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Just Diagnosed

Cindy Jenkins

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Cindy Jenkins Newbie
Cindy Jenkins
Posted

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
ravenwoodglass
Posted

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
Jmg
Posted
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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      Dermatitis Herpetiformis Cleared up With EpiPen, etc.

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      I had to rush to the hospital last week due to anaphylactic shock from taking a dose of an antibiotic. Received EpiPen, steroids, antihistamines, zofran (all injected/IV). When I woke up the next day, ALL of the rashes I've had that started since going gluten free were cleared up. EVEN THE dermatitis herpetiformis was gone. Has anyone else experienced this or happen to know why that would happen? The meds they gave me were all meds that I've taken to try to resolve the rashes, but they never worked in pill form. I'm wondering if it the addition of the epi that helped, it if injected steroids and antihistamines were what did the job.
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      Test interpretations

      By Dr. Gunn · Posted

      Exactly! Negative genetics can rule out celiac disease with close to 100% certainty. It takes tTg antibody testing and biopsy confirm the diagnosis in a genetically susceptible individual. 
    • trents
      Test interpretations

      By trents · Posted

      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population will develop active celiac disease. It remains latent until triggered by some stress event which may or may not occur. So, there is a genetic component to celiac disease but there is also an epigenetic component. 
    • Dr. Gunn
      Test interpretations

      By Dr. Gunn · Posted

      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life. 
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