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For All Of The Ones Waiting For Recovery :)

aikiducky

By aikiducky
in Coping with Celiac Disease

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aikiducky Apprentice
aikiducky
Posted

How long it's going to take to get better has been up a lot lately, so I pricked my ears when I came across this just now : "I’ve increased the [follow-up] biopsy interval from one to two years because only 40% of people had complete recovery after 12 months gluten-free." This was in an article on the celiac.com site, by William Dickey, a gastroenterologist at Altnagelvin Hospital, Londonderry, Northern Ireland, with over 400 celiac patients attending his clinics. :)

Pauliina

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Claire Collaborator
Claire
Posted

Thanks for posting this. Too many on this forum have been lead to believe that the healing process is fairly immediate. It most definitely is not. Perhaps an authoritative statement like this will insert a little reality here. I was given this two year figure as a minimum. Claire

minibabe Contributor
minibabe
Posted

that is really depressing :(

I have gone to gluten-free restaurants and I have gotten glutend from them. I was only dx about a little over a year ago and the last three times that I have been to PF Changs I have been contaminated. I am very sensitive to gluten and I can tell with in 1/2 an hour if I have eaten the wrong thing. I am so careful and I really enjoy going out to eat, and that is why I go to gluten-free restaurtants, but I cant rely on anything.

Thank you for the information I really appericate it :)

Amanda NY

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    • par18
      Is it gluten?

      By par18 · Posted

      Thanks for the reply. 
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Is it gluten?

      By Scott Adams · Posted

      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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