of the illness history, although ive heard this works differently in the states to how it does here in the uk.
      all the best to both of you
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