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Coeliac

Discussion in 'Other Health Conditions and Diabetes' started by amberzak, Aug 13, 2014.

  1. amberzak

    amberzak Type 1 · Well-Known Member

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    Looking to connect with people who are type ones and coeliac. I'm waiting for the stomach biopsy test at the moment.
     
  2. Engineer88

    Engineer88 Type 1 · Well-Known Member

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    Yep, Hey how you doing :)
     
  3. robert72

    robert72 Type 1 · Well-Known Member

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    Hi, same here. Hope the biopsy goes OK. They gave me a big sedative for mine and I don't remember any of it ;)
     
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  4. JANROU

    JANROU Type 1 · Well-Known Member

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    Hi I have both, diabetic since 1990, coeliac confirmed after biopsy in June this year. When's your test due?
     
  5. amberzak

    amberzak Type 1 · Well-Known Member

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    I spoke to the doctor on the phone today. They have 'strong clinical suspicion' of coeliac based on a blood test but because I stopped eating gluten she wants me back eating gluten for 6 weeks, then she will do another blood test. I'm tempted to go private for diagnosis to be honest.
     
  6. robert72

    robert72 Type 1 · Well-Known Member

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    Unfortunately, you do need to eat gluten to get a positive test from the biopsy
     
  7. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    Hi 23 years type 1, then diagnosed with coeliac 2 years ago, I had two endoscopies, because they didn't do a biopsy the first time :rolleyes: I also was put right out and didn't know a thing until I woke up.:) Unfortunately you will need to eat gluten, otherwise it could come back as a false negative.

    Good luck and best wishes.
     
  8. amberzak

    amberzak Type 1 · Well-Known Member

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    Yeah. I have been eating gluten. Made the mistake last night of eating three wheatabix in one go. Started throwing up. My doctor said to reintroduce it slowly.

    I can feel the brain fog, you know? And tiredness. Headache. Stomach pains. I hope it doesn't take too long to sort it all out.
     
  9. robert72

    robert72 Type 1 · Well-Known Member

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    I used to be able to manage once slice of bread, but 2 would make me throw up - so maybe keep it to a minimum. Sorry you have to go through all this again to get a diagnosis. They left me for a whole month after biopsy before telling me I had coeliac :mad:
     
  10. Fishtoo

    Fishtoo Type 2 · Well-Known Member

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    I'm a coeliac and a doctor....went through a biopsy to prove 20 years ago...( no sedative because they said i was medical and wouldn't need it...Hah! docs are human too lol!) However now if you have a suspicious blood test , in New Zealand I would advise that there may be no need for a biopsy....if you have been off all gluten for some time and symptoms have fully resolved...then self test by eating lots of gluten for a day or two as see if symptoms return...if you think it might be just a wheat allergy, then test with barley instead of wheat...it only took me 2 slices of wheat bread to prove that I was a coelic, but the biopsy 2 weeks later was still positive...I had lost 20kg by then...apparently it can take many months for the bowel to fully heal in severe cases...but discuss with your doctor and do whatever your doctor suggests...I'm just saying that we do not always do a biopsy on everyone in NZ.....
     
  11. Ladybird1

    Ladybird1 Type 1 · Active Member

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    Hello I've been type 1 for 52 years and just been diagnosed with coeliac disease in December last year. I had blood tests and then a gastroscopy and a colonoscopy. I am still waiting for the dietitian and diabetes dietitian to get their act together and see me. I had a blood test to check my vitamin D level and it's very low, so now waiting for yet some more tablets to take for that. I was shocked at first at the diagnosis but then thought ,yes another one for the collection ;) Hope everything goes well for you
     
  12. anna29

    anna29 Type 2 · Well-Known Member
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    Blood's tested positive on this ( for coeliac) "twice" .
    Then had 2 colonoscopies done .

    Vitamin D deficient too - test results were well below
    .50 (came in at 23.7) so well below acceptable range .
    Now take vitaminD supplements forteD3 .
    Plus have hypothyroidism - underactive thyroid .
    Quite a few autoimmune things going on plus coeliac
    is an autoimmune condition .

