The Knowledge Board:
Coeliac Disease
Hi I'm Belinda
I'm your community manager at The Patients Voice. If you would like to leave a comment please click on link at the bottom of the page.
You can reach me at belinda.shale@healthcarelandscape.com.
If you have not done so why not join The Patients Voice by clicked on the Join TPV tab on the navigation bar above.
Welcome to our new research blog into the symptoms, treatment and diagnosis of coeliac disease. This condition has several other names, including: cœliac disease (with ligature), c(o)eliac sprue, non-tropical sprue, endemic sprue, gluten enteropathy or gluten-sensitive enteropathy, and gluten intolerance.
The purpose of this blog is to help us plan a research study into the needs of patients with coeliac disease. It is an opportunity for you to raise particular issues which concern you so that we can feed those into the next stage of the research. We are interested in the views of both sufferers and the carers.
If you are interested in participating in the next stage of the study for which you will be rewarded please feel free to join our The Patients’ Voice – our research community of patients and carers.
Please note that there are a number of different spellings of the condition. For example Celiac or Coeliac. Please feel free to use which ever you prefer.
Here are some questions we'd like you to address but do feel free to talk about any part of your story.
- What were your original symptoms? When did they start to appear and at what age?
- How did the symptoms develop?
- How easy was it to get a diagnosis?
- What kind of tests did you have? e.g. endosopy or a blood test
- What do you think of the benefits of screening for coeliac disease?
- How easy is it to keep to your diet?
- What do you think of the currently available information regarding the condition?
Thanks very much in advance for your help. Please feel free to check back on the blog to see what others have said and perhaps contribute further thoughts.
To participate all you need to do is type a nickname of your choice and then put your comments into the box. Your comments are anonymous of course!
I look forward to reading your comments and, of course, thank you very much for your input.
Best wishes
Belinda
The Patients Voice The Patients Voice is one of the many patient-focused services from Healthcare Landscape. Healthcare Landscape is a medical and healthcare research company, which conducts interviews with all the different kinds of people involved in the healthcare process. They range from patients and their carers, to medical professionals like nurses, pharmacists, physicians and academics. Our mission is to find out what they think and what their experiences have been.
We can interview over the web, at home or at a special research facility; depending on what type of study it is, the choice is often yours. We also run patient diaries and blogs, so you can air your views as honestly and informally as you like. We want to ensure that you have access to the best research experience, and in turn, our clients will learn from your story. Our clients are quite diverse. They range from pharmaceutical or medical device companies, to charities and government bodies. The Patients Voice is open to anyone in the world who wants to give an opinion and would like to try to make a difference. This forum gives you power by allowing you to get YOUR VOICE HEARD.
You should always consult your physician regarding any medical issues. While we attempt to make sure the information on this site is as accurate as possible consulting a medical professional is always to be advised.
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