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Just Diagnosed


Cindy Jenkins

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Cindy Jenkins Newbie

Hello my Niece has been Diagnosed with Celiac Disease and I am trying to get information for her.  She is still in the Hospital for the 1 billionth time.


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ravenwoodglass Mentor

Welcome. You have found a great place for information and support. There is a 'Newbie 101' thread at the top of the Coping section. That has a great deal of good information for her and other family members.  You are a wonderful Aunt to try and help her get used to the gluten free lifestyle. It can be a bit overwhelming at first for both the person diagnosed and their family. Hopefully the hospitalizations will soon be a thing of the past but it can take some time to fully heal. If she has any brothers or sisters they should be screened along with her mother and father.

Jmg Mentor
2 hours ago, Cindy Jenkins said:

Hello my Niece has been Diagnosed with Celiac Disease and I am trying to get information for her.  She is still in the Hospital for the 1 billionth time.

Welcome :) 

It will doubtless be a big shock for your niece and family, but the good thing about celiac is that once gluten is eliminated from the diet recovery can be dramatic. I hope she's soon feeling better and the hospital visits become a thing of the past. 

The best book I've read following a recommendation here is: Real life with celiac disease by Melinda Dennis. 

 

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    • par18
      Thanks for the reply. 
    • Scott Adams
      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
      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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