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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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      It’s true that awareness of celiac disease can vary among physicians, particularly outside of gastroenterology, and many patients end up educating their own providers. Reaching out to someone you trusted for 25 years makes sense if you felt heard and supported. That said, celiac disease management often benefits from a team approach, including a knowledgeable primary care provider and, when needed, a gastroenterologist or dietitian familiar with gluten-related disorders. Advocating for yourself is not unreasonable—it’s part of managing a chronic condition. If your current provider relationship isn’t working, it’s appropriate to seek care where you feel respected and properly supported.
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