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Awaiting test - told to eat gluten (tmi advice support)

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TheLittleFangs
TheLittleFangs Posts: 205 Member
in Social Groups
Hiya all,

I'm Lucy I'm happy for adds to my FL too.

My battle with tummy issues goes way back to 2002, in 2003 I had a celiac test blood borderline result. Diagnosed IBS.

Struggled along for years.

Since Jan my system has super kicked off again and I've had several bouts of bowel bleeding. Yesterday and last night were very scary and I went off to Dr today. she was lovely did internal exam ruled out piles/tears and is running a barrage of bloods including celiac retest.

my question is how much to eat? I kinda really cut it down/out practically as I connected the issues to these food groups. I'm scared to go back up and eat it again. obviously I also want to know finally if this is the problem.

please treat me gently. I'm new and I'm also going through mental health issues now too

they're ordering me a colonoscopy as well I think.

thank you for help xxx

Replies

  • mmebouchon
    mmebouchon Posts: 855 Member
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    It sound like you are going through a horrible rough patch. Did you get any answers?
  • lithezebra
    lithezebra Posts: 3,670 Member
    edited August 2015
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    I'm in a similar situation. I gave up wheat, felt a lot better, and now I have to eat wheat again in order to be tested. I've read that it's ideal to eat gluten everyday, as in one serving of something like bread, for about 3 months. (I was doing that, but I keep missing days, and eating a bite instead of a piece of bread, because I don't feel quite as awful when I have less).

    Good luck! I would search on Google Scholar for peer reviewed recommendations on how much gluten you need to be eating.
  • anglyn1
    anglyn1 Posts: 1,802 Member
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    How much/often are eating gluten now? You might be ok if it's not been completely eliminated. Also are you having an EGD (the upper part of the scope) or just the colonoscopy? If so the EGD can confirm celiac even if the blood work comes back negative.
  • TheLittleFangs
    TheLittleFangs Posts: 205 Member
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    HI lovelies! I'm so sorry for the delay. Well I officially feel awful the blisters on my hands have come back out and my head and my hairs falling out. I am waddling walking around like 9 months pregnant with raging pins and bleeding frequently from my bowels. Whatever is going on wheat and or gluten DEFINITELY play a part.

    I couldn't bear it any longer and went for the blood test yesterday.

    I'm waiting for the gastrointestinal colorectal appt to come through but I really want to stop eating it now. Like today :( but that appt mat be weeks off and obviously I don't want to drop it if I'll still need to be eating it for that test.

    xxx
  • anglyn1
    anglyn1 Posts: 1,802 Member
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    Do you have a dermatologist? Dermatitis Herpetiformis is a blistering rash that comes along with Celiac disease in a lot of cases. I would show the rash to the dermatologist so maybe you can get diagnosed that way and quit eating gluten!
  • TheLittleFangs
    TheLittleFangs Posts: 205 Member
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    anglyn1 wrote: »
    Do you have a dermatologist? Dermatitis Herpetiformis is a blistering rash that comes along with Celiac disease in a lot of cases. I would show the rash to the dermatologist so maybe you can get diagnosed that way and quit eating gluten!

    Hiya I'm in the UK I don't. I have a General Practitioner and I've had my gastrointestinal referral. All the advice seems to be keep going with it until the tests are concluded but I'm having a day off it tomorrow.

    Thanks though. I've seen lots if different pictures of DH and a couple have been similar to mine, little fluid blisters that then peel.

    I'll hopefully get the bloods tomorrow but as I'd only been eating it properly a couple of weeks I don't know what to expect x

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