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gluets

By gluets
in Publications & Publicity

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gluets Newbie
gluets
Posted

Fellow Celiacs -

Nine months ago I was diagnosed with Celiac Sprue disease and I have to say it's already been a tough, tough year, but the changes I've had to make in my lifestyle haven't been the most frustrating...it's been the medical care -- or lack thereof -- that has really gotten my goat!

The doctors that I have come across either don't take the disease seriously enough or don't know enough about it. Well, I've decided to take some action, and you too can help out if you want to.

Since I'm a writer by trade, I've decided to write a book entitled: "What you don't know, might be killing you! A Celiacs Guide to Life," which can be a great reference guide to newly diagnosed Celiacs as well as those who have been living with this dreadful disease for years. I already have a publisher on board for the project and with your help fellow Celiacs will no longer be kept in the dark about the mysterious disease.

The book will not only inform the readers as to what Celiac Disease is, it will also have recipes, a list of gluten-free products, a medical expert to give invaluable advice on the disease and most importantly, true stories on fellow Celiacs like yourself.

If you want to get involved, it won't cost you anything but your time. Just email me your story or stories related to the disease, especially how you were diagnosed [the average diagnosis of Celiac Sprue disease is 12 years!!!!!!!!!]

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Guest Guest
Guest Guest
Posted
Fellow Celiacs -

... the changes I've had to make in my lifestyle haven't been the most frustrating...it's been the medical care -- or lack thereof -- that has really gotten my goat! --Rob

Rob,

You've hit the nail, or should I say numbskulls, on the head. Glad to learn that someone is finally going to expose the nearly total ignorance of the medical profession concerning celiac disease. There's been more written lately about this condition but nothing that I'm aware of addressing this aspect of it. Your book is sorely needed and maybe, like Rachel Carson's "Silent Spring," will galvanize a sleeping medical establishment, and government and, perhaps more importantly, the general public, into taking action, or demanding that appropriate action be taken. They could start with routine testing for children before they enter school, as they do in some European countries.

I'm willing to tell my story, though it's not much different from countless others told here on this board, but because I can't definitely say that I have the condition (waiting for EnteroLab to confirm what I believe is celiac disease, but may be a wheat allergy instead) I think it's best to wait until I do get the results of the test, which will be in about three weeks.

Good Luck with your project.

Aldo

aldociao Rookie
aldociao
Posted

Rob,

Just to further identify myself. I had forgotten to log-in. --Aldo

mmccliment Newbie
mmccliment
Posted

Rob,

I'll add my "it's about time" as well. I'm sure all our stories are somewhat similar in nature - it's a great thing you're doing!

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