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My Sister Was Recently Diagnosed With Celiac

Diane2007

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Diane2007 Newbie
Diane2007
Posted

Hi,

Since my sister told me that she was recently diagnosed with celiac disease, I have been lurking on this site to try to educate myself about celiac disease. I figured it was time to register and get acquainted. I have been helping her by sending her links to articles, info about celiac disease, recipes, etc. Like many of you, she is overwhelmed with the gluten-free diet, etc. I went to Borders and purchased Celiac Disease, A Hidden Epidemic, read much of it, and have urged her to buy it as well. I found this book to be very helpful. I couldn't believe it when she told me the only thing her doctor told her was that she had celiac disease, sent her to the nurse who then gave her a print-out of recipes - that was it! After reading the book, I am dumbfounded.

After learning about her dx and reading the Celiac disease book, I began to wonder if I might have celiac disease. I have had a life-long problem with overwhelming fatigue. I have been troubled recently with an itchy rash on my back and a bit under my arms. I went to my dr and he took a quick peek and said "you have eczema". When my UC was diagnosed 5 years ago, I did have a strange quarter-sized rash on the inner aspect of my elbows. I mentioned to my doctor that my sister had just been dx'd with celiac disease, and he very reluctantly ordered blood tests. The results came back negative. I was diagnosed with ulcerative colitis about five years ago, so I do get diarrhea occasionally and have had that off and on most of my life. I am currently in remission with the UC, however. :)

Well, that's about about me and my sister. I hope to "meet" many of you and learn all I can about celiac disease.

Thanks for reading my introduction.

Diane

Count Your Blessings, Not Your Worries

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2Boys4Me Enthusiast
2Boys4Me
Posted

Welcome to the board Diane. I'm sure you and your sister will find lots of information and good recipes here as well.

Ursa Major Collaborator
Ursa Major
Posted

Hi Diane, and welcome to this board.

The blood tests are quite unreliable, and yield many false negatives. It is well known that ulcerative colitis can be caused by celiac disease, as well as rashes.

You might want to try the gluten-free diet, to see if it helps you as well.

Your sister is blessed to have you helping her figure things out, and finding information for her.

Nancym Enthusiast
Nancym
Posted

I've heard the "Gluten Free for Dummies" is a helpful book. I think the author lives in my city too. :)

Celiac.com of course is terrific. And this web site. :) A local support group might be really helpful too. And yes, I'd suggest you think about giving the diet a try. You might be surprised how good it makes you feel!

flagbabyds Collaborator
flagbabyds
Posted

gluten free for dummies is very good. it is written by Danna Korn who started the children's celiac support groups around the cuontry (ROCK( raising our celiac kids) and she live in San Diego if you were wondering.

Diane2007 Newbie
Diane2007
Posted
  • Author

Thanks so much for the replies.

My sister emailed me yesterday and she has purchased the book Celiac for Dummies.

I am thinking about going on a gluten-free diet as a trial. I have felt so sick for so long that if there is the slightest chance it could be gluten-related, I am willing to give it a try.

Thanks again!

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