    First one - diverticulitis diagnosed
    Second one -coeliac diagnosed

    Yep - unfortunately you will need to eat gluten/wheat
    pre-test to give a positive diagnosis .

    I ate lots of it - to prove my point about my own wheat/gluten
    intollerances with my gastric consultant.
    Went :mad: mad at him over this as he initially didn't believe me :meh:

    Took me 3.5 weeks to get better after doing this .
    Never again ever - as too sore and painful :inpain::arghh:
     
    #12 anna29, Jan 6, 2015 at 3:54 PM
    Last edited by a moderator: Jan 6, 2015
  13. CarbsRok

    CarbsRok Type 1 · Well-Known Member

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    Can't see why you need to see a dietician, just eat gluten free it's quite simple.:)
     
  14. Ladybird1

    Ladybird1 Type 1 · Active Member

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    Hi CarbsRok, that's what I thought about the dietitians, still waiting after 4 weeks to see them. Consultant told me to wait but how long do you wait? Going to get some gluten free food and see what happens without them.
     
  15. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    Having Coeliac, especially when newly diagnosed, it's like a minefield and not easy :( you have to follow a strict gluten free diet for life.

    2. See your local Dietitian
    After diagnosis you should be referred to a Registered Dietitian. If you are not referred, make sure you ask your GP or consultant for a referral. The dietitian will provide you with practical advice on how to follow a gluten free diet and assess your food intake to ensure you meet your nutritional needs. You will also be given information on special gluten free products.
     
  16. CarbsRok

    CarbsRok Type 1 · Well-Known Member

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    Yes I know that and it's quite simple to follow and understand.
    Just make sure you read all labels before purchase or consuming products. I'm if I managed to do this on my own then others can do so as well.
    Coeliac soc have lists of GF foods and the www. also has plenty of info.
     
  17. anna29

    anna29 Type 2 · Well-Known Member
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    I see the head dietician to discuss my problems
    with foods and other options to use when am
    with limits to things .

    I am allowed so many units of gluten free foods
    via GP prescription .
    Only choose a couple as most on this list of scripted foods
    are very carb loaded .
     
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  18. CarbsRok

    CarbsRok Type 1 · Well-Known Member

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    I'm glad you noticed the carb laden foods on offer. I told the pharmacist they were very unhealthy for anyone let alone anyone with diabetes.
    Only bread I have found that I like is the Genius triple seeded loaf, which isn't on prescription as classed as luxury! It's the lowest carb option at about 14 carbs a slice.
    The units prescribed are a national thing and it depends on your age and gender as to how many points/units you can have.
    I refuse to use the prescription foods due to the carb content and most shops have a very good selection of GF foods available now anyway.
     
  19. anna29

    anna29 Type 2 · Well-Known Member
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    This is exactly why I see my dietician and avoid most
    items on the free foods list !
    Am so tiny - cant afford to lose any more weight especially off my legs/arms/bum .
    Hence why the head dietician is handling my case .
    Have very little appetite too - which adds to the problems .

    I only use the wafer thin crackers low carb and the rice krispies low carb .
    Checked the carb info on packaging plus my own BG ranges with them .

    I do feel so restricted with some foods due to the flare ups of coeliac
    and need updating on new things from the healthcare point .
    They are keeping their eye on me - with being complex and tiny .
    My units were prescribed as per my age ,weight ,gender, BMI too .
     
  20. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    I see mine once a year, and have a blood test too and then the results are sent to my GP and a copy, via letter, is sent to me. So once a year is fine for me and also the reason for seeing a dietician is you can ask questions regarding foods or if you have a query,worry or concern you can talk to them, if they can't deal with it then it would probably be a referral.
    Big Coeliac downside is eating out. Neighbours invited myself and teenager to a birthday bash meal on Friday night, but............... it is at a Italian eaterie called Frankies up near the town's Leisure park (with a Macdonalds drive through,Cinema, Bowling alley, Aqua drome , Ice rink), which seems to have gluten laden fast foods on offer :mad: :eek: This is the second time I have been invited there and when I previously rang up (twice) to enquire about menu choices, no reply. So a tad :mad:
    If we weren't offered this service, many could be put at future risk and we would be moaning about the lack of care :wideyed:
    RRB :)
     
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